The Feeling Griefy podcast!

This blog is slightly different than normal, as it is introducing something else I have been working on… a podcast!  It’s something I feel nervous to share because it’s really quite personal, but it’s also something I am proud to share. Because it is an attempt to explore the nitty gritty of grief. The minutiae of a feeling I wanted to google after my Mum died when I was 20, and it dawned on me that I even though I was technically ‘grieving’, I had no idea what that actually meant.

podcast thumbnail lino print designed by amelia Mccurdy (inspired by my coffee and croissant moments for mum)

Was the low I felt in the quiet moments walking back from the tube or on my way to the shops grief? Or was it only really grief if I was crying and thinking of Mum? If I went out with friends the month after Mum died, did that mean I didn’t miss my Mum enough? Or was I being too detached with my feelings that everything would come back to bite me in years to come? What was a product of my grief, or a product of being in my early twenties when a lot was changing already?

In the same way falling in love can distort other feelings and make you feel like a different person, grief can do it too. It can make you grief sick. It can make you feel like a stranger to yourself. It distorts your senses and muddles your mind. However, unlike love, and the multitude of songs, books, poems and films we have about this huge umbrella of a feeling, there isn’t much for grief. And grief is also an umbrella of a feeling. It mixes with all our life experiences and outputs something we weren’t always anticipating. Like washing new clothes for the first time, everything feels different afterwards.

me and patrick !

To keep going with the falling-in-love analogy, imagine after obsessively thinking about someone in those early days of a relationship, you don’t know whether that’s normal or a sign of madness. Or if the butterflies you get from a text are excitement, unease or even a tummy bug (I’m stretching this I know). What I am trying to say is that when we know the different shapes and sizes of an experience and the colours of feeling it brings, we are less inclined to overthink it. It becomes more normal. More expected. This doesn’t take away from the intensity of the feeling. Knowing your finger might bleed and sting after cutting it doesn’t make it hurt less. It just makes it a bit less scary.

This was why I wanted to start a podcast. I wanted to be able to be able to explore how the experiences in your twenties are warped and distorted as a result of grief. How feeling griefy intertwines with friendships and interferes with work. How grief can influence relationships and breakups.  Because grief demands vulnerability and so do relationships and at times, this can be a tricky one to navigate. I also wanted to talk more about death, because this is something we don’t hear about. One of the reasons I didn’t talk about death with Mum was because I thought it would make it happen faster. That simply by talking about life after Mum, we would be accepting fate and giving up. Which is completely and utterly wrong.

I couldn’t write a blog and not include a picture of my beautiful mum

Together with one of my best friends Patrick (who also happens to be a radio producer and knows how to make a podcast!) I attempt to explore what is under this umbrella of grief…

We laugh, I cry and we drink tea.

Here is the first, short, introductory episode. This episode introduces the whole ‘Feeling Griefy’ series. We talk about why I decided to start a podcast, what ‘feeling griefy’ even means and why my thumbnail is a coffee and a croissant. I even go on a tangent about how to make my Mum the perfect cup of tea.

I’ll be releasing the other 5 episodes altogether next week.  If you ‘follow’ the podcast series, it will tell you when the episodes have been released – I think…!

I want to post a few pics to go with each episode, so have also made an Instagram account (for the first time!) - you can follow me here.

I hope you like it xx

Five years of feeling griefy

When someone asks me how I am feeling, and I am in a state of more acutely missing my mum, it can be hard to know what to say. I can’t exactly go: ‘Oh I’m just currently experiencing a big wave of grief, how about you?’ because that just sounds a bit ridiculous. But I also don’t want to reply with the more palatable: ‘I’m ok’ because that’s just not true. So, I’ve begun to say I feel a bit ‘griefy’. It allows me a degree of sincerity, but not at the cost of making things awkward.

‘Griefy’ is my more-frequent-than-flu, but less-frequent-than-hunger, state of being. It peppers my days and weeks to different degrees. Sometimes, it’s an undetectable lapping at my feet and I just get on with my day. Other times, it comes up to my ankles in cold little bursts. And then, on some days, it is an all-encompassing, full-on soak. I ache for Mum. I feel sick with sadness. Suddenly the fact that I will never see her again comes burning through my consciousness and I can’t believe I’ve made it this far knowing such an awful thing. 

Naturally, a large part of grief is missing someone you love. But attached to this, already momentous, task is a huge lump of complicated and messy sadness. It’s a sadness that disrupts everything you’ve ever known. Nothing can be the same, because suddenly everything in your life is viewed and experienced through the lens that is grief. And that view is everchanging. As well as the despair at not having Mum around anymore, I dreaded this uncertainty. I wanted to know what I might feel and when. I wanted to know how long it would last, and when it got easier. Grief is understood as a ‘natural’ response to loss. But in its organic depiction, it first seemed to me more like a weather system where my options were to just sit there and battle the elements, or shelter from it completely. There was no in-between.  

When Mum first died, I wanted to google how to grieve…which didn’t really help very much

Over these past five years, I have found a degree of control over my grief and how it manifests. I am not as helpless as I first thought. To continue with the weather analogy, I know when to bring a brolly outside… or what clothes to wear when it’s drizzling. I also know when to shelter completely and lean into the brain’s dangerous, but wonderful, ability to distract itself.

What I am trying to say is, I can’t always predict my weather system of grief, and I definitely can’t – and won’t – ever stop missing Mum, but I can find control in how I respond to the duller aches and twinges of it. I can untangle this huge lump of sadness and find words to explain how I am feeling to myself, but also to other people. I can figure out what helps me feel better, so when I have to ride the wave of deep, dark emotion that can be grief I don’t get drenched in the process.

Here’s a little bit about what griefy means for me, 5 years on.  

Symptoms of feeling ‘griefy’:

• I’m oversensitive to small, insignificant things (this is a big sign I’m feeling griefy – it’s my brain trying to latch onto things that can be ‘fixed’ and controlled).

• I am constantly tired without having had any late nights (emotions are really draining).

• I crave quiet home time. I almost want to hibernate.

• I am reminded of Mum at every moment. It’s like when you really fancy someone and can’t get them out of your head. I think of Mum and how she’s not here all the time.

• I can’t remember a time when I didn’t feel weighed down by emotion, even though there have been lots of moments in which I have been free from it all. My brain forgets that truth, and all I can think about is that this is for forever.

• I harbour a quiet frustration at the fact my Mum died when I was 20. Perhaps if I was experiencing the same feeling aged 5, it would result in me stamping my feet and screaming (but because I am 25, I don’t do that). I feel it is deeply unfair that I have to miss someone forever.

• I flit between being ready to cry at the smallest of things, to feeling quite out of touch and numb with emotion.  

There is also a lot that I can’t distil into bullet points because it sometimes just doesn’t make sense. Missing someone can leave you with this messy mass of feeling that makes it hard to pinpoint where exactly the feelings even came from in the first place. So here is a rough attempt at untangling some of the mess that can’t be bullet pointed.  

beautiful mum

It’s missing someone when you know you can’t see them ever again. And rarely does forever mean anything until you have to miss someone forever. It’s like trying to comprehend how large the universe is, because that’s the only thing I can think of that goes on forever. And that is impossible. So, it feels a bit impossible sometimes. And the impossibility of missing someone forever is daunting. And then because it is daunting, and impossible, it is exhausting. It feels like this never-ending task. And when you’re exhausted it’s harder to rationalise with yourself. And then your brain does this clever thing where it fixates on a really small insignificant thing because that thing can be controlled. And that thing is less impossible and forever than the bigger thing you have in your way. And then because you are feeling less rational, you are less able to recognise that the small insignificant thing is not actually that important. But still, you waste energy thinking and caring about it. And then you become sad and bothered by the smaller thing. And you know you shouldn’t. And you question what that means about yourself. Where is your positive mindset! Where is all that emotional wisdom! Not to mention the fact that you have had an experience that lots of people say gives you perspective… but your perspective has all but gone. So, then you think you’re not grieving properly. And alongside these new despairing thoughts, you are still caring about a seemingly unimportant thing. And the one thing that will help with these conflicting feelings, is talking to the person you are missing.  And then you remember that that’s an impossibility. And then you miss them even more. And it goes round again. And all the things I’ve just written mean it’s suddenly hard to pinpoint that what’s really making you sad is you miss someone. And it is that simple. It’s just the feelings that come with it can be nonsensically blinding.

Some antidotes to feeling ‘griefy’:

Croissant moments

I spent the first year after Mum died wanting to know when and how I would feel better. I now accept that I won’t ever not miss Mum, so I need to have a toolkit of things to help alleviate the missing. That is where I can find control and manage the life-long condition that is grief. It’s a care, not cure, situation.

Here are some of the things I have found that help me:

• Grieving is tiring and there are the well-known antidotes to emotional exhaustion (early nights, hot baths with candles, quiet alone time to recharge…).

• I run a lot when I feel emotionally sticky and that helps me feel less weighed down by heavy emotions.

• If I am really drenched in emotion, listening to a sad playlist, with an eye mask on (I’ve got a lovely lavender scented one) and candles lit in my room gives me the little nudge I need for a cry. I create the space for sadness and try and lean into it (rather than overthink the feeling or push it away). I really recommend this for when you feel paralysed with emotion and don’t quite know what to do with yourself. Of course, there isn’t a genre of songs about people dying – or maybe there is, and I haven’t found it yet - but the classic heartbreak, sad, minor and melodic songs will do.

• Finding a ‘Mum moment’ in my day. A Mum moment is essentially a treat that reminds me of Mum. For example, Mum loved warm croissants with marmite and butter and when I feel a bit low, I will carve out some time for this treat. This delicious moment gives some joy and relief to an otherwise sad feeling.

• Having a big, gut wrenching, cry (this is the antidote of all antidotes).

• Knowing my grief ‘triggers’. When I know what things mix badly with grief, I overthink the feeling less. Rather than thinking ‘I feel really low’ and berating myself for my lack of energy, I think ‘No wonder I feel a bit funny today, I did x, then y and also didn’t sleep well the night before last…’ It gives me the permission I need to feel what I am feeling.

• Anticipating when I will feel a bit sad and preparing for it. This is why it is good to know your triggers, as then you can plan for them (like bringing an umbrella outside if you think it might rain). For me, tiredness is a huge exaggerator of grief, and so I am careful to avoid late nights ahead of days that I know might be more emotionally taxing.

• Making a concerted effort to have ‘quiet’ days and knowing when to say no to plans. Grief requires a lot more energy than people might ordinarily have to give, so I try to be very conscious and deliberate with where that energy goes.

• Actively making ‘good’ days… like on the 15th February. The 15th February is the anniversary of when Mum died, and naturally isn’t the highlight of my calendar year. However, I have so many days that are coloured by sadness, so on the 15th I will do the opposite and fill it with treats. It is a day in honour of Mum, and Mum would definitely want me to have some indulgent days because of her. She’d hate to think that her death has only given me the excuse for sadness. I have taken the day off work (as I plan to do for the rest of my life – I can’t bear the thought of treating this day as any other). My day will be filled with croissants, coffee, olives and champagne as well as a hugely indulgent facial and manicure (outrageous). It is a day I have actively been looking forward to.

‘Mum moments’ - a wonderful print by my wonderful friend amelia

 After Mum died, I wanted to ‘google’ grief, and maybe everything I have just written is what I hoped I would find.

*

 Grief will forever be the little thorn in my side that I get used to (and can’t quite understand how), until I move ever so slightly the wrong way and I feel its sharp point. The feeling of hitting that sharp point is when I feel ‘griefy’. I still cry, I still miss Mum and I still have days of utter sadness. But I am definitely less afraid than I was by it all. I feel more in control, even if that control is all just an illusion.

Grief is Pants

When I was 16, I asked if Santa could get me some nice pants. I didn’t mean really fancy pants, but I equally didn’t mean pink polka dot cotton pants. Santa got me the latter; a pack of four of them from M&S. Along with a pink polka dot pair, I got some stripy bright orange ones, ones with blue and pink stars and a lime green pair with orange trim (the least offensive). Upon opening, I realised I maybe should have been a bit more specific. If I had younger sisters, I might have thought there had been a mix up. This had happened very occasionally throughout the years when, as I began to unwrap a present, Mum would exclaim ‘ooops I think Santa meant this to be for Tom’. A comment like this would normally be cause for concern (how could Mum know what Santa had wrapped?), but due to expert diligence on Mum’s part for the rest of the Christmas preparations, it didn’t arouse suspicion.

oPENING OUR PRESENTS FROM SANTA (AGED 2 AND A HALF)

Here – as a side note - I have to highlight how Mum really was an expert in the Santa department. She went to extreme lengths to ensure the magic of Christmas and our belief in Santa lasted as long as it could. The wrapping paper used to wrap our stocking presents was never the same as the paper used for our ‘under the tree’ presents. In fact, there would be absolutely no trace that the wrapping paper ever existed outside of the stocking in the first place. It would be an obscure pattern on a roll Mum found in a random gift shop, rather than the much cheaper alternative in Sainsburys that we were likely to spot during the weekly food shop. Our presents would also never be delivered to the ends of our bed until Mum and Dad were absolutely sure we were asleep (which meant they were often very bleary eyed and tired the next morning). As Christmas time came around, Mum was on high alert for any mentions of ‘stocking fillers’ (be it within conversation or in the magazine section of a newspaper). She used a special kind of voice when referencing Santa in front of friends and family which I would later come to understand as her ‘don’t listen to my words listen to the tone of my voice’ voice (a parental classic). My belief in Santa was so well protected, it meant I was one of the last of my friends to find out (aged 9, while having a nit check in the bath).  

So anyway, these pants were for 7-year olds, and they had ended up in my stocking. I’m not sure what Mum was thinking.  The next year, to overcompensate, Santa gave me some Rosie Huntington-Whiteley red, lacey fancy pants. Two pairs of them and a matching bra.

cHRISTMAS WITH TOM (and a baby william not in the picture)

8 years on, I still have these red pants. Both are ripped, and ragged, but both stay permanently in my drawer.  They are the pants I wear when I’m overdue a clothes wash. They are great lazy day pants. Perfect period pants. Soon they will end up as crotchless pants (a far cry from their pink polka dot ancestors). But there in my drawer they will stay. If I was Marie Kondo-ing my clothes I could find a number of reasons why they bring me joy (or at least reasons why these red pants have taken on a deeper meaning than Rosie Huntington-Whiteley could have ever anticipated).

At their simplest, these pants remind me of Mum’s tendency to always ‘upsize’ on trousers. Whenever I was buying a pair of pyjama bottoms or comfy trousers, Mum would get me to imagine tossing and turning in bed at night. She’d re-enact a leg wriggle to remind me of the need to make sure they weren’t too tight, and that the crotch wouldn’t ride up. I recently treated myself to some linen pjs, and every time I wriggle around in them, getting comfy at night I think of my Mum. It’s quite a gentle and simple reminder of her ongoing presence in my life, and I am grateful for it.

When Mum first died, suddenly everything she had ever said or done took on a new layer of importance. A fleeting comment made a few days previously, now counted as one of the last things she had ever said to me. A seemingly mundane action was now a final memory. Without warning, my dose of Mum was up. I had my total amount of Mum memories, and it was up to me to remember them all. I had a feeling similar to that which accompanies an unexpected, out of the blue, mock exam that your teachers set you at school. There is the panic that you hadn’t had any warning to remember all the important bits. I saw my memories of Mum in a jam jar, filled to the brim, that in time would deplete. 

the pants in question looking pretty with some dried flowers

My immediate solution to this was to revise my most easily accessible memories of her. I’d replay small, mundane moments of Mum coming into the kitchen, or sitting down to eat dinner with us… as if careful, intricately remembered in motion memories were the epitome not forgetting someone. However, I then worried these more prominent memories (mostly related to the two years Mum was ill) would override the smaller, sweeter memories. I would rack my brain for new ones. But then it was a bit like when someone asks for your three favourite songs, or a book you really recommend, and you can’t for the life of you think of anything. I’d feel like I had lost all my memories, so I’d go back to replaying the main few in my head again. A cyclical memory dance that wasn’t very productive. It distilled Mum into her ‘Top 10’ memories, rather than as someone with 46 years of life and nuanced experience.

My red pants provide me the chance to attribute them a memory, put them in a drawer (literally) and then years later come back and find it still intact. Like a shop you might find in Diagon alley, where you bottle up a memory into a jar and it sparkles purple and shimmers around the glass. My pants are the muggle version of this. A Mum memory stored in cotton from India and with an M&S label.

The pants also symbolise having had a Mum. A Mum who did Mum things like buy me pants. As much as Dad does an incredible job as a sole parent, there are a few things that he just can’t do (like pant buying in M&S).  

Matching jumpers from a market in FRANCE - MAY 2016

A few months after Mum died, we were going to a family wedding and I wasn’t sure what to wear. I asked if Dad would help contribute toward a new dress; something I was sure Mum would have considered because she was the go-to for requests like that. I had never had to ask Dad. 

When Dad told me this was something I should maybe buy myself, he probably couldn’t understand why I burst into tears and found that so hard to accept. From the outside, it must have looked like I was being an ungrateful, spoilt child. This was also only a few months after Mum had died, so I couldn’t recognise the currents of grief that ran through this reaction. I couldn’t articulate myself and felt guilty for this expression of emotion. I wasn’t an ungrateful child so why was I acting like one?

Now I can appreciate that it wasn’t about the dress at all, it was what is represented. When Dad said it was maybe something I should buy myself, I couldn’t then ask Mum. I couldn’t actually ever ask her again.

It might sound trivial, but that was a part of my Mum experience, and something I miss on a superficial level. I miss being bought presents I didn’t ask for from Mum at Christmas. I miss going shopping together and choosing new work outfits for her. I miss going for massages on our birthday or sneaking to the local Japanese restaurant when we didn’t have the energy to cook lunch (and telling the boys we were just going for coffee). I miss the unexpected Mum treats.  Dad helps with the big stuff (like setting us up with pensions…) and Mum did the smaller treat stuff. I think this is an interesting part of grief; there is sadness for a whole range of things that are both deep and seemingly trivial, but part of the Mum package.  I miss chatting to Mum, confiding in her, hearing her advice, and also being bought things like pants (even if they are with pink polka dots).

muM AND DAD TEAM

This also taps a little into the dynamic that is lost when losing a parent. Mum and Dad were a team, and where Mum was stricter about some things (like bedtimes), Dad was stricter about other things (like food waste, and shoes not cluttering the hallway). Suddenly, it felt a bit off kilter when one person that has normally been there to balance the other is gone. Dad was always Dad with Mum. I didn’t know it then, but as well as grieving for Mum, I was grieving the Mum and Dad team.

As time has passed, I have come to understand that remembering Mum, and feeling close to her, doesn’t literally equate to having a jam jar filled to the brim with memories. It is much more nuanced than this (and doesn’t rely on revision of any kind). 

One of my ways of remembering Mum is by wearing my red pants. If it is not the pants, it is the coffee and croissant moment. Sometimes it is spraying her perfume on before an important meeting. Other times it is rubbing my top lip with my index finger when I am thinking (a Mum quirk). I suppose what I am saying is that my closeness, and memory of Mum comes in lots of different shapes. Some pant sized; others not so pant sized. But they are always there, ready to connect me with Mum and bring her into my present.  Forgetting her isn’t even an option, so there was no need to worry in the first place.  

(And also - grief really is pants)

The Evolution of Grief; Four Years On

For the first few months without Mum, I saw grief as an annoying younger sibling that wouldn’t leave me alone (and from which I got very good at dodging). It pestered me for attention. Like the nonchalant nods and ‘ahhhs’ adults might give kids to feign interest in what they are doing, I would occasionally acknowledge ‘it’ when I spoke to other people. I’d half-heartedly mention I would ‘give myself some time’ (whatever that meant) and smiled when people said I should let myself be sad. I didn’t want to tell them I wasn’t that sad at all because then they might think I didn’t love my mum as much as I did. In fact, maybe they would think something was wrong with me and my ability to grieve. I marvelled at my coping skills, wondering if anyone else could see it too. People told me I was ‘doing so well’, but I didn’t know what they meant. Did they mean that because I wasn’t crying, I was doing well? Or it was because I was still smiling and acting ‘normal’? But then if I did cry loads and acted ‘abnormally’ would that have been a bad thing? I felt like I had something to prove but I wasn’t sure exactly what.

MAY 2016

At this point, grief was something to be done with. All I needed to do was give it a bit of my time, and then I would have done my duty. Like a Rumpelstiltskin spin off, I saw an intense cry each week as my payment to the creature that was grief. Check box ticked. 

Crying, being sad and thinking of mum was grieving. Going about normal life was not. I either did one or the other. I didn’t know how to merge the two. A bit like Jekyll and Hyde, I had my pre-mum dying self which I went to lengths to uphold, and this incredibly emotional, low and conflicted self with lots of restless energy.  The latter often came out in those mundane ‘to’ and ‘from’ moments in life when you are moving from a to b. Like trudging home from the shops carrying lots of heavy bags or walking back to the flat after a long day at uni, wondering what I’ll cook for dinner. In those moments the sadness would creep in, and lick at my ankles as I walked. I envisioned grief as the enemy whose aim was to bring me down to the pits of sadness. It was a battle of good versus bad and I would win by trampling on it and resisting it with all my might. How dare it try and underscore my day to day with sadness. How unfair to not only lose mum but to have to be completely sad about it as well. 

ruNNING IN FRANCE - AUGUST 2016

I ran nearly every day to bridge the two selves together. I’d start the run as my ‘pre-mum dying self’ and end in tears as the grief stricken ‘post-mum dying’ one. The jagged breaths and heaving chest tricked my body into crying and I would succumb to the feeling of being completely overtaken by sadness. But aside from these outbursts of intense emotion, I resisted all other manifestations of grief. I didn’t want to feel low. I didn’t want to understand the enormity of what had happened. I didn’t want to have to miss mum. In fact, I just didn’t want to have to live without her. Rather than try and confront the feelings and make space for them, I clung to my old self and my old reality. I bargained that my big cry after a run was me grieving and I could try and just get on with life in the interim.  Any change in myself, my emotions and my routines took me further away from Mum, and who I was when she was alive. They were an implicit acknowledgement of her absence and this life I didn’t choose. They were a collusion with the creature that was grief, and therefore, I had no choice but to resist it.  

Except, the more I completely ignored the sad feelings, the more uncomfortable and unsettled I felt. Like after a long day at the beach, I wanted to wash myself clean. Each ignored and resisted emotion stuck to me like gritty sand between my toes and I craved the feeling you get when you dump all your beach bags at home after a long day in the sun and then strip off and shower. I wanted to do that with grief. I wanted to find the grief equivalent of washing the salt, sand and sun cream off my skin, putting on fresh clothes and feeling clean again.   

I’m not sure when the transition came but soon my narrative of grief evolved from being seen as a thing to resist-up-until-the-point-of-a-dramatic-cry, to something to confront. My story of good versus grief wasn’t really making me feel much better. In fact, I felt completely exhausted trying to keep the sad feelings at bay until a point was reached where a dramatic cry would follow. I needed to find a way to eke out the feeling and make space for it. While I still saw grief as completely unwelcome, I realised I at least needed to try and confront the feelings head on. 

RIVER SWIM - AUGUST 2016

Part of this lessening of resistance to the sadness was because I didn’t have the energy to keep up trying to be ok. It was completely exhausting. Another reason was the decision to start therapy, and suddenly having this space to venture into the depths of emotions I had been avoiding for so long. During therapy, I was forced to puncture my week with sad emotions even if they weren’t ready to spill yet. I learnt to yo-yo down to them and back again. The more I did this, the more practiced I became in getting to the depths of sadness without fearing I wouldn’t come back. 

I look back on how my understanding of grief has changed over these past four years, and a great deal of this changing narrative was a means to control the uncontrollable. A way of figuring out how to miss Mum but which made sense to me. I can’t get rid of the absence, but I can be aware of how it makes me feel. I can try and decipher the twinges and aches and those tell-tale signs of grief creeping back in. And when these feelings creep in (manifesting as a restless energy, a deep exhaustion or a fixation on something small) it is my cue for quiet time. I need early nights, long mornings in bed with tea and my book, and few plans in my day. 

A holiday adventure for mum - JULY 2019

But then it tugs at me and this huge feeling I’ve spent so long trying to understand, and somewhat prepare for, is back. And I didn’t expect it. I am immersed in it again. And even though I know I will be ok afterwards, and I know what it is and why it’s important to feel it, it is still nauseatingly painful. I am bluntly reminded that I can’t ever hope to completely control the power and pervasive influence that loss can have. It will forever be a powerful disruptor that will warp my perception of everything and sometimes drive me crazy in a way I can’t ever fully understand or even articulate. Grief has evolved from something to resist and fear, to now something to experience and understand (but not ever completely). 

* 

So often we want something to ‘fix’ our problem. We want a solution and an ‘I’m going to feel better when’ point. However, there is no ‘solution’ to losing someone you love…and I think this was the hardest thing to accept when Mum died. I couldn’t understand how I would ever feel better – fully better – if Mum could never come back to life.   

These past four years, I have had to break down the when-am-I-going-to-feel-better feeling into a when-I-am-going-to-feel-better-than-I-feel-now feeling. I have had to accept that there is no magical state to reach in which a loss is completely fine. It’s an up and down journey, and forever will be. 

BEAUTIFUL MUM

While there are a lot of things I am uncertain of – like how grief will continue to manifest throughout my life – there are quite a few things I can be certain about. I am sure in the knowledge that after I have a huge, body shaking cry, afterwards I will feel better. I know that a string of low days will at some point end. I know that early nights make me feel better able to withstand the trickles of everyday grief. I also know that fancy olives and oat milk hot chocolates bring me joy, and that warm croissants with Marmite and butter remind me of Mum. I know that breaking down the day into moments like this – with a beginning middle and end – makes the unimaginable reality of my life without Mum more manageable. I have little ‘solutions’ to feel better in my every day, rather than waiting on my big (and unattainable) solution of seeing Mum again.  

*

“You don’t forget the person who’s gone; you can never do that, and you should not worry that you’re going to. But you fold them, and their loss, into the new person you become; and maybe that, in the end, is the greatest tribute any of us can make to anyone who has died.”

— Julia Samuel (Grief Works)

Birthday grief

 A few weeks ago, Ned celebrated his 17th birthday. Whilst we all sat in the garden chatting as Dad lit the BBQ, it dawned on me that being all together as a five without Mum no longer felt like we were rehearsing for real life; it actually felt like it. Squabbling for space on our garden bench (the only piece of outside furniture that isn’t completely broken) and reaching across each other for the olives and crisps reminded me of all the times we had done the same when Mum was alive. Instead of beer, we would have been pouring glass after glass of 7up or coke (a normally forbidden drink), but the setting and celebratory feel would be the same. 

Mum fostered within us the ‘birthday bug’, something which caught hold in the week leading up to the big day. In fact, a fast approaching birthday was so powerful it even afforded benefits in the days preceding it.  ‘It’s my birthday in a few days’ was a refrain used frequently to relinquish us from cleaning up after dinner or taking the dogs on a walk. We brandished it like a get out of jail free card, secure in the knowledge that the others would reluctantly accept its legitimacy, knowing when their birthday came around this free pass would be theirs.

Mum’s daily reminders to not go snooping in her bedroom for presents coupled with the fizzy anticipation of having a whole day where we got to decide on everything left us weak at the knees. A whole day of our siblings being nice to us, where we didn’t have to do any chores and got delicious food and presents. It was like a real-life dream.

My 19th birthday

The night before, Mum would carefully arrange our presents and cards in a washing basket, tie a balloon to it and leave it outside our bedroom door (a hazard we had to remember to avoid if stumbling to the loo in the morning). Upon waking up with the glorious realisation that the rarest event of the year had arrived, we would charge into Mum and Dads room lugging our present basket with us. As we bounded into their bed, with our siblings trailing behind us belting out happy birthday, Mum and Dad would sit up dazed and sleepy eyed, sneakily checking we hadn’t broken the not-before-7am-rule. Once the birthday boy (or me) settled in the warm spot right between them (the best place on the bed), Dad would go downstairs to prepare the ‘breakfast tray’; an assortment of fruit and innocent smoothie (with some marmite toast and tea for Mum). While we feasted on our treats, present opening would begin with Mum carefully watching and noting down every gift we received and its sender (for the dreaded thank you letter writing activity later in the week).

After the final present had been opened, we would leave Mum and Dads room littered with wrapping paper and bring our new toys downstairs to the kitchen to play with while we ate our birthday cereal (the sugariest one we had been allowed to buy). This was also the point at which Mum would have to console a jealous younger sibling who, after being carried along with the excitement of the morning, suddenly realised how much they wanted the Lego castle and light-sabre their lucky brother had received. Perhaps if we were being generous, we might let them play with us over breakfast. But until then, they remained spectator to our birthday luck, feeding our hugely inflated birthday ego and making us like our presents even more. 

The day went by in this buzz of contagious excitement. Mum loved birthdays, so we all loved birthdays.

* 

Ned’s 14th birthday was his first birthday without Mum.  Tom was on his gap year travelling around India so it was just me, Dad and Will at home to try and foster some of the birthday bug in him. Dad and I knew the drill well, and our plan was to make the day as exciting as possible to try and offset some of the sadness that might creep in. Maybe if we spoilt him and filled the day with surprises, we could make it a little less obvious that Mum wasn’t here to celebrate with us…

NeDS 14TH BIRTHDAY

I put myself on grief patrol, and my supplies were preparation and presents. I didn’t mind spending hours in the normally overwhelming and brightly lit Sports Direct seeking out every present on Ned’s list. I was more than happy to patiently queue between towering shelves of trainers and baseball hats, growing increasingly flustered by the loud music and fluorescent signs. Never before had I wrapped presents with such gusto (and so neatly as well!). I was going to make sure the washing basket was piled high, and even more I was using ‘Frozen’ wrapping paper to make the day even more light-hearted and fun. A birthday without Mum? No biggie.

Except, despite our attempts to follow the same traditions as normal, it just felt like we were putting on a show with an ill-rehearsed ensemble. It didn’t have that electric birthday feel that filled the days when Mum was alive. Of course, as you get older birthdays lose a bit of their shine and the sibling jealousy of new toys had ended long ago, but this birthday just felt a bit off. It didn’t feel like it counted because Mum wasn’t there with us. In fact, it felt like we were celebrating a pretend birthday on a randomly picked day of the year. Rather than manifest as sadness, grief was masquerading as an uncomfortable weight in my chest. I was unsettled. I was uneasy. But I was definitely not ‘grieving’. 

a BIRTHDAY WALK (i’ve gone from tallest to shortest)

This reluctance to properly acknowledge that I might be grieving came from this distorted idea that grief was the enemy. It was a battle of good versus bad and I would win by trampling on it and resisting it with all my might. How dare it try and underscore Ned’s birthday with sadness. How unfair to not only lose mum but to have to be completely sad about it too. Rather than sit with this foreign feeling, I was going to use my powers of rationalisation and state-of-the-art coping skills to battle it away. I wasn’t even going to call it by its name.  

Grief at this point symbolised pieces of a puzzle that put together represented a life without Mum. But I wasn’t ready to accept this yet. Rather than distinguishing the different sad feelings that swelled within me, I saw grief as one uncomfortable and messy mass of emotion. My job was to carefully smother it with a thin layer of happiness (like you would cover a messy structure with tarpaulin); something which gave me a temporary sense of being ok but didn’t quite get rid of the weight of discomfort. If any sad feeling did peek through, it was so hard to distinguish from all the other emotions lumped together, that I could create my own narrative to understand it.  I could attribute it to tiredness or to that uneasy feeling of waiting for a reply to a text from someone I quite liked. Rather than see it as grief-shaped sadness, I could let myself think it was about something else that I could fix. I kept the indistinct shapes beneath my emotional tarpaulin (if there is such a thing), as indistinct as I could.

birthday breakfast now happens at the kitchen table (before a game of monopoly deal) you can still spot the birthday cereal…

BIRThDAY bbq (the piles in the back are my attempts at some lockdown gardening)

I have found that in the three years since Mum died, I haven’t got rid of this mass of emotion, I have just got better at recognising its contours. Sadness feels less like an enemy and more like another part of myself that I just hadn’t really known very well before. Time hasn’t ‘healed’ the wound, it’s just given me more of an opportunity to understand who (and how) I am when I am sad. I know that sometimes grief manifests as a momentary low. Sometimes it’s a refreshing cry. Sometimes it’s an all-consuming feeling that drains me and tangles up every other emotion (this is one of the worst forms). Other times it’s a dull ache, that I can prod at like a sore tooth. This is by no means a completed task, and I will be forever learning about these different manifestations of sadness. However, untangling the threads of each emotion makes them more predictable and familiar. It gives me a sense of control and makes the feelings less terrifyingly unknown. 

Whilst there are multiple reasons why a birthday three years after Mum died is easier to celebrate (the shock of her death is less, for example), making space for my sadder emotions means I am not on constant alert for grief to appear unannounced. I’m not ‘battle ready’ all the time – an exhausting state to be in. On Ned’s 17th birthday while we all talked over each other and squabbled about the music, I felt present and engaged in a way I hadn’t three years ago. I wasn’t afraid of grief infiltrating on the day because actually, if it did, I knew what to expect.

p.s it’s my birthday next Friday

Three years on: Remembering Mum

This is a blog all about my wonderful Mum. I worry that in writing about grief she becomes a ‘third person’ and quite abstract, so I want to humanise her. As well as being a hugely passionate and articulate maternal healthcare campaigner (see the Guardian obituary below), she was also a bit forgetful and sometimes clumsy. She loved seafood and lattes and Scandinavian crime dramas and hated scary movies and getting her headphones in a tangle. I want to tell you about these things that made up the littler parts of her. I want to give you an impression of my hugely fierce and energetic mother who I have missed more and more for now a nauseating 1,095 days (3 years).

* 

Mum was beautiful, but particularly so when she smiled.

She didn’t have a very intensive morning routine. She would wake up, tune in to Radio 4 from her phone, and then apply this deliciously thick Dr Hauskha rose face cream over her face, being sure to remember her neck. Then she would hastily apply some black eyeliner, a bit of mascara and she was done. It took about 5 minutes.

At the weekend, Mum would appear in the kitchen with her bath-wet hair (she rarely used a hairdryer and didn’t own a hairbrush), a handful of washing under one arm and papers in the other with her laptop balanced precariously in there as well. Her hands would be carrying as many mugs and glasses as she could, after a steady collection from her room to the kitchen. Behind her would be a trail of socks.  I would know Mum was coming down the stairs if I could hear the clinking of glasses against the mugs and the slow shuffle as she attempted to balance everything carefully in her hands. The smell that would follow would be a mixture of the shea frizz control hair cream she used, her perfume (Issy Miyake for most of my childhood) together with the faint rose scent from her face cream.

Mum on her wedding day, aged 24

Often, when Mum entered the kitchen, she would have an earphone in her ear from the audiobooks she enjoyed listening to, or from being on the phone. She would forget they were in there and sometimes it looked like she was listening to something when actually nothing was playing. I had to remind her on many occasions to take them out because otherwise it looked rude. I think this was probably also Mum’s attempt make sure she didn’t lose them or get them tangled up. Getting her headphones in a tangle was one of her biggest pet peeves. if someone was calling and she hadn’t had the chance to untangle them, you would see Mum with her head in an awkward position, trying to speak into the headphone microphone while her phone had to be held close to her face so the headphones weren’t pulled out.  

Mum lost things frequently. I have many memories of her exclaiming ‘my phone!?” and then rummaging about through her bag, with a strained look on her face as she tried to find it. It was immediate panic, probably because Mum was so used to losing things and always assumed she had left it somewhere (she once left an expensive ring Dad had bought her after I was born in a public loo on the motorway after taking it off to wash her hands). This propensity to misplace things was one of her reasons for having a bright red phone case, so she could more easily spot her phone in her bag. I didn’t really think it made a difference. It probably would have been easier to have less clutter to sort through (although I know Mum would vehemently argue that it’s not fair to call it clutter when most of the times, she was carrying things around all of us might need…)

Mum was also a bit clumsy. I used to get frustrated when she was carrying out a task really deliberately and slowly, but now I understand she had to overcompensate for her clumsiness and be extra careful. I do exactly the same now. I remember when I was 12 and on my first trip to town alone with friends, I used my pocket money to buy a really nice pair of silver dangly earrings from Claire’s Accessories. When I went to try them on to show Mum, in my excitement I dropped one and it fell through the floorboards in our kitchen. I was mortified. I remember Mum saying that that used to happen to her all the time, and she had to learn not to get attached to material things because she would always end up spoiling them. This was one of the reasons Mum didn’t buy expensive things. Cashmere jumpers would end up with splashes of oils on them, woollen jumpers occasionally left half the size they started out as and white tops speckled with faint red stains from Dad’s puttanesca sauce.  

In France the summer before mum was diagnosed again

Mum could be a bit forgetful of the smaller things, which is something I have inherited (I like to attribute it to my genes). On a holiday to France, the first summer I had started the contraceptive pill, I realised I had forgotten to bring enough for the whole 4 weeks we were away. Mum got really angry at me in the vegetable section of the supermarket, and said I needed to be more responsible about things like this and take it seriously by planning ahead properly. It turned out she had also forgotten to bring enough of the pills she was taking (Tamoxifen, an oestrogen blocker she took after the first time she had cancer) so we had to ask my boyfriend at the time to go to our house and send both mine and Mum’s pills to France. I remember feeling secretly triumphant it hadn’t just been me forgetting. 

I think this openness with Mum about my life and relationships began when I realised she was very good at soothing worries, and making me feel better about even the most ridiculous things. The first time I actively opened up to Mum was when I was about 6 years old. We had spent some of the afternoon in a bank while Mum sorted out a problem with her card. While waiting, I had slowly filled my flowery bag with about ten of the mini pens they left around for people to fill in forms (one in each pocket and a few to fill the main compartment). When we got home, and I saw how many I had taken, I realised this might count as stealing.  Mum could tell something was up as I sat mute on the stairs, looking pale and forlorn at the thought that I could go to prison and that the police were probably already on their way. Mum gently said something like ‘Ella, you know you can talk to me about anything that is on your mind and we can make it better’ and after a bit more coaxing, I sat on her lap while she patiently listened to me confess my crime. After I had said my piece, Mum told me I didn’t have to worry because those pens were free, and it wasn’t stealing at all. In just a few words, my knotted stomach unwound itself and all of a sudden life felt better again. The relief was immense, and I vividly remember that feeling of worry dissolving to nothing, all as a result of a conversation with mum. 

Mum said she had been a big worrier when she was younger, and I think this made her extra sympathetic when I came to her with my worries. There were multiple occasions when I would pad down the stairs in the middle of the night to her side of the bed and tell her about my fears of being evacuated to the countryside (this happened when learning about World War One) or of super volcanoes (when I learnt about them in geography) or even worries about  terrorist attacks on our house. She would tell me worrying wasn’t going to change anything, and that if anything happened, she would be there with me. Every worry felt justified and important in Mum’s eyes. She never once remarked ‘don’t be silly’ and I think this paved the way for open and honest communication into my teens.

beautiful mum

Before bed, and these moments of tossing and turning in worry, Mum would read to us. We moved from Horrid Henry, to Roald Dahl to Harry Potter. When Mum wasn’t reading to us all and found a moment for herself, she would often read historical fiction. She enjoyed stories about the Queens of England and my favourite thing would be when she would re-tell these stories to us on walks or in the car on long journeys to Wales. Whenever we visited castle ruins, she would get us to imagine what each of the different rooms were for, painting a picture of what life could have been like then. If ever we listened to classical music in the car, to our loud protests of ‘noooooo this is so boring’ she would ask us to imagine what scene was being depicted…was it a King and a lady in waiting falling in love, or a fight on the battlefield. She’d tell us to close our eyes and really listen.

Mum told us only boring people got bored, which was enough incentive to always try and find something to do. On walks when I was really young, she would tell me stories about fairies and how they might use parts of a forest for their homes. We would seek out big green leaves and ponder over what a fairy might use them for. Perhaps it would be a skirt or a dress, or if the leaf had a particularly deep indent it could be used for bathing. Daffodils always presented themselves as the most multi-functional fairy piece, with their delicious floral scent, deep cylindrical tube in the middle (perfect for a skirt) and the six identical petals surrounding it (potential seats for a table).

While Mum had a brilliant imagination, it didn’t extend to her cooking. Her three signature dishes were: big roasted portobello mushrooms with pesto and parmesan, pastry parcels filled with goats’ cheese and pesto, and a mackerel and rice mix with spring onion and olives cut in (but if you dare suggested to Mum that she couldn’t cook, she would angrily reply that it wasn’t a case of inability, just of choosing not to invest time in it).

Most of the time, when Mum and Dad found an evening for each other, Dad would cook for them both. Past 9 o’clock was their time. At the weekend, while Mum read to the boys upstairs, Dad would lay out treats for her while he cooked. I remember the indignation of being told it was past nine and ‘Mum and Dad time’, particularly when I saw the delicious treats laid out so lovingly for Mum.  It was the only time I ever wrote notes to my parents in capital letters, telling them it was so MEAN and RUDE to not be allowed downstairs with them when my friend Molly ALWAYS had dinner with her parents. I would stick this to their bedroom door or slide it into the kitchen, making sure to do so with great stomping and show. Mum was always less sympathetic to my cries of mistreatment than Dad. Sometimes, while sulking in my room, I would hear a knock at my door, and when I opened it there would be a tray prepared by Dad on the floor, of fizzy water in a wine glass, Jamón prepared just how Dad made it for Mum (with a drizzle of oil and sprinkle of black pepper– it looked very adult), a bowl of black olives and a handful of kettle crisps. Dad does this for me now sometimes, bringing up olives and crisps (with a glass of wine this time) when I am working in my room. It’s my favourite treat.

I could go on and on…

Mum on her honeymoon in italy

Sometimes I look in the mirror and try and spot the parts of Mum in me… but I feel like a lot of our similarities are more evident in our expressions. I use my hands a lot when I talk, which Mum did too, and it’s comforting when I sometimes catch myself in the mirror while talking, sporting a similar expression to Mum. I can’t quite capture the meaning of these moments, but it’s a reminder that part of Mum lives on in me and I feel this strange power that I can remind myself of her. This makes me feel a bit more comforted that when the time comes for me to have children without Mum there (the most heartbreaking, heart aching thought), I can give them an essence of the grandma they will never meet through my actions and my words.  I can tell them stories of Kings and Queens of England, walk through forests and look out for Daffodils, and every time they are clumsy tell them about all the times Mum was a bit clumsy and forgetful. I want a bank of anecdotes to pull out at every moment so she can become part of their everyday. Having kids is of course a long way off, but milestones like today, remind me of these potential future milestones. When I think ahead to a future without Mum and how grief will manifest itself, having kids seems like it will be the most visceral and true reminder of her absence because suddenly she will become an absence to someone (these fictional children) by default.  Day to day, I create a new reality without Mum physically being here and I can try and shade in the parts of my day where I would need her with other moments and distractions. But in my imagined future, having children seems like an unavoidable full-frontal collision with grief.

I want to keep Mum alive as much as possible. I want my Mum to be known and talked about and remembered. Writing is one of the ways I can do this (along with showing off about her many achievements and abilities in the same way you might name drop a celebrity). Three years have passed, and not a day has gone by where she hasn’t been a part of my every day in one way or another. Missing her is a daily practice. Sometimes it is more pronounced and other times just a soft ache, but it is always, always there.

Mum’s obituary in the Guardian:

The Guardian

A year out

Two days after Mum died, I deleted all of our messages. The image of me lying on my bed, sobbing and woefully scrolling through every text conversation we ever had made me feel sick. It felt like the worst possible torture to be able to access something that gave a sense of immediacy and ‘reply’ but was now just another acknowledgement of a definite end to a conversation. It was also disorientating to think that I could still ring Mum’s phone or send her a text. That even though Mum no longer existed, her phone and that virtual space for conversation did. When I swiped my finger across the screen and hit the red delete button, I had a feeling I suppose someone might have if they dismantle a bomb…extreme example I know but I really believed I had identified a dangerous, sob-inducing, painful trigger and successfully eliminated it. It was one of the first things I did in a bid to control the uncontrollable. Grief 0, Ella 1. 

Step two in my master plan to overcome grief was to figure out how to grieve well. Like an exam that could be prepared for, I wanted to make sure I was on top of whatever ‘grief’ meant. Along with deleting all of our messages, I wrote a detailed to-do list. I needed to talk to my tutor about all the uni I had missed. I needed to reply to the lovely messages that I had received. I needed to buy some books on grief… I thought they could help send me in the right direction of what I should or shouldn’t be doing. I just needed to figure out what it meant to grieve (something I thought google could help me with), find a way not to miss Mum and then not have to be sad. When I put it like that and reasoned with myself in that ridiculous way we are all capable of, it seemed completely do-able. I didn’t think Mum would actually ever die and that happened, so my sense of what was possible and impossible was all a bit blurred.

This attempt to try and control grief characterised a lot of the first year after Mum died. It was a mentality that was very much shaped around trying to keep everything just as it was before. Even seeking counselling in my third year of uni gave me a sense of control.  Five months of counselling gave me five months of structured crying. It became the one hour a week I would properly cry for Mum, tearing up as soon as I walked through the door into the wonderfully snug room with discreetly hidden tissues and a sofa that swallowed you up when you sat down. It became a space where someone would ‘hold my hand’ while I ventured into the depths of emotion I was teetering around but too scared to feel alone. It also had the added benefit of giving the impression (to myself more than anyone) of ‘doing the right thing’. In my head, I could neatly box what it means to grieve into my one hour a week of counselling and feel pleased that as much as everything else was out of my control, at least I would know when I’d be bursting into tears and where exactly I would be. This made my completely helpless situation a bit less helpless. I think for a while I thought I had cracked it.

Mum graduating from cambridge… i wish i had asked more about this period of her life but i didn’t know that would be a question i would have until i graduated

But then uni was going to finish and I would no longer have the structure it bought to try and slot grief in. I couldn’t use my dingy Camden basement room and the snuggly warm counselling sofa as my ‘crying space’, and exam halls and libraries as places I knew wouldn’t make me cry. I couldn’t distract myself with essays and revision and use them as quantifiable markers to prove that life was going on as it should, and that I was grieving well (because surely if I managed to get good marks that meant I was grieving incredibly well?) But I also felt completely unsettled at the thought of trying to find a graduate job and then having a rigid amount of holiday, making that formal transition into adulthood where I most definitely would have to work on my birthday. I had a feeling I can only describe as similar to the one you get when you are not sure if you left the oven on, and you can’t fully engage in the present because your mind is partly preoccupied with a potential fire at home.

So, I decided to take a year off and it was quite a relief to have an excuse not to have a definite plan for the year. In your third year at uni you are often confronted with the question ‘So, what will you do after uni?’ Instead of having to fumble around for an answer that sounded legitimate, I could just say I was taking some time off to process the past few years.

Mum in her early twenties looking beautiful

I particularly liked the word ‘processing’ because it sounded quite purposeful and what you should be doing if you were in my position. It was also met with great understanding, like everyone else agreed that ‘processing’ was exactly the thing to do. There were many conversations with sympathetic nods and tuts of approval at this decision to essentially stop what I might otherwise have been doing, and consciously pause for a year.

I occasionally felt indulgent at the thought of going back home and actively avoiding any job that required a university degree and had the word ‘graduate’ in. I couldn’t tease apart whether this was a plan taken because it was something I should be doing or actively wanted to do. I also wasn’t too sure if I completely needed it (which I think came back to always wanting to appear completely able). I would enviably listen to friends plans that fit the description of post uni life (as if there is such a thing) and wonder what it would be like to not have a huge gaping hole in your life where your Mum should be. What a relief it would be to not have anything unbearably painful to cry about all the time. Taking a year off for the main purpose of giving myself ‘space to grieve’ was a big acknowledgement that life had changed. If Mum were alive, she would have helped me figure out what to do next and even if it involved moving back home, she would be there with me. It was all a bit daunting.

A boxing day walk

The biggest worry about taking a year off with no definite plan and for the purpose of ‘grieving’, was I had no designated checks to make sure I was where I was supposed to be, given the circumstances. I almost wanted a manual where I could tick off grief milestones. Was crying more a good sign? Getting upset near Christmas felt more grief-like so maybe that was a positive sign. How about spending a day lounging at home, reading the papers and then getting into bed about 5pm to watch a new series… was that a part of the processing? I knew organising Mum’s clothes probably counted on the higher part of the processing scale but that seemed too big a task and so I just told myself I’d get onto that later.  On the other hand, long walks in the countryside seemed pretty process-like and do-able, and films always did a good job of making the characters look wistful and like they were properly mourning the loss of their loved one. But my long walks with the dogs often involved making sure the younger of the two (Melka) steered clear of bigger dogs and didn’t get the chance to viciously bark at them. I couldn’t see myself having any life-changing epiphanies about death while holding dog poo bags and scanning the horizon for Labrador sized dogs.

If I’m honest, I half expected the ‘processing’ to be like in films when the main character confronts the perpetrator and says something a bit like ‘come on then, what have you got for me’ (awful screenwriting from me but I hope you get the gist). Or when someone walks straight into the battlefield towards the oncoming army. I wanted to feel all the bad things grief and missing Mum was going to make me feel, but all at once and intensely. I wanted to get it over with and make the most of the space I had carved out to grieve. I think by this point, rather than completely avoiding it, I was aiming for ‘efficient grief’. I longed for immediate and obvious results and wanted to end the year having figured out a way to grieve that was reflective of the intense love I have for Mum but wasn’t too intense that it inhibited functioning ok and moving forward with life. This seemed a completely impossible and contradictory task.

Upon reflection, I was completely overthinking how to grieve. But I don’t think that was entirely unexpected as I have a tendency to overthink lots of things so of course it would apply to this as well. Facing my second scariest childhood fear (the first fear was both parents dying) was terrifying. What on earth are you meant to do when your Mum dies? How do you live without someone you have only ever been alive with? It’s a nauseating, disorientating and completely helpless situation to be facing. To compound this, normally if I was ever in an unsettling and stressful situation I would talk to my Mum and have her guide me through it. Now I didn’t even have that. It was like learning to walk again with a completely different pair of legs; foreign, unnatural and only comfortable in certain positions.

I wanted someone to tell me the order of what happens because I was exhausted at the thought of facing years of figuring it out myself. I longed for a rough timeline of grief so I could at least know what to expect and not have to contend with dreaded unpredictability. I wanted someone to tell me with complete certainty that it will get better. But what does it even mean to get better? There are so many aspects to it so while some things feel better, other things can feel worse… and then those things that felt worse feel better again and vice versa... there is nothing clear cut and linear about it.  

Maybe grief is a bit like the deep cold river

I already recognise that I’m understanding my grief more (and I use the word ‘my’ because it is so completely personal and unique). It doesn’t change that it hurts; it just means I’m better at dealing with it. I know that when I’m tired it hurts more. I know if I’ve been too busy to think about how it’s there it can become an unbearable hurt. I know if I’m a bit hungover, my hurt can become irrational and focused on other things. I know that the hurt warps my other emotions and sometimes I can’t distinguish between them very well. But I also know that by some miraculous feat of human nature, I can feel the hurt and be ok. I won’t ever not be sad about Mum not being here. That impossible task still remains impossible (and rightly so). My power lies in learning to recognise how the sadness feels, how it manifests, and how I can try and be ok with not always being ok.

I only thought about the fact I had deleted all my messages to Mum the other day. I had never had the urge to scroll through our old texts and never thought twice about it. It was an action I couldn’t undo and like the permanency of death I couldn’t hope to change it. The completeness of it was comforting. But now the image of a gut-wrenching cry on my bed doesn’t seem so bad at all. Sometimes it is nice to not always be in control and ultimately grief has its own course. It’s like the children’s book ‘We’re going on a bear hunt’. I can’t go under it, I can’t get over it, I’ve just got to go through it.

I’ve written a list of ways in which I grieve (which might not even count as grieving) that I will post, but for the moment this is very long blog so I will leave it here. Thanks for reading till the end (!)

A holiday for Mum

A week before Mum died, Dad and I were sat on her bed trying to get our heads around what was happening. Mum was about to go into hospital to have her abdomen drained of the liquid that had built up. This is called ascites and a sure sign that the liver is struggling (although it is only on reflection that I will admit this). Suddenly, everything was feeling a bit out of our control.

I was sat by Mum’s feet at the end of the bed while dad lay next to her. I felt sick. I had butterflies in my tummy that were making me all jittery in anticipation for the conversation that was coming. I wanted to leave the room so I could cry without them seeing. But I also wanted to stay, so I could reassure Mum it would all be ok. What I didn’t want was to be 20 anymore, I wanted to be 6. I wanted to be at an age where you still believe in Father Christmas, and the tooth fairy and the invincibility of your parents. I wanted to give up all responsibility and maturity and lie in my bed watching something until the adults had made everything better again.  

On the bed, Mum said if she died, we were to go on a big holiday altogether. She made us promise. I wanted to tell her off for being so silly to suggest that was going to happen. I kept a jokey tone and told her we’ll have the best and biggest holiday and it won’t be such a bad thing that she has died at all because we’ll all be having so much fun. All the while I was pinching the top of my thigh tightly between two nails to stop myself from bursting into tears. Mum smiled as I said this, but I could see her trying not to cry as well.

I eventually left the room to cry upstairs. The conversation was too much to take in. We had never properly said the words ‘if’ and ‘die’ together out loud, with sincerity and so seriously. They had an been unspoken possibility that I had made a good attempt at ignoring. While I was old enough to know parents are not super human, I don’t think I had fully accepted that they can die before they’re meant to. I had this misguided belief that if I didn’t think it, believe it or speak about it, it wouldn’t happen. However, despite all my desperate hoping and wishing, 10 days after this conversation on the end of mum and dad’s bed, the worst did actually happen. Over two years later, the promise I had jokily agreed to came true.

There were many conversations on where we should go. Tom suggested a safari trip because Mum loved big adventures and travelled to Africa a lot for her work. I thought that while an adventure that big sounded fun, I liked the idea of lying on the beach reading, relaxing, eating delicious Asian food and not having to move around so much (I’m not lazy I just wanted calm). Not only that I wanted time for just us 5, and to do a safari privately for three weeks would have cost a LOT of money. After months of conversations and careful planning from Dad, it was decided we would be going on a three-week trip to Singapore, Sri Lanka and the Maldives. We were going to pick Ned up from Singapore, then fly to Sri Lanka and have an adventure travelling around in a minivan for a week, and then have 10 days enjoying the luxuries of an island in the Maldives. We would be going to the same place Mum and Dad had been three months before she died. It sounded like the perfect mixture of adventure, relaxation and comfort. 

We had been on holiday altogether since Mum had died but always to a place where we had spent many summers before as a family of six. This would be the first time we would be doing something completely different as our new unit of five. It felt both exciting but daunting. Never before had we gone somewhere so new without Mum there to negotiate packing, planning and travel. She was queen organiser. Give her an overpacked suitcase and she would quickly know how to fold, roll, squeeze and discard until it all fit into place and zipped up easily (‘use the insides of shoes’ was one of her favourite tips). She always carried around a bum bag that was packed so tightly it ended up looking like a small handbag that she had tied around her waist. Inside there would be a supply of anything we might need. Snacks, antibacterial wipes, water (one of those mini bottles), hand sanitiser, tissues, cards (always Uno), passports, boarding passes and then more snacks (when Ned was younger, he was always hungry). Every time she pulled something out, little bits of tissue paper would come out too, covering everything with white crumbs (Mum wasn’t as good at the unpacking of her bumbag as she was with packing it). Needless to say, going on a trip without Mum there directing felt like new territory and was another sore reminder of how much our roles had changed. Dad now took on masterful planning of the trip, I made sure we had a bag of games that I carried around with us everywhere (we have moved on from Uno to Monopoly deal, Rummikub and Boggle) and Ned took charge of making sure he had enough snacks. It felt important to be learning how to be a family of five without Mum there with us.   

For my whole life I had said I was from a family of six. It was a huge part of my identity. I am one of four and have always had mum and dad together as a team. When Mum died the fact that we were suddenly a family of five, with Dad now a sole parent, was the most painful acknowledgement of loss. Home didn’t feel like home without Mum there. As much as I could push aside sadness and hold back tears, I couldn’t shift the uncomfortable feeling of being in a rehearsal for our real life, waiting for things to revert back to how they were before. The empty place at the end of our kitchen table was a particularly sore reminder so I started to sit there, so it didn’t look so empty. Car journeys also felt really different because we no longer needed the back seats up in our seven-seater car. This meant we no longer had the traditional who’s-sitting-in-the-back argument and it all felt too easy sitting in a seat without having fought, pushed and shoved for it. Everything at home was tinged with Mum’s missing presence and unless I spent all my time in my room, it was hard to avoid.  

Over time this feeling of home being a foreign place has lessened. However, I still find myself much more emotional when all five of us are at home together. Being emotional means being more irritable and this does not bode well with having less space and quiet because of everyone around. Naturally this can result in more arguments. These often originate from normal day to day family chores (who’s walking the dogs) but are underscored and tainted with grief and emotion so suddenly (if I’m in an emotional and tired mood) a simple who’s walking the dogs discussion becomes why are you crying over walking the dogs which becomes why are you now sobbing over walking the dogs (remember this is simplified - I do cry easily but not to that extent!)  These discussions unwittingly morph into more acceptable outlets for emotion. It’s much less hopeless to think you’re crying over a disagreement at home than to acknowledge the fact that what you’re really crying about can’t be remedied. So, aside from the obvious excitement about going on holiday, I was also a bit apprehensive about spending so much time intensively together. While our trip would be a proper opportunity to get used to our new family identity and our different manifestations of grief, I was interested in how it would feel going somewhere completely new without Mum there with us.

Apart from this slight apprehension, I was really looking forward to going to a place Mum had been before. After someone dies there are of course no opportunities to make new memories or have any more conversations. All that I have are 20 years with Mum and 46 years of her life to learn about. Any insight into something she experienced is the closest I can get to talking to her about it.

There are occasionally moments when I remember a snippet of a conversation Mum and I had, or I realise there was more to a memory than I first thought. They come unexpectedly, sometimes triggered by a smell or a picture or a dream. I stash it away and hope for another little insight to come soon. It’s hard to describe how such small things take on a huge importance. How exciting it is to find something as simple as a shopping list, scrawled in Mum’s handwriting in the back of a notebook. I read it with complete concentration, and wonder what the list was for and when it was written. I hope for more moments like it and am so comforted when something comes back to me; a reminder that while I won’t make any new memories, there will always be the ones I have to uncover. Going to an island Mum had been before, treading the same ground as her and enjoying the same things she did meant I could more clearly imagine Mum being there. I could never ask her again about that holiday, but I could find out a bit more about it myself and from the memories triggered in Dad.

MUM AND DAD IN THE MALDIVES IN NOVEMBER 2016

WEARING ONE OF MUM’S DRESSes

Instead of describing our amazing holiday in detail I’ve included a few photos of it instead. Suffice to say, it was all perfect (aside from the big fact Mum was missing). Even the (very) few disagreements we had were good because they stayed small and felt grief-free. We got the best of each other and had three precious weeks to make memories as a five that were happy, normal and carefree. We spoke about Mum all time, and always raised our glasses to her in the evening. We would comment on things she would have liked, and things she would have hated. Whenever we ate at a buffet, we would go around the table deciding what Mum would have chosen. We always agreed on a huge salad (she loved salad) and whatever seafood there was. I packed some of Mum’s summer dresses, and every time I had a croissant and morning coffee wearing one of them, I could imagine her doing exactly the same. It felt like the first time I could simultaneously miss Mum fully but not be crippled by it.

I think Mum asking us to have a big holiday altogether was another way of asking us to keep having fun and making happy memories as a family like we would have done before. Her biggest fear was about how we would cope without her there. Whenever we were playing games, bickering over bedrooms and sneaking bread rolls into our bags from the buffet as Mum often got us to do (perfect Ned snacks) I knew she would be happy. It’s not often I can definitely say how Mum would have felt about something now she’s not here, but for the whole three weeks I could imagine exactly how she would feel to see that we were all doing ok without her. I think it would be a mixture of relief (lots of relief), contentment, comfort, but of course sadness that she was missing out on all these memories. However, even though she wasn’t a physical part of each experience, she was the reason the holiday happened in the first place, so every memory happened because of her. I think she’d be very pleased about that.  

Googling Grief

I had never spoken to anyone about grief and what it might be like if mum died, mostly because I would never acknowledge this possibility enough for a conversation.  It was a word I knew was related to death, but I thought that it just equated to missing someone, and crying that they have died.

What I certainly didn’t expect to feel when mum died, was relief. That was one of the few emotions I could accurately label. This pressure that had built and built and built was finally relieved. The worst had happened. I didn’t have to worry about anyone immediately, and after two years of worrying about mum, it was a foreign, but welcome feeling. Alongside relief, I suddenly felt this pressure to grieve. I also felt a pressure to be ‘good’ at grieving. I managed to do well in exams and lots of other things in life, so surely the same should apply to this. I definitely wasn’t reacting as you might expect you would after your mum had died. A lot of family and friends that visited looked visibly a lot more upset than me. Where was my uncontrollable wailing that you saw in films? I was even tempted to google ‘how to grieve properly’ as if, like a lot of things in life, I could prepare for it and know what to do.

At Mum's funeral... Being a bit numb to it all was very much needed to get through the day (also who would have thought you could still smile for a photo on a day like that)

For a while after mum died, I carried this fear that I was maybe coping too well and in years to come I’d break down with the weight of everything I had repressed. I felt a bit stuck because I didn’t know how to get the grieving process going properly… shouldn’t I be crying or missing mum already? I now recognise that I was in a state of shock (but I’d never have accepted it was that at the time). I couldn’t have begun to start processing everything straight away because it would have been too much to handle. In order to confront the constant stream of family and friends and condolences, I needed to be able to shut off the depth of emotion that bubbled beneath the surface. The shock helped maintain a sense of normality for a little while after and in many ways it was protective.

When mum first died, I’d have a sad moment, but could quickly pull myself together and power on. My emotion was more intense and immediate. It translated to having a huge, gut-wrenching cry. It would be crippling and leave me on the floor, clutching at the sheets of my bed or the cushions of the sofa. I would be so choked that no sound would escape…like my cry was going inward. It was such an all consuming feeling, but almost gratifying… a physical manifestation of the horrible sadness I felt in that moment and an alignment of both body and mind. These cries were one of the few times I could actually feel the reality of what had happened. Afterwards, I’d be exhausted. If I caught myself in the mirror, I’d stare at my puffy, red eyes and try to relate this image with the one of me an hour ago, buying some eggs from Co-op or smiling at the ticket man on the train. I’d marvel at how I was able to be so normal yet feel this intensity of emotion I’d never known before. But it felt good. It felt like I was grieving properly.  

I’m noticing now that rather than translating to a massive sob, missing mum can give me a sad week or two. The emotion isn’t as immediate and all-consuming. It trickles in and just sits there until I decide to notice it. In these moments I feel low and disheartened and unmotivated. I think irrational thoughts and make up ridiculous stories. I mull over whether I’m making excuses for things because mum died, and whether or not I’m where I’m meant to be at 22. I can’t decide if some of the feelings I’m having are normal for someone in their early twenties or whether they are all because mum died. In all honesty, I feel a bit crazy.

Perhaps my capacity to sit with the sad feeling is greater than it was at the start, when it would have been completely overwhelming. I can carry it and mull it over, while at the same time functioning as ‘normal’. Although, in these moments, I feel a bit of a fraud when I smile and laugh, but feel so low underneath. I lose my sense of self a little. This just complicates things further as I overthink what I’m feeling; becoming sadder because I’m sad (and this is something I want to work on).

I notice that if I have had a string of emotional days, I’m more reluctant to feel sad once I feel better.  Almost like I’ve ‘done’ my grieving recently, and I refuse to get to that place again. I can feel myself actively pushing away anything that might make me cry. It’s probably not good to see a cry, or low week, as ‘currency’ for some good days, but maybe it’s protective so I don’t wallow for too long. I also think I get tired of being sad. It’s quite exhausting sometimes and the worst thing is that I know it’s something I’ll have to be sad about for the rest of my life. I can’t ever make it not sad, so either I stay that way or try and pull myself together and give myself permission to enjoy the day (easier said than done).  

Doing a favourite family walk on what would have been Mum’s 47th birthday, in december 2017

I do occasionally miss the powerful cries I used to have. There’s a nice sense of contentedness after a good cry and it feels like a more obvious expression of grief. When I had these intense cries, I felt like I was doing exactly what I should be doing after mum died. I’m having to accept that having low moments and a low week or two is just another expression of grief and that’s ok. While I feel a bit ridiculous for the irrational thoughts I think in these moments (and once it passes, I can’t quite understand how I managed to feel so low), I’m grateful for feeling better afterwards. I have to remind myself that of course if my mum has died, I’m going to feel sad. While sometimes, the reason for being low isn’t as obviously attributed to mum dying, without mum they’re harder. All my emotions get in a tangle and it makes it less clear what is what. They’re not like a refreshing huge cry which is so uncomplicatedly for mum; they’re duller and sometimes it is not as easy to see where mum fits in.  However, it all comes back to her not being here. It can be such a sorry cycle sometimes of being sad because mum isn’t here and then needing mum because I feel sad.

It was hard to find pictures that relate to this blog …so here’s a picture of a little wave (tiny really) on a holiday in Greece

I’m learning that there is no good or bad way to grieve, and what might be considered not doing well (for example, having a low day, and feeling like you want to just lie in bed and watch something) can be really needed. I can’t accurately judge whether I’m ‘grieving well’ (if that is even a thing?), although one thing I have noticed is that I’m more open to crying (in a less intense and all-consuming way). I can tap into the sadness more readily now and I sometimes just burst into tears (which is a new thing for me). After mum died, I read a few things about how grief ‘comes in waves’ and can hit you without you even realising. I almost scorned at that lack of control. I thought it was so clichéd to just cry uncontrollably at inopportune times; it was the thing of films. While I did have uncontrollable cries, they were very much a bedroom affair. Only now do I realise how wrong I was, and I understand more and more what a wave of grief feels like.

While these sudden cries have left me crying at work, sobbing at the doctors (I just went in to ask about feeling a bit dizzy) and very tearful mid-filling (not because of the horribly huge injection, but because the dentist kept calling me sweetheart which really reminded me of mum), it feels quite good to not be holding it in all the time. It feels good to be vulnerable (although not always!). 

Two years on

I dreamt of mum nearly every night for months after she died. In the dreams she would be in her final days and we would all be very aware of it; much more than we actually were in real life.  I’d be distraught and overcome with the knowledge that time was running out and I only had ‘x’ amount of days left of mum being alive. I felt this huge pressure to do something with that time and would often wake in the morning with a really sad and heavy feeling that would take a moment to place.

naked swim spot (in greece!)

In one of the more unsettling dreams, mum was giving me some final words of advice. I was away on holiday at the time, and this moment in the dream was fittingly happening while we were sat on sun loungers by a very deep pool.  The only words of ‘wisdom’ I can remember from our final dream chat were ‘don’t speak too fast’ which, while not as sentimental as I would have liked, was funny because, like mum, I can speak very fast sometimes and it was weirdly comforting to get some realistic advice from her again (albeit in dream form). However, after this dream, I was so struck by how lifelike mum had been and how real the conversation was that all I could do was go on a run and then have a huge cry at the end of it (an example of the limited number of things to ‘do’ when you really miss someone that’s not here anymore). I did actually spice up my established run/cry routine by going for a naked swim in a secluded part of the beach on my way back. When I mentioned this to my brother Tom, he said it sounded like a moment in a film where my nakedness would have represented my emotional vulnerability at that point.... In reality though, I didn’t spend long in the water because it was a bit cold and I was quite conscious that the further I swam out, the further away I was from my clothes. Maybe there was something deeper going on in my subconscious, but so far that has been the only time I have solo skinny dipped and sobbed (!)  

It’s been interesting reflecting on the two years that have passed since mum died and how my understanding of what it means to grieve has changed. For starters, I don’t dream of mum nearly half as much as I used to, and if I do they have moved away from being set in her final days (which is a relief). I think this has something to do with being more aware of this new reality, which to begin with took a lot of getting used to. A big part of grief for me at the start was trying to wrap my head around the significance of what had just happened. I still can’t really get my head around how I haven’t seen mum in over two years and I’m still frightened by how life moves on without her, but I no longer wake from dreams of mum in the morning having to actively remember that she’s not here anymore.

can’t think of any dream-related pics so heres a pic of mum looking dreamy

To begin with, if someone asked how I was, I wouldn’t hold back in telling them that mum had just died. I’d meet people on a dog walk who had perhaps met mum a handful of times, and after asking after her I’d just offer up lots of details about how she died. I’d meet friends and feel like I wanted to tell them absolutely everything about those final days, no detail spared. I met a tutor for a catch up session, who previously didn’t know my name, but now knew the circumstances of mum’s death and its intimate details (I think he was as shocked as I was for this level of openness). I remember going back to London the week after mum had died and on the escalators from the tube out to London Euston saying the words ‘my mum died last week’ over and over again in my head. I couldn’t stop thinking about this huge new fact about myself. I would pass people in the street and think that they have absolutely no idea of this terrible thing that has just happened in my life. I really couldn’t connect what I was saying to how I felt and I’m sure saying the details out loud was a way to try and make it real (although it was sometimes quite exhausting). Maybe the dreams were also a way to try and ease me in to this new reality and bridge the gap between a life when mum was alive and a life without her. I’d have my days without mum alive, but then I could be with her at night, in my dreams.

lots of days spent going on family walks… (i think this walk was 2 days after mum died)

Of course every time I mentioned mum dying, it would be met with huge sympathy, but I couldn’t match all the sympathetic looks and condolences with how I felt in that moment. There were times when I felt like I was cheating because surely I should feel worse than I do. I’d think am I even upset enough by what has happened? I recognised that it should be sad, and that it was sad, but I didn’t feel it properly just yet. Only now do I realise it’s such a long process (with many sad days to come) and in some ways the start for me was the easiest bit because I just (naively) decided I’d be fine. I didn’t give myself any space to not be ok. I actually didn’t know how to not be ok, and I actively didn’t want to feel this foreign feeling of profound sadness. I had no experience of loss and so no reference point on whether I was doing the right thing (as if there even is a right thing to do). I just stepped into immediate coping mode. The depth of what had happened was too overwhelming to comprehend so it was just shut out and given out in manageable doses, which to start with were few and far between. Also, I didn’t really miss mum too much because I had only seen her the other day. She could just be on a work trip for a few weeks…

Now, saying my mum died two years ago as opposed to last week, or a few months ago, has added a new dimension to grief and how I talk about it. I hold back a lot more in telling someone my mum has died. I used to feel (and still do occasionally now) that when I meet someone, however honest I am about other things, I’m a bit of a fraud until they know this huge thing about me. I’d have always described myself as being an open and honest person, however this was the first time I had been confronted with having to be selective with what I told someone. It was first time I had made up white lies or vague generalisations (‘family things’) to skirt around having to say ‘oh because my mum died’ and risk bringing the conversation to a much more serious note.

skiing two months after mum died ….all a bit weird without her (but of course still a happy moment together)

I really appreciate that hearing that someone’s mum has died recently is not something that is easy to respond to, and at the start especially I’d feel quite bad putting someone in a position to hear it.  It was never because I wasn’t comfortable saying it, it was just I wasn’t really comfortable with the bit after saying it when I had to react to the other person’s reaction. Now two years have passed, saying ‘my mum died’ doesn’t have the shock factor it once had, but when it was really recent people would look at me with a ‘how are you ok’ expression on their face and huge sympathy. Of course sympathy is lovely, but it just meant I’d repeat my well rehearsed post-mum dying script and conversations would just morph into the same thing (often with me trying to offset the seriousness in their faces with a positive ‘but I’m ok’ and ‘we’re staying strong as a family’ etc). I’d sometimes want to just tell a story and the ‘mum dying’ bit not be the main part, but of course it always was for whoever was listening. I need to add though that I don’t think this can ever be avoided and it is part of what happens in the initial months (and if there hadn’t been a sympathetic reaction that would have its own issues!).  A lot of it was down to me figuring out that I don’t need to add any extra detail if I don’t want to, or feel as responsible for the other person’s feelings on hearing it. I can simply just say ‘well my mum died 2 years ago and so…’ rather than feel I need to give more of an explanation about it. The fact that mum has died is a bit of general knowledge about me, like the number of siblings I have, but it is also a very dynamic piece of information, and the potential source of hugely intimate chats. I’m still getting used to that balance.  

Last Christmas

In the weeks leading up to mum’s last Christmas two years ago, it was clear that something had changed. She was holding her stomach more, where her swollen liver pushed into it, acting as a constant reminder that something was wrong. She was having more naps. She seemed a bit more distracted. I also felt less in sync with her which, on reflection, was an attempt to try and distance myself from how she was doing because deep down I knew it wasn’t good. My compartmentalising skills by this point were well practiced from two years of having to learn not to let the worry about mum seep into my everyday, and so my solution to it all was to completely shut off any bad looking-in-to-the-future thoughts.  In my head, if I just kept going with making juices, trying to make sure mum was eating well and keeping some semblance of normality at home, everything would be fine.

On our way to Wales… this also ENDED UP BEING The last picture TAKEN OF US AS A 6

But by this point I felt exhausted. There are always a lot of exams in the lead up to Christmas. This, combined with going back and forth to Brighton and pushing away the increasingly obvious fact that mum wasn’t doing as well as she had been, made everything much worse. An uncomfortable thought was also flitting in and out my mind, however hard I tried to dismiss it. What if it was mum’s last Christmas? What were we doing to make it a special one? I had always refused to entertain the idea that mum could die anytime soon, and in doing so almost protected myself from the truth. But these thoughts simmered beneath the surface as much as I tried to pass them off as ridiculous. It also turned into a bit of a catch-22. If I tried to make Christmas more special would that be accepting the possibility that it was mum’s last Christmas but if I didn’t try, what if maybe it was and I’ll always think we could have done more.

These thoughts hung over me as a dragged myself around the horribly packed shops in town, trying to get mum some lovely things before we all left to go to Wales. I was in charge of not just mum’s stocking presents but also with helping choose mum’s Christmas and birthday presents from dad. Mum’s birthday was on the 18th December and I wanted to make that special as well, but with uni work I hadn’t had much of a chance to organise anything (aside from a massage appointment I had hastily booked in the middle of a lecture). I felt annoyed at myself for being so last minute about everything, and this further added to my conflicting thoughts at how shocking it was to not be more prepared on what could be mum’s last Christmas and birthday. I had the hugely uncomfortable realisation that perhaps I couldn’t do better next year because maybe there wouldn’t be one. This was a sad and sickening feeling… tinging everything with a little regret that perhaps we should have appreciated more how limited our time with mum was. Maybe acting like she might not die meant we missed out on certain things that that understanding could have given us… but this is a complicated topic that I want to talk more about at another point.  

I was pushing everything away; repressing all my worry, ignoring what was happening and trying to make up for not being organised with mum’s presents (I had focused on this as being the evidence of my failure to think ahead). I think I was also pinning my unease on the fact that I wasn’t organised, as opposed to the fact that mum wasn’t well. The combination of all of this was getting more ill than I’ve ever been. By Christmas I was completely bed ridden with hugely swollen tonsils and a pain in my throat I didn’t think humanly possible (it sounds dramatic but I’m not exaggerating!) I think what might have been just a little bit of tonsillitis was made much worse by the exhausted and worried state I was in.

After mum was first diagnosed, I took on more of a caring role and this inevitably changed the dynamic of our relationship. However, over Christmas, mum was the one directly caring for me. She fed me soup in bed and helped me drink water while I tried not to choke on my hugely swollen tonsils. She wiped my head with a cool cloth and read me a book when I didn’t have any energy to even open my eyes. She also did that thing which parents do a lot when you’re younger and thought ahead for me, calling the doctors before we left fo Wales when I first mentioned my really sore throat to make sure I had some strong enough painkillers in case it got worse (and I was so grateful she had or else I would have been stuck with Paracetamol). 

i TOOK A VERY SAD PHOTO OF MYSELF WHILE ALONE AT THE TABLE (THINKING I HOPE I NEVER HAVE A CHRISTMAS LIKE THIS AGAIN)

By Christmas day I was in a very sorry state (see the delightful photo I’ve included). In the early hours of Christmas morning, I woke up with the most horribly painful sensations in my throat and on checking the time could see I was able to take another two painkillers. My stomach was so sore from taking them on such little food so I got up and went downstairs to try and eat something beforehand. Stupidly I tried to swallow down a crust of bread and some peanut butter (!?). This just contributed further to the pain and I ended up sat at the kitchen table sobbing, feeling completely sorry for myself, particularly because it was technically Christmas day.

Mum heard my trying-to-be-quiet wailing (aren’t I dramatic) and she came downstairs. She sat opposite me and helped distract me while we waited for the painkillers to kick in. She got me to do some tapping exercises on my head and various other things until finally the pain began to numb.

AFTER MUM HAD COME DOWNSTAIRS AND THE PAINKILLERS STARTED WORKING - IN A MUCH BETTER MOOD

I always remember mum being a light sleeper. I think she must have been so used to years of waking up quickly when one of the four of us needed her and so never really got into the deepest of sleeps. While Ned, as the youngest, would be the one to wake her by crying, I would wake mum up by tiptoeing to her side of the bed when I was being kept up all night worrying (I used to be a big worrier). I’d tell her my fears about a super volcano ending the world and she’d tell me worrying about it wouldn’t change a thing, and then I’d creep back upstairs feeling calmed by mum’s words. Mum hearing me in this sorry state downstairs was such a beautiful reminder that no matter how old I was, mum would still be mum and would always listen out for me.

It was like we came full circle. In the two years since her diagnosis I had tried to look after mum as best as I could, taking on an almost motherly role at times. Then we ended up with me feeling like I was 6 years old again; having mum read to me, tucking me into bed, then hearing me cry in the early hours of the morning and coming down to help me. No matter how much the caring role had been slightly shifted to me (and I enjoyed the responsibility of looking after mum), that Christmas was the perfect opportunity to remind us of how we had once been before her stage 4 diagnosis.

One memory that has stuck with me from this time was on the evening before this dramatic Christmas day ordeal. I was feeling quite woozy from the Codeine, and lying half asleep in bed. I remember mum coming into my room, kissing me on the forehead and then telling me she loved me in a whisper. She said it with such meaning, love and sincerity and so quietly that I don’t think it was meant for me to hear. This is one of my most special memories.

It’s quite emotional revisiting this Christmas because it reminds me how much I miss this unwavering, selfless, motherly love and care. I’m struck sometimes with how I’ve settled into this new normal of life without her, and blurred the edges of what I’m missing and what it was like when mum was alive.  Of course I have the most amazing and loving dad (and I’m very lucky that we’re so close), but I sometimes just need mum. Most of the time I don’t dwell on what I’m missing, but when I’m reminded of it, it is searingly painful. I’ve realised it’s not just missing mum; it’s also missing having a mum.  

I also want to mention that being ill at Christmas was a welcome distraction from how mum was doing. She could discreetly go and have a nap and that was nothing because I was the one who had been in bed all day. I looked and acted more ill than she did that Christmas and so the attention could shift from mum not looking well to me.  

On our way to Wales for Christmas for the first time without mum

The first Christmas after mum died was actually much easier than I thought it would be. I was really glad to not be ill and actually enjoy Christmas lunch, and we were with a lot of family so it was not as obvious that mum wasn’t there. I was also not in tune with my grief and sadness then, still quite disconnected from it all. This Christmas, however, I found much harder. Christmas is always a wind down period where things get busy, but this year I noticed this unbudging layer of emotions that combined with the busyness made me more low than normal. On what would have been mum’s 48th birthday I just kept wanting the date to not be the 18th.  I had always thought that I wouldn’t be bothered by ‘significant dates’ that are so often mentioned when talking about grief, but on the 18th I was just irrefutably reminded that things had changed. With mum not here to celebrate with, I just wanted the day over.

I take being more emotional as a good sign of being more in tune with myself and my state of mind. I like that I let myself cry more often and more freely (even more openly – before it was very much a bedroom affair). It’s an acknowledgement that mum isn’t here and also serves as a reminder to be kind and forgiving to myself because even though its nearly been two years, it doesn’t mean it’s easier.  

On Christmas day morning last year, after we had finished opening our stocking presents in dad’s bed (a family tradition), Tom showed us a video he had been making for us all. It was a montage of the film he had taken on our last holiday altogether before mum was diagnosed again. Since mum died I have steered clear of any video of her and the more I have, the more nervous I am of seeing some. I worried it would sharpen the edges I have carefully blurred of what it was like when mum was around and I also didn’t want to have that feeling of seeing mum alive and momentarily forgetting she died.  

Christmas 2018

As soon as the film started I could hear mums voice in the background and then suddenly there she was, getting into the taxi as we made our way to the airport. Without realising it, tears were streaming down my face. Part of me wanted to look away, but the other part was transfixed. It was like watching our other life. The old life we had as a six. It was amazing to see mum as mum without cancer and how we all functioned as the family we had been before. However, it also left me with this horribly strange feeling that I really hadn’t seen mum in a while. This didn’t sit well with me. That’s the thing that happens as more time passes; it’s more time since I saw mum. While time going by has given me more of an opportunity to understand how I grieve and to feel more in control of it, it also just plays out a future I could never before have imagined; a future without mum. The more time that passes, the more of a memory she is. I can’t go ‘oh the other week mum said…’ it’s ‘oh years ago mum once said…’ and that’s just sad.

I still haven’t watched the documentary mum was in (for fear of how i’ll feel afterwards) but actually the film Tom made was beautiful to watch. It was so special to see mum and be instantly and effortlessly reminded of every little bit about her. It reassured me that even though nearly two years has passed, of course I haven’t forgotten certain parts of her (a big fear I had after mum died).  They are still accessible memories and I know always will be. Video of mum can just help me tap into those memories when I want them – and that’s really comforting to know.

Counselling and Croissants

There was a weekend in November last year when I felt like I was going through the motions of the day, but not really engaging properly in everything that was going on around me. I was really aware of it then because there were lots of family plans and I was around lots of people, but I just didn’t feel present. It was a foreign feeling and particularly unsettling on a weekend when I should have been happy and content but didn’t really feel anything. I wasn’t connected to myself and felt a bit like I was watching what I was doing from a distance. I realise now this was because while in coping with the fact mum had died by detaching myself from my sad feelings, it was also happening to happy feelings too. This really scared me.

I remember walking back from the tube station to my flat feeling more low than I could ever remember, and then feeling even more sad that I was feeling sad. I couldn’t think of anything I could do that could help me feel better so, with no other ideas, I googled ‘counselling services’ in London once I got home. A few people had mentioned to me that they knew people who had had counselling after a loved one had died, and with nothing else there to remedy how I was feeling I thought I’d just have a look. I found one that looked good (at least the website was nice) and was close by to uni so I emailed them about an appointment. They emailed back the next morning, but then I ignored it for a few weeks.   

I think part of the reason I avoided replying to the email was acknowledging that something was wrong. Another part was perhaps thinking that if I have help, then maybe it would mean I couldn’t do it myself.  I also disliked the fact that I was in this position. I wasn’t meant to ever need counselling in my third year of uni because of losing mum -  that had never been part of the plan. I’d always seen myself as resilient and capable and I wrongly thought that counselling could undermine that (or that it questioned those descriptions). Maybe I was also a little bit scared about what would happen if I went. Also (there are a lot of reasons!) I thought that ultimately mum was gone and nothing could bring her back (as if a- there was a solution and b- everything I was feeling was directly as a result of mum dying) – I later realised these were untrue assumptions and there was a lot tied into how I was feeling and why.  

In the end, while I replied to the email reluctantly, I actually quite looked forward to my first session. I was intrigued at what it would be like and was interested in what the counsellor would say. Would she maybe say I am grieving well? I think I almost wanted approval that I was doing the right thing (because no one ever tells you how to grieve or even what it means to grieve). Maybe she would say there was nothing she could do to help- mum had died and that couldn’t be changed. She could even have the answer to grief (ridiculous) and how to be ok (which of course I know now only I can figure out).  

A room similar to this…

Anyway, the room was exactly how I might have imagined. Intimate, cosy, warm and with a very comfy sofa. There were also some tissues positioned exactly as you would expect (discreet but easily reachable). As soon as I sat down and started to explain why I was there I burst into tears. When I mentioned to others that my mum had died I always was at a distance to the words, but in that room I sobbed and in a strange way, I really liked that I could just cry like that with someone else there. Normally I’d hold back the crying, or at least recover very quickly if I started to cry, very aware that there is little to say to someone who’s mum has just died. In the counselling situation where social norms don’t really apply, I didn’t have to be aware of my counsellor’s feelings towards what I was saying or how she might be feeling. I could just talk and talk and interrupt and cry and indulge in an hour where I didn’t have to be considerate to the needs of someone else (this took a bit of getting used to). 

However, I left the first session feeling drained. I think I had these hugely high expectations that the one hour would ‘fix’ what was wrong and that I’d feel a bit better straight away. I felt like I had repeated a lot of what I had said before and I came away feeling underwhelmed. I know this came in part to a naivety about what grieving means and how it can never just go away.

I wasn’t sure what pictures to include for this post… but I have many pictures of my different coffee and croissant moments so I thought i’d include this one taken in Greece last year

After mum died I started to recognise certain things as ‘life buoys’ - things that helped keep me afloat and not sink with the hugely sad feelings that threatened. Friends were a big life buoy, but so were happy moments and so I began to prioritise them a lot. The little things I enjoyed (like a coffee and croissant) were scheduled into my day along with other kind moments. I gave myself a lot of treats in those initial months (and as a result I spent more money than I would have...) but I needed them to help offset the sad feelings and thoughts. I think I expected that first session of counselling to be a huge life buoy (especially because at that moment I really needed one), but of course it couldn’t immediately be that.

Nevertheless, we agreed that 3.15pm on a Monday afternoon would be my weekly slot (I was a bit nervous at the commitment of it – I had imagined it could be quite ad hoc and not at a set time each week). By the time the next session came around I was a bit apprehensive… maybe even nervous about bringing everything up. Again, I had a cry, and for the 5 months that I went to counselling I cried every single time.  

One thing that I had been struggling with was the normality of life even though mum had died. Everything was carrying on the same and especially being in London where mum’s absence wasn’t as obvious, nothing in my week felt it had changed. I couldn’t get my head around how something so huge and life changing had happened but nothing really life changing was happening now (as in there was nothing to show for it). The hour a week of counselling became my acknowledgement that things were different now. It made me feel like I was actually ‘doing’ something about mum dying.

It had also become very scary to confront a lot of the emotions I had been resisting. I was scared to have to face up to the enormity of what had happened and naturally, you avoid the things that scare you. Counselling let me see that I could incorporate these deep emotions into my normal day. I could be in the library one moment, writing my dissertation, and then having a huge cry an hour later and then be going about my normal day an hour after that (although I was usually very tired after the session and often ended up in Pret with a coffee and croissant). 

Recently I came across a quote in a book I’m reading (called Option B by Sheryl Sandberg and Adam Grant) that characterises a lot of what counselling gave me:  

 ‘It occurred to me that dealing with grief was like building physical stamina: the more you exercise, the faster your heart rate recovers after it is elevated. And sometimes during especially vigorous physical activity, you discover strength you didn’t know you had.’

Counselling became a space to see that I could tap into the sadness and be ok. I also felt more practiced in having a huge cry and then recovering, which meant I didn’t resist times when I wanted to cry in the future because I knew I’d be fine afterwards. In the moments when grief hits, it can be completely overwhelming and it’s hard to see how you can ever be ok again. Over the months I had counselling I became less afraid of these moments because I could see that the deep emotion could fit into my life as opposed to being completely separated and cornered off. I didn’t need to be afraid of it.

One of my favourite pictures

How you grieve is something that takes time and is hugely personal. I feel like I’ve accepted now that it is a part of my life I will always need to tend to and give space. I know that I’ll always have sad moments but then I’ll be ok again afterwards (and in a way I’m almost glad the sadness will still be there somewhere because I’d never want to not be sad about losing mum). I have also given myself permission for that to happen. As obvious as it may sound, letting myself feel something and not questioning it or exacerbating it (for example by being sad that I’m feeling sad, or more stressed that I’m feeling stressed) helps.  

There is a stigma around counselling and therapy. We are all expected to be super human and strong always and counselling, as I used to think, could undermine being ‘able’. There is a huge power in being able to understand your emotions and why you feel certain things, and counselling was a space to explore and understand more. Ultimately there is no time to do this normally so having a designated hour a week almost forced me to give it time and I think that is what I really needed. I didn’t just speak about how it felt living without mum, I also talked about the impact of the two years before and the responsibility I felt and the worry that I carried. There were a lot of things that I couldn’t have articulated before but in talking about them, I found connections.

I think back to the moments when I was much younger and felt really sad. Mum and dad would ask why I was upset, and I’d cry ‘I don’t know’ and then I’d cry even more because I just couldn’t understand why I felt like I did. Being more aware of my emotions has meant I am more in control of them. While I often really didn’t feel like opening up about everything and talking about it each week, counselling gave me the space and time to digest what was going on in a way I would have found hard to give myself otherwise (at least not while trying to keep going with my degree at the same time).

I would have never identified myself as a sad person and I have always been generally happy and positive, so in a way grief threatened what I had considered a core part of me. It has taken time to understand that being sad doesn’t make me a sad person and undermine all those things. Counselling hasn’t stopped me being sad but I think that’s what I needed to understand – I had the unrealistic desire to find a solution to my sadness about losing mum, when actually I just need to give myself permission to be sad and let myself feel it. 

Tea and toast and more mum moments

Mum used to love her tea and toast moments. It would be a cup of PG tips tea together with chewy brown toast with marmite and butter. She would often call on her way back from the station after work to put the kettle on and her toast down so it was nearly ready for the time she got in.  However, mum was very particular about how her tea was made and it took some time before I had mastered it. The trick was to pour the water from the kettle onto the tea bag as soon as the water had boiled (as in as soon as you heard the click – if you didn’t hear the click, you had to re-boil the water). Then the bag had to steep for a moderate amount of time (you couldn’t rush mum’s tea because you’d risk it looking like ‘cat piss’ [mum’s words not mine]). After taking the tea bag out, it was a splash of milk (and maybe a little more) so the colour of the tea was a solid caramelised brown. I make my tea how mum liked it and each time I do, I think of her.

Not a tea moment (I couldn’t find a picture of that) but the closest to it - a coffee moment in Ethiopia!

My tea and toast moment has become a mum moment and it’s a good mum moment because it’s not sad. After mum died, I felt like crying was my only real and tangible way of connecting with her. I got into a routine of running along the canal near me in London as fast as I could, every other day, because that would always trigger a cry if I wanted one. The heavy breathing and heaving shoulders mirrored how I’d be when I cried, and my body would almost be tricked into it from the similar motions.  Running also connected my mind to my body. I had got really good at detaching myself from how I was feeling after mum died (a slightly disconcerting feeling once it’s gone on too long) and so running was a very grounding thing to do. I also enjoyed running because I felt like mum was having a positive influence even though she wasn’t here. It was like trying to make her dying a not all bad thing…in my head, by running so regularly, I was making myself ‘better’ because mum had died.  

I do still definitely feel close to mum when I’m having a huge cry (and it will always be a very powerful release), but it became a slightly intrusive activity. Having to cry to feel close to mum meant that if I didn’t cry, I wouldn’t have a ‘mum moment’ in my day. I felt a pressure to actively find time to feel sad and get that closeness to mum, and while in the initial months after mum died that was ok for me, it didn’t really make a future without mum bearable. I imagined having to forever compromise being happy to feel sad to then feel close to mum (I hope this makes sense). I was also getting a bit obsessive and dependent on running. I’d feel nervous going somewhere if I couldn’t go on a run, and would want to bring my trainers with me if I ever went anywhere for more than a few days. Like with my tea and toast moments, I want to find more positive mum moments that can be part of a normal day. Running and crying use lots of energy and can be quite overwhelming things to do.  I want to find ways to think about mum that can be part of a normal, daily activity, as opposed to being a completely separate thing… almost like merging grief and life together; making space for it.

After mum was diagnosed the second time, we changed her diet dramatically and for a few months she went completely vegan (before we started adding in a few of the foods she really missed). Sadly, this meant that mum stopped drinking milk and having black tea, and so no longer had her tea and toast moments. Mum’s diet change was a big part of her post-diagnosis life and we threw ourselves into reading about the different things you can do to be as healthy as possible.  Because I was in my gap year, I had so much time to dedicate to mum and our plan to help her get better. We were completely in sync in that year and nearly everything we talked about was about what we read, what our next plan was and how we were going to help mum live as long as possible. While I’m now appreciating more the strain of those two years, I am very grateful I had this year with mum because it was an opportunity to achieve a closeness that would never have otherwise been possible.  

One of the first changes we made was introducing a homemade, cold-pressed, vegetable juice into mum’s day each morning. I was in charge of making this juice. We had read that it wasn’t good juicing lots of fruit because without the fibre that you’d get from actually eating the fruit, it could be very sugary (and we were trying very hard to avoid sugar). Combined with this knowledge was also wanting to take the opportunity to fill mums juice with as many vegetables as possible. However, in the end, this meant that mums juices just consisted of a range of vegetables with not much consideration to the taste (poor mum). On at least two occasions, after forcing down a juice I had made her, mum threw it all back up (in both juices I had put in a whole (huge) beetroot which, after some more reading, is apparently a very ‘nutrient dense’ vegetable – so [evidently] a whole one was a bit too much to handle). After a lot of trial and error, we got better at making juices that mum ended up enjoying (or at least not hating). We worked out that ginger is very good at masking the taste of loads of veg and so are lemons (particularly for getting ride of the taste of kale). Mum’s favourite (and friendliest) juice ended up being carrot and celery and, if I was feeling generous, half an organic apple.

I could go on and on about all the diet and supplement related things we did in those two years, but the main thing it gave me was an active way to help mum. I could put my energy into making juices (however disgusting they might have been), cooking vegetarian and vegan food (to the dismay of Tom, Will and Ned) and helping to create a stress-free environment at home.  On a side note – the vegetarian cooking generally went ok and the only time I made something completely inedible was when when I put lime peel (what I thought could replace ‘Kaffir lime leaves’….)  into a Tom Yum soup I was attempting for mum. The lime peel completely ruined the whole soup and it genuinely was disgusting (so disgusting that I even didn’t make mum eat it!)

These lifestyle changes were a big part mum’s post-diagnosis life, and I hadn’t really appreciated the impact that this period would have after mum died. For the two years before she died, mum was the centre of everything for me. She was my purpose and I wanted to do everything I could to care for her. However, after mum died, I lost this purpose - although there were two sides to the feeling. A small part of me almost (guiltily) felt relief about not having to worry about mum anymore. I had got used to the worry and the pressure of thinking about all the things I could be doing for her, only realising it had been there once it was gone. However, I felt completely uprooted. I didn’t really know myself if I wasn’t in that caring, responsible role that mum and I had carved out for me. Mum had grounded me. My way of dealing with her stage 4 diagnosis was to look after her, but then after mum died I didn’t really know what to do. For two years I hadn’t really processed what was happening because I was just putting my energy into mum. However, in dealing with her death there wasn’t anything to ‘hide’ behind anymore. The only certainty was that it I couldn’t do anything to change it. I think it goes back to the tendency to always want to be doing something, and trying at all odds to avoid accepting that sometimes, I actually have to just feel the feeling.

Mum being mum on a work trip (not related to the lion!)

One of the things I find hard is having more memories of mum post cancer, but less pre cancer. Mum didn’t want us to remember her as ‘weak’ (which of course she never ever was). She wanted us to remember her as the active, energetic busy body she had always been. I’m sifting through memories, but the memories of mum after her diagnosis seem to be more ingrained in me. I want to remember more the times of mum being mum without cancer - I know she’d want that too. I’m almost angry that the post-cancer memories dominate because they intrude on my memories of her as she had been for nearly my whole life until cancer ‘rudely interrupted’. I know that how mum faced her diagnosis is in a way the best example of the hugely strong and determined woman she was, and I know she still remained mum, but after her diagnosis our lives changed completely. Whilst we found a new normal, maybe I’m also grieving for our old normal and for my relationship with mum when we didn’t have to worry about cancer.

I think that’s another dimension to grief; I am sad about so many things as well as losing mum. I’m sad for our old family life before cancer, and each time I mention it’s just dad at home (as opposed to mum and dad) I have this feeling that I’m talking about someone else, not me. I’m sad for dad, sad for the boys, sad for my grandparents, sad for mum’s siblings, her friends, but I’m also so sad for mum, that she had to die much before she should have. I could go on forever about all the the things to be sad about so I’ll stop, but what I’m trying to say maybe is that grief permeates into every aspect of life and there are so many things to consider and be sad about because of it (which I know might be obvious, but I think the fact it touches upon every part of life can sometimes make it that bit more exhausting). I think in appreciating this, I am learning to be more forgiving of myself when I have a low day and then attempt to rationalise my feelings, because it really shows that losing mum is just sad, and there is no denying it. I think that’s also why it’s harder to compartmentalise grief (at least for long periods of time) because nearly everything relates back to mum, however hard I try to avoid it. This understanding means I tap into the sadness more voluntarily now. By this I mean if I sense a missing mum moment, I try not to immediately distract myself and acknowledge it instead (easier said than done). I know if I don’t, something else will tap into it at some point without warning, and if I haven’t had any mum moments for a while, it can then mean a HUGE outburst of emotion that had just been building up.

Anyway, this has been a bit of a longer blog than the previous two! As with my tea and toast moments giving me a mum moment, writing this really gives me time I feel I am giving to mum, and I am very grateful for that.

Mum used to write poems and I came across a little book of them (which is now one of my most treasured things of mums) - I thought I’d share this one…

The 214 - written in 1993 (not the best picture of it!)

Graduation, Grief and a Black Eye

I hadn’t really thought much of graduating from uni this month, and was expecting it to be a bit of a tedious day full of formalities and queues to get robes fitted and pictures taken. However, while yes, there was lots of queuing and smiling for pictures, it was actually really nice to wear a gown and celebrate getting through the past three years. Yet one thing I hadn’t anticipated was how emotional I would be. While the actual graduation day was tear free, all of last week I was much more emotional than I have been for a while. I don’t think I had expected the feeling that fully finishing uni would have. I chose UCL with mum, went to the open day with mum and then started uni while mum was alive, but I’m now finishing without her. Mum was very much part of my uni experience…but now I’ve finished, mum won’t so much be a (physical) part of my choices that come next. Maybe it’s also that feeling of mum not knowing what I’m doing now. I liked that even a year on from mum dying, she would have known where I was in life; but now that wont be the case. Added to the mix of this is recognising that I could really do with having mum here now to help me figure out what I’m doing next.

Mum graduating from St Catherines College Cambridge

Grieving is really quite scary sometimes. To fully acknowledge the fact that one of the people you love most in the whole world has really gone is quite impossible most of the time, but when that realisation hits you, it is unbearable. Naturally, it’s easy to start trying to avoid this unbearable feeling.  I think we can get very good at avoiding things that scare us or make us feel sad. Physically we dodge pain and learn to avoid the things that hurt, so I think emotionally that’s a strategy too (but one that’s not at all good in the long term). In many ways this is a coping mechanism; it’s protective to not be able to tap into the hurt all the time. What I have noticed is that as time has gone on, I am a bit less scared of the hurt and that deep feeling of loss, but as a consequence more emotional because of it. I think this is partly because now I can afford to be more emotional because I have the space to do so (the biggest reason I think for why this year out is so important).

After posting the last blog, and receiving lots of lovely messages (which really meant a lot), I was reminded of my mum-less reality again (something which is normally well avoided!) Before mum died, if I mentioned to someone how she had stage 4 cancer, I’d (naturally) get lots of sympathetic comments and sad faces. I remember thinking; ‘why are you looking so sad and shocked, mums fine’. I felt that their reactions were unwarranted and that it was almost overly dramatic. Yes, I knew mum had advanced cancer but in my head she was going to be fine. It baffled me that others didn’t understand this (I know how I was wrong now.)

I would have imagined that after someone dies, it would be impossible to stop crying. But actually sometimes, I want to be able to start crying and let myself have an uncontrollable sob. Crying is such a release and fully connects what I’m feeling in my head to the sensations in my body. In a way I like it when I’m outwardly emotional because it’s acting like something horrible has happened. There is no physical proof of an absence… and when life goes on as normal, I sometimes feel I have to prove to myself that something has actually happened. (Alongside this though, I’m slowly learning that crying doesn’t have to translate to me actively honouring the fact that mum has died; there are other ways of doing it.) That life can go on without mum is both reassuring and heart-breaking. I almost want to see on myself this change that has happened. I’m not talking tattoos (although Ned has mentioned getting mums mobile number on his chest {!?}…) just something that can acknowledge this change for me (if that makes sense). 

About 2 months after mum died I walked into a lamppost. I woke up the next morning unable to fully open my left eye, which then progressively got more and more purple (I’ve included some flattering pictures of it below!) My black eye was funny for a day or two but then just a bit annoying. However, one thing I couldn’t help but notice was the really sympathetic looks I got as I walked around London. This was particularly the case on the tube when I was coming back to Brighton with two suitcases and an eye that looked like I’d been punched (it took some convincing for dad to believe it really was just a lamppost). While this sympathy for the eye injury was unnecessary, I quite liked that for a week or so, there was a little physical manifestation of all the hurting of the past few months. For that week I appeared to some people as fragile …and fragile was how I felt inside. While 90% of the time I don’t want to be treated like this, occasionally it would almost be a relief to have a little of what I’m feeling on the inside show on the outside. When this unbearable feeling of grief does hit, it is completely exhausting and debilitating. I almost wish I have the flu or something to physically prove to myself that I have reason for weakness (even though I know I very much do) and something that forces me to let myself feel that way.   

I think this is one of the hardest things about grief; it’s invisible and there is no timeline for it. With a lot of physical illnesses (just as an example of something that can be debilitating!) there is a predictable trajectory and you know what to expect. With grief, it is so up and down and personal that you have to find a way for it to fit into your life. Almost morphing around it… making space for it. Not at all that I’m saying grief is an illness… but it’s that feeling that something is wrong… that feeling of being ‘off’.

In the moments that I feel a bit low, it’s sometimes hard to discern whether what I’m feeling is sadness for losing mum, or sadness for something else. Everything comes back to missing mum. Everything is made worse by missing mum. One thing I’ve noticed is I can project my sadness of missing mum onto something that is more in my control to deal with. So for example, it can seem that I’m fixated on one really irrational thing (lets call it x), and then I think this is ridiculous I don’t actually care about x, and I keep thinking about how I can change or deal with x when in actual fact I’m just really missing mum but I don’t want to admit it to myself. At least with problem x I have more chance of sorting it out than finding a ‘solution’ to mum being gone (but in the process I feel a bit silly to have cared about x so much). I’m learning to see that sometimes if i’m fixated on a small, seemingly meaningless thing, it is actually an indication that I need to give myself some space to be sad…I hope this all made sense!

Anyway, I worry that this is a really sad post about grieving…(I just read that back and thought of course [try as I might] I can’t get around the fact that losing someone you love is undeniably sad). I want to highlight though that while yes I do have really sad moments, I am ok a lot more of the time than I am not (be it by coping/avoiding/actually feeling good/being busy… all of which overlap!) and I think we are all a lot stronger than we might otherwise think. When I feel strong I feel so resilient and the main thing is knowing that a down is always followed by an up.  

Losing mum - an introduction

This is going to be a sort of introductory blog post. I have now finished uni and currently have no definite plan (!) so actually having a project and a focus will be good. More importantly, I have a lot I’d like to write about. I want to try and articulate aspects of the process of losing mum but also how life has been without her (something I never thought could be possible). By writing about these things, I think I can almost help myself try and understand it all.

We don’t really ever talk about death, or even the process leading up to it. Before mum died I couldn’t understand how someone could be living one moment and then not there the next. I think that helped me believe that mum couldn’t die because if I couldn’t understand it, in my head, it couldn’t happen. While this naivety was a coping mechanism, I also think I could have benefited from being more aware about certain things, some of which I’d like to talk about in the coming posts.  

This next year will be a year out… another gap year. My first gap year before uni ended prematurely after finding out mum had been diagnosed with cancer again. I flew home the following day – a horrible ordeal that I’m sure I’ll write about at some point. I was three weeks into what was meant to be an eight week trip in Peru shortly followed by three months travelling around South East Asia (trips I’d funded by working 40 hour weeks at Subway…perhaps another story). So not only do I want to (re) visit these countries, along with hopefully applying for a masters, I also want to do a bit of processing and grieving in my own time. Mum died half way through my second year of uni and while it was good to have exams to give me some structure in the months that followed, I found in my third year, being sad and feeling this lack of motivation that never had been a problem before wasn’t at all sustainable. I was only allowing myself time to be upset when I didn’t have an essay to write or exams to work for – but this meant I found it hard to find any time at all and I ended up feeling slightly detached from everything. I’d try pushing emotions away and was getting very good at coping. Coping is important and necessary (especially if I want to get on with my day) but it also is a short term solution that uses a lot of energy. I’m particularly aware of this fact when I’m tired (which also means that I am even more vigilant of being tired). So, I suppose what I’m saying is this year out is also an opportunity to grieve in my own time – something which is also slightly scary. Everyone grieves differently and for me a default position is ‘be ok’ or ‘how can I feel better about this’ – but losing mum isn’t something I can just try and rationalise in my head. I need to let myself have those sad moments and days and not feel guilty for it getting in the way of other things (something I have to remind myself regularly).

I also need some of this year to sort though mum’s clothes (which are currently piled high in my room). I thought it would be an easy task but it's proving a lot harder than anticipated. If I make two piles (one for charity, one to keep) – the ‘one to keep’ pile ends up looking almost like the pile I started with.  Now anything mum related has so much extra value.  A scrap piece of paper with her handwriting on no longer goes in the bin but in the bottom drawer of my desk (which is threatening to overspill). A dress that I’ll never wear now I think I could wear in 10 years time. Even clothes I know I’ll never ever wear are memories of mum and of the time she wore them. Its like throwing something away is giving away some irretrievable piece of mum. It’s a bit scary relying on my actual memory for memories… so something tangible, like clothes, are almost like memory cue cards (if that makes sense). This blog may have similar benefits – like a retrospective diary.

I think I’m also reluctant to sort through mum’s things because it's removing a presence in the house and there’s that fear that it could be like mum was never here. The second drawer of the chest of drawers in mum and dads room is filled with lots of mum’s toiletries. It’s a drawer I’d search through when mum was alive (discreetly of course), and even now, to find her nice Dr Hauschka face cream or use some of her lovely smelling organic guava moisturiser (both of which are finished but I still like having them there).  I like that even though mum’s gone, I can still go to her drawer for something I need. It's like she’s almost still here… still filling an (albeit very small) motherly role of having the nicer more expensive beauty products than me.

We are all in France at the moment, somewhere we came every year with mum. While this year more than the last I am even more aware of the fact we’re a five and not our normal six, we still manage to enjoy the sun and spend the days swimming, reading books and playing boggle and cards. The other day I dealt cards for six players – only realising when Tom pointed my mistake out – but I was glad I had, because it acknowledged mum. On occasions it is a bit overwhelming being somewhere where all five of us desperately miss mum. At uni it would just be me, and my pain I could manage. It's harder seeing the people you love hurting and here I can’t avoid as easily the fact that mum isn’t here anymore…but maybe that’s a good thing.

I have written a lot lot more than the introductory blog post I was planning! Amazing if you got to the end of it – thank you for reading. 

Ella X

(I wrote this blog a few weeks ago but couldn’t post it onto Cancer Is Pants until I could hack into mums Gmail account (which was where the ‘forgotten password’ email gets sent). This is a trivial and unanticipated problem you have deal with after some dies (amongst absolutely everything else) and of course I couldn’t just ask mum. After numerous attempts at guessing various combinations of our Netflix password and mum’s computer password (worrying about being locked out for good after what could look like ‘suspicious activity’ on her account in France) I discovered mum had saved it in the notes on her phone. I had a lovely moment of thanks for mum for helping despite not being here and finally managed to change the password and log in.)

I've posted some pictures of us all this year in France (also because big blocks of text look really unappealing). Its sad not having any of mum in - so i've included some of mum from our last summer all together in 2016.

15th August 2017 - 6 months on

We are having to get used to being a family of 5. It always feels like someone is missing when we sit at the dinner table, and I still sometimes instinctively bring 6 plates to the table to lay. For the first few weeks after mum died I would wake up with a feeling that something just wasn’t quite right – and even sometimes now I find myself just almost waiting for mum to come back and the not-quite-rightness to resolve itself.

Its strange looking back on the past 6 months. We have been so deeply sad but have also had happy moments as our new unit of 5. When one of us is down, the rest of us are ok and feeling stronger. We all help each other. It's just up and down always and what helps is knowing that when you’re feeling your saddest, it’s possible to push through and feel ok again. Its good to remember that – how fluid emotions can be.

One of mum’s biggest fears before she died was whether we would be ok without her. She was (and always will be) the heart of our family and imagining a life without mum was not ever possible – I still can’t quite believe it even now. However, somehow life still keeps going forward and we are doing ok.

I love talking about mum. I mention her as much as I can. Sometimes it's as if she’s not really gone because when I talk about her she could almost be here. It's sad to think that the memories I talk about will become more aged and it's sad that we can’t make any more of them. However, its not just memories that mum has left us with, its also her impression on us. She’s in everything we do, everything we think and every way we act. So while the memories of days might fade, her imprint on us won’t ever.

We are all in France at the moment; somewhere we come every year that has happy memories of mum. Tonight we are eating ‘garlic prawns’, which is as it sounds - prawns fried with lots of French garlic (oh so complicated). It was one of mum’s favourite dishes to cook here. We are not really marking an occasion because we think of mum always, but it's nice to do something that mum would have enjoyed today, and it's nice to be altogether as family.

I could write so much more about how these 6 months have been for us and how we are all getting along, but for now this is just a note to say we are doing ok. 

A eulogy for mum

This was taken soon after dad proposed to mum with a temporary engagement ring. Mum was just 23. 

When I was younger, I used to worry about all sorts of things. When I say these things now they are going to sound a bit silly but at age 10 they would keep me up at night. I remember lying in bed with my stomach twisted in fear at the thought of earthquakes, tsunamis but most of all super volcanoes. Super volcanos really did scare me the most.

After what would seem like forever tossing and turning in bed trying to go to sleep but with these dramatic images of super volcanoes exploding over Brighton, I would creep downstairs and into mum and dads room to mums side of the bed. Mum was very good at waking up immediately and she would lie and listen to me tell her what I was worried about as if it were the most legitimate worry in the world. Then she would say ‘Ella, worrying about it isn’t going to do anything. Its just going to mean you don’t sleep. If its going to happen (which it wont) you worrying about it wont change it at all’

This would then immediately qualm my fears and I remember so well that feeling of worry turning to nothing – the realisation that I was just wasting my time thinking about it.

Mum had that power you see. With only a few words she could turn your mood around. She always knew the right thing to say. She was a problem solver and a ‘do-er’.

Mum approached her life, as well as her diagnosis, with this active and positive approach to things. Her continued determination never faltered.

The day before mum died I helped her to the bathroom so she could brush her teeth and get ready for bed. There are about 7 stairs going from the bathroom to mum and dads room and once she had walked up them once (on the way back from the bathroom) I said mum why don’t you walk up them again as a bit of exercise (because you’ve been in bed all day). So mum walked up them again and then clambered down and up them one more time without me even asking (so doing it three times in total)

Before bed mum then stretched her arms up to the sky and then walked up and down with me for a minute to get some blood into her legs.

I’m telling you this because I think it just described perfectly what mum did till the very end – she kept going. She never gave up. Even when all the odds were against her she just kept going. She never once accepted that her diagnosis would mean life should stop and this is how I know we will face life now without her here – we will keep going.

One of mum’s favourite quotes comes from a book called ‘A man’s search for meaning’, written about a man’s experience in Auschwitz:

‘What alone remains is the last of human freedoms - the ability to choose one’s attitude in a given set of circumstances.’

This is exactly what mum did and I think it has to be one of the hardest things to do – because the easiest option can often be to just give up and accept what’s happening. The easiest thing to do is to assume you have no control. // Mum certainly did not just accept she had no control – she found control.

I’d always remind mum that with everything that was happening we as her children were learning so much. This ability to recognise that you have the power to decide what shall become of yourself, mentally and spiritually, can take years to learn. You can learn through words and be told that’s where your control lies, but every day mum was teaching us this in her actions. Mum chose to face her life as well as her diagnosis with optimism, determination and energy. Her spirit really was unbreakable.

When we were younger mum would religiously read us a story before bed. One of my favourites that she read was a book called ‘Pollyanna’ – about an orphaned girl who goes to live with her only remaining relative; a stern and cold aunt Polly.

In the book, Pollyanna plays ‘the glad game’ – something her father had taught her to do. He believed that no matter what happens, there is always something to be glad about and we should always look for for the positive aspects in every bad experience. When I was younger – and even now - me and mum would play this ‘glad game’.

Mums diagnosis proved to be the biggest test of them all for the ‘glad game’ but sure enough mum found ways for it not to be such a bad thing. It meant more time with friends. It meant we appreciated each happy moment more. It meant we became closer and stronger as a family.

To find the good in every bad was something mum taught us and now will give us the opportunity to put into practice.  

These daily lessons that mum has given will carry on. She has had such a profound impact on not only everyone she met but also on who we are and who we will be.  This is comforting because, in a way, I know she will always be influencing us in ways that sometimes we might not even realise.

To lighten the conversations about what it would mean to die I would tell her that actually, if she died, we would probably listen to her more because she wouldn’t be able to argue back. I’d say ‘mum, of course we can live without you’

Of course when I said that, I didn’t mean that it would be easy and I didn’t mean that we wouldn’t miss her. What I meant is that we will keep going and we will learn to live without her. But learning to live without her doesn’t mean she isn’t here, it just means we have to listen more carefully. Because like mum chose to face everything with determination, optimism and energy, we are going to choose to face life without mum in the same way. Her lessons will continue, and she will inspire us always.

Reduction in tumour activity; talking cancer and blue legs

I am back from my second TACE treatment in Frankfurt. This time to my left lobe. Prof. Vogl was decidedly more chatty this time for the few minutes I saw him while lying on my back in my delicious hospital gown. He had looked at the MRI scan that I had a while earlier that morning and reported evidence of reduced tumour load and tumour activity. The latter being more important at this point I understand. This meant he could go ahead with the same cocktail on the left lobe. I will need one more go on each lobe - so two more trips to Frankfurt over the next 2-3 months. But to hear the understated Professor Vogl say he thinks we are ‘on a good path’ makes me feel confident and I was considerably happier having heard his conclusion. 

The days before going had been difficult. My left lobe is really quite uncomfortable, it presses on my stomach if I lie in a certain position and I have to prop myself up in bed. It had also affected how I walked which, possibly tension added to the mix, had given me a sore upper back where the muscles are taut. All these complaints seem to have melted away with new hope that things are going in the right direction (except the discomfort in my abdomen which prevents me lying on my front). It is amazing how your mental health so directly affects your physical health. I had a dark cloud hanging over me, worrying that the treatment may not have worked and wondering if this was the case, how many options there would be left given the tumour load was already quite high in the liver. The moment Prof Vogl communicated his conclusions all those worries just fell away. He was happy for me to return in early January which essentially gives me a free pass over Xmas and New Year. A wonderful few weeks to enjoy my family and friends and indulge in being extravagantly Xmassy. 

This has involved so far the purchase of a silver wool jumper, putting up the mistletoe lights; buying a small wooden German christmas tree ornament with lots of wooden decorations; making the annual advent calendar (a wooden calendar with doors for each day of advent which I fill with chocolates and sweets); retrieving the gold plastic wreath and hanging it on the front door (sounds tacky and honestly I have usually had holly wreaths but this gold one was quite pretty and I am now reaping the rewards of not having to pay for a wreath this year - felt very pleased with myself); purchasing 2 glass star candle sticks for our kitchen table (using my 20% off Home Sense voucher - which I get on certain days for being the nominated friend or family of Tom who is currently working as a Xmas temp there); buying some Xmas cards in my annual attempt to send my loved ones an actual physical message (usually the first half of my address book receive one, the next few possibly after Xmas and anyone after H is lucky to receive one at all); and the decision to join in the office competition for the best decorated desk space.

Ella came home one weekend recently with agreat friend of hers from Denmark who bought me a present of some make your own decorations. She patiently worked with me for far longer than should have been necessary to teach me how tomake them. My spatial awareness is quite simply hopeless. I did eventually master the heart shaped decoration but the star remains a struggle. My intention is to decorate my desk using my own almost home made decorations - which I reckon ought to win me some points for effort. We have set a date for a Xmas party and I have just bought the Xmas treewhich is usually an entire family affair but with half the family elsewhere - Rupert, Ella and Ned, Tom at work and William at the library as he has mocks next week - I made the choice all by myself for the first time ever. This will I know invite comments about either its height, the level of bushiness and how lopsided it is. I decorated it this evening with Tom and Will. Spotify has various Xmas song playlists and I have begun to listen to these almost on a loop and I have Xmas presents and wrapping paper strewn around the house as I decide to fill odd free moments with a bit of wrapping up, only to be distracted and wander off leaving it slowly taking over any spare space in the house. And then there are the carol concerts I am planning to go to. It all sounds rather desperate but it is in fact rather wonderful. If you think it might all be taken away and then you get it back you hoover it all up - no question. The children have also received their annual advent calendar from my Mother. She now has 15 grandchildren.  This is not so much a tradition anymore but an institution. Every year a huge envelope arrives with calendars for the kids. There is a bit of bartering about who gets what - Ella always seems to get the glittery angel or manger scene. This year she accidentally left hers at home so I am enjoying opening it. No holding back. I remember loving it when my calendar from Mum arrived at school. I would get out of bed first thing in the morning, it was always cold, and tiptoe over to it to open the little door. It was a countdown to going home and a to my favourite time of the year. 

The tree is now up. And we have had only one incident so far with the dog gobbling a fluffy sheep decoration. Actually I am not sure there was much gobbling involved, mainly just tearing it to almost unrecognisable pieces. I noticed something under the kitchen table and on closer examination realised it was a head. The body itself was strewn beneath the culprit's (Melka) favourite sitting place. 

My trip to Vogl this time felt more straight forward. One of my best friends Zoe, who I have worked with for many years, came with me and we basically non stopped talked and laughed. Her task as primary assistant involved, in addition to diverting me with sparking talk, carrying my bags on the way home, be with me through the day of treatment and then helpme take off and put on my trousers, socks and boots after the treatment. This time we worked out that she could come into the operating theatre and watch what was going on. The benefit of having someone else there is they can hear what is said and help you interpret it when it is all over and you want to dissect themeaning to the nth degree. She was sat by the wall with a ring side view and made to wear a heavy lead body protector to prevent gamma rays, or whatever rays the machines Vogl uses give out. This time round the time between being prepared and having the IV line up with anti nausea and painkiller injected in and Prof Vogl arriving was far shorter than last time. Last time I was definitely a bit whoosy and floaty when he arrived and did not really feel any pain just pressure - this time he entered pretty soon and I was still very much alert and not floaty at all. When his big needle appeared I asked in a frantic but pretending to be very together and calm type of voice, if he was going to wait until the painkiller had really taken hold. But he said it would eventually and just carried on. This really was quite painful and I definitely squealed loudly (this time he was going through the femal artery on my left) and he had to inject a good deal more local anaesthetic directly into the area - which left me with a totally numb leg for quite a few hours. One of the main impacts of the procedure is that for a couple of days it is very difficult to lift your leg or put it into certain positions, so I shuffled along the long corridors at Heathrow with Zoe laden down with all our bags as we tried unsuccessfully to flag down a buggy. 

This time I had cleverly remembered that as after the procedure it is impossible to wear my relatively tight jeans I needed to pack some soft leggings. Last time, once on the ward under observation, Sophie, who was my assistant number one for that trip, went in search of some cheap leggings so that I would have something to wear when it came to leaving the hospital. She returned with possibly the most ugly blue leggings with plastic dark blue stars splattered over them and elasticated bottoms. It would have been hard to have found anything more unattractive if I had paid her. But I had no choice, knowing that public exposure would be minimal between the hospital, the taxi and the hotel, especially as it was dark by the time we got back to our room. The next day my leg was not better and it was clear that I would have to wear this monstrosity of a piece of clothing to the airport and on the plane. When I arrived home I was very tired. 

Rupert had run me a bath and Ella made me my juice. Rupert chatted as I undressed and heaved my leg over the side of the bath ready for a good soak. I looked down and honestly my heart almost stopped. My legs were blue. Panic just welled up - the operation must have gone wrong, maybe the artery was blocked (my biology was never very good). As Rupert updated me on family and work I feigned total calm surreptitiously grabbing my phone which was on a stool nearby and started googling ‘symptom checker, blue legs’. The following medical conditions are some of the possible causes of leg blueness. Vascular insufficiency; coagulopathy; haematoma; peripheral vascular disease; arterial embolus… Or A bluish tinge to the skin is known as cyanosis. It is a very serious sign of low oxygen levels and build up of carbon dioxide’

I felt tired but I didn't feel that bad. My heart just started pumping and pumping and I felt light headed with shock. What was panicking me was not just the dangers of what might be happening physically but more concerning was what this would say about my quest to outsmart my disease and navigate my way through it all. I envisioned myself being rolled into A&E on a trolley; whispers ‘advanced cancer’; lots of well meaning pained faces; ‘tell us the event up to your legs turning blue and what other symptoms do you have’  ‘oh…so you have been to Frankfurt, arrived back today? what were you doing in Frankfurt’ (eye rolls - here we are mopping up after some foreign medical tourism disaster) - I could see the front page of the local Argus ‘woman who’s campaign we supported in mortal danger from complication from treatment in Germany’  - what about all those people who have followed my story and want to know how it goes for themselves or someone they love. I just sat in the bath staring at my legs, grunting acknowledgement in different tones to make out I was listening intently to Rupert, breath shallowing from shock, mind racing - do I call 999 now - perhaps I should rub and get some blood into the legs - stand up and gravity might help. So I stood up and began rubbing furiously. And then a very strange thing happened. The blue started coming off in my hands. And the penny dropped. This was not cyanosis or vascular insufficiency this was staining from disgusting cheap blue german (or possibly Chinese) leggings. Honestly the feeling of relief was almost worth the panic. And then the ridiculousness of the situation which has kept me going for a quite a while - making me chuckle every time I think of it. 

Working out what to do next withmy cancer treatment is difficult but I have discovered an amazing woman, who I mentioned before, she is Grace Gawler and has a foundation. She describes herself as a navigator. She has worked helping people with cancer navigate the many options and directions for years and is totally up to date with developments globally. She is connected with some of the most forward thinking oncologists and researchers and has helped me work out what to do given my specific situation. Unlike my oncologist, who is able to offer me only what is available and registered for use in the UK, she can identify potential therapies and advances wherever they are. This is tricky as I have to work any such care in with my oncologist who remains my primary clinician - but it puts him in a difficult situation.  Prof Vogl for example simply cannot discuss each individual case with the primary provider. He assesses each patient on whether their clinical condition and treatment profile makes them eligible for treatment and in my case Grace becomes the interface. She helps filter those people who she knows would meet his criteria(I send her my bloods and other information) and then if he accepts you she will help make the first appointment. I pay for Skype sessions with her to talk through my options but also for example my supplements. She has already provided me with information which has made me change some of my supplements. I have stopped coffee enemas during the chemo treatments - as while good for helping with liver toxicity - in this case I actually want to keep the chemo in the liver to do its job. I feel so much more secure having someone with her knowledge helping me work out what to do. As she is not a provider herself she is able to share information, contacts, advise from across the spectrum knowing what my own situation is - geographically, my family, job etc - anything that makes a difference to what decisions I might make. Ultimately I am responsible but I trust her and this has made my job of working out what to do much easier. I was in danger of becoming a fantastically broad generalist with not enough specific knowledge. 

I also share ideas with others I have met on line - often with broadly similar disease - and talk about what we have done and are thinking of doing and share information about treatments and advances or problems. The worldwide web really both a dangerous but also incredibly liberating place to connect and build networks impossible just a few years ago. I feel one of a tenacious group of utterly determined individuals who want to stay alive and are in search, as I am, for strategies which might help them do so. Thank goodness I did not die of some blue leg syndrome after my Vogl treatment or this would forever be on the web and deter countless people. That is the danger of the web. There is one blog about someone with advanced cancer, who was in a bad state and sought care from Vogl - it was not successful and he did die. But he also documented in painful detail the treatment and that it did not work and that he was too far gone. I don't know how many times I read this and it did deter me from seeking out Vogl independently. But Grace gave me confidence, she knows his record and he is well published. I could have been ‘British woman with terminal cancer seeks treatment in Germany anddies….Louise Howes of cancerispants fame died tragically after returning home from experimental treatment in Frankfurt this week. The treatment is not currently available in the UK for people with metastatic breast cancer. A spokesperson for the NHS warned patients to avoid being drawn in by claims of extended survival by clinicians offering care that it currently not approved for use in the UK’. But I was not - and anyway it is not experimental at all - but quite established for primary liver cancer and in some places for colorectal cancer metastasised to the liver. I am in no doubt it will not be long before it is made available to breastcancer where the disease is dominant in the liver. 

My recent meeting with my oncologist was a bit awkward as he clearly, and unsurprisingly feels that it is difficult for him to safely treat me if I go elsewhere for treatment he is not responsible for. I share details of the treatment. I would really like to be choosing the route I take more collaboratively with him but know that he has to be careful and is to some extent bound by what is approved in the UK - so how can he condone treatments he is not able to refer me to. But he has been supportive. But it is a quandary. I do not believe if I rely solely on treatments available in the UK that I will stay alive as long as I hope I do by taking advantage of treatments that are more targeted that I cannot get here. I know there is a risk involved but there is equally a risk simply working through the current treatments on offer here. So - what to do. Be bold as there is quite a bit as stake - my life no less. I do have a lovely team in the UK who care for me - I think they think I am bit of a trouble maker - polite but not easy to pin down. But one of them recently kindly said ‘I don't think anyone is judging you Louise’ and that made me feel better.

There has been a growing discussion about ‘How to talk Cancer’. There was an article in the New York Times last week and this was shared on the chat boards of Inspire (for people with advanced cancer). I was kind of surprised at the passion this discussion has prompted. I have always felt very strongly that honestly knowing what to say to someone with a cancer diagnosis is pretty hard and I therefore would absolutely not judge anyone for how they approach it, even if this means awkwardness and avoidance. It touches everyone very differently and mirrors peoples own mortality in someway, which make it doubly difficult to talk. Some people find it very easy, often you will find they have known someone close to them who have had or died from cancer and they navigate it more naturally. Others simply do not know what to say and worry that they may put their foot in it. I judge no one. Humour has always been a strategy I have used to get through difficult times and conversations - so I am the first to have rolled around laughing at comments about the savings I would make from not having to pay for hair treatments (honestly it really did save me quite a bit given I used to colour my hair relatively regularly). I don't mind if people talk about the fight or tell me stories of people who overcame it or ran marathons when they were ill etc etc. I know that these people basically want to share their love and be kind - they want to help make it better in someway and that intention is enough for me. So to judge them for the wrong choice of words achieves nothing. 

The New York Times piece is about what not to say to a cancer patient. Already I do not like the subject matter. But I kept on reading. It is by a Dr Stan Goldberg a prostate cancer patient and communications specialist at San Francisco University. That says it all already. He is a communication specialist which means he is professionally committed to helping people talk about all sorts of things. So it would make sense that when he got cancer he began studying peoples responses. Goodness i would not like to have been one of those people. How to talk cancer to a communications specialist - you would absolutely put your foot in it. He provides a list of dos and don’ts - already sounds complicated. If you didn't instinctively know what to say you would have to memorise a list of dos and don’ts for fear of messing up - best perhaps to avoid the topic completely and then you definitely wouldn't say the wrong thing. 

Among the don’ts were ‘preaching, unsolicited advice or recommendations, judgement and blame, uninvited discussions about prognosis, information about unproven treatmentsand your own feelings of distress’. Well I am sorry Dr Goldberg….I absolutely don't mind preaching, there maybe something useful in it; I welcome all unsolicited advice or recommendations as who knows there may be an amazing nugget in there that could make all the difference;  I am not really sure what he means about judgement or blame - perhaps people wondering what may have contributed to me getting cancer - which is actually quite a sensible line of thought, it is not simply bad luck - it is the result of a series of related factors a good few of which would have something to do with my lifestyle or previous medical decisions - in my case probably using immune suppressants for 2 years, eating badly and running round juggling more than should be humanly sensible - all giving cancer a chance to take hold by weakening my immune response - if I do not consider what might have caused it how might I make changes to try and moderate its progression? Then there are uninvited discussions about prognosis. There do exist figures on average survival depending on stage of disease but these are averages and were calculated from data that are already old - so the real answer is actually who knows and I totally understand why people might want to know as it helps them respond. If the answer is that this is a cancer that is very easy to treat and almost everyone survives, that is a good thing and people can feel happy for you and hopeful, it if is that most people do not survive for many years then they are able to respond equally appropriately and be more actively helpful and present - clear about the severity of the situation. 

What about ‘information about unproven treatments’ - this is a big one! What on earth constitutes an unproved treatment these days? I have come across many treatments for which there is a good level of evidence of benefit but without the standard of evidence required for it to be accepted as a mainstream treatment. A case of not enough evidence but not unproven. The outcome being these are not being made available to people who may benefit from them. Take metformin - a diabetic drug which helps restore the body’s response to naturally produced insulin and has been shown in many studies to have a protective effect in several cancers - why is this not available to advanced cancer patients? So please talk to me about any sort of treatment that may possibly help - I will then do my research and make a judgement as to the whether it is worth pursuing.  And finally talking about my own feelings of distress. Why not? This is the only human thing to do - acknowledge that this must be distressing and have a discussion about it. 

But this is my reaction to this list of don’ts. The discussion on Inspire simply illustrates quite how different we all are. Some people felt very strongly about how other people should or should not react and respond. So maybe some advice is useful and necessary.

A young man call Julian Quick who has a rare form of bone cancer found that some of his friends and family, and work colleagues were unwilling or unable to speak frankly to him about his condition. He was so frustrated that he started to work on a range of what he calls memes - or illustrations of awkward situations people have found themselves in with advice about how to talk cancer in such situations. He worked with AXA PPP  healthcare to help come up with some do’s and don’ts. He found comments about the savings he would make from not having to use of hair products in poor taste, but I think if he spent as much money as I used to at the hair dresser he may well have found these comments less crass. We are all different but there has until now been little advice for either those of us with cancer or those of us who know someone with cancer and these resources begin to fill that gap. They are worth a read and a share. 

The other side of the coin is how to talk to people if you are the one with cancer. I am not usually short of words but there are times when it is hard to know what to say, when I am not actually sure what I am feeling or thinking as these are not constants.  Having to talk to people a work, strangers or even your nearest and dearest at times. AXA PPP healthcare are about to release/have just released a new guide “Let’s Speak Cancer” as well as a video guide.  They are practical and give tips to those with cancer on how to talk about it. I have added the links above but also to the resource section on this site.

In between my work trip to Tanzania and two trips to Germany I managed some very special time away with my husband. He had a work trip that took him to the Maldives (there are worse places to have to go to for work) and so I went with him. We added 3 days on the end of his work trip and it was unforgettable. Our flights went via Singapore so we saw Ned and my sister for a couple of days. If only you could stop time now and then. Or rewind. Let's do that bit again! No - not enjoying this bit - press fast forward. A few pauses here and there would not go amiss. 

I made a  mad dash to Japan (which I thought was a bit closer to Singapore than it is) as I  wanted to visit a clinic which is pioneering a new immunotherapy. Immunotherapy is a term that describes a whole host of approaches and this one is one that Grace Gawler has suggested would be worth investigating. She has referred a number of patients there who are doing very well. So my sister, Cecilia came with me and we spent two nights in Tokyo. I had a consultation and gave blood and some white cells, so they can make up a vaccine for me in the event I decide this is the route to go. It takes 3 weeks to make up the vaccine so when I realised this I thought it would make sense to pay the extra to get there from Singapore so that they have what they need. They have since sent  my blood results back. They map the cancer immune system  in a very clear way and mine, at the time they took the bloods, does not look very impressive. I seem to be very low in natural killer cells in particular.

I am in no doubt that it will not be long before a cancer patient routinely has their bloods tested not only for signs of progression (e.g. cancer makers) and how the body is coping with treatment (white and red cells etc) but how the immune system is doing to inform oncologists about what the next step could be.

There is also an explosion in the use of genetic mapping - mapping the characteristics of the tumour. I have also decided to have this so we know what treatments might work better to help make decisions about next steps. These are not available on the NHS routinely but you can pay for them and some private insurance companies are approving them. This still means they are out of reach for the majority.  If it means it helps us work out how your cancer works and avoids me taking treatments less likely to effective, with all the side effects they bring, then it would be worth it. 

This link from Grace describes it in this way:  

Genomics-based diagnostic testing looks at changes occurring within an individual patient's tumour to identify options not previously considered.  We can now categorise cancer by the underlying gene mutations that drive its growth; instead of naming it by location, e.g. breast, liver, prostate, brain, cancers, etc. With genomic testing doctors have a better chance of finding gene changes causing or associated with your cancer. This information enables doctors to target your cancer in highly effective ways. Tailoring your treatments to your tumours individual characteristics. 

I am not sure that our health system is yet ready for this explosion of information - in fact I know that it is not. But one day it may be able to offer genetic testing to all (as happens to most in the USA) and match people with treatments. We still live in a country with the worst cancer survival in Europe and the tragic loss of AA Gill before the publication of his article in the Sunday Times magazine today highlights the lack of access to new drugs within the NHS. He had a type of lung cancer which had particularly good response rates to an immunotherapy called nivolumab. In the USA and much of Europe, and within the private sector here this would have been his first line treatment. On the NHS it was not available to him. Nivolumab may not have saved his life but he may have had a very good chance of more precious time with his family. As the rest of the world steps up to the revolution in cancer therapies those of us with advanced cancers have little choice but to keep up with research on new treatments and do what it takes to access them when the evidence suggests they are likely to give you the best chance at success. 

The Beast is Back, Professor Vogl and Anne Boleyn

No nose stud - first time in nearly 30 years 

I have been concerned that the cancer was on the move for a while, ever since one of my liver enzymes (GGT - a marker of inflammation) started to rise. Over the summer the rise was slow, but it has been steady. The bloods taken after my ovaries were removed had it at 116 (normal is under 40) - which pretty well confirmed I was going to have to take action soon. I was determined to go to Tanzania and had a letter from my oncologist for the insurance which simply stated that hehad examined me in September and that at that point I was fit and able to travel to ‘Africa’. Which at that point was true. But things change. Before even going to Tanzania I had arranged (with help from Grace Gawler who runs a foundation to support people navigate cancer options) to go to Professor Vogl in Frankfurt. 

Prof Vogl is an interventionist oncologist (aren’t they all?) and he is an expert at stabilising tumours and reducing tumour load in major organs (I am sure he describes himself very differently but this is my understanding). In the old days if the cancer had reached the liver the approach was more or less, bad luck, sorry there is nothing much we can do. Nowadays they are working out ways to try and keep you alive longer, with less toxic treatments so you have some quality of life - but they still approach different cancers differently. If you have primary liver cancer a very normal treatment is something called TACE - or transarterial chemoembolisation. Which to you or I means - chemotherapy injected via the hepatic artery to the blood supply to the tumours, and then embolisation means something like - and block it off so the chemo can't escape and the blood supply to the tumours is cut/reduced. I have attached a leaflet that describes it much better. For those with primary liver cancers a good 66% respond well and the tumours can be stabilised or pushed back for 10-14 months and if they are in good enough health then they can have it again and again even. This really can extend life for this group and can keep them going until they can get a liver transplant. 

For those of use for whom the cancer is secondary i.e. it originated somewhere else - in my case the breast, TACE does not seem to be considered in the UK. Presumably because they reckon that the cancer is already out the bag and so it is money down the drain. But for those of us for whom the cancer has remained (touch wood this is still the case) in the liver since secondary diagnosis it would seem sensible to more directly target the chemo to the tumours there (if they are under control they can't kill me) and in doing so reduce the impact on the healthy cells in the rest of my body. I knew that my options in the UK when it started progressing consisted of either an IV chemotherapy or a hormone approach, probably the IV chemo however, as once it is on the move in the liver you need to get it under control pretty sharpish and then try aromatase inhibitors (hormone treatment for oestrogen positive cancer). The IV chemo reaches the liver via the portal vein but the tumours in the liver are usually fed by the hepatic artery. SO if you inject the chemo directly via the hepatic artery you can use lower levels of chemo with much greater effect. And 

Prof. Vogl is top of his game. He not only does this for livers but lungs and other places. He also has a number of other approaches to reduce tumour load. In my case the tumours are spread over both lobes of the liver which rules out some approaches. Eg - resection - were I to have one or two clear tumours the liver could potentially be resected - i.e. the bit with the tumours cut out. As livers are so resilient (got to look at the positives) the liver will regrow. I had investigated this last time my liver got bad, but the treatments then worked so well I did not need to follow it through. This time it was the obvious next step. Only one part of the plan, as I do still need some systemic treatment as the cancer, even if not yet visible, is still around my body and so I will need some treatment to keep this also at bay. Having the tumours in the liver got under control (this is the plan) may then mean I can start on a aromatase inhibitor, perhaps a low dose chemo or an immunotherapy. 

So plan get tumours under control is underway.  This means money. About £5000 a visit (euro 3900 plus flights and hotel for me and someone to accompany me) a go. I will need 2-4 treatments of TACE because they can only do one lobe at a time and unless they get a spectacular response first go they are likely to need at least one follow up treatment. The treatments are every 4 weeks. 

We (my longest best friend came with me) arrived in Frankfurt (flights to Frankfurt are not cheap) and stayed in a hotel relatively close to the Frankfurt University Hospital. We reported at 7.30am in time for an 8am appointment. I had been warned that Prof Vogl has a slightly distracted manner so this, which I can confirm is true, did not bother me. The University Hospital is on an enormous site and there was quite a factory production line feel about the process. The Department clearly deal with hundreds of patients a week which I suspect affects their capacity to make any one feel individual. This did not mean they were unkind, more robotic in their smiles and responses. 

After a brief meeting with Prof. Vogl and payment for the procedure I was sent to have an MRI of my liver. This involved being escorted down corridors to a line of numbered doors, or cubicles as it turned out, each with a door to enter, a locker for personal belongings and another door on the other side which then led to a corridor to the MRI room. I entered door 11, removed all my clothes and jewellry. This included my nose ring, as MRI’s have magnets which would attract metal. 

I have not removed my nose ring since the year I had my nose pierced. I had it pierced aged 18 in 1989 (I was ahead of the crowd) in Bangalore South India during my gap year before going to university. I chose a local nose piercer, not wanting a more techno piercing with a gun. I reckoned that with so many millions of indian women having nose rings the traditional approach would be safest. This involved a sharp curved piece of metal which was inserted manually.  I remember, in my attempt to protect myself from infection, pulling out a little bottle of surgical spirit that I travelled with and requesting that the old man (he probably was not that old but at 18 over 40 looked pretty old), clean his hands and the equipment with it. I was travelling with a friend who was also going to have her nose pierced, but was less convinced so I had offered to go first. I knew if I made too much fuss she may back out so held in the screech of pain that should have accompanied the actual piercing (although I could not hold back the spontaneous tearsfrom the pain that filled my eyes). Forcibly smiling after the event I reassured my friend that it wasn’t that bad really. She certainly did not hold in the screech of pain which was loud and came with much swearing. But it was over fast and we went away with rather throbbing noses and gold plated studs. Being sensitive to most metals mine became red and aggravated so I went to have stud of real gold and a tiny diamond made up. I reckoned that I would not easily be able to buy nose studs in the UK in those days. I have worn this nose stud every single day since then. I could never work out how to take it out and feared that if I tried I would either break it, lose it or not know how to put it back in. A number of times during my life I have been challenged to remove it. Once I turned up for a waitressing job in my early 20s at the Queens Club in London, and they asked me to remove it, which I refused to do and was then told to leave. But my nose stud meant too much for me compared with that one off waiting job. When having operations and CT scans I have been asked to remove it, but when I have said I cannot they have simply covered it with a plaster. I had always thought I would take it out by the age of 30 (which then seemed ancient) as I considered it might stop people taking me seriously. My thirtieth birthday passed and I kept it in. Soon after I was interviewed for a job at Brighton and Hove Council. My children were very young and I really needed a local job to help me manage the children and enable me to finish my PhD (which meant needing money to pay huge child care costs). I remember seriously considering if this was the time I had always imagined, when I needed to grow up and take it out in case it affected my chances of getting the job. But I couldn’t bring myself to do it and walked into the interview room. I was at that time 7 months pregnant with William which was probably far more likely to affect my chances of being employed than a nose stud. And there, there sat the woman who would become my boss, herself with a nose stud. We do live in Brighton, so this should not have been such a surprise, but even then nose studs were far less common than nowadays. 

Below - me in my hospital gown and no nose stud and me at 18 in India the year I had my nose pierced 

Anyway, this was my first MRI scan and clearly the risk of the magnets attracting my nose stud gave me very little choice. I simply had to remove it. I had seconds to do so and was all in a fluster ready to mourn the loss of this little friend in the event I had to break it to get it out, but was surprised that it was a relatively straightforward affair. What was far more likely was that I would then lose it as it is really very tiny and I had no special case to put it in. I put on the standard, do up at the back hospital gown and came out the other side of the cubicle, locked the door shut and waited to be escorted to the MRI scan. An MRI is also a polo like round shape but the hole is much smaller so when they wheel you in it feels very claustrophobic as everything is so close. It makes a loud clanging sound when it starts working. It took about 10 minutes in this position. I am not claustrophobic but it is difficult not to feel anxiousin this position so I started my distraction techniques. Strangely what came into my head was Anne Boleyn. I read a book last year about her last weeks before she was beheaded and remember considering how she might have kept it together knowing the certainty of death was so close. So I began to talk to myself in my head, think of how many people, like Anne Boleyn have had to face far worse. What about those locked away, throughout the ages, knowing they would be tortured, that no one would hear or come and save them and no one would care when tossed cold and in pain, back to their cells. Very dramatic I know but it worked. It made any anxiety about either my broader situation or that 10 minutes in a small tube a lot easier to deal with.

I was then directed to a theatre. I walked there through corridors, including workman as there was quite a bit of building work going on, holding my bag of clothes in one hand with the other grasping desperately at the hospital gown, trying to protect my modesty from behind. The little bows that canbe used to tie it up to keep it together are pretty difficult to do up given they are behind you, so essentially my bottom would most definitely have been visible had I not grasped the edges of the gown together. In the theatre there was a cubicle for my bag of clothes and the nurses indicated I should get onto the bed where they started preparing me. Smiles and politeness but I still felt rather like just another poor soul. This did not bother me, I would prefer the fit as many poor souls in this factory line efficiently than waste any more time than is necessary being too friendly. There were about 2 or 3 nurses fiddling with the machine, inserting a cannula in my arm and hooking me up to an IV of fluids, anti nausea medication and morphine. A very beautiful doctor came to check it all. I had not known quite was going to happen and was nervous. Not so much about the procedure but about the fact that Prof. Vogl would now know the extent of the spread in my liver and I could not decide if I would ask him what he could see or even if I would try and look on the screens that were visible to help him guide his work. I had wondered about the pain of the procedure also. The unexpected morphine floated through me and took away all my anxiety. It was rather lovely and I have always thought, as I did when I had a drugs prior to my generalanaesthetic a few weeks ago for the ovary removal procedure, that as long as these drugs exist perhaps the end will not be so bad. Not only can they protect you from pain but it is the mental anguish I would want to be most protected from. I decided I would neither ask him what he could see nor try and look. I worried either may result in some information that I would not be able to manage and which would haunt me daily until I returned to see if and how effective the procedure had been. I also felt that Prof. Vogl would not be a man to mince his words and preferred to have Grace as the interpreter. 

I lay there for a while with nurses being busy around me and eventually Prof Vogl arrived, all gowned up. I had had antiseptic smothered over my groin area and a material cover laid over me which covered my whole body bar a window to the groin. I just looked up to the ceiling and waited as Prof Vogl injected some local anaesthetic and soon began his job, inserting a line up my femoral artery to my hepatic artery. I could not tell really what was going on but he eventually asked me if I could feel anything, for a couple of seconds I could not and then suddenly there was a whoosh of what felt like cold liquid racing around the shape of my liver - clearly he had injected the chemo. It was uncomfortable and quite a shocking sensation but quick. I am not entirely sure what he was doing next but assume this involved the embolism part of TACE - i.e. closing off the blood stream to the tumours so that they are not only poisoned by the chemo but starved of their blood supply. He had chosen to do the right lobe of the liver, which was clearly in a worse state, although my left lobe is the one I feel the most as it physically protrudes from the centre of my upper abdomen between the ribs. Perhaps it is because the right lobe is so much larger that it was key to get this under control as the liver can work relatively well even with quite a bit of it covered in tumours. The whole procedure, bar preparation and finishing up took probably less than 10 minutes. 

In a later debrief with Grace (who goes through the cases with Prof Vogl , she knows and understands him and so can help interpret as well as know to ask the right questions), she said that I have substantial tumour load around the central area of the liver that is close to my stomach and aorta and we need to get this under control. Horrible words, substantial tumour load. But I am trusting that Prof Vogl is the best person in the world to get this under control if anyone can. I will have to wait a month for my next appointment at which time they will do the left lobe (unless clear that the right lobe needs more attention). 

The Line in through the hepatic artery - yuch 

After the procedure Prof Vogl left with few words and the nurses finished getting me ready to move. They transferred me to a trolley bed and wheeled me to a ward for 3-4 hour observation. I was not to move for this time to ensure that the femoral artery was safe and I did not start bleeding. I was still under the influence of morphine so lay there drifting in and out of sleep until my best friend came up from the waiting room to distract me and help get things like water and my book into a position that I could reach given I was unable to move.  My blood pressure, temperature and pulse were taken regularly and the time went by quite fast. I was then told I could get up and leave. I had read an account from another woman who was treated by Prof Vogl of what she had called the Vogl shuffle, which I realised I now had. I basically could not lift the right leg up for 2-3 days so climbing stairs and getting into cars was a bit awkward. It was also the discomfort from where the line had gone in that bothered me most that night. 

We made our way down to Prof. Vogl’s office again where they assumed I had had the post procedure CT scan. We got slightly lost in the system and hung around too long before we finally got a call for the CT scan - which took seconds. It was immediately sent to Prof Vogl who I then saw for a couple of minutes as he checked all looked ok after the procedure and I was safe to go and said he would decide what to do next when he sees the scan next time. And that was that. We made our way in a taxi to the hotel and spent the rest of the time, until the next day early afternoon,   when we made our way to the airport. With all the lying around time I was able to get quite a bit of work done. It is efficient time - I can't move, I can’t be distracted and work keeps me engaged. 

The following days and weeks were far worse than I had anticipated. I think I had thought that because the chemo was targeted I would feel bad for may a day or two and bounce back - but in reality I felt ok for a couple of days, but very tired and then I started feeling worse and worse. I investigated TACE more and read that this does happen. The slow release of the chemo and leakage into the system. There is also adelay for the impact of the embolism to be felt. The liver was clearly angry and felt more swollen, or at least more ‘alive’. I felt wobbly, tired, needed to rest much more than normal, out of breath - just not great for more than 2 weeks and now a good 3 plus weeks after I am finally feeling more myself. Only to prepare for round two. At least this time I will be more prepared and in the intervening time I am trying to avoid thinking about what the results might tell us about how effective it has been. It certainly feels more settled on the right, not on the left however.  

I continue with my oral chemo, which I also discussed with Prof. Vogl and I have now written to my oncologist in the UK to explain my rationale for this action. My aim is to stabilise the tumours in the liver using what I consider is the most effective and targeted way to do so, which if successful will give me the opportunity I hope to start on a new hormone therapy. I continue to investigate immunotherapies and have been examining something called AIET (Autogulous immune enhancement therapy). This is available in Japan. Just as with HIV where combination therapy became to key to controlling what is now a chronic disease it feels as if we are moving to a place where this could be the key for cancer also. Combine therapies to trick the cancer and keep ahead of its mutations to keep this disease chronic not fatal. But we are so early and new approaches are bursting up all around - how the health systems will navigate their way through these to determine which are the most effective combinations for which cancers will require time and some bold thinking and risk taking. In the meantime people like me, and there are many around the world, are taking this challenge into our own hands. Money is the main obstacle but mothers who want to be alive for their children are a pretty determined lot and this makes us very resourceful. Whatever it takes to stay alive. In doing so we work with experts like Grace to navigate the old, new and even newer treatments in our quest to stay alive. In my experience each Doctor is limited by the breadth of their expertise so as science advances they cannot either keep up with all the developments, or make risky choices on behalf of their patients if they cannot be sure of the outcomes/ risks and so they stick within what they can prescribe and advise. There have been no new treatments (I lie eribulin has finally been added to the list of chemotherapies available to people with advanced breast cancer in the UK at last) - but apart from that there have been no new treatments for breast cancer for far too long in the NHS. There are treatments in the US now, routine genetic mapping of tumours which are simply so far away from being available to women in the UK that it feels criminal. The costs I know are prohibitive but with Pharmaceutical companies being even more profitable than oil companies somewhere there has to be room for negotiating prices for treatments which might actually mean they can be used to do what they were designed to do - extend and improve quality of life.

The danger is that while doctors or scientists know more and more about less and less until they eventually know everything about nothing I need to avoid ending up knowing a little about more and more until I eventually know nothing about everything.

Adapted from not sure who

The week before my visit to Professor Vogl I flew to Tanzania. I had been holding my breath that I would in fact be able to go. There were many bits of a jigsaw that needed to be in place. I needed a letter from my oncologist to say I was fit at the point of examination, for the insurance company. My appointment with him happened conveniently just before the signs of progression became very obvious. There were various hurdles to fix the meeting for the week I knew I could travel. I do not want to advertise my health issues. And I needed to stay well enough. There was quite a bit at stake had I needed to pull out, not least I would appear entirely unreliable and this important meeting that had required a number of key people to be available would have had to be cancelled with the implications of that. I was suspicious things were getting worse both after the blood test after my ovary operation which showed the inflammation marker in my liver rising to a not insignificant level and then worse, I began to feel my liver. It was at this point that I fixed my visit to Vogl for just days after my return. I was not going to panic and pull out - two fingers to the cancer I thought. How dare it disrupt me in this way. And so, with a slowly but notably swelling liver I went ahead with my plans. 

Anyone who travels around Africa will know that it is one of the least well served parts of the world in terms of air travel. There are few direct flights anywhere and most routes require you to go via one of the 3 main hubs - Nairobi, Addis Ababa or Johannesburg. When I used to need to visit Malawi and Tanzania in the same visit, despite the two countries being direct neighbours the only way to fly there was to take a plane from Lilongwe in Malawi to Nairobi and from there take another plane go back on yourself to Dar es Salaam. In fact it is even more bonkers than that as the Lilongwe Nairobi route stopped in Zambia on the way - and if you look at a map of Africa you will see that Zambia is in fact in the opposite direction to Nairobi meaning you flew out of your way and then back again at least doubling the time on the plane. It would take me a whole day to make this relatively short distance. This visit to Dar es Salaam I took an Ethiopian Air flight via Addis Ababa. It was due to leave at 9pm on the Saturday, I would have a four hour stop over in Addis and then arrive in Dar around early afternoon which would get me to my hotel by around 5 or 6pm given the time it usually takes to queue and get a visa on arrival. My first work meeting was at 8am on the Monday. 

We sat waiting to embark. 8.45pm and nothing. 9pm. Nothing. The flight was being not being managed by Ethiopia air staff but Star Alliance which meant that when anyone inquired what the delay was they did not seem to have the slightest clue. 10pm. Nothing. Passengers started getting a bit restless and feisty with more and more going to the desk to find out what was going on. Finally there was an announcement. The aircraft had a technical fault and engineers were trying to sort it out. Hmmm. I hoped very much it was the lights in the toilet. In fact it turned out, allegedly, to be a special screw that was missing. They needed to find out if their colleagues at British Airways had one they could use. And so we waited to find out. No. They did not and the only place they could now source this screw was from Frankfurt which meant the plane was grounded and they had to put all 300 plus of us up in airport hotels, which we finally got to around half midnight after working our way backwards through the terminal, out through immigration to pile on to waiting buses. The hold luggage was to be kept on the plane over night, so any thought of baling would be impossible - although the next day some people did which delayed us further as their bags were located and removed. In the end the flight left at 1pm the next day. A day flight was in fact much easier, I had work to finish and this would have been hard on a night flight and I would have had little time at the hotel before my first meeting had I arrived when expected. At this point I had no clue at what time I would in fact arrive in Tanzania and managed to contact the travel agent to be told I had been booked on a night flight from Addis. In practice this meant that when we landed in Addis, rather than a four hour wait a bus took those of us travelling to Dar from one plane direct to another. Rather efficient I thought - and I finally arrived in Dar in the early morning of Monday. After the visa queue I was not in bed until 3.30am. I had little sleep and wondered what all this was telling me. Travelling can be stressful. Should I be putting myself through this. I was tired but not stressed, except perhaps about my liver which was causing me discomfort. Livers do not have nerve endings so the discomfort was from the actual bulk of it pressing on my stomach and a hernia I have had since a child above my tummy button which has never given me any trouble until the last year. The work was relatively smooth. There was one slight blip when I went for a 5 minute lie down during one lunch break as I was really exhausted and needed to just close my eyes and have some time out. The next thing I knew my Tanzanian work colleague was tapping politely on my door. I had fallen deep asleep for 25 minutes. As I was the facilitator for the meeting it wasn't as if I could slip in the back door and pretend I had been doing some unavoidable really important work which had unfortunately way laid me. So I walked boldly through the front door apologising that I had been doing some unavoidable really important work which had unfortunately way laid me, looking as confident and together as I could. 

Apart from the painful traffic jams in Dar on the way to the airport the return journey was more or less straight forward. A state of emergency had been declared in Ethiopia, but you would not know it waiting for 6 hours at the airport for my connecting flight home. I felt sad however. I was more tired than normal when I arrived home. I cannot pretend all is the same. I was such a physically robust person and now I feel so feeble sometimes. Accepting that life is different and will not ever look the same again is hard. Accepting the uncertainty, the changing role at work given my inability to be as physically present as I was before my diagnosis is hard. I remind myself of how lucky I am and counsel myself that this is my path now, there is no point looking back just make the most of now. Usually I am quite good at this but the trip to Dar was a concrete reminder. I used to do trips like that all the time, perhaps it was this that so starkly highlighted my reality. It was not just a normal work trip. Nothing is normal anymore. 

MOre about TACE

Surgical menopause - On the Front Line

Last Thursday I had a bilateral salpingo oorpholrectomy - which means removal of both ovaries and fallopian tubes to you and me. My cancer is fed by oestrogen and by removing the ovaries it makes me very much post menopausal and a pretty constant stream of oestrogen is removed as a result of this procedure. My cancer is extremely oestrogen receptive so I have been looking forward to just getting them out. Finding a time to have the operation during a period of stability was necessary. It was a bit hit and miss as I wondered if I would still be stable enough to go ahead. By having them removed the range of hormonal therapies I can consider increases as many of them require you to be post menopausal. Last year I was on Letrozole, which also requires this but instead of surgically induced menopause I had chemically induced menopause through weekly horse sized injections in my abdomen (zoladex). As well as hating them because they just hurt it also meant that for about 3 or 4 days after the injections I was particularly tired and flat. 

I have had the date of the operation in my diary for a while. 22nd September. As the date approached I made sure I would have people around me to help for the first few days. Ella came back from London, Uni does not start till next week and Rupert was not travelling with work. I cleared my diary for two weeks as I was not sure how long I would be physically out of action and was very busy up to the date as I squeezed in as much as I could before I was grounded. 

The operation was scheduled for the afternoon and was to an outpatient procedure. It involves key hole surgery, a hole through the belly button and two small holes above the hip bone area. But in the end I stayed over night as the operation started later than planned and there was no way I would be walking before it got dark. 

I had not given the operation much thought before the day, at least not consciously, beyond the practicalities. This was also a treatment in itself and I was happy that was necessary. When the day arrived I began to consider the symbolism of it for the first time. These ovaries have been pretty good to me. They gave me (with a bit of help) my 4 beautiful children. I certainly don’t need them for childbearing and the logic to remove them was good. But on the day I did start to feel a bit maudlin. I said goodbye to Rupert who had bought me to the bed I would recover in and then walked with a nurse to the operating theatre. Rather it was the room before the theatre where they put you to sleep. By this time I was wearing one of those delicious do up the back hospital gowns. I climbed on to the bed and loosened it so they could access the parts they needed easily and they covered me with a blanket. The anaethetist stuck something in my right arm through which the various drugs and fluids could go (hitting a blood vessel on the way and needing to re-site). I had been worried about my carpal tunnel but he said that the drugs would in fact help it - I can't remember how - something about relaxing the blood vessels (I might have made that up). As all this was happening the reality of what was about to happen and simply my situation and probably lots more related started bubbling up and I could feel my eyes stinging. I was about to burst into tears but just in timethey gave me the dreamy pre-med and the next thing I knew I was in recovery.

Apparently one of the anaesthetic drugs makes it feel as if time has stood still, so that whatever you were thinking about when you went to sleep you wake up thinking about. In my case this meant that as I slowly became aware of sounds and light, I couldn't really feel my body, I was like a floating head, but I could think and I just started crying. I was wearing an oxygen mask which meant that as I hiccoughed I breathed in huge amounts of oxygen. This was a strangely lovely feeling. I was not really conscious of why I was crying it just felt like a huge release. Tears were rolling down my cheeks. I could hear the voice of a nurse, like an angel, whispering that it was OK, that general anaesthetic can make people feel emotional. I was clearly not the first to wake up crying. I did not want Rupert to see any tears and mumbled through the mask to ask if she could wipe my eyes and make sure I did not look like I had been crying. Slowly my body came into focus and I was aware of some discomfort in my abdomen area but nothing dramatic. As I became more lucid they removed the oxygen and opened my eyes. There were other people on either side of me also in recovery but I had the same nurse keeping an eye on me, taking 5 minute observations for a period. And then I found my voice and we started chatting. I think I would call it more like verbal diaorrhea - we talked about motherhood, childcare, work life balance with kids and more. One of those mother to mother conversations that connect otherwise strangers so powerfully. 

I was wheeled back to my bed where Rupert was. Ella, Tom and Will came to visit briefly. Although I was lying very still, with white anti DVT stockings I didn't feel as bad as I thought I might, I slept pretty well and came home the next morning.  By then I walked to the car, very slowly mind, but I walked. 

It has been just over a week since then and apart from the first 2-3 days when I continued to walk around like a bent old woman (still want to be one of those), I watched a whole series on Netfliks (Stranger Things - brilliant - set in the 1980s - a time warp for me - no mobiles, no internet, no computers, it’s like a mix between a darker version of ET and Strange Encounters of the Third Kind - honestly it is a great watch). Physically I have recovered pretty well and am walking normally. The wounds were incredible - no dressings at all just glue. Very disconcerting to see my belly button stuck together - I hate my tummy button being touched so the idea that it has been more than just touched - it has been drilled into and light and camera equipment stuffed through it very disconcerting. It remains stuck together and the dried glue is almost off (very tempting to pick at it) - hoping I still have a tummy button and wonder what it will look like. Maybe it will look better than when I went in? It shows no signs of returning to its previous state and I have to admit looks the better for it. So perhaps I have inadvertently had plastic surgery to my tummy button.

The other scars are tiny. These are where they pull the unnecessary body parts out. I was never very good at biology or anatomy but I have some idea of how things fit together but not I suppose their relative size. Gauging by the size of the holes they were pretty small or at least able to squeeze through a small opening. 

The part of the process I had underestimated was not the physical healing of the wounds etc but the fact that this would mean a plummet in any remaining ovary related oestrogen. My treatments over the past 5 years have all chipped away at my oestrogen levels but this would be the final big push. Ella read somewhere that it takes about 3 days after the operation for the last of the oestrogen from surrounding tissue to leave the body so by day 4 my body was crying out ‘oestrogen! oestrogen! where the fuck are you?’. In practice this has meant some whole body hot flushes and the feeling occasionally as if I am having some kind of internal electric shock. The most unwelcome symptom in the very early days was a sudden feeling of deep sadness. I simply cried. Not just a little but a lot and frequently. As my mobility was restricted it was hard to get moving and do something to distract myself but even if I could I couldn’t unpack what was making me so sad. I know you might imagine what might be but I am really quite a happy soul despite what is going on and nothing had changed much from a week ago when I felt perfectly cheery. I don’t mind my family knowing if I am down when I really am down and even if I do end up having a cry in front of them occasionally, that is probably quite healthy. But I really do not want to be terminally miserable and cast a heavy depression over their lives. I want them to be surrounded by laughter and optimism most of the time. So uncontrollable sadness was not good. I clocked this was related to my operation and thought I had better read a bit more about it and see if there were any useful strategies to help. 

Well- first of all in my search I noticed that information about menopause generally seems to be written on a back drop of sickly pink. Why? It is breast cancer awareness month this month and I am surrounded by lots of sickly pink balloons. (by the way I get very annoyed when people with breast cancer get annoyed about the methods people without it use to raise awareness of the issue and try and raise funds and support for it - there was a recent spat where people shaving their heads in support of breast cancer were attacked by people with cancer who more or less said they had no idea what it was really like and they found it offensive - well I think that anyone who wants to do anything to raise awareness and support should be thanked - not lectured to as the intention is fundamentally good). Back to sickly pink balloons - why could they not have chosen bright happy pink ones? A matter of taste. For menopause however I do not like the pink at all. This dislike was aggravated by a very informative blog on surgical menopause. Pages and pages of it. Can you imagine - a whole blog on surgical menopause - and this was not one that interspersed the blog with light tit bits about every day stuff it was entirely focused on the many and varied consequences of surgical menopause. And it was all pink. 

These even Look like they could be escaping ovaries 

According to this blog I am likely to suffer some or all of the following. My bones are going to get brittle. My skin will become dry and thin and my wrinkles will become more pronounced. I will lose my hair - or some of it as it becomes thin and more grey (I am not yet grey bar the odd one or two but this clearly will not last long). I will get hot flushes at night and at random times and sweat lots. My vagina is going to shrivel and become as dry as the gobi desert, prone to cuts and chaffing. I will suffer inexplicable mood swings and may suddenly feel very sad. I will become irritable and will be unable to concentrate for long periods. And my memory will deteriorate so I won't remember anything anyway. The answer, according to these essays (pages per symptom explaining exactly how the lack of oestrogen results in the symptom so you are in no doubt that it will happen to you) is HRT. Which of course people like me cannot use anyway - so that’s not very helpful. In fact, according to this blog HRT is so clearly the only way to avoid the above that I am absolutely certain the blogger is either a pharmaceutical company rep or someone paid by a pharmaceutical company to blog about the terrors of surgically induced menopause and the big saviour HRT. That would explain the very well organised blog site and choice of decoration. Not a typo in sight. Perfect grammar. No hanging sentences or long garbled phrases that you might expect from a real person :) .  Call it a blog and we won’t realise it is information being fed to us via the pharmaceutical industry. On the other hand perhaps it has been written by a genuine person, who was terribly affected by it and for whom HRT was her saviour and she felt compelled to tell the world. If so - I am sorry for being so doubting but could you please add some more information for people who can’t take HRT and please be less depressing - no wonder we end up irritable and moody. 

Who would employ a menopausal woman if they read all of that. I went through in my head how many people I knew who I was sure were either going through it or had already gone through it (admittedly not having had ovaries removed) and decided that there are really quite a few competent, healthy, happy and capable women around. Don't we have a female British PM and Germany has a female Chancellor and then there is Hilary - they can we hope concentrate for more than a few minutes. Compare them with Trump Kim Jong Putin and Mugabe. Unpredictable? Moody? What is the male equivalent? 

That is not to belittle the actual symptoms that I am or might experience and those that my fellow surgical menopausers may have. I may well become more forgetful (if this is actually possible) and my skin may dry and shrivel and I may feel sad sometimes but I will have to work out how to manage that - a bit more suduko and the writing of lists and post it notes; luxurious non toxic face and body creams and some good comedy; love and laughter. 

I do not really have any photographs to share this time as I thought snaps of my tummy button were not desirable. A snap of me crying uncontrollably? No. The only one vaguely suitable is of me as a baby in my pram. I have a look, I am sure I have mentioned before, which Rupert says I give when I disapprove or dislike something, a smell, an opinion and obnoxious comment (the content of a blog I do not like) and it apparently looks like I am smelling camel pee. Well I think this picture shows how long ago I developed this disapproving expression. 

I have been loved and looked after by my family and am preparing myself for what may be coming down the road. My liver bloods have continued to go up (the wrong direction) so I am thinking that sooner or later I am going to have to change course. I am trying to stay calm and philosophical and have some ideas of next steps if I need to do something differently. I have started GcMaf. I inject 0.5ml every 1-2 days and I take oral colostrum (from Japan). Let’s see if this supports what I am doing - it is steady as she goes for the moment - ready for an about turn if needs be.

During all of this I have continued with my day job (no point lying around watching TV series unless very good reason) and I will be travelling to Tanzania next week. I am working to support the Tanzanian Government introduce accreditation to health care facilities as part of a strategy to improve the quality of health care as part of German Development Aid. They do not know about my health situation, and I don't want them to or they might slightly lose confidence in me (!). This is quite a tricky path to tread. Having advanced cancer means life is very unpredictable and you cannot plan too far ahead ever. I wondered if I would be able to do this but for the moment, despite rising liver bloods I feel well, my oncologist was happy to write a letter saying at the point of examination I was fit and able to travel there (an insurance type letter) and this fits within our workplan. So I feel very grateful. Last year I thought that was the end. It is not the end!

Life, Love and Truly Scrumptious

It is 30 degrees and I am sitting in the Botanic Garden Cafe in Gottingen. The flowers are fading,  a powerful visual reminder that summer is ending, despite the heat today. I am here for the treatment I continue to receive here, usually monthly but this time given the summer holidays, the gap was longer - about 7 weeks. I left booking somewhere to stayfar too long. Goodness knows what ishappening in Gottingen this week but I could not find a single airbnb or hotel in the central area and so am about half an hours walk away in the Hotel Astoria. Room 13 at the furthest end of a very long, yellow corridor on the first floor. The room overlooks a big red Mini-Mart and Toys R Us sign in bright lights, a road system and a car park. The room last night was stifling but with my eye patches and earplugs I slept ok. Before I came I had my routine blood test at home, which shows a continued rise in one of my liver markers. The others look OK but none are going down. I asked to delay the scan as I feel very well and have no obvious symptoms. Scan’s are the cancer sufferers nightmare. Their very prospect ties your stomach in knots as the results can mean your immediate future can change overnight and you temporary calm is destabilised. You need to go through the possible scenarios to simply prepare yourself, not only for bad news but what it might mean. Fear in a consultation can make you forget any reason and perspective so to pass through the fear in advance and consider what might happen and what you might want to ask when you go and get the results is a good way to prepare. But there is a limit to how many times a person (and their loved ones) can go through this so it was good to delay it. I am concerned that the liver bloods are indicating that the cancer is active again and I need to decide what to do about it. 

Next week I will have an operation to remove my ovaries and fallopian tubes - a ‘bilateral salpingo oorpholrectomy’. It is key hole surgery, which I think always gives a false impression that it is almost as straight forward as cutting your toe nails. In practice it involves pumping your abdomen with gas (which takes a good while to go down - ouch - and I have yet to work out how the gas is actually released - or is this too obvious??). They have to cut through some muscle and then cut the bits out and stop the bleeding with a bit of stitching somewhere along the way. It involves a general anaesthetic. I have had wildly differing descriptions ranging from people who almost went back to work a couple of days later to others feeling they had been kicked by a horse and it taking weeks before they felt themselves again. I would of course like it to be the former but I am not quite as robust as I used to be. Staying busy is a great strategy for good mental health in my view and so the prospect of being physically confined in anyway is not good. But I need this operation because firstly my cancer is strongly estrogen receptive and this will reduce the amount of estrogen in my body available to it and second it also opens up other hormonal therapies that require you to be post menopausal. Last year I was having routine Zometa monthly, a horse sized (possibly exaggeration but that is my view) injection in my stomach which I hated and threw me into 3 days of post injection symptoms. Using this type of approach is time limited and it is better at this stage to get on and get my ovaries out. There is a trial of a new hormonal drug I may be eligible for if I have confirmed progression,  but only if I am post menopausal. 

Then there are the after affects of surgically induced menopause. Hot flushes, reduction in bone density, dryness, skin thinning, hair thinning - basically turning into an old lady sooner than you might otherwise as far as I can see. But I have really been bombarded since my first diagnosis and have only variously experienced the above but think that for the most part I will not be dramatically hit as I have already had so many treatments to reduce my estrogen. Fingers crossed. 

While I am on a bit of a roll about my physical ailments (I do so hate to focus on the failing state of my body as really I have been running daily, juicing and feel great) - but I am going to mention my wrists. Over the summer I have developed terrible carpal tunnel syndrome. I was susceptible to it before my cancer and experienced it during pregnancy, but this is something else. My wrists are visibly swollen and there is fluid pooling in the backs of my hands. My right hand is worse than my left but both fizz and are numb on and off throughout the day. Anything that requires a pinching movement, even driving the car aggravates it and I have to stop or move my hands to relieve it. At night it wakes me 3-4 times, and almost always around 5am. Only sitting up and hanging my hands by my sides and shaking them at this time will relieve them. By the time I get out of bed in the morning I have absolutely no grip and it takes movement to get them going again - but even then I am unable to form fist as I used to. I am not sure exactly what has aggravated it but it is without doubt the result of the various treatments I am on and have been on. A lack of estrogen for starters can affect this - but I think it may also be immune system treatments. The bottom line is it is not going to go away and will most probably only get worse so I am on a mission to find a resolution. This is likely to be a carpal tunnel release surgery. Basically the main nerves that run through your arm to your hand go through a tunnel (the carpal tunnel) which is not very big. Any swelling or damage can put pressure squeezing the nerves and starving the hand. So what do you do? You ‘release’ the pressure through a surgical cut or two in the right place. Margaret Thatcher apparently had the surgery - not sure that recommends it - but she was a pretty busy woman.

The fizzing and numbness and lack of grip are bearable but completely aggravating. My knitting (my very untalented attempt at it which gives me such joy) has almost come to a halt as has my colouringand writing for any time is also very uncomfortable. I can, thank goodness, still type.  The bit that worries me most is that if I do not sort it out and I were to find myself - for the sake of being very dramatic - on my death bed - rather than soaking in love, attention and morphine I will be driven mad by the fizzing and discomfort made worse by lack of movement from my near to death lying down pose. I am not sure this jumps me to the top of any surgery queue - which by the way is as long as a very long thing - ‘Stage IV women, incurable, with carpal tunnel syndrome’ - they will probably slip me to the back of the list and hope nature is quicker than their waiting list. So I am investigating how to get it done privately. Things should not work like this but when you are where I am you have to take control. This will mean, among things, finding a time when I am in a stable state, not recovering from abdominal surgery, stable and with help to do the most basic tasks as if I have both wrists done at once I will be handless for a while. I have been spoilt over the summer as for most of it I have had almost all the children and still have Ella who continues to be my daily companion. 

All I wanted before the summer holidays started was to be well so we could spend time together as a family. We had taken 4 whole weeks to spend in France. My wider family joined and over August we simply had beautiful weather and such happy, happy times. We had A’level results and some GCSE results and Tom left us early to travel around Europe with his friends. We also said goodbye to Ned. Ned is spending a term in Singapore with my younger sister and her family. This was a plan of mine for a while.

After my experience in March when I wondered if I would see Xmas I have been facing up to my fears so they do not derail me. One of these is the prospect of Ned growing up without a mother. Of course I feel the same for all my children, as a mother is a mother regardless how old you are, but he is still a child. The others are already the formed people they will be and so nearly all into adulthood. For Ned I had a vision of me not being there and his brothers and sister being off at University, working or travelling and only Rupert and he at home. Rupert will have to continue to work even if he were to take time off or rearrange how he works, but for Ned’s life so far he has been surrounded by noise and bustle. The idea of Ned alone in the house after school or at weekends is unbearable. He also needs a mother figure. My sister lives in Singapore and has 4 children of her own, but they are younger than Ned with the oldest only a school year behind, so he fits well given their age ranges and now has experience of being the eldest. He and William visited her over Xmas and he built a nice relationship with my sister. So on compassionate grounds his current school is holding his place for a term while he spends a term there. For him this was an exciting prospect, he couldn’t wait. The school there were very good and accepted him and he now has a Singapore Student Pass. We facetime daily. I miss him. We all miss him. The house is strangely quiet. We can tell he is not aroundas apart from his obvious absence biscuit packets stay closed, there are no strange inventions or fire experiments and the number of experimental cake making has fallen to zero. But he is having such an amazing experience. A new school (he is at the international school), lessons by ipad (what happened to pen and paper?), new friends, noodles, rabbits, a cat, hamsters and his cousins. In many ways it is like sending him to boarding school but not like in my day where I did not see my parents for a whole 3 and 1/2 months at a time, didn’t speak to them as there was no facetime and certainly no email. He is with a loving family and will be home for the holidays. But the family works differently when he is not here as it does when the others leave for whatever reason, travel, university. It is the universal reality of parenthood - children grow up and the best you can do is prepare them so you do not need you. In this case I am preparing him a bit sooner and for a possibility more profound than most children have to contemplate. (below is a photo of Ned at Heathrow about to travel solo/assisted to Singapore and with 3 of his cousins on their first day of school)

As if 4 weeks in France was not spoiling enough (we did actually work while we were there!) but Rupert and I ended the summer with a few days in Florida for our 21st wedding anniversary (we did not celebrate 20 years last year). Florida would not normally be our choice of a romantic break for such an anniversary but really we were there to visit Rupert’s beautiful Aunt Sally Ann, his only living relative of that generation having lost his Mum and Dad in 2 years. Sally Ann (Sally Ann Howes) is better known as Truly Scrumptious from Chitty Chitty Bang Bang. This beautiful British actress is now 86 and remains a force of nature. She is one of Britain’s treasures but like all of us,  life will not go on for ever. I have been very close to her since we first met when I was 23. She adores her two nephews and has played a key role in both their lives. When I was diagnosed last year one of the consequences, I thought at the time, was that I would never see her again. So with my relative health we were determined to go and visit her and her husband Douglas. 

When I first met Rupert at 23, we fell in love and were engaged in a very short space of time, so while I felt I knew his very core there were many parts of his life I was still to learn about. He had told me he was from a family of actors and musicians and that he and his brother had broken the tradition. At some point he had said his Aunt was in Chitty Chitty Bang Bang. I imagined some backing dancer in one of the sweet factory scenes and thought no more about it. Meanwhile my family were all very curious as to who this man was, he was 8 years older than me. We barely knew each other and were not connected in anyway before we met. In the December before we met (1993 - we met one month later in January 1994) I had spent Xmas with my family. After one rather drunken family meal we had settled to watch the annual showing of Chitty, a favourite in our house. A conversation had ensued. Who was the actress? It wasn’t Julie Andrews. So as the credits appeared (in those days you could not pause) we all crawled forward to be closer to the box to read the names better, but they sped past us and we missed it. A few months later Rupert and I were walking through Camden when we passed a cafe called Truly Scrumptious. As we passed he said ‘Look, they’ve named it after Aunty’. I stopped dead in my tracks. ‘You mean your Aunt is Truly Scrumptious’. Yes, he said, he had told me she was in Chitty. Heart racing, I found the nearest red phone box (again no mobiles in those days) and called my mother. ‘Mum, Mum! Guess who Rupert’s Aunt is?”. And after that all the little whispers wondering who this man was ended as it was now clear. He was Truly Scrumptious’ nephew. What more did anyone need to know? 

Since that time she has added some glamour to all our lives. She has sung to 4 Presidents. She met Marilyn Monroe at President Kennedy’s famous birthday were Marilyn sang ‘Happy Birthday Mr President’ at which they arranged to meet for coffee until Marilyn’s untimely death. The event itself had been choreographed by Sally Ann’s then husband Richard Adler. But that is the thing about death, it comes to us all and Sally Ann is nearing her time. She has had the most remarkable life but cannot escape the discomforts of old age, the sadness of losing all your friends and the losing of your independence. We had a beautiful few days. 

21 years on this September

While we were there we spentsome of the time in a nice hotel near their apartment. We had decided that for such a big anniversary, and given my situation we needed to take the ‘sea view’ principle - do it while you can. We had in fact seen the prices and decided that partial sea view was good enough. Brexit added to the pain as had we paid when we first booked it would have been a good third cheaper. But as it was hurricane season and the hotel was under half full so they had up graded us to a full sea view. We slept with the window open and could hear the whoosh whoosh of the sea. One of the nights we had a disagreement in the middle of the night. Rupert thought the wind was a bit strong and the noise was keeping him awake. I was quite happy, enjoying the bluster, but he shut the window. In the morning we had texts from family - were we OK? Had the hurricane hit us? As it was we were in fact on the other side of Florida from the hurricane but we had clearly, unknowingly, experienced the tail of it. 

At breakfast the first morning I was suitably excited when I saw there was a ‘Raw Food bar’. On closer inspection it consisted of a few pieces of watercress and a plate of some raw spinach. There was also some interesting looking grass (see photo). Perhaps this was tall wheatgrass, I thought and looked around for some sissors or other implement to cut it with. But there were none, which made me think. Is it there to eat or for decoration? Why would you have grass on a raw food bar that was not for eating? So I surrepticiously ripped a few strands off and stuffed them in my mouth. Grass - it was definitely grass. Maybe this was a raw food thang in the United States. I thought I had better ask someone and as cooly as I could, making out I was simply interested and had not intended to actually eat any of it, I asked one of the servers, who confirmed it was just there for decoration. I was not the only person to have asked apparently - which makes me wonder why they hadn’t rethought their decoration strategy. And I slunk away with some spinach and watercress on my plate. 

One thing America has which we do not is Whole Foods. I know there are more stores here now but not in Brighton. Whole Foods for me (known there by many as Whole Pay as you can spend all your money in your excitement) is a cathedral to organic food and non toxic, ethically sourced food, supplements and other products. We have Infinity Foods which is pretty lucky but Infinity has a long way to go if it is to match Whole Foods quality and choice. There was a store near where we were staying and I made Rupert return there almost daily to get my organic juice and vegetables and more. The choice was outstanding as was the quality of the fresh food. 

We are home now. All is different with no Ned and Tom and Ella no longer at school. William was the only one up and in uniform on the first day at school. Every year I have taken the traditional first day of the school year photo. This year it consisted of William. I feel rather in limbo as I have no definite proof the cancer is on the move but in the past the liver marker that is rising has always been the first sign of this happening, so I am getting myself ready just in case. Ovaries out first. 

I have added 2 new treatments into my mix since getting back. One is chinese medicine and the other is GcMaf. I had had acupuncture before but not regularly and this time I am going to a fully trained Chinese doctor and starting a course of acupuncture and cupping (to release toxins, strengthen immunity and stimulate blood among other things). I have found someone I consider very good and after my first session with him I had a temperature during the night, which I interpreted as a good sign, my immune system had been given a jolt. The GcMaf is more controversial. I have been researching it for a very long time and heard all sorts of views. I am convinced there is something in it and have finally tracked down a supplier I think is most credible, with published papers on line. It is a Japanese family of clinics Saisei Clinics, which offers a whole range of non toxic approaches and immunotherapies (http://www.saisei-mirai.or.jp/immunotherapy/index_eng.html). They had been recommended to me before but Japan is not practical. Although I may change my mind if I believe they have something to offer I cannot find elsewhere. GcMaf or GC Protein derived Macrophage Activating Factor is ‘a highly effective macrophage activating therapy, used to stimulate the immune system and activate macrophages so that they can destroy cancer cells and other abnormal cells in the body’. I am not going to sell it, as I have not really started it yet as my consignment is stuck in customs in Coventry, but I have read enough that makes me think it is worth adding to the mix. I will report more as I go.

According to the Japanese Clinic it can be used as part of an integrative approach. Other suppliers insist it will not work if you are on chemotherapy and that you need to be on a ketogenic diet. I do agree that it has a greater chance of working if you are not on chemotherapy and that a ketogenic diet is ideal but chemotherapy has a role, it can reduce the cancer load which can then give the GcMaf a more manageable task. On the ketogenic diet, I am more convinced about the role of sugar and carbohydrates but I find it impossible to eat ketogenic (almost no sugar, good fats, some protein and vegetables mainly). So I am going for low carbs at the moments, good fats, vegetable and protein but I have some fruits. I have eaten more meat over the summer, but not much and with vegetables not carbs (except for Friday market rosti chicken and fresh bread from the local french market which was a weekly treat). 

I continue to write my stories for my family. My appreciation for writers has soared as I realise that despite a desire to write and things to say it is very difficult to find the time to get on with it. Here is something I have written about where I will go one day. Where we will all go one day for that matter. 

Where will Mum go when she dies?

Well, that is a very good question and one Mummy thinks about a lot. Some people believe in heaven, a beautiful and peaceful place. Others believe we are reincarnated, that means we come back as another creature or person. Mummy thinks it must be somewhere in the middle. When you die she thinks it must feel like just falling into a deep, deep sleep but never waking up. Instead we find a kind of peace coming back to life as our cells are reabsorbed by nature. When she dies she will be the wood pigeon. Every time you hear it softly coo it will be Mummy talking to you, telling you she loves you and is watching over you. She will be telling you there is nothing to worry about and that she wants you to love life and be happy. She will also be the breeze*. The breeze that gently blows the trees making the branches bend and the leaves rustle. The breeze that brushes your face as you walk and ruffles your hair when you run. The breeze that wraps itself around you so that you know Mummy is there. 

Everywhere you look you will see other Mummies keeping watch over their children. The bees buzzing, a dog barking, water running, cows lowing. They are the rain that trickles down window panes and drips off eye lashes, the clouds, always watchful, playing games in the sky, sometimes making shapes for you to guess what they are, other times covering the earth like a thick cotton wool blanket. Some Mummies are the snow falling silently, tickling your cheeks and freezing your toes. Others the waves on the sea shore, always present, always watching, talking to their children, sometimes, playing with them as they race and jump and whoop, catch me if you can, she will be shouting, ‘I’m coming to get you’ as she whooshes up the shore snapping at their ankles. You can find most Mummies in the light of a candle, flickering and dancing, watchingcarefully as you stare into the flame. Some Mummies are the blanket that covers you at night, protecting you, keeping you warm, keeping you safe. They are the heather on the moors, the daffodils in the spring, the leaves falling off the trees. They are everywhere. But your Mummy will be the wood pigeon and the breeze and she will follow you all through your life. When you hear her or feel her listen very carefully. She loves you.  

*because every little breeze whispers Louise

I lost one of my new cancer friends over the summer. That day I saw a baby turtle struggling on the beach until a wave came and washed it into the sea to and to freedom and I imagined it was Graham, free now to explore the world with no pain.