Thursday, 26 November 2015

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”.

Friday, 13 November 2015

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.

Monday, 2 November 2015

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.