Are we live?

How do I feel about what happened to me? 

This is a question I have been asked a number of times recently. The question itself confuses me. Am I done? Is it over? It doesn’t feel over when you have to take a day to rest after throwing a ball for fifteen minutes in the park. 

Last week, Matt and I went out for dinner with some of the other scout leaders. We were chatting and something related to my transplant was briefly discussed before Matt smiled at me and said, “anyway, that’s all in the past”. Just like that. He was being positive; he intended it to be reassuring to me and everyone there that I was better now. But as much as I want this whole thing to be in the past, the truth is that it’s just not there for me yet. It is still very much my present. It is the reason I am not working. It is the reason I spend my days at home, doing the same things, becoming exhausted by the same mundane tasks. I felt weird as soon as he said it, guilty for dragging this whole thing out, conscious that people are getting bored of the whole cancer thing. 

Mentally, cognitively, introspectively, I know I have been changed. They call it “chemo brain”. It’s like my mind has a fogginess which prevents me from remembering things clearly, if at all. It also affects my vocabulary; humble words I once frequently used dance around in my subconscious, almost-remembered and tantalisingly out of reach. I feel like I have lost the capacity for creative thought and now find it so difficult to think clearly or organically or uniquely about anything. So when I am asked these huge questions, how do I feel about what happened? how do I feel about cancer? what is having cancer like? I just want to be able to answer in a concise but articulate way but it just doesn’t come.

I’m not a journalist, I don’t want to be famous, I don’t want to go viral (in my world going viral is no good thing and involves a hospital admission and hefty dose of Aciclovir! #cancerlolz). I just want this mist to clear, this cloud to dissipate from around me, for things to be so much clearer where the future is clearer too. I know I am changed. I am more tolerant in some ways, and less in others. I feel like I have things in perspective and that at least, is very clear to me.

During my treatment, Timothy Spall was a guest on The Graham Norton Show. He spoke about being diagnosed with a terminal illness (turns out it was AML, and turns out it wasn’t terminal after all). He said that when he was ill things took on new meaning: trees were somehow more beautiful and everything was profound. And he said the day he knew he was better was when things weren’t profound anymore. We used this as a benchmark throughout my treatment. My sister would ask, “is everything profound?” and I would look outside at the view that never changed, where the sun rose each morning over the fields, where I would imagine foxes running beneath the hedgerows, which was so beautiful it almost made me forget where I was and why, and I would reply, “yes, everything is profound”.

My YPU Experience.

Being on the cusp of adolescence and adulthood has never felt more palpable to me than during the time I spent on the Young Person’s Unit at the Queen Elizabeth Hospital in Birmingham. It was here that I spent the majority of my most recent admission for GvHD. The young person’s unit is funded by the Teenage Cancer Trust, and “provides inpatient care for patients aged 16-25 years old living with cancer” according to the QE’s website. I was diagnosed with AML when I was 25 years old, and if I had received my chemotherapy treatment at the QE, YPU is where I would have been treated.

The concept of adolescence was first developed in the 19th Century by G Stanley Hall, an American psychologist. Before the idea emerged, children and adults lived and worked more closely and much less emphasis was placed on the differences between them. But throughout the 19th Century more definition was given to what social scientists have termed the “life stages”: infancy, childhood, adolescence, adulthood, and old age. In contemporary culture, we like to give determination to every moment in life, adding further intermediate groups to the life stages, including “tweenager”, “young adult” and “twilight years” to bridge the gaps between the classifications. But does this obsession with defining and chronicling of each stage of life only serve to divide us further? 

When I was admitted for my stem cell transplant at the QE in February 2015 I was not admitted to the YPU, despite being eligible at that time, because the allogenic stem cell transplants are always conducted on the haematology ward next door, regardless of age. I remember being asked by one of the nurses if I had received my chemotherapy on the YPU, to which I replied that I was flattered (as I believed the age limit was 19, due to the misnomer of “teenage” in Teenage Cancer Trust) but no, I had been at Coventry. She informed me that they treated young people up to the age of 25 and that I would still have been eligible for treatment there. I was not admitted to the YPU when I had shingles in June, I imagine this was because I had previously been treated on the haematology ward and knew the staff and they knew me. I don’t know. I never questioned it and I was perfectly happy there anyway. 

When my doctors were first suspecting that I had GvHD of the liver, I received a phone call to tell me that a bed was available for me on the general oncology ward, where I would be admitted for a liver biopsy - evidently there were no beds available on the haematology ward at that time. On arrival I was shown to a bed in a four person all women’s bay. The bed opposite was occupied by a lovely Indian woman who spoke only a few words of English but constantly wanted to mother me and would chatter away anyway in her own language, and we got by with crude sign language. I learned to know what she was asking for and became her unofficial “translator” for the nurses and HCAs. In the bed adjacent to me was a younger woman in her thirties who had had a rare bone cancer in her late teenage years and had recently relapsed. A few women occupied the bed diagonally to me next to the window, including a Burmese women receiving treatment for breast cancer and later, a much older women whose diagnosis I never found out. 

Since I felt generally well and was not suffering any ill symptoms it was quite nice to be surrounded by people to chat to and to have the comings and goings of a busy ward to occupy me and make the long and tedious days pass a little more quickly. I purchased a TV package as usual (something many people don’t do due to the expense, which baffles me, I mean, what else are you going to spend your money on while you’re lying there?) and settled myself into a routine, always showering and dressing each morning. 

After around three or four days, one of the staff nurses approached me and asked if I wanted to move to the Young Person’s Unit. She said that the YPU was practically empty, that I would likely have a bay to myself and that it would help to balance the staff’s workload across the two wards if I moved. She said it was my choice and that I was under no pressure or obligation to move. My initial response was to say no because I had bought the TV package (which annoyingly are specific to the TV and not an personal account) and didn’t want to have to repurchase it. I was being treated with a massive IV steroid dose of 150mg prednisolone which was making it impossible for me to sleep, and I found watching TV helped to relax me. The nurse informed me that there were larger flat screen TVs above each bed which were free to use and actually had more available channels. Also an older women had recently been admitted in the bed next to me who was particularly noisy, so I thought I had nothing to lose. 

I packed up my belongings and was helped with my things on the short walk around the corridor by a lovely healthcare support worker. The YPU is actually located on the same floor as the oncology ward where I was originally admitted. The wards are arranged in semi-circles with doors at each end connecting to one long central corridor. The YPU occupies around ⅓ of the ward, with the general oncology ward making up the rest. As it transpired, I didn’t have a bay to myself - there were two other people on the ward but I didn’t mind at all. In the bed adjacent to me was a young woman with Lymphoma who was having an autologous stem cell transplant the following week. She was about 23 and a qualified nurse. She always wore lovely, fashionable clothes and did her makeup every day. In the bed opposite was a woman receiving chemotherapy treatment for breast cancer. She was actually in her forties (although I had to be told this as she looked incredibly youthful!) but she worked as a nurse on the oncology ward at the hospital so they had offered to treat her there to avoid her the awkwardness of being treated by her colleagues. While they were moving my belongings around, Ellis asked if it was okay that I was on this ward as I was no longer 25 and was told that it was fine because I was 25 when I was diagnosed.

The ward and facilities were amazing in comparison to a normal ward. Above each bed were flat screen TVs with a full freeview package free of charge, and each one was connected to an individual xbox in the side cabinet. The rooms were decorated in bright colours, the women’s bay being yellow, with large stencils of trees on each wall behind the beds. The walls themselves were magnetic and a variety of magnetic shapes could be used to decorate the trees and walls including birds, squirrels, leaves, and fruits. The furniture was not your run-of-the-mill wooden locker with no lock and uncomfortable hard-backed chair; instead, the lockers were colourful industrial-chic and there were large squashy recliners. The flooring was a wood-effect laminate and the bathroom had murals of flowers all over the walls. I liked it immediately - it’s incredible how a colour palette different to the standard hospital sky blues and mint greens can change the vibe of place. 

The HCSW who had helped to move my belongings then gave us a tour of the ward. There was a study room for those completing GCSEs, A Levels and degrees, and family rooms, day patient rooms, store rooms etc. Then she showed us to a snug/chill out room called “Eden” where there were two sofas with a large TV, a massive DVD collection, an Xbox, a playstation, guitars, keyboards, a Wii, and an amazing view of Birmingham from the 6th floor. Finally we were shown to the kitchen and told that there was free breakfast cereal as the breakfast round is at 8am each morning, but patients on YPU were not allowed to be woken before 10am, and told that I could bring in food and store it in the communal fridge. 

We decided to go and sit in the snug room and watch TV as it felt a bit more normal and homely than sitting/lying in bed and everyone sitting around trying not to make it look obvious that they were casting sideways glances at me every few minutes. A lovely nurse with pink hair and a lanyard covered in rainbows and unicorns came and introduced herself and started a blood transfusion for me as I was anaemic at the time. I asked if it was okay if I stayed in the Eden room while I had my transfusion rather than returning to my bed and she said that it was absolutely fine. After a while, Mum and Ellis left and I returned to my bed where I attempted to plug the headphones into the TV as it was getting late and I didn’t want to disturb the other two women in the room. It transpired that mine, for unknown reasons, didn’t work. The other two women tried to help by switching headphones and looking for alternative input sockets but to no avail. So I turned the television off and we chatted for a while and bonded over the fact that we all worked in healthcare. 

I got dressed into my pyjamas and settled myself down for the night with the intention of reading for a while as the steroids and shingles pain were still keeping me up half the night but my mind couldn’t focus on what I was reading. In fact, I always struggle to read when I am in hospital. It’s like I have so many thoughts and anxieties that I end up reading a whole page only to get to the last line and realise that I hadn’t absorbed any of the information at all and that I’d instead been thinking about my bilirubin levels, or whether Leo was okay, or how much I missed Matt. Television was the only thing that allowed my mind to rest. Judge Rinder became my hero. During the day the Athletics World Championships had been on, otherwise I would watch programme after programme on The Food Network, lusting after the delicious delights created by chef after chef.

Later on, a nurse arrived to give my nightly medication and to take my observations. I asked her to ask the on-call doctor to come and see me as my doctors were weaning me off the Gabapentin tablets for the nerve pain from the shingles; I had asked numerous times throughout the day what my dosage was supposed to be but no one had got back to me so I hadn’t had any and was in a lot of pain. I told her that I might sit in the snug room to watch some TV, explaining that the steroids gave me insomnia, that the headphones didn’t work and that I didn’t want to disturb anyone else. She said that she would try and fix my headphones and would be back shortly. When she returned she couldn’t figure out the headphones either, but she said “I’ve just noticed on your hospital notes that you’re 26 so we really need to limit your use of the social spaces. I know it seems cruel, because why should a 25 year old be more in need of a social life than you? But our funding comes from the Teenage Cancer Trust and those are the rules and we have to have a cut off.” And then she left. (FYI: The above quote are her exact words as I wrote them down in my journal at the time). I couldn’t get my head around what she had said. She didn’t wait to “limit my use”, she was saying that I couldn’t use it. And as for wanting a social life?? It was midnight, everyone else on the ward was either asleep or in a private room. I didn’t want to throw a party. I didn’t want to socialise. I didn’t want to be there at all. For half an hour I lay in the dark and silence, completely wide awake, crying as quietly as I could. Eventually I had to go to the communal bathroom because I just needed to have a good sob and get it all out. I felt upset, ostracised, too old; I felt angry that the nurse had make me feel that I was somehow opportunistic and calculated for wanting to use facilities which I wasn’t entitled to. I hadn’t asked to be there. I felt vulnerable, unable to stand up for myself for fear of repercussions. 

A little while later, after I had calmed down a little, a young SHO arrived to talk about my medication. She asked about the shingles and what the problem was. As I began to explain, I could feel myself becoming flustered and burst out crying again. Surprised, the doctor asked why I was so upset. I felt awkward and didn’t want to complain about the nurse, so I mumbled something about feeling frustrated about being back in hospital, the pain, and Matt being away. She suggested that we go and sit in the kitchen and have a cup of tea, that it might be good for me to “get away from the bed space”. This then set me off again as I explained that I had just been told that I wasn’t allowed to use the “social spaces”... she said she wasn’t aware of the rule and left to go and speak to the nurse. 

Around 10 minutes later, the doctor returned with a cup of tea. I have been a long term patient as well as an NHS employee, and I have never known a doctor to make a patient a cup of tea before. The gesture did not go unappreciated and I am confident that that lovely SHO will be the most wonderful doctor to her patients throughout her career. She said that the nurse had said that I could go and sit in the day room on the general oncology ward if I didn’t want to stay in bed. I got out of bed, put on a cardigan and a pair of slippers and walked around to the oncology ward. The day room was equipped with a few hard backed chairs, some old magazines, some Macmillan leaflets on coping with hair loss and infertility, information on various types of cancer, a bookshelf full of mills and boon books, and a television which was unwatchable due to the poor signal. I sat alone in one of the hard chairs, drinking my tea and trying to catch every seventh word of the previous night's episode of the Great British bake off. I felt thoroughly miserable, and no one came to see if I was okay.

I didn’t see that nurse again until around a week later. She never acknowledged that I had been upset or attempted to ensure that I was okay. She made me feel uncomfortable every time I saw her, and I don’t think I could put my finger on why exactly that was. Her behaviour was in complete contrast to her demeanour which was disarmingly sweet. In some ways I feel bad sharing this experience because her attitude was so at odds with every other nurse involved in my cancer treatment. Every other nurse has gone above and beyond to make me feel safe, cared for, worthwhile and above all, like an individual. She, on the other hand, seemed to care about some arbitrary rule more than the psychological well being of her patient. 

The next day I told my mum what had happened. She was outraged and went to speak to the sister on the oncology ward. The sister said she would speak to the nurse and that she understood why her colleague had said what she had said but thought that it was terrible that I had been treated in that way.

Unfortunately, it didn’t stop there. A few days later, at around 8am, I was lying in bed half awake when I heard a woman standing just behind the curtains that were closed around my bed. She shouted to someone who I can only assume on another ward entirely given the volume of her mouth, “THIS ONE’S OVER AGE ISN’T SHE??” she bellowed before whipping the curtains right back as I jumped and scrambled around for the blankets to cover myself. “I need to change your bedsheets” she stated as I stumbled bleary-eyed from the bed into the chair next to me while she silently folded crisp white hospital corners and left without a word. The young people were left to sleep. 

On another occasion, someone came round to do a “costa run” for the young people. I wasn’t offered one, or even offered for someone to get me one if I paid for it. I was simply ignored. It was like I wasn’t there. I don’t begrudge not getting free stuff; I know that that money comes from the teenage cancer trust and therefore has to be spent on the people who that charity feel should benefit from it. But the attitude of these people was just so arrestingly cold, so indifferent, so unsympathetic to the fact that I was TWO MONTHS too old to be deserving of it.

The singer Adele has recently said that turning 25 was the most significant thing that had happened to her since her last album release. She described it as “teetering on the edge of being an old adolescent and a fully fledged adult”. To me, it’s an age in which you are certainly no longer an adolescent, but on the cusp of young adulthood and grown-ass woman. However, having cancer changes your perspective as well as your capabilities. You become reliant on people and in many ways, you regress. Since having cancer, I have been bathed by my mother for the first time since I was a child because I was physically unable to do it myself. When I was first diagnosed I was on the verge of moving out of my parents home to live with Matt, but once I had cancer I couldn’t have even entertained the idea. Not because of the practicalities of actually moving, but because I just needed to be in a place where I was being looked after. For someone who has always been pretty independent, it was a huge shift in sensibility for me. 

It’s always easier to look back on a situation and imagine what you should have said, or how you should have reacted differently (I’m sure the Germans have a word for this!). In hindsight, I could have perhaps handled the situation differently, but when you’re a patient on a cancer ward you don’t feel particularly sassy. You don’t feel like having it out with someone in a position of putative authority over the arbitrary rules of the arbitrarily named Teenage Cancer Trust.

It got me thinking about why we divide ourselves into these groups. Why do we treat them differently? Why do we fund them differently? Why would you run a marathon to raise money for leukaemia and then dictate that it should only go towards a subset of those people? Isn’t getting leukaemia shit enough already? Is it less shit for me because I am two months older? They say that certain groups have certain specific needs and while that may be true, I don’t think TV, and wifi and nicer flooring is specific to teenagers. What about people in their thirties and forties? They are more likely to have young families, what charities help them? What provisions are in place for them?

It may sound like sour grapes, but again it is just one of those things that only occurs to you when you are on the other side of it. I just feel like these questions need to be asked, and I think most people either don’t think about it - why would you? You see a charity bucket for children’s leukaemia and you donate; you’re doing a good thing. Or, they think that saying publicly that you shouldn’t donate to children’s cancer charities will probably make you sound like a massive bitch and will make a lot of the internet hate you if they ever read it. Oops.

My Treatment: part three.

Cytogenetics and chemotherapy round two - FLAG-IDA

Around three weeks after the first bone marrow biopsy was taken on my admission to UHCW, my consultant came to see me with the results. They weren’t good. The bone marrow biopsy tested for a number of things, one of which were my “cytogenetics” which is a chromosomal analysis of the bone marrow. People with haematological disorders such as Leukaemia often have chromosomal abnormalities which can be used both diagnostically and prognostically. Prognostically speaking, mine were about as bad as it gets. I had a “complex karyotype” including a “5d deletion”. Based on the cytogenetics, you can be categorised as either high-, medium- or low-risk of the leukaemia either not being cured or relapsing with the standard protocol of chemotherapy. I was firmly in the high-risk group. 

It took me a while to get my head around what all of that meant. When my consultant first explained it, it felt worse than when I was first told I had cancer. This was definitely my lowest day. When I was first diagnosed there was still some hope that three rounds of DA would zap it and do the trick and I would be back to normality in no time. This meant that the road to recovery was going to be much, much longer. I remember that my consultant seemed quieter than usual and had begun the conversation with a series of questions about how I was feeling which I answered cheerily not knowing what I was about to be told. She reached for a piece of paper among my hospital notes and explained the results. I didn’t understand what it all meant so I asked her to repeat it. I still didn’t understand which frustrated and scared me. Having since spoken to her about that day, she explained that she did not wish to go into too much detail about the results because my mum looked so terrified and because she thought it would be too much to comprehend all at once. I asked for a photocopy of the results and stared at them all night, willing them to make some sense to me as if I was in an exam I hadn’t revised for. All night my mum and I just cried and cried for hours, finally admitting how scared we were that I might die.

It wasn’t until afterwards that I managed to put those results into some sort of perspective and gain some understanding from them. Whether I was high-, medium- and low-risk wasn’t really the risk of whether or not I might die, but the risk that if my doctors were to give me another two or three rounds of DA, whether the cancer would indeed go or return in the future. The fact that I was in the high-risk group meant that my doctors knew that I needed more, and my consultant decided to hit me with the strongest chemo out, two rounds of FLAG-IDA, and recommended an allogeneic stem-cell transplant. And when I got my head my round that, I thought yes! let’s not fanny about, let’s throw everything we have at this thing and get rid of it first time. 

My counts started to recover from my first round of chemo on the 25th October, after around 18 days, and by the 28th October I was discharged home for a week of rest and recuperation before the next round would commence. I had another bone marrow biopsy on the 29th October which would show whether the DA chemo had managed to get my disease into remission.

In a wonderful twist of fate, my sister’s wedding fell in that week so I was able to attend and fulfil my duties as Maid of Honour. I would have been devastated if I wasn’t there to see my beautiful and magnanimous big sister marry her equally wonderful now-husband. It was a perfect Autumnal day, bright and crisp and full of heady happiness which was just what the doctor ordered.

My wig's first outing.

Refreshed, and ready for round two (ding ding), I was admitted to the haematology ward on 4th November for the new chemotherapy regime of FLAG-IDA. On arrival, one of my favourite doctors said that after viewing the cells from my second bone marrow biopsy under the microscope, there was no evidence of leukaemia. I can’t remember when we got the full results back, but it turned out that the DA had got my disease into complete remission. We were absolutely thrilled and it gave me a real boost to get through the next week of the new treatment. 

The acronym “FLAG-IDA” stands for Fludarabine, Ara-C (Cytarabine), G-CSF and Idarubicin. I was also given steroid eyedrops as many people experience very painful, sore eyes (although I never did). Fludarabine was given as an IV infusion over around 30 minutes, once a day on days 2-6. Cytarabine was also given as an IV infusion over 4 hours, timed to be given exactly 4 hours after the start of the Fludarabine, also once a day on days 2-6. G-CSF is the acronym for granulocyte-colony stimulating factor, which is given as a small injection just under the skin to stimulate the bone marrow to produce more granulocytes (a type of white blood cell) and stem cells and release them into the bloodstream. It is given on days 1-7. Many people with AML and other types of leukaemia, myself included, can also be given G-CSF to encourage the production of white blood cells after chemotherapy to speed up their recovery from neutropenia and reduce the risk of infection. I am not entirely sure about the rationale behind using G-CSF in the FLAG-IDA regime, but I think it is something to do with encouraging and residual cancer cells to “activate” and therefore be more susceptible and likely to be attacked by the chemotherapy drugs. But don’t hold me to that, I might be way off. Finally Idarubicin was given by a fast IV infusion over 5-10 minutes, once a day, on days 4-6. Idarubicin is from the same family as Daunorubicin and is also red in colour.

Despite my enthusiasm to get rid of the Leukaemia with this stronger stuff, the FLAG-IDA scared me. It was a cocktail of drugs so potent that this was perhaps as life-threatening as the Leukaemia itself. It came with the chance of much more severe, more permanent, more long-term side effects. Firstly, the GCSF injections caused quite serious bone pain in my legs and hips, which considering I was still suffering with the “bum issues” (see “My Treatment: part two.”) made lying in any position extremely uncomfortable. Secondly, the Fludarabine causes long-term severe deficiencies of the immune system which put me at risk of something called Transfusion-associated Graft versus Host Disease. It is rare but it means that if there are any foreign lymphocytes in a transfusion (i.e. of red blood cells or platelets) they could see the host (me) as foreign and can cause a severe rejection reaction. It is almost always fatal, with death occurring within one month. It means that all future blood products that I may need must be irradiated. (Reminder to self: get a medical ID!). 

Round two (ding ding)

I was told that after this cycle, all being well, I would be able to do my recovery at home. Knowing that I would only be in for 7 days made the week fly, and after the hefty previous admission of 5 weeks it seemed like a doddle. I attended the outpatients clinic a few times a week for blood tests and a review by the doctors, and on a few occasions the doctors whom I was less familiar with were surprised that I had had FLAG-IDA because I appeared to be doing so well. 

On 19th of November, which was also my mum’s birthday, I attended the outpatients clinic as usual. On arrival, Yvonne, the stem cell and bone marrow transplant nurse ushered us into her office. She had an excited look on her face. “It looks like your sister is a match!” Mum burst out crying. She said it was the best birthday present she could have hoped for. My brother, George (thenceforth known as “shitblood”, the wittiest nickname ever coined) definitely wasn’t a match, but things were looking good for my sister Katherine. They had to do a few more tests, so they couldn’t be 100% sure, but it was very very likely.

I spiked a fever and was admitted again with an infection a few days later, but it was fairly mild in comparison to the ones I had developed as an in-patient after my first round of DA. However, while I was being treated for the infection I also developed a cold and in order to protect the patients and staff from my lurgy all my visitors were supplied with face masks, latex gloves and aprons to wear. It was absolutely hilarious and felt like total overkill considering the significance and potency of all the other ailments and diagnoses and drug regimens co-existing on the ward, and yet for the sake of a common cold I was made to feel like an ebola patient. 

While I was an inpatient Yvonne came to see me and confirmed that Katherine was a match. I can’t quite articulate how that felt, to know that my beloved sister was going to save my life. I didn’t know how to deal with being so entirely indebted to someone, and it is something I still really struggle with. I don’t know how to begin to explain or describe what it means, and to say “thank you” seems absurd. Not only am I inconceivably grateful for the life and the future she has handed to me, but it took great courage for her to even have the initial blood tests to see if she was a match. Katherine has always been absolutely terrified of needles and blood. In fact, she couldn’t even have her blood pressure taken because the feeling of the cuff restricting her blood flow and the feeling of her own blood pulsing down the vein as it deflated made her feel physically sick. And yet there was never a flicker of hesitation, never a suggestion that she wouldn’t do whatever it took, whatever was needed from her. I feel that I have so much to say to her still, but I simply cannot find the words.

Update and Musings.

Lately, things have been going okay. My liver function tests have been getting much better so my massive steroid dose has been tapered accordingly; hopefully soon I will be waving goodbye to this hamster face. Yesterday I managed to get out of the house for a few hours to go to listen to a poet called Alyson Hallett speak at Warwick University. It was a very low-key, squashy sofas and people-taking-their-shoes-off type of affair and Alyson was captivating. She spoke about her life and work and interspersed it with some of her poems. One poem entitled “Indigo Sea” especially resonated with me; I felt tearful as I listened to sublime images of pregnancy, motherhood, loneliness, fishing, loss, and passivity, and I felt a longing to be back in an environment where I was learning and creating rather than doing the washing, or sorting out the back bedroom. I guess that’s why I am finding this blog so cathartic and necessary these days. 

Leo is doing really well and behaving himself most of the time. He rarely whines at night any more, except when the rain is thunderously loud on the conservatory roof. I have managed to take him to the community centre park a few times to play fetch where I can use the new ball-launcher Matt got for his birthday. It means I can get a small amount of gentle exercise and Leo can have a good run despite my lack of strength. Indeed, I only really considered the extent of my muscle wastage recently while at the Great Britain Irish Dancing championships as I supported my young cousins Maddison and Isabella who were competing. I attempted a few jig steps in a half-serious manner and was completely shocked by my lack of coordination and control over my own movements. It’s something you don’t really realise while generally walking around, but when you try and manipulate your limbs in a more complicated fashion, and find that they simply don’t respond in that way they did a year ago, it can be quite arresting. 

A few days ago I was eight months post transplant which kind of crept up on me. I feel like at the moment I am in some strange limbo between being sick and well. I know that I am not well: the GvHD is still an issue, the fatigue is overwhelming, and I still suffer from shingles pain in my leg and pain in my back. But comparatively speaking, I am well by virtue of the fact that I am cancer-free. I often feel incredibly guilty for not feeling like my “old self” yet, like I am dragging out this cancer thing. I simultaneously feel incredibly frustrated when people around me don’t recognise that I am still “not-well”. I know this is absurd.

Sometimes, lately, everything seems vociferously loud. It’s like there are just a multitude voices going off like rockets in my head and shouting at me to live a life that is meaningful and rich because what is the point of saving my life if it is not then lived in earnest? The fatigue means the life I want to be (read: should have been) living is out of reach, but I find the mundanity and repetition of the life I am currently living incredibly irritating. I have turned into a reluctant housewife and the last thing I want to be is ungrateful but I would never have chosen this. Right now, the route between here, where I am, and there, where I want to be, is just so unclear. I feel like the road is closed and everyone else has followed the diversion and I am just sitting there waiting for it to re-open. And it seems as though if I tried to find my way I would just get lost and everyone would be honking at me for being in the wrong lane or slowing down to read the street names. All I want is to be driving down the closed-off road but no one is willing to come with me.

I think that maybe I put this cancer thing in a box for too long. I see the cancer like a little crate of hibernating worms and I was happy with that and at the time everyone was saying how wonderful it was that the worms hadn’t surfaced. But now they are wriggling upwards and spilling out, quietly at first and then suddenly and rapidly and now I can’t contain them. Before I know it I’ve said too much but I can’t get them back because they’ve burrowed into the earth, long gone, and I am left in the aftermath with an empty crate of dirt and a vacuous silence like the absence of sound after a gong has stopped ringing and everyone is looking at me shell-shocked and confused and probably not knowing what to say or do about it all.

Theseus' paradox.

Below is a poem I wrote recently about my AML. I haven't written a poem in quite a while so I felt a bit rusty, and I have never written about my disease before, but after a few redrafts I think it is coming along quite nicely.   

Theseus' paradox

Inside this bleach-white side room
histories and IV tubes and wires spill
around like mysteries, unknown prognoses;

I am a line-caught fish flopped on a tray
served on a platter to be diced and dissected
topped up with someone else’s matter

pushed through pumps; the cells occlude
to the tune of call bells and alarm bells.
Give me those indifferent chemicals

that kill the bad along with the good, leave me
depleted but (please) always undefeated.
And then rebuild me, renew me,

make me better than before,
start again from scratch, replace me
to the core. As the prayers from every faith

pour in, they will make me a chimera
and whether medical or myth,
I just want to know the score:

Am I still me,
or something new, something more?

My Treatment: part two.

Me receiving my first round of DA

So I know I said that I was going to split my treatment blog posts into three posts (Hickman line, Chemotherapy and Stem Cell transplant) but as I was writing the second entry it soon became evident that there was too much information to condense into one readable entry. I have therefore decided to break up the post about chemotherapy into several smaller posts for the sake of depth, brevity and sanity. This post covers my first round of chemotherapy and my experience of DA and its side effects.

Chemotherapy round one - DA

On the evening of Friday 26th September 2014 I started my first round of chemotherapy. The protocol was called “DA” which is the standard induction chemotherapy given to AML patients. It was a 10 day course of a mixture of two drugs: Daunorubicin and Cytarabine (or Ara-C, which is where the acronym comes from). The Cytarabine was an IV infusion given twice a day for the 10 days, and the Daunorubicin was given as a bolus through a fast-running infusion on days 1, 3 and 5. The Daunorubicin was bright red in colour and turned my urine bright pink for about a week afterwards! 

I didn’t experience many side effects while having the actual chemotherapy. As I was an in-patient for the whole treatment, my nurses did a great job of managing any sickness or nausea with regular anti-emetics (anti-sickness drugs). I was also on a lot of other prophylactic medication (i.e. to prevent nasty side effects or illnesses) such as anti-virals, a disgusting anti-fungal drink called itraconazole (shudder), and I was given a concoction of mouthwashes to prevent pain, ulcers and sloughing of the mouth and throat.

In AML, cancer cells divide and grow rapidly. The way the chemotherapy works is by targeting and killing off the rapidly-dividing cells in the body but as there are other non-cancerous rapidly dividing cells in the body, it attacks these too. These cells are found mainly: in the bone marrow; in the gastro-intestinal tract, from the mouth, throat and stomach, to the small and large intestines and into the rectum and anus; and in the hair follicles. The side effects of chemotherapy reflect this, with the commonest being mouth and throat pain, sickness, diarrhoea, anal and rectal pain, and hair loss.

After the course of chemotherapy was complete, I was left with basically no immune system. My white cell count (the cells responsible for fighting infection) was zero. Luckily my red blood cells and platelets could be sustained through regular transfusions, but this is not the case with white blood cells. So I was eventually transferred back to a private room where everything around me had to be extremely sterile, my visitors had to be limited to close family and friends, and they had to be very careful about cleanliness. If anyone had so much of a snuffle my Mum banished them, and she would occupy herself by endlessly cleaning everything around me. 

But despite my mother’s excellent cleaning skills, I developed a number of nasty infections. The sort of infections you develop after chemo are unlike any other infections I have had in my life. Like everything else associated with AML, their onset was rapid and their effects were profound. You start feeling a little unwell perhaps, then within a few hours you start to feel cold and begin to shiver, you temperature shoots through the roof, you feel sick and may vomit, then the shivers turn to rigors and you can’t control your teeth chattering and the whole bed starts to shake. This, dear reader, is when you discover that paracetamol is actually the most amazing of medicines. Pre-cancer, I didn’t think much of paracetamol. I thought it didn’t do much and was almost akin to a placebo. But give someone with a post-chemo infection some paracetamol and the shivers stop, the temperature comes down, the coldness abates, and you feel better. Magic stuff.

The first infection I developed was in my Hickman line on 6th October on the last day of my DA regimen. I was immediately started on IV antibiotics and the day after my Hickman line was removed. However my temperate continued to spike until around 10 days later when it finally started to settle. My Hickman line was replaced on 17th October, but unfortunately by the 20th I was having raised temperatures, rigors, flu-like symptoms, etc all over again. This time the infection site was where I had had a cannula in my hand to administer my medications and transfusions while my Hickman line was out. The skin around the entry point developed a cellulitis and became red, swollen and very painful.  

But by far the worst side effects I had related to problems with the least dignified end of the gastro-intestinal tract. In hospital you get very well acquainted with your bowel movements, and talking about your toilet habits become a regular and unremarkable thing to do. I know the Bristol stool chart by heart, and still check to ensure I am not too far astray from a decent 4. As I said though, I had some pretty sever bum-issues. During those first few weeks, I was in excruciating pain every time I needed to open my bowels and for around half an hour afterwards I could barely sit down. I had to lie down for most of the day with a pillow underneath my back or between my legs. I actually had issues on and off with that area for the majority of my treatment right up until after my stem cell transplant. I was sent for MRI scans and CT scans, and at one point it was thought I might have to be referred to a specialist and have surgery though thankfully that never came to fruition. 

By the end of my treatment, I had lost count of the amount of people who had taken a peek at my arsehole. I remember saying to my mum one day that I wouldn’t have cared if the cleaner wanted to have a look too, if he could do something about it. I'm aware that it’s the sort of thing that people are naturally unwilling to talk about, however in the interest of complete transparency for the sake of whoever might be out there reading this, suffering, and thinking they are alone, I am going to be completely candid. And anyway, I have been somewhat desensitised as to what constitutes private or intimate details due to my midwifery training. Essentially, I first developed an abcess on my anus which was incredibly painful. The pain lessened whenever my white cell counts were up between chemotherapies, but it never disappeared 100%. I also suffered with haemorrhoids that would bleed profusely, and general inflammation of the rectum and anus. The pain after moving my bowels was so relentless that I would be terrified to go, and would pace the room in agony for up to half an hour afterwards. I developed a fissure (a tiny but excruciatingly painful tear) on the sphincter. Fissures are actually really common among the general public, but like I said, we don’t really tend to talk about our bums. Since I have discussed mine fairly openly, I have discovered that quite a few people I know have suffered with them too (don’t worry, I’m not going to name any names!). After my third round of chemo, the inflammation and breakdown of skin around that area was so severe that my doctors thought I might have a fistula which is where a small channel appears between the rectum and skin alongside the anus. I had an MRI which showed that there was no definite fistula, so luckily I did not require surgery. So to anyone who has had to deal with any of this, or is currently having any of these issues - you have my complete empathy and compassion. I recommend moist toilet wipes, a hand held mirror and detachable shower heads on the “cool” setting. Nowadays, I still dream of my pre-cancer bum but things are almost back to normal.

Some more thoughts on food and the language of cancer.

“If you don’t butter your toast right to the edges, don’t bother making any.” - Laurence Byrne

As you may know if you have read previous blog posts, I have been trying to eat more healthily recently and one of the ways in which I have tried to accomplish this is by reducing the amount of dairy in my diet.

Pre-diagnosis I ate a lot of dairy. This was partly due to my vegetarianism and use of cheese as the main focus or substitute for meat in many meals, and partly because I just really bloody loved the stuff. I loved halloumi, paneer, emmental, gorgonzola, camembert, brie, gouda, wensleydale, goats cheese, mozzarella, edam. Indeed, I would say that cheese was the biggest culprit in my dairy-rich diet.

The next dairy product I consumed in abundance, and inspiration for this post, was butter. This was largely due to my love of bread, sandwiches, toast and an inherited love of a thick lashing of proper butter courtesy of my grandad. He spreads his butter (Kerrygold Irish salted real butter, always) so thick that it leaves teeth marks. The opening quote to this blog entry was said by my Grandad many years ago, and I find it to be a good mantra for life. 

I am also an ardent drinker of tea and coffee. During my theory days at university I would easily buy three cappuccinos throughout the day, and drink copious amounts of tea and coffee on returning home. Eggs were perhaps next on the list, and I would eat them perhaps two or three times a week. I would also eat yogurt often, sometimes twice a day, for breakfast with fruit and then after dinner as a dessert.

Once I sat down and thought about it, I realised I was consuming wayyyyy too much, and I realised that something had to change. I have found that this has happened quite organically in some respects. Cheese no longer held the appeal it once did due to the fact that I was completely overloaded with cheese-based meals as the vegetarian option on the uninspired hospital menu, the fact that my neutropenic diet limited the types of cheese I was allowed to eat (no unpasteurized or mould-ripened cheese) and finally because I reintroduced seafood, fish and chicken back into my diet.

I began to look for ways to reduce the other dairy products in my diet and the way I went about this was by researching vegan alternatives and vegan recipe ideas online. What I found really surprised me. There is a massive, thriving, staunch and militant community of vegans on youtube, particularly among beauty and lifestyle bloggers. If you search for “healthy breakfast ideas” I can guarantee that if the recipe includes anything that basically isn’t raw vegan, in the comments section you will find numerous posts along the lines of THAT OIL WILL GIVE YOU HEART DISEASE AND CANCER or YOU ARE SO STUPID IF YOU THINK EGGS ARE HEALTHY YOU WILL GET CANCER AND DIE. 

Here we go again with the victim blaming, I thought. Yup, all this was my fault for being a bit too fond of Lurpak. Again, it’s a case of people just not thinking about the link between what they are saying and how it might be perceived by actual people with cancer or heart disease or diabetes. It made me think about how we talk about these things in the public sphere more generally. When you are on the healthy side of the population, it probably doesn’t seem insensitive to offer these instructions where eating X and doing Y will mean you probably won’t get cancer. But again, therein lies an unavoidable binary - those living with cancer or heart disease or whatever must have eaten X and done Y, the stupid idiots. 

Of course I am not denying the fact that certain lifestyle factors, amongst other things, may contribute towards a person's risk of developing the disease. Indeed, it’s something I am trying to become better at myself. But it’s not as simplistic as don’t eat that if you don’t want to get cancer, otherwise you never would have heard the story about your mom's best friend’s cousin who ran twenty miles a day and ate only avocados and mint tea and she got cancer. Or your brother’s girlfriend’s grandad who smoked 60 a day and lived to the ripe old age of 102. 

According to Cancer Research UK, 4 out of 10 cancers might be prevented. And of the 9 listed lifestyle factors, 6 relate to diet or nutrition. They include: keep a healthy weight, eat fruit and veg, drink less alcohol, eat less processed and red meat, eat a high fibre diet, and eat less salt. The other three are: be smoke free, be sun smart, and be active. 

While I am keen to cut down on my dairy, I am reluctant to cut it out altogether particularly because I am at an increased risk of osteoporosis anyway as a result of my treatments and I worry about increasing this risk. It’s something I need to do a bit more research on, and also, I still freaking love cheese.

Recipe for the crispy tofu Vietnamese rolls featured above:

Cripsy tofu Vietnamese rolls

(vegan) starter/appetizer

prep time: 15 mins

cooking time: 5-7 mins

serves: 2

Ingredients

For the Vietnamese rolls:
4 rice paper wrappers
1 carrot, julienned
50g mangetout, julienned
5cm length of cucumber, seeds removed and julienned
1 spring onion, julienned
a handful of beansprouts
a bunch of fresh coriander, chopped
100g firm tofu, drained
1 tbsp cornflour
1 tbsp sesame oil
1 tbsp teriyaki sauce

For the dipping sauce:
2 tsp sesame oil
2 tsp light soy sauce
2 tsp mirin
2 tsp rice wine vinegar
1 tsp chilli oil
½ tsp chilli flakes
a bunch of fresh coriander, chopped

the juice of ½ a lime

Method

1. Start by placing some boiling water in a medium sized bowl and set to one side to cool. (This will be used later to soak the rice paper wrappers).

2. Cut the tofu into long strips about ½cm wide and about 5cm in length. Coat thoroughly in cornflour and set to one side.
3. Heat the sesame oil in a non-stick pan over a medium-high heat and add the tofu pieces. Use a pair of tongs to ensure all sides are browned evenly, around 5-7 minutes. Remove from heat and drizzle with teriyaki sauce.

4. To make the dipping sauce, combine the sesame oil, soy sauce, mirin, rice wine vinegar and lime juice. Then drizzle with the chilli oil, and sprinkle over the chilli flakes and coriander.

5. Ensure that the bowl of water has cooled down slightly. Take a rice paper wrapper and soak in the water for 5-10 seconds until you feel it soften completely, then lay out on a chopping board or plate. Leave for a few seconds to dry before placing the carrot, mangetout, spring onion, cucumber, beansprouts, coriander and a few pieces of tofu on the bottom third of the wrapper. Don’t be tempted to overstuff the rice paper wrappers as this will make them more likely to tear; you’re better off making extra rolls to use up any leftover filling. 

6. Once you have your filling arranged, fold over the bottom edge and roll upwards until everything is enclosed, then fold the two sides inwards and continue to roll upwards until fully closed. Place seam side down on damp board or towel until you are ready to serve.

HAIR.

Q. What does a cancer patient look like?

A. Bald

Baldness is the signature cancer symptom. In many ways it defines the disease. Many people find hair loss to be one of the most distressing aspects of their diagnosis, and while I can certainly identify with the distress of many of the physical changes associated with cancer treatments, for me, in the end, losing my hair just wasn’t a big deal.

I have dyed and experimented with my hair since I was a teenager. My hair had been everything from black to bleach blonde to red and everything in between, including a delightful shade of peach courtesy of my best friend Ellis’s wizardry with a home bleach kit when we were 16. But I was never precious about my hair. After said peach incident I simply bunged more bleach on it and lived with brittle, cotton-wool fluff for a while. In recent years I kicked the home-dye kit habit and relied instead on the talents of my lovely friend and hairdresser Vicki every six to eight weeks.

The above photo was one of the last taken of me before I was diagnosed, just after the last time I had my hair done. I’d actually had quite a few centimetres cut off the length as before that it had been fairly long for a number of years.

The first time it was mentioned that the treatment would cause me to lose my hair was on my first day at UHCW. Indeed, many side effects were discussed, everything from osteoporosis to infertility, and digestive distress to kidney dysfunction. Hair loss seemed trivial in comparison, yet I remember it was considered very sensitively and seriously. I was told when it would likely happen and that I would be referred to the “wig lady” as a matter of urgency. 

At the time I was pleased about this, not because I was upset about about losing my own hair, but because I was adamant that I didn’t want to look like a “cancer victim”. I told my family and friends that I would wear scarves and wigs because I just wanted to look “normal” and not draw attention to myself.

Within a week, the wig lady came to see me on the ward with a catalogue of synthetic wigs and an abundance of colour samples on metal spools. She knew what she was doing, and flicked her way through the glossy magazine and clicked her way along the samples until she found a style and colour that matched my natural hair. Around a week later she returned with the wig and helped my to fit it as well as giving me advice on styling and caring for it.

If you think “NHS wig” you probably imagine a badly fitted, shiny, plastic-looking, auburn beehive with a visible net and Farrah Fawcett flicks. But when it arrived I was delighted. It looked just like my own hair! None of us could believe how great it looked. At this point my hair had not started to fall out so there was no need to wear it, but I packed it neatly away and intended to wear it regularly.

I first started to notice my hair falling out around two weeks after my first round of chemo. I would wake up to an even covering of long brown strands on my pillow each morning. It didn’t come out in clumps, rather it would thin out all over a bit like when you’re grooming a shaggy dog.

One day I brushed my hair and quite a lot came out. I took a photo of it in the sink; I knew the end was nigh. After that day, I tied my hair up in a scrunchie until the day I shaved it off.

Around a week later, the bun that sat precariously atop my head was attached by a few strands around the front, back and sides… underneath sat a mass of matted, loose hair. At one point I attempted to renegotiate the bun’s position and ended up with a ridiculous bald patch right at the front of my head. I was starting to look a bit too much like Gollum. In fact, to resemble Gollum in any way is to look too much like Gollum. It had to go. I rallied the troops and Ellis and Katherine arrived armed with a pair of clippers and we got to work.

Looking back over these photographs, I think Ellis and Katherine were pretty insensitive to be reppin’ such fierce hair while they were shaving mine off. But in all seriousness, it was a relief to see it go. It never felt like a symbolic act, that I was “regaining control” like the films would lead you to believe. I saw it as something that simply had to be done; the solution to a problem. The malting had been driving me mad, the mess, the inability to wash properly. Afterwards I had a shower and it was heaven.

It was surprising how quickly me and my family got used to how I looked without hair. I was told on several occasions that I was lucky to have such a nicely shaped and well proportioned head. I was likened to Amber Rose on three separate occasions. And despite my previous reservations about looking like a cancer victim, I ended up embracing the bald. I never wore headscarves, and wore the wig only twice, once for my sister’s wedding two weeks after the initial shave, and once for a Christmas party at Matt’s scout group. But I always felt a bit silly in it. During that time I was spending all my time with close family and friends, all of whom knew I was bald. It was as if I was asking them to pretend I wasn’t and instead participate in the delusion that I had hair. Luckily, it was a seasonally advantageous time for me being winter as I could wear woolly hats out and about without looking too cancer-y, but the rest of the time I was free to the wind and I would happily whip it off in shops, restaurants and cafes. 

But I do wonder, if more than 1 in 3 people get cancer, why do we not see more bald people? My initial worries about looking "normal" was misguided. Over 300,000 people are newly diagnosed each year. So why is it not more normal to be bald and unembarrassed about it?

post-shave

my wig on it's first outing

My Treatment: part one.

I wanted to write a post all about the treatment I had for my AML, but when I got into it, it started to get a bit lengthy so I have decided to split it into three separate parts. 

1. Hickman line insertion

2. Chemotherapy

3. Stem Cell Transplant

Just to forewarn any potential reader, this post is a bit cancer-lingo heavy and might be difficult to chew your way through. Nevertheless I hope that is informative, particularly if you or someone you know is going through the same protocols, or is about to do so.

Hickman Line Insertion

I was diagnosed with AML on Tuesday 23rd September 2014. Because of the aggressive nature of this kind of blood cancer, I began a 10 day course of chemotherapy four days later on Friday 26th September 2014. But before I could commence the first round I needed to have a Hickman line inserted. I was scheduled to have the procedure on the Friday morning.

A Hickman line is a central line which is inserted into the jugular and extends to a big vein just above the heart called the superior vena cava. At the other end it consists of a plastic hollow tube which is tunnelled under the skin and exits somewhere on the chest, and this hollow tube is usually branched off into two separate tubes which are colour coded white and red. 

A Hickman line is used to administer chemotherapy drugs because the vein it is inserted into is so big and full of blood that it whooshes the toxic drugs away and around the body quickly. This is better that it going into, say the peripheral veins in the arms and hands, which can quickly become irritated and diminished. A Hickman line is also used to extract blood which became at least a daily experience, which without a line would badly bruise and scar the veins.

There were three of us scheduled to have Hickman lines that day, including Sylvia who I have mentioned in a previous post. I was last on the list because I needed to have two bags of platelets, a component in the blood which helps it to clot, because mine were very low and undergoing any sort of surgery without the ability for your blood to clot is a risky procedure. Around 11am, two ODPs arrived to collect Sylvia and she cheerily waved to me as she was was wheeled away in her hospital gown. Sylvia and I were diagnosed the same week and our chemotherapy schedules matched up quite a lot so we often saw each other around the ward and also in the day unit during the brief times we were allowed home for recuperation. 

Around an hour and a half later Sylvia returned, with a large gauze on her neck but still with the same cheery smile. “Absolutely nothing to worry about my love!” she beamed “it was fine, you don’t feel a thing”. I felt relieved. 

A short while later, the ODPs arrived for me and I was wheeled down to the theatre. I was hooked up to loads of machines to monitor my vital signs and blankets were placed over me because the room was very cold and I had started to shiver. Then my neck and chest was cleaned with a lot of orange iodine solution and a drape was stuck to my chest and neck which extended all over my face and body so that I couldn’t see anything. At this point I began to get a little panicky but before I could, a young friendly-looking ODP picked up the edge of the drape, attached it to a drip stand so that I could see and breathe properly, and sat down next to me. Then he asked if I wanted to hold his hand, to which I said yes please, and started chatting and continued to chat for the remainder of the procedure. It turned out that we were in the same year at Coventry Uni and he was just qualifying. We took a lot of the same modules and knew some of the same lecturers. He asked all about my engagement and holiday to Boston, and told me that he was moving in with his girlfriend. Of all the healthcare professionals I have met over the last year of treatment (and there have been hundreds) he really stands out as someone who really made a difference, just for that short period of time, he was just what I needed. I have since had two further Hickman lines due to infections, and both were horrendous experiences in comparison, largely because I didn’t have someone like him there with me. 

The Hickman line insertion itself wasn’t nice. The local anaesthetic that was inserted all over my chest and neck was painful and although I wasn’t in pain afterwards, it was a very uncomfortable and disconcerting experience. But I knew it was worth it in the long run. The worst part is afterwards when the local anaesthetic wears off and it is quite painful to move… the skin around the insertion site on my neck felt very tight and I couldn’t move my head or relax properly for a few days.

When I returned to the ward after the insertion Sylvia exclaimed “Oh my word, wasn’t it awful! I didn’t want to tell you before but I had blood gushing out of my neck! and I said to the surgeon there is blood gushing out of my neck! And he said it was fine, but I thought that’s not right!! Oh, it was horrible.” Bless her. I decided right then that I liked Sylvia very much. 

Eventually the discomfort and pain wore off though and I barely noticed it was even there after a few weeks. In the end I learned to love my Hickman line, particularly times when I didn’t have one I realised just how brilliant they are because otherwise I had to have cannula after cannula and blood test after blood test. 

While I was in hospital the nurses would meticulously clean the insertion site on a weekly basis and they flushed it with saline solution to keep it clear and flowing. During times when I was allowed home, it would be filled with a Heparin lock-flush which is a type of anticoagulant solution to prevent blood from clotting and blocking up the line. 

While the first procedure went well, the line itself was no good. While it was fine or the administration of and drugs and blood products I needed, it didn’t really bleed properly and I had to take deep breaths and move into all kinds of strange, yoga-like positions so that the nurses could get their daily samples. In the end it became infected and it was removed just before my second round of chemo and I had a new one inserted which worked perfectly and lasted much better. 

Stay tuned for parts two and three.

xxiv.

xxiv

Love, we must part now: do not let it be
Calamitious and bitter. In the past

There has been too much moonlight and self-pity:
Let us have done with it: for now at last
Never has sun more boldly paced the sky,
Never were hearts more eager to be free,
To kick down worlds, lash forests; you and I
No longer hold them; we are husks, that see
The grain going forward to a different use.

There is regret. Always, there is regret.
But it is better that our lives unloose,
As two tall ships, wind-mastered, wet with light,
Break from an estuary with their courses set,
And waving part, and waving drop from sight.

- by Philip Larkin

I have always been a huge fan of Philip Larkin and after reading some of his poems lately this one has really struck a chord with me over the last few months and I keep find myself going back to it. In particular the lines "Never has sun more boldly paced the sky/Never were hearts more eager to be free" - there is such clarity and such urgency to live. I find it to be a very sorrowful poem, but with a suggestion of hope that the love between these two people will always exist, as the speaker still addresses their significant other as "Love", the mention of "regret" is bold and insisted upon and as they part as equals, on their separate and inevitable "courses", they are "waving [...] waving". Sigh.

Food, chemo and body image.

My relationship with food has changed dramatically since my Leukaemia diagnosis. 

Before cancer, I had been a vegetarian for six years, enjoyed food, felt guilty about enjoying certain foods, and had been told throughout my teenage and adult life to “diet” or “cut down” or “watch” what I was eating. These influences came from unrealistic media ideals equating attractiveness with being slim, the fashion and beauty industry, celebrities, airbrushing, and my large family who have always been vocal proponents of “dieting”, where weight gain was often commented upon, and weight loss was celebrated.

In the two weeks before my diagnosis, after suffering with tonsillitis and barely even managing to tolerate water, I lost over 6kgs (1 stone) in weight and I continued to lose weight after I was admitted and diagnosed. My weight has fluctuated throughout my adult life from around 65kgs at my lightest to around 77kgs at my heaviest (approx 10st 2lb - 12st 1lb). My lowest post-diagnosis weight was around 62kgs. 

Once diagnosed, I was told to “eat eat eat!” and it took a lot of willpower to get on board with the notion and to not see my dramatic, unhealthy weight loss as a good thing. It’s crazy, in fact it’s absolutely batshit insane, that part of me was happy about losing the weight. What does that say about me and my ideals? While my body was literally fighting to keep me alive, and I was unwittingly starving it of the nutrients it needed, I was happy because of the aesthetic “benefits”. 

I think although I always ate a fairly healthy diet, it is fair to say that I had a very unhealthy relationship with food and my body image. Weight gain was largely attributable to the alcohol I consumed while at university in Norwich, where I enjoyed a fair amount of good Chardonnay on a regular basis but did not factor the calories into my diet. Weight loss happened when I ate a severely calorie-restricted yet entirely unsustainable diet.

Since as long as I can remember I had never felt good or confident about the way I looked. As a teenager I was physically very fit due to my hobby as an Irish dancer, and had very little body fat, but I was muscular and never naturally slim or slender; I always considered myself to be fat. And no one ever contradicted that assumption, rather I would be encouraged to eat less and “cut out” certain foods. 

So when lots of health professionals are telling you to eat, and eat whatever you fancy (crisps, pizza, chocolate, milkshakes, whatever you can tolerate), it’s a very confusing situation to find yourself in. At one point I had a dietician forcing high-calorie Fortisip drinks on me which, to someone like me, was baffling. I was a fatty, remember? 

Soon after diagnosis I was advised by my consultant to follow a neutropenic diet. Neutropenia is a condition caused by leukaemia and its treatments. It is characterised by an abnormally low number of neutrophils in the blood, which are a type of white blood cell responsible for fighting infection. Neutropenic patients are therefore very susceptible to potentially life-threatening bacterial infections. Some hospitals and healthcare professionals wholeheartedly embrace the idea, which was the case at University Hospitals Coventry and Warwickshire where I received my chemotherapy, whereas some hospitals and healthcare professionals do not, which was the case at the Queen Elizabeth Hospital in Birmingham where I had my stem cell transplant and subsequent admissions. Some health professionals believe that following a neutropenic diet is a way of preventing some infections but the evidence suggests that there is no real proven correlation between following a neutropenic diet and the amount of infections a neutropenic patient might incur. I followed the diet anyway as I thought I'd rather be safe than sorry.

The main principle of a neutropenic diet is to avoid foods and ways of preparing food which would necessarily lead to an increased likelihood of bacterial presence. Fresh fruit and veg should only be consumed if it can be peeled and/or thoroughly cooked. All dairy products should be pasteurized, soft or mould-ripened cheese should be avoided completely. All raw or undercooked meat, eggs, honey, uncooked herbs and spices (including pepper), or anything purchased from deli-style counters should be avoided altogether. “Use by” dates on food packaging should be adhered to, reheated food should be avoided as well as takeaways and fast food restaurants. Hand-washing prior to food preparation should be thorough. It's a bit like a pregnancy diet only stricter.

The first few weeks of hospital food was fine. Even though I was restricted by both a vegetarian and a neutropenic diet, I survived quite happily on baked potatoes with beans or cheese, macaroni cheese, vegetable curry, cauliflower cheese, cheese sandwiches, egg mayonnaise sandwiches, cheese and potato pie. Then all that cheese just gets too much. These days I can’t look at a cauliflower cheese or a baked potato without gagging. 

My family were great at bringing food in to the hospital for me and luckily I had a fridge in my room where I could store things, but as they were unable to reheat the food it mainly consisted of cold pizza, cold noodle dishes, cold tomato pasta, hoummus and crackers, and better sandwiches. I always had a supply of crisps, my favourite flavour changing more often than the hospital bed sheets, and I learned that I loved sugary kids cereals. Morrison's do a honey-cheerio dupe called "loopy bees" which I was addicted to. 

I think I have mentioned in a previous blog post that whenever I am admitted to hospital I become obsessed with food. Of course, there have been times when I have been in hospital and felt so nauseated that I have survived on water and a few packets of salt and vinegar crisps for a week. This was usually when I was suffering with an infection, or feeling nauseated from the chemo. A lot of people find that the chemo really affects their sense of taste and often prefer more bland foods. Having always had a very high tolerance for spicy food, I found that I could barely handle pepper and a for the longest time anything remotely sweet tasted absolutely disgusting to me, instead tasting tangy and bitter. What I craved was fresh and crunchy food which was really difficult on the neutropenic diet. All I wanted was a massive plate of salad! 

Around December, for the first time since becoming a vegetarian, I began to crave chicken. KFC in particular. All I could think of was deep fried chicken. I have no idea why as I had always found the thought of eating meat a bit disgusting and never felt like I had been denying myself. Of course I couldn't actually have KFC because of my neutropenic diet so I first tried Quorn replacement products, mainly the chicken-style nuggets, and liked them (actually I still prefer them to "real" chicken nuggets). And then one day there was some leftover chicken in the fridge which my mum had made, and I couldn't resist it. I devoured the lot like a cavewoman, tearing it from the bone with my teeth. I think I ate chicken for every meal for the rest of that week. I now eat fish, seafood and chicken fairly regularly, turkey at Christmas, and I have also tried shredded duck and pulled pork but I don't intend to add these to my gastronomic repertoire. The thought of beef or lamb or anything else really hasn't tempted me.

After my stem cell transplant all I could think about was food. I spent hours perusing takeaway menus of local curry houses and googling everything I was unfamiliar with, fantasizing about visiting a variety of restaurants and choosing my imaginary three courses. All I would watch on the TV were cooking programmes and I would write down recipes to try when I got home. On Pinterest I created recipe boards for Chinese food, vegetarian dishes, chicken, healthy meals, Indian food, sweet treats, sandwiches and snacks, dips, sides and condiments. I couldn’t wait to get home and start pickling things. During my most recent admission with GvHD, my obsession was anything remotely east Asian; Chinese, Japanese, Vietnamese and Malaysian cuisines in particular. On discharge from hospital I ordered a food shop from Ocado and when it arrived I realised that I had bought very little actual food and the order consisted mostly of condiments such as mirin, hoisin sauce, soy sauce, rice wine vingar, miso paste, fish sauce, shaoxing wine and oyster sauce. 

Now I see food as nutrition, and I am consciously attempting to redefine my relationship with food as something which for so long was a predominantly emotional connection to one which is more practical. Of course I love food and eating tasty meals, and that is something I want to focus on rather than any irrational feelings of guilt or attaching any sort of moral judgement to the process of fuelling my body. 2500 years ago Hippocrates said “leave your drugs in the chemist’s pot if you can heal the patient with food” and while I am not on board with whatever the latest faddy superfood is, and the this-pomegranate-will-cure-your-cancer mumbo jumbo of alternative therapies, I do believe the good nutrition is the foundation for good health. Eating good, wholesome, balanced meals, with some foods eaten more moderately and some foods in abundance, is the way to utilise food as a medicine.

Some tasty meals I have made and/or enjoyed recently: