Wednesday, 5 August 2015

The first few days.

On that first day at UHCW I had a bone marrow biopsy (BMB) to confirm the diagnosis. A needle was passed through the bone in my pelvis to aspirate some fluid and a larger hollow needle was then inserted to gouge a thin tube of spongy bone marrow. I have since had a number of bone marrow biopsies. Once, a doctor I had come to know and like said that he often told patients that it was like a “dull ache”. After he performed a bone marrow biopsy on me I suggested that he have one himself so that he might be able to improve his descriptive talents.

The truth is, it hurts like hell. But in fairness to my doctor-friend, it is really difficult to articulate exactly how it feels. You first have to imagine how hard your pelvic bone is… they don’t really have much give. They are packed to the brim inside with spongy bone marrow. When someone inserts a needle into it, and extracts that marrow, it feels as though a vacuum has been created and the hard bones are bending and being sucked in to compensate. Does that make sense? It’s the best I can do.

For that first BMB (and every single one thereafter) Matthew was there squeezing my hand while a young and lovely SHO called Simon attempted to distract me by talking about television, America and our engagement. But I saw right through it and couldn’t really focus on anything but the pain.

The rest of the evening passed with bouts of crying, periods of silence and attempts to reconcile ourselves with what was happening. Matthew often says how I held it together the best in that first week, but in hindsight I think I honestly didn’t believe it was all happening. I think for perhaps the first six weeks of my illness, nothing really affected me because I didn’t believe it was happening. I still thought I had a leukaemia, not the leukaemia, remember? 

Mum, Dad and Katherine left around 9pm but Matthew stayed with me and barely slept in a reclining chair. He set up the hospital television, paying £50 for the full package and £20 phone credit. I drifted off to sleep early having not slept for days, barely waking for the regular blood pressure checks, fluid bag changes, IV antibiotics, blood transfusions.

The following morning I woke at around 9am. “Day two” I said to Matthew darkly. Soon, a porter had arrived at the door and was explaining that I should be going for a heart scan. Without changing, with greasy hair and dirty clothes, I was advised into a wheelchair and wheeled halfway across the hospital grounds for an ultrasound of my heart, feeling really self-conscious each time we passed visitors and staff in the corridors of the enormous hospital. The sonographer clicked away, taking hundreds of measurements as I lay on my side, naked from the waist up and with cold jelly all over my breasts. Matthew sat looking concerned in the corner of the room and I wondered if this was a routine test or if they also suspected something was wrong with my heart. That’s how I felt a lot during those first few weeks. There was a buzz around me, a rush to get my treatments started, to get all the right and relevant people to see me. To save my life as quickly and as efficiently as possible. 

The same consultant I had seen at George Eliot, who had given me the diagnosis, came to visit later that day. She explained a lot about the chemotherapy treatment, the timescales, what I should eat and drink, how to feel normal throughout all of this. She wrote her mobile number on a napkin and told me to text or call her any time.

The next day my family once again came to see me. My brother had driven back from Brighton where he was studying at university. My extended family had also started to get the messages of my diagnosis too. I got a drunken phone call from my cousin Marc, saying that in a years time we would look back and laugh and that we would all get pissed together and they will never forgive me for worrying them all so much. The texts were flooding in, aunties, uncles, cousins, friends, friends of my parents, friends of my friends parents. It was so overwhelming that when my battery died I didn’t charge my phone for days. My best friend Ellis came to see me that day too, she brought face cream and makeup wipes. We were wearing similar blue polka dot tops when she arrived. She said that she had told herself that she was not going to cry but then completely lost it as she entered the ward. We mainly just hugged and said “what the fuck” a bit.

By Thursday I was desperate to have a shower. Matt arrived early and after my drips had been disconnected, he helped me to wash my hair and shave my armpits. I had already began to sense a change in our relationship since our engagement – but this was something new. Having your fiancé wash your hair and body, feeling totally vulnerable, with no hint of sexuality but just complete care and tenderness, is something that really changes a couple. I realised there that he would prove himself as the man I knew he was through this, that he was in this with me and was going to be my rock. 

Later on Thursday I was moved from my private room to a bay in a four-person ward across the hall. I am not going to lie, I was furious. In the two days I had been there, I felt like I was finding my feet. I liked having an en suite. I liked my privacy. I liked having my own fridge. I liked having my family come to visit out of the normal visiting hours (It turns out that haematology and oncology wards rarely comply with visiting hour rules anyway). I think I was remembering the sleepless night I had had on the acute medical ward the night before I was diagnosed, which had been full of five elderly women who made inexplicable sounds throughout the night. 

My bed was opposite the communal toilet, and there was no door between the beds where we slept and nurses station in the middle of the ward. The patient buzzers sounded constantly and slowly drove me mad as I sat seething behind the curtain that I had pulled around me to shut the world out. There were three other women in the bays. One of the women was called Sylvia and deserves a post all of her own. The second woman was deeply tanned with platinum blonde spiked hair and neon orange nails. She made jokes about the staff and gave them nicknames that stuck for the following six months of my intermittent admissions. I never saw the third woman in the bay next to me, but that Thursday evening Ellis, my mum, Matthew and I heard her have an enema and a subsequent explosive bowel movement with only a thin blue curtain to separate us. Matthew was sat closest and his horrified face only served to set us up in a fit of hysterics. I think it was the first time any of us had laughed in days, and the lightness felt good. 

Tuesday, 4 August 2015

My diagnosis and the hours that followed.

“What do you think is going on?” a kind haematology doctor said. She reached out and held my hand with her own cold hand. “Do you want me to spell it out to you?” she asked. I nodded. She crouched down next to the bed and considered me closely, before saying softly “It is a leukaemia”. 

I swore loudly.

I didn't know what else to say. “How long have I had it?” I asked, searching for something to fill the silence. “Not long” she replied, “maybe a few months or weeks. Do you want to call your family?” I said I would after I had been to the toilet, and when I returned they had drawn the curtains around my bed in the middle bay of the six-person all-female acute medical ward where I had not slept the previous night.

I sat behind the curtain, listening to the breakfast being served, and Paloma Faith singing on the radio. A leukaemia. The phrasing fell oddly on my ear. In retrospect, my consultant probably said “a leukaemia” because she has experience treating many different manifestations of the disease. But to me leukaemia was leukaemia. And I must have a leukaemia, not the leukaemia. Not the leukaemia people die of. Not real leukaemia. 

First I rang my fiancé Matthew. He was working from home so answered his mobile quickly.

“Can you come to the hospital?” I asked.
“Is everything alright?” he replied.
“No, not really. Just come to the hospital now.” And I hung up.

Then I called my mum, she answered cheerily and asked if the doctors had been round that morning. I asked her to come to the hospital. She asked why. I said I would tell her when she got there. She said that she wanted to know if something was wrong. I could sense a losing battle so I said, with a voice beginning to crackle and increase in pitch, “I’ve got leukaemia”. She began to cry and said she would be there as soon as she could.

Then I sat alone for 20 minutes behind the curtain of my bay, listening to noises of people coming and going. A few weeks or months. I thought about what I had been doing over the last few weeks and months, wondering when that precise moment was. I thought about the day almost exactly one month before when Matthew proposed on a whale watching tour boat which we’d taken from Cape Cod during a holiday to Boston, Massachusetts. I’ve got a feeling that that day Karma and Mother Earth had a chat and decided that things were going a little too right for me lately – I had only one year to complete on a midwifery degree which I adored, Matthew and I were moving in together and now, we were getting married. Something had to give.
Minutes after our engagement while on a whale watching tour off Cape Cod
After arriving home I came down with a pretty bad case of tonsillitis. This sucked more than usual because I wanted to be showing off my antique 1920s 18ct gold sapphire and diamonds engagement ring. I wanted to enjoy attention and awe being lavished upon me. Instead I was at home in bed with my head in a bin. I’d had tonsillitis before so I knew the drill: a few days of agony, antibiotics, get well soon. My GP prescribed some penicillin and I dutifully took my tablets with fistfuls of painkillers while lying in bed feeling sorry for myself. But the course of antibiotics finished and I was no better so I dragged myself back down to the GP who prescribed a second course, this time of erythromycin. Again, I was a star pupil taking my tablets exactly as prescribed. This will do it, I thought. A few days later there was blood in my mucus so I called the GP who said he thought I may have Quincy and that I should go back to get checked over. At this point I had lost over a stone in weight having lived on a hearty diet of about nine grapes all week, I was pale, dizzy and breathless and almost passed out that morning in the shower. I explained all of this to the doctor who politely told me I didn’t have Quincy because I could open my mouth thank-you-very-much and goodbye. So home again, back to bed, casually ignoring the warning of the addictive nature of codeine on the co-codamol packet. I carried on taking my antibiotics. I needed to get better because that second weekend was my sister’s hen do and as Maid of Honour I had planned the whole thing complete with luxury cottages and a nudey man. I shouldn’t have, but I went. A lot of it was spent asleep and I drank only water. Everyone was really worried about me and on the Sunday afternoon my mum suggested that on the way home we stop at A&E. I refused as I felt exhausted after the weekend and felt convinced that we would have a five-hour wait to be told that I did indeed have a bit of stubborn tonsillitis. I just wanted to go home and go to bed, with the caveat that I would go the following day if I didn’t feel any better.

The next day I felt like death. I could barely dress myself. Matthew came over in the early afternoon and we lay in silence, too exhausted to speak, with him stroking my hair, until my mum arrived home early from work and took me to A&E at George Eliot Hospital in Nuneaton, the same hospital where I was also completing my midwifery training. We were waiting for around five minutes before being called through to a small side room with a bed, a chair and a sink. The door was propped open and I could hear the bleeps of medical machinery and the friendly voices of nurses cooing over the sick and injured. A small red-haired nurse arrived to take my vital observations as I sat on the trolley-bed. An ENT registrar arrived to check me over. He suggested that I may be suffering with glandular fever and prescribed IV antibiotics and fluids. I felt grateful and relieved at the prospect of finally feeling better. He inserted a cannula in to my left arm and took some routine bloods. A short while later, he returned with more blood bottles and a concerned expression. “I wasn’t going to but I am going to take some more bloods.” It transpired that the a&e department had a haemocue machine which has spat out a haemoglobin level of 66g/L. From my training I knew this was crazy-low – I had looked after women with 2-3 litre haemorrhages during their births and they hadn’t had a haemoglobin count as low as mine. Bloods were sent to the lab and I was wheeled around into a bay in the main A&E department. The curtains were open and everyone seemed to be moving very quickly. My IV antibiotics were started, I was helped into a hospital gown by my mum and fiancé and wheeled round for a chest xray which was over in a blink. Then I was told that the medical registrar would be along to examine me. When he arrived with two students in tow I recognised him as Dr Patel, a specialist in endocrinology and diabetes whose clinics I had attended as part of my outpatients placement. The two medical students, one male and one female, were nervous as Dr Patel is a forthright character who was obviously putting them through their paces. The female student took charge of my examination, all the while searching for nods of direction and approval. I answered all of their questions easily and seemed to pass the exam. I felt happy, there was nothing wrong with me! In hindsight it would have been much better if there had have been something to explain my seriously dodgy blood results which had since come back from the lab (my haemoglobin was actually lower at 52g/L and my platelet count was in the 30s). Dr Patel said that he thought I may have a virus which was attacking my bone marrow (the first clue which went completely over my head) and that my blood had been sent to Univeristy Hospitals Coventry and Warwickshire to the specialist haematology team (second clue – whoooosh). They admitted me and transferred me to the Acute Medical Ward. My throat was still in agony so I begged for some IV paracetamol which mercifully they supplied. I read my book for a while and text a few friends about my ordeal before settling down to sleep. During the night I was woken by a medical registrar who informed me that the following day I would be transferred to UHCW for further tests and to take a tablet which had been prescribed and recommended by one of the specialists (third clue – whoooosh).

The next morning, having barely slept, the haematology doctor had arrived with a nurse wearing a turquoise tunic. As a student midwife at the same hospital I knew her particular uniform meant she was a specialist in something. She stood at the end of my bed looking sad and not really knowing what do with her hands. The doctor introduced herself as Jhansi Mudanna, a consultant haematologist, and began by asking questions about how I had come to be at George Eliot, why had I gone to A&E? where did I live? were my parents around? did I have brothers and sisters? what did I think was going on? To this last question I explained that Dr Patel had mentioned the possibility of a virus attacking my bone marrow. “It is a little more serious than a virus” she said. That’s when she told me about the Leukaemia. “...but I don’t want you to worry as there is a lot we can do.” I decided that I liked her right away.

After a while a nurse arrived to change my fluids which had been running continuously all night. While she was fiddling with the infusion pump, I saw Matthew’s shoes below the curtain. He came into the bay and sat on the chair. I couldn’t look at him. I wanted the nurse to fuck off but she was taking her sweet god damn time. I held his hand, waiting for her to leave. When she did, I told him straight and we cried and cried and cried.

Before my mum and dad could arrive, I was transferred by ambulance to University Hospitals Coventry and Warwickshire. The paramedic had a German accent and talked to me about the most trivial things until I had to seriously resist the urge to punch him in the face. I arrived on ward 34, the haematology ward, and was placed in a side room with beautiful stencils of birds, foliage and the moon all over the walls. We waited for a while and after around half an hour my mum, dad and sister arrived. My mum and sister were in floods of tears but my dad just hugged me tightly and said simply “you’re going to be okay”. I still felt numb and didn’t cry. It felt like it was happening to someone else and I was just the stunt double who was lying in the bed while the final lighting checks were done. I was sure I would be told to go so they could get in the girl who really has leukaemia, poor thing.

Someone brought a baked potato with beans which I prodded a few times before a young-looking registrar, Francesca, a specialist nurse, Yvonne and an SHO arrived. Francesca was friendly and wise but I was bombarded with information about the type of leukaemia, how it was treated, how chemotherapy works, nutrition, hair loss, infertility, psychology, clinical trials. I don’t think I took the vast majority in but I remember somewhere among the melee she looked at me seriously and directly and said “our aim is to cure it”. And that really stuck with me. This could be cured. There was a cure. That had happened before. That could happen to me. There was reason to hope. I think I made the decision there and then that I wasn’t going to let myself become depressed. The little information I had gleaned from the copious amounts of information I had been given was that at that point we didn’t know what we were dealing with. Until after the first round of chemotheraphy, it would be difficult to deduce anything. So there was no point dwelling on prognosis statistics or fear. It was a scary prospect, the thought that I could die. I suppose the thought that you could die is always scary, and always present. Of course, I was facing my own mortality a little more directly than most, but at that time I was at the very start of such a long journey that my mortality seemed as peripheral and as abstract and as in-the-future as anyone else’s.

Dear Florence Kleiner,

I found your blog tonight, it was exactly the sort of thing I was looking for and the sort of thing that people like us need. I was diagnosed one month after you. A lot of people told me to blog through my experiences but I couldn't face it. You must have been pretty good at thinking straight when everything around you was so twisted. I am sorry to hear that your disease became too big in the end, you sound like one of the good ones. You left your mark, and lived your life deliberately. It seems that that continues. I am sending you peace and love inside your nebula, wherever that may be.

It's going to be okay.

It has been around ten months since I was diagnosed with Acute Myeloid Leukaemia (AML) and I couldn’t tell you why it is only now that I feel compelled to share something of my experiences with the world. My audience may be small, but I have very vivid memories of those first few weeks after diagnosis; I scoured the web, desperately trying to find any information I could. The most useful were charity websites such as Macmillan and Cancer Research, they gave practical advice on What To Expect but I found them impersonal, and the sparsely used forums were mainly unanswered questions for unanswerable problems. I also read scientific journal articles, but these were far beyond my academic capabilities despite having recently completed a university module in how to write a literature review. There were lots of blogs about breast cancer, but I wasn’t part of that gang. Skin and bowel cancers seemed to have it covered too - but leukaemia didn’t seem to figure in the the equation. I had cancer, blood cancer, but it was notably different from all these others. The only leukaemia blogs I found were American parents documenting the ‘journey’ of their young children. Where were all the adults? 2600 people are diagnosed with AML every year in the UK and most of these are over the age of 65. I wanted to read something personal, something from someone who was out the other side, who could tell me what it was going to feel like. So I suppose I have answered my own question. I can tell you why I have suddenly felt compelled to write, because I know that there are terrified young men and women in hospitals all over the UK right now, desperately trying to find me. And I know that this is just the beginning, but I promise it’s all going to be okay.