Cycle Four August 17th and Cycle Five September 7th

I have really procrastinated posting this next update – partly because it is a bit of a hotch potch (which is how my brain is most of the time these days – ‘chemo brain’) and mainly because I am now feeling rather self conscious that it has become be an interminably boring read! I do apologise if it is….

A week after the 3rd cycle we drove to Wales for a family holiday. My mother took the oldest two with her after dropping me home after my treatment and we followed with the younger two, when I was up to it, a few days later. We spent 2 weeks as a family with my parents and sister and her children visiting castles, agricultural shows, taking walks along the local canal to our nearest town, Welshpool, and we even camped in a field for one night. The north west / south east weather divide which has defined much of August meant pretty miserable weather for the whole 2 weeks but at least it was not cold.

In terms of side effects, it certainly took me longer to feel even vaguely normal. When I feel like a cold beer or a glass of wine I know I am turning the corner. The idea of alcohol up to that point is poisonous. During the third cycle it took 10 days and even then I only enjoyed a few sips. The change in taste is one of the most depressing side effects and during this cycle I started getting a few mouth ulcers. My teeth feel coated and gums sore if I do not keep up a rigorous teeth cleaning and rinsing with mouthwash regime. I understand this to be because the cells in your mouth are those which rapidly divide – so if you get a cut in your mouth it gets better sooner than an equivalent cut on your skin. As the chemo’s job is to kill rapidly dividing cells – your mouth is very vulnerable during treatment. I had only a few ulcers by the time of my fourth cycle but enough that there was a discussion among the oncology team about whether to delay the treatment – they said the presence of ulcers indicated that maybe the level of toxicity in my body was not great and I might need another week to recover. I think actually that had I been more disciplined in my mouth washing I would have kept them under control.

One of the kids favourite activities when we visit my parents in mid Wales is to visit ‘Yum Yums’ in Welshpool. We consider this to be the best sweet shop in the country. It is an old fashioned sweet shop with rows of containers filled with sweets sold in grams. We use the sweets to coax the children along during long walks. I could not eat any of them – no cough candys; lemon sherbets; cola cubes; pear drops – because of my very sensitive mouth .

My cords seem to have just been absorbed as I cannot even feel them now. I didn’t notice this happen. My theory is that my body has recognised that they have absolutely no purpose and just absorbed them.

Finally on side effects - the one that distresses me most now is the bloating I get in my stomach after treatment – it lasts for about 10-14 days but is worst in the early days – and I think it is from the steroids I take in the days after treatment – but also possibly by body reacting to being infused with poison. On top of this as I am less active than normal. I am getting increasingly squidgy where I used to have as least some muscle. Rupert insists, of course, that this simply means there is more to love and that squidgyness is far more comfortable than bone.

I spent a day with my Aunt, who lives close by in Shrewsbury. We were both between cycles (our treatments are 3 days apart). Only Rupert and the kids have seen me with no wig or bandana and only my Uncle has seen her in her bald glory – but that day we rolled around laughing as we removed our wigs – we looked liked pixies. We have a fantastic series of photographs – one with our own wigs on, one with no wigs on, one with each others wigs on and one with both of us in scarves. It still seems unbelievable that we are both going through treatment at the same time – almost to the day, I am sure I have said this before. We have long and frequent conversations as we go, comparing our white cell counts, type of anti nausea regimes and generally keeping each other going. She has now only one cycle left – but will have had a total of 8. In fact – it has taken me so long to write this that today was in fact her last treatment! She is twenty years older than me and has been incredibly stoic all the way through – although she has been plagued by infections and complications and has been hospitalised at least twice over her treatment.

Her response to the chemo has been as good as we could have imagined. When we heard her diagnosis earlier this year we did not know if she would even make the year but the chemo has killed all traces of live cancer cells. She will need careful monitoring but her prospects are so hopeful that it is hard not to feel excited about it. I had always had a vision of us eating cream teas as old women – her in her 80s and me in my 60s – nattering about nonsense. When she was diagnosed I berated myself for all those missed opportunities to spend time with her being so busy with work, children and life. I raced up as soon as I could to spend a weekend with her trying to claw back some of the time we could have spent. This was before I was diagnosed and before we had known how well she had responded to treatment. It is hard to believe we are nearly at the other end, and while we don’t know if and for how long she will stay clear – there is a real chance that it might be for many years.

Before I lost my hair I was certain I would wear my wig most of the time. I thought that with a bandana it would be obvious that there was something wrong with me which would draw attention I need not want. In fact I feel I draw more attention with a wig on. I am certainly more aware of it and walk around imagining a big cardboard arrow pointing to my head – with bubble ‘Yes it’s a WIG!’. It is slightly uncomfortable to wear, you need a mirror to adjust it, and for most daily activities in the home it simply feels ridiculous wearing it. The few times I have worn it out in public I feel acute embarrassment – as if I am wearing a Minnie Mouse bow. We spent a night with one of my oldest dearest female friends and I wore the wig on Ned’s request (he is the only one who asks for me to wear it) – and wept in humiliation when I saw her. I felt fake and ridiculous.

I wear instead scarves or bandanas – mainly a brown bandana designed by Trend Co (the chain that makes wigs and accessories for people suffering hair loss) – and it is very comfortable. If I wear sunglasses with it (which I do at every opportunity) it covers my eyebrows and eyelashes – and makes me look (at a stretch) like some very stylish person. I could also though be mistaken for a muslim convert or a traveller. While we were in Wales we went to a rural agricultural show – very rural, very white. I was not imagining the shifty looks from passers-by clearly trying to work out which of the above I was – style queen wanna-be (urbanite from down south) muslim convert or traveller (none of which fitted in comfortably with the crowds milling around the livestock and largest courgette displays).

My eyebrows are still partly in tact, and I have many eyelashes on my top lid, not so many on the bottom lid. I have not removed my eye make up for weeks as I end up pulling out depleting lashes. I look like a bald panda in the mornings. My hair has not all fallen out – about half of it possibly but I still have a good head of stubble (which actually grows and could in fact do with a cut). The problem is that it is not evenly spread over my head so I have bald patches on either side where I sleep and a band across the top. I still have to experience the effects of cycle 5 and 6, so may lose the remaining eyebrows and lashes, but I think I am going to be left with a good lot of hair by the end. Despite this I will need, at some point after cycle 6, to take a trip to Chris the hairdresser to cut it so that it is all even before it starts growing back properly.

We left the children with my mother while Rupert and I drove back down to Brighton for my fourth cycle. The days immediately before are a taste of normality – but with a big hour glass in my head counting down until my next treatment. I don’t like to talk about the next treatment or even think about it in any more than practical detail. I quietly count the hours in my head the day before – and eat and drink my favourite things while I have taste. If I have a coffee that is not perfect I feel completely cheated knowing it will be a while before I will experience that enjoyment again.

I was tired on the morning of cycle four. We had arrived late as a section of the M40 motorway was closed diverting us off our route. We went via my cousin for supper as we were diverted almost past their house. This was a wonderful unplanned surprise – but it meant we arrived late and I felt particularly tired when I woke up. As I got myself dressed, making sure to wear a top that gave access to the port, I felt waves of nausea just in anticipation of what was about to happen. We drove to the hospital for my port to be flushed and for my bloods. The deep nausea simply grew with every step – my mouth started salivating as it does before you are sick. I gave blood and we left for an hour or so while they processed it. They were concerned about the ulcers in my mouth as there was some talk of delaying treatment to give me another week to recover. Luckily they did not. I am very clear about when this will all be over and the idea of extending it by even a week would be hard.

This is the first cycle that Rupert has taken me to. It was new and distressing for him. His style is, of course, different to that of my mother. Mum is more stiff upper lip, mind over matter and it will all be over soon. Rupert was more attentive, which together with the terrible nausea I was feeling, and that I was tired anyway – started me weeping. Even writing this makes me picture the drugs being prepared and slowly injected into me, my stomach lurches at just this image. Once I had started weeping I then could not stop. Lynette (our macmillan nurse) dropped by in the middle of all of this. The last time I saw her during treatment was on my first cycle just after they had put the cold cap on – so we had not talked much. It felt like the whole team of lovely oncology nurses were popping in to do or say what they could to stop me crying. In the end I was prescribed a relaxant of some kind. I explained that really I had been coping very well, it was just that the anticipation of it all and knowing what I would go through the following days, together with Rupert being so loving that had made me drop my guard. A bit of crying, I believe, is quite cathartic anyway. They gave me the same relaxant pill to take home with instructions to take it even before I get in the car for the 5th cycle.

The fourth cycle did not feel like past half way, it felt like the beginning of the harsh climb to the summit – cycles 1 – 3 were the foothills. My recovery after cycle four was much slower – and I am not sure I really felt anywhere near normal throughout the first 2 weeks. The third week was a bit better, although I got a cold and a cold sore (I have not had a cold sore in years). I went into work a couple of times to hand over a a few things as I will take much of September off and all of October.

The last cycle is on 28th September which is now in my sights! I had my fifth cycle 3 days ago and feel no worse than after the 4th cycle, I think I may be coping with it even slightly better. It helps that the kids are back at school so we have more structure and I can bury myself in my bedroom for long periods uninterrupted, surrounded by books, papers, computer – snoozing when I need to.

I have to drink 2-3 litres of water after each treatment – which I find incredibly hard. Not only does my changing taste affect the taste of water, but the sensation of it filling my stomach when I am feeling nauseous is grim. The flip side is that I like the idea of it flushing through my liver. My skin takes on a yellow tinge the couple of days after the treatment – very unnerving.

My mother came again to take me to the fifth cycle. We have a nice little routine. We get to catch up on family gossip, she chivvys me along and bustles me out of the door as if we are going on a shopping trip. I took the relaxant before we got in the car – and I think this made a difference to controlling my anticipated nausea – which is completely outside of my control. My body knows what is coming, is familiar with the tell tale signs that it is about to happen and simply rejects it. Yesterday we watched a BBC documentary on the use of e numbers in food and there was a scene in which there was a small experiment involving a red liquid, in a large syringe being used in some taste test. The syringe and colour of liquid was identical to one of the drugs I have and just seeing it threw my stomach, even writing about it me brings me back – so I will stop. The power of the subconscious.

I have now only one more treatment to go. I can scarcely wait – to be out of this cycle of living – 3 weeks at a time and within these 3 weeks we live week by week – with week one being very bed centred – including the first weekend, then I become a bit more adventurous, but this has changed as the cycles have gone on – and finally the third week I can be quite normal with a sleep as and when I need a quick lie down. My taste starts to come back and I get a taste of my own self only to start the countdown again. I cannot wait to just go swimming, to eat and drink normally, to sleep deeply not fitfully, to be rid of an underlying nausea. The tips of my fingers and toes have started to lose sensation after treatment. My body just wants to get back to its old self. It will not quite be the same – my scar still hurts, especially where the lymph nodes were removed and I will need more surgery next year – but that seems so far away and will be a walk in the park compared to chemo so does not worry me at all. I will of course need an operation (albeit small) to remove the port – but that day cannot come too soon. I imagine they will not want to remove it until after all my radiotherapy is over – so possibly not until next year. The radio is booked in for about 5-7 weeks after my last chemo – so probably mid November to mid December – to end the week before my big 40th birthday. What a year!

Endnote – Death of a Rabbit…

I was due to post this today but something happened that I thought I would share. Some light relief (or not) from the trials of chemo. Smudge – our black and white giant female rabbit, who lives with Gizmo – an albino male guinea pig, died this afternoon in Ella’s arms. She had been losing weight and was looking very miserable so last week we took her to the vet who concluded she had ulcers in her mouth from her teeth growing too long. After a cool £150 operation to file her teeth she came home, still weak but looking more perky. Over the past few days though she has looked more and more forlorn and this morning I was so concerned I rang to make another appointment with the vet at 5. Ella found her when she got home from school pulling herself along, she picked her up and after a bit of pathetic twitching Smudge gasped her last breath and went limp.

I was not in the house and received what can only be described as a completely hysterical phone call – Tom had been ordered by Ella to call me as she was worried about Smudge but while on the phone to me she breathed her last breath so all I got was lots of loud wailing and hysterical shouting ‘she’s dead, smudge has just died she’s dead’ – all four children were bawling their eyes out. I raced home and arrived to what looked like a wake – Smudge had been laid out in Neds den in the garden and Ned was sitting on a chair stroking her, tears streaming down his face. William had run up to his bed and curled in a ball crying, Tom was being relatively calm (the impact hit him later that evening) and Ella was hiccoughing with tears while trying to describe what had just happened.

We have since had a rather traumatic but in someways amazing evening – talking about death and what happens when you (or a rabbit) dies. We put her in a shoebox and Ned covered her with petals (she is now rather unnervingly in the box at the end of my bed which Ned is sharing as Rupert is away). They observed rigor mortis – (clearly the soul has now left the body which was no longer working for her and she – ie the soul – has gone up to rabbit heaven to jump around freely with lots of other rabbits while looking down on us being so careful with her body). All evening we have discussed death, what happens – the realisation that they will never see her again once we have buried her when Rupert is home tomorrow. I have had long conversations with each child about death and illness – all different reflecting their different ages. Ned wants to know if you can feel when you are in heaven, and thinks he would be lonely. Tom talked for ages about his fear of dying but also of realising that he does not want to live forever either – and about one of us dying. Cancer has featured highly and why do so many people die of it. We had a long conversation about how people of different religions understand death and afterlife – and the benefits of knowing you are going to die so you can prepare vs dying in your sleep. Poor Ella cannot get Smudges last pathetic movements out of her head but we talked about how Smudge must have felt secure when she picked her up and let herself go. It has been a fascinating evening – an exploration of life and death. I wish though Smudge was not in my room in a box.

The kids are planning the funeral – what they will write, the headstone (!), Ned has a teddy he wants to bury with her and we have already debated the benefits (or not) of burying her with food. I meanwhile am more concerned by the digging habits of Max the dog – and wondering how we will manage in our small garden to dig a hole deep enough that will not invite Max to dig up again. Freshly dug earth is like an invitation for him to dig and we already have an ongoing Rupert vs Max routine – Max digs the hole – Rupert tries to reprimand Max with strange disapproving grunting noises, Max looks confused and shirks away – only to return another time to continue - the urge to dig simply too powerful to ignore. But I will let Rupert work out the logistics of the actual burial when he is home – I will work with the children on the other important details - the flowers and content of the ceremony. It is late now and I must go to sleep…

PS – I have not returned to the reflexologist – but as her shop is on the main route to town I have to shirk past it with my eyes to the ground too cowardly to tell her really why I am no longer coming to her – all I wanted was a foot rub – not a mind scramble.