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.

Science not magic…Dendritic Cell Therapy

June 18th 2015

I am now home! I had the vaccine on 16th June. As Dr Martin gave it to me I said ‘Please let it work it’s magic’.  ‘It is not magic’ replied Dr Martin, ‘it is science!’.  They injected 6.3 million dendritic cells into me. Apparently anything above 1 million is OK, but Dr Martin is quite understated so I cannot work out if 6.3 million is good or just OK.

He gave me a dose of interferon with the injection; I think to stimulate my immune system. I was warned I should like to get flu like symptoms a few hours after the vaccine which would last for a few hours. And sure enough about 3 hours afterwards I lay in bed shivering and aching and with a good high temperature. It lasted almost 8 hours – but I was happy as this is what they want to happen. I felt rather black and blue the following day, on which we caught the flight home after my last session of hyperthermia. I will return in July, early September, October and November. Meanwhile I wait and hope they are doing their job.

June 14th 2015

It is Sunday today. I have a day off, that means no treatment. It is a beautiful day so I have spent this morning in the Botanical Garden and at a near by café (drinking green tea of course). Gottingen is a really lovely town. The people are polite and kind and there is so much life. It has a population of about 125,000, a quarter of which are students. 

Kate left on Thursday morning and Teresa arrived that night, she then left this morning and I will soon be joined by Sophie. Spending time with these amazing friends has been a treat. There is definitely general juicing rivalry going on. Ella was the one to beat, not only for size of the juice but for how unpalatable it was. She has had more practice granted, so the playing field has not been even. Kate made a valiant effort, and was particularly harsh over the last dregs which she made me finish almost to the last squelchy, foamy, yucky deposit that collects at the bottom. But I think Teresa wins. I actually threw up a few minutes after her first attempt. It was possibly a case of too much beetroot, but the effect was spectacular. Her confidence was shaken but she persevered.

Since I last wrote I have continued with daily hyperthermia. Then on Friday I had the first dose of the Newcastle Disease Virus. This is given as an infusion (ie mixed with saline and fed through a line in my arm). It is used to help support the dendritic cell therapy. The history of it is fascinating. I am going to copy some of the clinic’s summary about this this virus that was included in the consent form I signed before they administered it.  There is some clunky English by whoever translated it from German. Here is a photo of the vial the virus that went into me came in. 

Tumor Therapy with oncolytic virus Newcastle Disease Virus (NDV)

With regard to the up to know unfavourable results of conventional therapy in the treatment of especially advanced tumours novel therapeutic methods have to be developed. …a promising approach is the treatment with replication selective viruses, also called oncolytic viruses. This approach is also known as virotherapy. The approach to virotherapy in our group is based on the Newcastle Disease Virus (NDV), one of the most promising candidates among the group of oncolytic viruses….NDV is not a pathogen for humans and is harmless causing only mild flu like symptoms or conjunctivitis in the worst cases. NDV replicates efficiently in humans in tumour cells, only leading to the complete destruction of the infected tumor cells within a short time. In clinical studies with NDV carried out so far, significant tumor remissions as well as prolonged survival periods have been observed with a very low rate of observed side effects. …The oncolytic potential of NDV is highly increased by the additional application of local hyperthermia before the administration of NDV, and by vaccination with Dendritic cells afterwards.

I will be given this again on Monday, with more hyperthermia and a drug called Zometa  which is used for osteoporosis and for people with breast cancer in their bones (maybe for all cancers) – but I think it works to harden the bones but has an effect on white cell production and is used to prime the immune system.

I feel very safe here and confident that this therapy is based on good science. Indeed I have been talking with Dr Martin to understand more about the history of the therapies and why they are not more widely recognised  given that results are at least as good as conventional therapies and do not destroy the immune system like chemotherapy does. I will continue to investigate this, as from what I have learned this is a story that needs to be told.

The Scientist Ralph Steinman, received a Noble Prize in 2011 for the Physiology of Medicine for the ‘discovery of the dendritic cell and its role in adaptive immunity’. Not one scientist has received the Nobel prize for chemotherapy.  ‘In 1973, Steinman and Cohn discovered dendritic cells, a previously unknown class of immune cells that constantly formed and retracted their processes. This discovery changed the field of immunology.’  www.nobelprize.org

This is what I have so far pieced together, but do not fear I will find out more. For the first two decades of his research the potential of dendritic cells was not appreciated but by the mid 1990s they attracted growing attention from the scientific community. Ralph Steinman,  was himself diagnosed with Pancreatic Cancer in 2007 and more or less told to go home and that he had probably only a couple of months. He believed that dendritic cells had the potential to fight his tumour so he administered dendritic cell therapy to himself. He survived almost 5 years, which was unheard of for pancreatic cancer (and is pretty rare today). He died 3 days before the prize was announced and I think is the only person ever to have been awarded a noble prize posthumously.  You can read the Nobel Prize Lecture given on behalf of Steinman here: http://www.nobelprize.org/nobel_prizes/medicine/laureates/2011/steinman-lecture.html

The University of Gottingen is one of the best know Universities in the world for science.  A team here undertook a study in the 1990s, comparing outcomes from the treatment of renal cancer (which like pancreatic cancer has limited treatment options) between dendritic cell therapy and the chemotherapy gemcitabine.  The results were impressive with survivorship among those receiving dendritic cell therapy being significantly longer than the other group. The University were naturally very excited about this ground breaking research and published (among other publications) a one off glossy report celebrating and sharing these results.

 From here I am still piecing things together but I understand that these findings attracted research funding from Denmark to the tune of 5 million Deutchmarks but things went wrong when a researcher doing his post doctoral thesis was found to have faked some data in this subsequent study. The reputational impact of this on the University was severe and they were quick to respond, closing down the research which effectively bought the investment in the study of dendritic cell to a close.

Over this period Dr Nesselhaut and Dr Martin took their work to their own private practices in and near Gottingen (Duderstadt) where they set up their own laboratory and continued to focus on this therapy, and after much scrutiny from the relevant health authorities are able to offer this. Mainly it is available only to patients able to pay for it, but there is at least one insurance company (Max Plank) for patients in Germany which will pay for it (presumably because they have looked into the results and are actually interested in outcomes).

Not long ago the University showed renewed interest in partnering with Dr Nesselhaut and Dr Martin to continue research in this field but they could not reach an agreement and the University is no longer pursuing this. 

So this helps explains why these two clinics are located where they are offering this therapy. Why there has been no further major interest in this line of treatment I simply cannot understand. It can only be a commercial decision. The original findings from the study on renal cancer hold. The Nobel Prize winner was certainly not a charlatan. Is this really a case, as many I am coming across, of certain therapies simply not offering sufficiently high financial rewards to be worth the investment in further research necessary for them to become accepted or offered as part of normal practice. Certainly, as I mentioned in the earlier blog, the approach is highly personalised, time consuming and does not produce a vaccine which can be mass produced.

In the meantime there are some uncomfortable truths about existing treatments. I am collecting papers, unfortunately in German and so I will need some help with translation, but one of them is written specifically for German Health Professionals, and is traditionally a very conservative publication. Published in 2005 authors undertook a retrospective analysis of studies which examined outcomes for patients with mestatic breast cancer (aerzteblatt.de) and they concluded that length of survival had not changed in 20 years (Metastasiertes Mammakarzinom: Keine Lebesverlangerung siet 20 Jars). With the introduction of a growing number of more targeted therapies (eg hormonal) since this paper was written this is likely to changed and I  will  investigate and update. (source www.aerzteblatt.de/archiv/48590). The main treatments offered over the period of this review were surgery, chemotherapy and radiotherapy.

Another often quoted paper (The Contribution of Cytotoxic Chemotherapy to 5-year Survival in Adult Malignancies – Clinical Oncology (2004) 16: 549-560) reports findings from a study which examined more than 300,000 patients with different cancers across USA and Australia who all received chemotherapy. The authors wanted to determine what the 5-year survival benefit that could be attributed soley to cytotoxic chemotherapy in adult malignancies. They estimated that the overall contribution of curative and adjuvant cytotoxic chemotherapy (chemotherapy alongside another treatment) to 5-year survival in adults was 2.3% in Australia and 2.1% in USA.

For mestastatic breast cancer specifically they write the following:

In breast cancer, the optimal regimen(s) for cytotoxic chemotherapy in recurrent/mestatic disease are still not define, despite over 30 years of ‘research’ and a plethora of randomised controlled trials (RCTs)  since the original Cooper regimen was published in 1969. There is also no convincing evidence that using regimens with newer and more expensive drugs are any more beneficial than the regimens used in the 1070s.

In addition two systematic reviews of chemotherapy in recurrent or metastatic breast cancer have not been able to show any survival benefit. The absence of quality of life data in many RCTs of cytotoxic chemotherpay has also been noted.

Although guidelines may exist for some uses of palliative cytotoxic chemotherapy, clinicians are not restricted from giving second, third or fourth line palliative chemotherapy in the face of progressive disease and minimal response rates.

As I read this oncologists can basically prescribe chemotherapies as a second and third plus, lines of treatment, even though there is no evidence of response rates worth writing home about. Despite this, therapies like dendritic cell, which have a stronger evidence base than the use of these chemotherapies as second plus line therapies, are not being seriously considered, dare I say it ignored. The science behind DC therapy is good. Their results are impressive compared with many existing treatments. I am still at a loss to understand why there has not been more interest in this.

 Over the last 10 years the science of cancer really has broken open and there is exciting research on a number of fronts, including immunotherapy eg. gene therapy, stem cells. But there is a bottle neck between this research and what is getting through to patients in the form of new treatments. As we understand more about cancer the more complicated the research on treatments becomes.  Clearly every person’s cancer is unique. Personalised treatments would therefore appear a sensible way forward. The treatment I am having is the ultimate personal treatment in that it uses my own immune system. There are no mass market products to be made out of this therapy. Hence no interest from the pharmaceutical industry?

I do understand that pharmaceuticals need to make commercial decisions and that a vaccine that works for a large number of people may be a better longer term solution but what happens to those treatments which do not cut the commercial mustard?  They may work, but what returns would any investment make? Would not Cancer Research and the like not be the groups, with theoretically no commercial interest and patient outcomes their priority, be the type of group to take up the mantle for these types of therapies? From what I have seen on their website they are very conservative with a small ‘c’ and cautious. For those of us with advanced cancer, hell, we are prepared to take a few risks and we need a system that will enable those opportunities. We need to be treated  like adults, able to make decisions about risks of the unknown vs taking no risks at all and dying anyway or having chemotherapy again and again and, oh!, also dying anyway.

 I have often seen statements such as ‘there is not enough evidence to support the use of x y or z’. This does not mean x y or z are not of potential benefit and should therefore be ignored, but that the evidence, to the standard currently required, necessary to make this decision does not exist.

When the cat’s away….

There has been a delicate balancing act while I have been away and with Ella now in Thailand. Rupert was in full control last week but this coming week he is away for work so we have a patchwork of help until I get home.  I have enjoyed the space away from home to absorb some of the very big thoughts that whir around my head, or that I have pushed to one side until I have had the space to give them the time they need. Having my greatest friends, who have known me almost all my life, has helped. I am still getting to grips with the uncertainty of the future, and working around treatments, scans, injections and not knowing quite how far I can plan ahead.

In terms of treatment options, now that I am in Germany I am planning my next move.  I will be returning here at least 4 times but I have to consider what I would do in the event of a relapse. This means being very clear about what my options are so that I can move quickly in the event this happens.

I have a PET scan on 23rd June, as my oncologist needed this to complement the CT scan as a baseline for me. I will see him every 6 weeks I think. I continue to take the hormone pills, and, touch wood, feel generally not  too bad on them. I cannot quite distinguish between what is tiredness from the chemo, the current treatment or the hormones – but with no home responsibilities I am able to take it easy between treatments. I continue to meditate daily and take my many supplements and other pills/medicines. Eating vegan has been easy here, although there seems to be a habit of adding sugar to dishes. I have had lunch at the same vegan café everyday as the food is delicious and organic. For the evenings we either make something simple at the studio apartment (but the kitchen is so tiny this does not involve cooking), or we try and find a local restaurant with vegetarian dishes. Our lack of German is a problem. I am fascinated by the language and am learning bits and pieces from the menus mainly. Spargle – I think is asparagus. Kartoffen – potato. I have also worked out (rather William, my third, who learns German, had told me before I left) that nouns in written German start with capital letters. I realise this is why, when you read German, it always looks as if you are being shouted at. 

Scan Results B/B

The oncologist looks for 3 things. 1) am a well 2) what does my liver chemistry look like 3) what does the scan look like.  I am well. My liver bloods have improved and are almost normal. My scan has not changed from the baseline.  He would have ‘liked to have seen more of a response’. They are keeping me on the placitaxel as the improvement in liver function would indicate it is working. But I am disappointed and low. I will have another scan in 4 weeks and they will keep monitoring the bloods. The conversation underlined how unpredictable my situation is.

What positives can I squeeze out of this meeting?

That it has not got worse – and cancer multiplies so something has stopped it multiplying.

What is making me sad?

That it is more difficult to stay positive with no visible change in my situation from when I started. That even if the chemo simply keeps it stable (which may be the outcome) – they will still try me on hormones – but I still have a compromised liver and any progression if/when the hormones stop working means I have less to play with.  The worry that it is stubborn cancer which will shorten my treatment options as the ladder of treatments will get eaten into more quickly.

Rupert was with me. He was strong for me. The children were all aware what was going on – and quizzed us when we got back. I had been in London for the day at work and was tired anyway which made it hard to hide my feelings. I felt low and flat. Ella reminded me of what was positive. She found a study that showed that stable disease had similar outcome as those that regressed (but I don’t think that related to the liver).  She also read that CT scans do not show live cancer (like PET scans)  and as mine is salt and peppered it is more difficult to compare the change. Had a number of big tumours you can measure the difference quite easily.

Regardless…I have woken up on Tuesday morning and I am a bit teary. 

The Scan, Dr Who, the Numskulls and Ghostbusters

The Scan

The Scan was at 9am yesterday. It was a CT Scan. This involves lying on a bed which goes through a polo shaped machine. You are hooked up through a cannula in your arm to a massive injection of iodine (to provide a contrast) which they inject into you seconds before the scan happens. The iodine makes you feel warm in your throat and your bladder strangely – for just a few seconds. The scanner person (not sure what his actual professional title is) was Polish. The same person who did my pre- chemo scan. After that scan I was convinced I could read his face and his face told me that not only was my liver riddled with cancer but that it was all over, bones, lungs, everywhere.

There is something about being near a person who has information about your condition before you do. You can’t help yourself, but you hang on to and try and interpret every twitch, every smile, frown, poker face. In this case my assessment was that he was being more friendly than last time. I put this down to my bandana - I was clearly a youngish women with cancer. Reason to be nice and kind. He chatted more than last time. I asked him if he could please take some really good pictures and he said he would do his best.

We had a funny moment. Prior to the scan I had to get dressed into a cotton hospital gown that ties loosely at the front. He had told me, in his relatively thick accent to ‘take off your clothes except your underwears’. I did so.  Not long after, as I lay still for the initial mapping scan  - the preparatory scan they take before the iodine goes in, he came out of the little command centre room next to the actual scanner which he retreats to when the scanner goes on and said ‘we have a little problem. I said to undress to your underwears’.  Now I took underwears to include my bra. Rather stupid given the area I know they need to scan. So there I was with an big iodine injection attached to my right arm and my bra still on. I managed one handedly to undo it, thread it through the arm holes and hang it down the side of the machine (I keep my arms above my head). Very deft expert bra removal process. Note to self. Take bra off before next scan. 

Once the scan was over my assessment was that he was not going to catch my eye. He put on his poker face. Not sure what to read from that given that last time I decided the cancer must be everywhere. Hoping that he has been expertly trained to give nothing away because if he were to smile and wink this time there may be a time in the future when he does not smile and wink so best to make no face at all, ever.

I will find out on Monday afternoon and will spend the weekend working out what questions I need 

to ask the oncologist.

Visualisation – Dr Who meets Ghostbusters and the Numskulls….

In all of the books and testimonials of recoveries, visualisation plays a major role. People have a way of visualising their bodies overcoming the cancer. Now I have always been rather irreverent about such approaches. The last (and only time) I have really attempted visualisation was during my pregnancy with Tom. After Ella’s rather car crash birth I was determined to give birth to Tom normally and did every possible birth class I could to help me prepare physically and mentally. One of these involved yoga, breathing exercises and usually ended with a visualisation. As I had a small baby at home I would sneak off once we got to the visualisation session. But one day I decided I really needed to engage. I sat,  willingly, open to the possible benefits it may accrue to my future birthing experience. I would not let my mind wander. I would  take this seriously. It clearly works for many people, I just needed to  open my mind to it. So the visualisation began. We had to close our eyes. Breath.  We had to think of place, special to us. I thought of the hills of Mid Wales where my Dad used to take us on long hikes and climbs as children.  After a while we had to sit down and look around us. We needed to find a flower nearby and focus on this. Then we needed to focus on the petals of the flower which would start closed and would then turn to the sun and begin gently opening.  Hmmm. We needed to imagine our cervix, a bit like the flower, opening up. Well –what flowers do you think you would find on a hill side in Mid Wales? When I looked round I was surrounded by bracken and thistles. So my flower was a thistle. At which point I nearly wet myself laughing and had to leave the room. Visualisation was simply not for me.

But…I am in a different place now. Open to any strategy that my help my path to life. So I have been considering for a while what my visualisation should be. There are times (like when you are lying on a scan machine or you wake in the middle of the night) when you need something to help you focus your mind. I read about one person who imagined their blood was powerful and strong and would splat the cancer and dissolve it like an acid. I thought that would be a bit monotonous. There are only so many versions of a splatting motion. I thought about ants. Millions of worker ants trekking through my body, seeking cancer cells and collecting them all up. Then I considered miniature white morph like characters. But that didn’t last long. I had thought of a more military approach. Basically an army swot team planning strategically to take out those cells. This would involve lots of blasting and tactical plans. The dietary privations I would inflict upon the cancer would be akin to starving the enemy. I still think it works well but it was a bit anonymous. Faceless soldiers, blasting around my body. These cells are in fact my cells. Part of my body. Rogue, badly behaved cells, but mine all the same. I needed a different approach. So here it is. It came to me during my last pre chemo acupuncture session.

It has some of the essence of seek out and neutralise. It involves a team, rather than an army but it allows for the same strategizing and tactics. It is Dr Whoesque with a bit of the Numskulls – those people in the Beano Comic who control the person from the brain. They have numskulls to open the eyelids, roll out the tongue etc. In this case my visualisation involves a huge team ‘Team Lou’, yes, there is some funny Team Lou t-shirt or uniform (think paintball kit). Team Lou is made up the huge network of people who have simply overwhelmed us with their love and support. From our closest family to parents of the kids friends who just drop by out of the blue with a meal. The team has some distinct chapters. There is the prayer and spiritual chapter – those friends all over the world praying and doing medicine pujas etc. There is the food chapter. Diane and Jeff who come every Wednesday and cook all afternoon, producing at least 3 or 4 meals for me and the family. Christine who seeks out organic vegan recipes and creates meals she drops by with. And Rory who cooked a massive shepherds pie for the kids and dropped it off. My mother cooked a lasagne, Colleen a squash soup and homemade sourdough bread. Teams are not exclusive and people belong to a number of chapters. There are the regular text messagers, love and uplifting thoughts and sayings (Tim and Paula). The flower and present chapter – includes everyone – I have never been so spolit. Grizzle (Clare) sends weekly packages with presents – organic creams, notebooks, music, supplements. I have had books, CDs. The love and friendship chapter – is every kind action and thought that keeps me and my family, lifts for kids to places we can’t get them to or from, kindnesses and hugs. Then there is the medical and broader health and well being support team - the oncologist, acupuncturist, yoga teacher and lovely Ann Rose who smells of lavender and volunteers at the chemo unit, and has done for over 25 years, and massages my feet while I am waiting for chemo.  So – this team (I still want to call them an army) – have been shrunk and transferred to my body, I have a particular Dr Who episode in mind, and they exist in miniature, dressed in their Team Lou kit with a Ghostbuster type machine on their backs, a cancer buster. This is a bit like a hoover which is used to vacuum up the bad cells which are then neutralised in the machine and spat out the other end as healthy new cells.

Currently most people are concentrated on the liver area of my body, as that is where the rogue cells are running amok. But I see my brother leading a team, which includes Ned and William, into the further reaches of my body, in search of any cancer stem cell five star generals daring to set up camp somewhere else in my body. Much of this affair is controlled by Marshalls (the Numskulls) from a control centre. Ella is there most of the time but Rupert is there, Tom and others at various times and my sisters. As I down one of my fiercely green juices or a green tea I imagine Ella speaking through the intercom system to warn people that the cancer cells will be particularly vulnerable as these pass through my body so to keep their eyes open for cells lurking in dark corners trying to avoid detection.

A rather bizarre and mad visualisation – but consider how many scenarios to I have to play with! The only problem with it is that if I wake up at night it is not a particularly calming visualisation and it is a bit like switching the telly on. So last night when I found myself awake at 3am I switched that visualisation off, Team Lou was fast asleep and I put my Reiki infused rose crystal a lovely old school friend sent me, around my neck. I splashed some Lourdes holy water that another friend from Team Prayer sent me and then crossed my liver with some powerful holy oil from Colombia, a friend from work gave me. Then I tried my yoga breathing as my heart was beating too fast and repeated the word ‘heal’. That was a bit more appropriate for a night time.

But the above mad and busy Team Lou scene is what distracts me at all other opportunities. It amuses the kids. 

Louise’s first major foray into visualisation goes overboard. 

Scanxiety, treatments and a club I am not sure I want to belong to….

Treatments

I realise that in my blog last time I spent a good deal of time talking about all the ins and outs of chemotherapy, surgery, radiation and hair loss. I don’t really want to do that this time. I feel somehow above all that – been there. I may share a few details – but I will be sharing only happy and vibrant photographs. I want to focus more on my other journey – healing. Taking control and learning about survivorship. The chemotherapy will only manage the symptoms of the cancer but it won’t cure it. In fact chemotherapy can make the cancer stem cells more aggressive. They are clever cells. Five star generals, cleverly hidden from your own immune system so they can stealthily race around your blood and avoid detection. Outside of the more conventional approaches to managing cancer there are so many inspirational stories of survivorship. People taking their healing into their own hands and using a whole array of approaches which help the body manage the cancer itself. Not necessarily rid themselves of it but live with it, keep it under control. The benefits of turmeric, green tea – just to start are, and have been well known (and written about extensively) – but there are more. At some point I will share some of what we (myself and Ella) are doing to take control of my life and to do our damndest to make my body a place which is very inhospitable for cancer, and to make my immune system more able to manage it.

I will not reject more conventional medicine (at least not yet) but will use it to support the process. The regime of diet and supplements, yoga and acupuncture I am already on has had an amazing impact on my side effects. These last two week I have had way more energy than after the first 3 rounds of chemotherapy and my blood count before my 5th session went right up. My daily routine goes a bit like this:

Lemon water, sauerkraut (for enzymes), a fresh juice (all prepared by Ella) and then the following supplements – fish oil; turmeric; milk thistle; chlorella; aloe vera; spirulina and matcha green tea. We have found a supplement called Avemar which I take twice a day (8 tablets a day) – this has been amazing for side effects. Then in the evening I the same supplements plus co enymze Q10 and l-glutamine to help prevent neuropathy. I drink green tea through the day, 3 juices and my diet remains vegan and mainly organic. I do yoga at least twice a week (sometimes before the sun comes up when the night meets the day. This is when the birds start chirping). I also have acupuncture before the chemo.

My dry skin which had been itchy and inflamed for the first 3 weeks of treatment has settled and is clear and soft. I went on a walk on the Downs with Ella about 3 weeks ago and could barely walk up the hill again. I nearly fainted and had to lie down on the ground more than once on my way up – Ella stood over me like a running coach reminding me that getting better was never going to be easy and I had to put so muscle into it. Last week we did the same walk and I stopped only once on the way up. My brain feels alert. I am not without side effects but they are extremely manageable and I feel pretty good – and with my new hair definitely don’t look like I have some life threatening condition. Together this simply confirms that I have the power to influence my health.

New Treatments

I am also trying to get to grips with scientific developments. Trials, immunotherapy, gene mapping, personalised medicine. We are on the cusp of such major breakthroughs in treatment – I simply have to stay alive long enough to benefit from some of these. The United States seems streets ahead. It seems quite normal there (according to my ‘friends’ on the Inspire site – a site for women with advanced breast cancer) for women to have their tumor mapped for genetic mutations for example. There has been no question about testing my biopsy for mutations. I am not even sure you can do it within the UK unless as part of a research trial. In the US you can send your sample to Foundation One and they will examine it. They may identify a number of mutations. That information may simply be inactionable. ie that there is no treatment option indicated as a result of this knowledge. But it may be that that the mutations identify indicate eg DNA repair is the ….

Here are two responses to a question I posted asking about genetic mapping. The first response tests my intellect a bit – but I am working on it. Second one more straight forward.

‘

It might be helpful to stop thinking of cancer in terms of the genetic mutations that drive the cancer. It's nice to know whether the gene is present or absent, but it would be even nicer to know whether the gene is "actually" driving the tumor in your individual cancer cells. While some laboratories use genomic or proteomic testing to detect mutations in certain pathways, some other laboratories use functional testing to measure the end result of pathway activation or deactivation in the individual (not average populations). It can then predict whether the "individual" cancer patient will "actually" respond to a targeted agent, or not. When it comes to drug selection, the molecular investigator can only measure those analytes in paraffin wax that they know to measure. If they are not aware of and capable of measuring a biologically relevant event, they cannot seek to detect it. The premise of functional analytical platforms is that the observation of a biological signal identifies a candidate for therapy whether they understand or recognize the target.'

‘Basically, the way this testing works is that they look for common cancer mutations. The mutations in the Foundation test are not limited to those commonly found in breast cancer. The idea is that you could have a mutation that is common in another type of cancer, and there may be a drug available that is directed at that particular mutation (for example if you had an EGFR mutation, it might suggest that an EGFR inhibitor may be effective for you, even though the drug was developed with lung cancer in mind).’

There are other treatment routes - again including drugs licensed in the US but not here yet and an approach I am exploring – dendritic cell therapy (immunotherapy)which is only possible in Germany and Mexico but for which I have read some very powerful evidence and testimonials. I will talk more about these – but as you can see – staying alive is going to require military planning, research, tenacity, determination and probably a good bit of fund raising at some point – as the treatments of the future can only be had now if you are willing and able to pay.

Scanxiety

In two days I will have my 6th chemotherapy. Six out of 12, assuming that it is doing what it is supposed to do. I will know that about a week or so after this session as I will have a CT scan. I have had only a couple of meetings with my oncologist so far, and these have been a bit of a blur. It was all so new I more or less just listened, asked some very basic questions and followed instructions (doesn’t sound like me!). I was scared too, scared to ask questions for which I did not really want to know the answer. I have avoided too many probing questions. There are questions I have not asked but for which an answer exits (as opposed to crystal ball type questions for which the answer is almost certainly ‘… well it depends, everyone is different’, for example about the extent of the cancer on the liver. It was described by the cancer radiologist at my first scan as ‘salt and peppered’ through my liver and in my written first CT scan report as ‘extensive metastasis’ . I gleaned there must be tumours of sufficient size to take a biopsy (so a bit larger than salt and pepper) or I would not have had one. Other than that I have not asked directly anymore detail about the state of my liver. I know my liver bloods are OK – so it is not actually affecting the functioning of the liver at this point. It does feel swollen and hard which does not feel right. But with my scan coming up I am thinking that these questions will soon inevitably be answered as the meeting to discuss the scan results will specifically look at how responsive the cancer is to the current chemo. To determine that there will need to be a comparison between the first scan and the one I am soon to have. So one way or another I will soon have a better idea of the state of my liver, before treatment and around now.

There are a couple of websites I spend time on (mainly Inspire – which I mentioned above) and I search these for insights into the stories of other women and I join in saddo conversations about all things advanced breast cancer. There are often stories of great responses, and then set backs, but there are examples of women with liver mets who do have good responses to treatments and tumours can be pushed right back and there are even people who have periods of NED.

Oh the acronyms I am becoming au fait with! NED = No Evidence of Disease – and this is really the outcome you want after your scan. This is the A* of scan results. Other outcomes can be ‘reduction’ (A-/B+)….not sure that is the proper term but the tumours are getting smaller, ‘progression’….ie the tumours are still growing (C/D), ‘significant progression’….growing lots, (E/U) ‘ no progression’ (…no change) and ‘stable’ ie no or little change after a period of no progression or reduction (B-/C). I am trying to work out what would be top marks at this stage in the game given I like to be an A type student – but don’t want to get myself too hopeful as I am not even sure really what my baseline was – so could I even hope for NED by the end of my 12 weeks? For the moment I will be very disappointed with progression and reckon this would result in me stopping this treatment and starting something else. No progression would be a bit of a nothing result. Reduction is the one I am going for (not sure if ‘significant reduction’ possible after 6 sessions). I realise that I have a future of what a new facebook group of friends (very exclusive, private invitation only – you just need to have advanced breast cancer to join) call ‘Scanxiety’. And I am experiencing it for the first time. First but definitely not the last time.

Who are my New Friends?

Through the Inspire website, I posted a question and someone from the UK messaged me and asked if I would like to join a chat group of women in the south of the UK. A support group of women in the same position. I joined and within a day I had 76 messages of hello and support from this group of strangers. I felt rather overwhelmed. Lots of ‘Hello Louise!’ ‘Sorry you had to join us but we are here for you!’ type messages. I have since received a constant stream of posts from members of the group chatting to each other. I don’t really understand facebook at the best of time, but it has been non stop and all posts seem to land in my email inbox. I worked out today how to stop this happening. I am not sure I want to be part of that group anymore. The last post I read before going to bed last night was ‘Help. It’s in my brain! What am I going to do? Scared’. This morning it was a depressing one from a women saying what a terrible mother she was and how could she have done this to her children. I couldn’t help myself and spent some good time scanning the posts – all quite depressing stuff ‘Buying a wheelchair – any ideas?’; ‘liver resection – worse than childbirth’ ‘Running out of options’. Not surprisingly I felt low yesterday – it’s like being invited to an exclusive group you really don’t want to be part of, yet these women are all managing a whole range of physical and emotional and social issues just like you – but somehow I need to feel apart from this. Slightly exclusive. I am going to be different. I am sure they all think the same.

Scan tomorrow. Will I be an A*student or will it be more of a B-/C….?

Writing two days later....Had my sixth chemo today (19th March). Imagined my scan would be about a week afterwards but no – it is tomorrow morning at 9am. Gulp. My white cell count and neutrophils were good today – better than last week and best so far on chemo – which is testament to my diet, supplement and moxa regime. This means I will avoid white cell boosting injections if we can keep it up. We have the power…

Telling the Children – again…

I have been trying to work backwards to get the sequencing right. I had the endoscopy on January 22nd, a Thursday. It was Tuesday 27th January that I had the ultrasound and found out what had been going on in my body. That week I had a parents evening for William and his birthday on the Saturday. Rupert and I needed to try and absorb the news before we would know what on earth to say to the children when we didn’t really know what it all meant for us. We knew we didn’t want to ruin the joy of Williams’s birthday and so agreed we would tell them on Sunday 1st February after a family walk on the Downs. Ella was on her carefully planned year off, volunteering and learning Spanish in Cusco, Peru and was due home in a few weeks before the second part of her travels – to Asia.

How do you tell children news like this? I went to talk to Lynette who helped us. Always tell the truth. But the reality is the truth is full of unknowns. The truth is that the cancer has come back, that the doctors are going treat it like they did last time and they will be working very hard to keep treating it. It would not go away but there were lots of things they could do. In a later blog you will hear more about what I believe doctors can in fact do (possibly help treat the symptoms –but not the cause and that is something that I must do).

We were not sure if we should tell the boys first or Ella and agreed that we should call Ella as we did not want her to hear anything via her brothers without talking to us. On William’s birthday we had been to the cinema and then to have a pizza (I was already, at this point, avoiding all dairy and meat – which limits your options in Pizza Express – so I had a not very delicious plate of broccoli). We called Ella on the Saturday morning (Peruvian time). She was far from home and was very tearful. She said she was coming home that evening, and tried her very best to do so but it was too late in the day in Cusco and with travel agents. We tried to encourage her to stay a little longer and say goodbye to people. I can’t believe I actually thought she might stay there. In all of this guilt has been an overriding feeling for me. Guilt that this news has / will profoundly impact the lives of my children, my parents, my siblings, my best friends and of course, Rupert. So Ella’s immediate response to come home was the first very tangible example of this. Already the course of her life, as I (and I am sure she) had imagined it, was changing. She had worked for months at Subway, making sandwiches and babysitting when she could to earn money for her travels and she had planned so carefully and with such excitement. She booked her return ticket and we had her home by Monday. She is now my constant companion and we are exploring the world of cancer and strategies to live together. Her presence has grounded the boys, she replaces my spirit in the home when I am not feeling 100% with the chemo and she is a second mother figure for Ned.

We told the boys later that day over lunch. As with the last time I had wanted them to see Rupert and I interacting in a normal way, I wanted them to see that we were coping, as how we were, as I knew from last time, was so important in setting the tone for their reactions. There were tears and hugs and more tears and questions. But no tears from Rupert or I, we were positive (as I am) and just repeated that while this time they could not get rid of it completely we would be fighting it and I would have treatment, but that things would change. They asked if I was going to die, Ned did, and I asked him to ask me if I would be run over anytime soon. To which of course the answer was, I hope not and I don’t know. They clearly needed reassurance that I wasn’t going anywhere anytime soon and we told them that if we ever thought that was the case we would tell them. The tears subsided and for the following couple of weeks there were a stream of questions, not from all of them as a group but one on one. Having Ella has helped as Tom can ask her whatever he wants and I think trusts that she will tell him how it is and I think this gives him some reassurance. In my heart I know that I have opened up a new possible future in their brains, one without me, but I know they will have time to come to terms in some way with that possibility with the security of my love and Rupert’s love around them to consider this future.

I had called William and Ned’s school to let them know the situation so that they would be ready to put in place the necessary support systems there. William is quite self-contained, he has been more demonstrative with me, kisses and hugs, which he was never so free with and he has asked me more probing questions about the cancer and the treatment, but he has not discussed it with anyone at school (at least no adults and I doubt even any of his friends). Ned however had 2 or 3 wobbly weeks, needing to leave class a few times to go and sit with matron. He has a lovely friend from his old school who has been keeping an eye on him and she would accompany him to matron and sit with him in class. One time he said he was looking out of the window, and he thought about me as a young girl and that made him cry. He is in Year 7 and instagram seems to be how they all communicate. As he constantly loses his phone he has installed it on mine – so I get to see what is going on (!). There followed a whole range of ‘Kill Cancer’ type posts from Ned and responses from his friends. One read something like ‘ I wish cancer would get ebola and die’ which attracted lots of ‘yeah die cancer die’ from his instagram ‘friends’. He did a fundraising for me. Actually it was all very secretive and I am not sure he told those donating that the money was for me, it was for cancer– but I benefited very directly. He collected a tin of coins and took Ella into town with nearly £100 worth which he spent on new pyjamas, lush soaps, candles and more for me. The boys are all very gentle with me and it is certainly much easier getting them to pick up the clothes off their bedroom floor or go and walk the dog. They have also had me around more than they have had for a while as I work from home during the chemo weeks to avoid getting trains. My neutrophils and white blood cell counts are very low. As I have had chemo before my bone marrow is struggling – so I am avoiding unnecessary germs.

We are planning a few trips. I am not quite ready to detail a bucket list, but I am quietly noting things I have always wanted to do. One of them was to go to the theatre more and since diagnosis I have seen Swan Lake, the mouse trap and Saturday Night Fever. We are also getting more organised to try and find dedicated time for Rupert and I to have some time together – booking that weekend away etc that never seems to happen when life is so busy. We are looking at organising a trip to Thailand or somewhere with good vegetarian/asian food, yoga and massage, over the Xmas holidays. This is likely to break the bank (another of the bigger questions we have to face as a family) but I will I hope be fit enough to go and I do not know how many of these opportunities we will get. Many, is the plan, but we need to plan for all scenarios. Also on my list of things to do includes to knit something, something that could actually be worn. I am very good at half-finished scarves. I cannot actually name anything, other than a scarf I made for a teddy bear, that I have ever completed since knitting classes at school, but I enjoy knitting. I have also begun to investigate the world of oncology, drug regulation and how the current system of approving new drugs is simply not fit for purpose and is far too slow to keep pace with the science. More on this later...