Mediargh: Billy's Leukaemia Blog


I'm Billy. You probably don't know me, but I run the Mediargh website. This is my story about my ongoing leukaemia battle...


PART 1: EARLY SYMPTOMS, SIGNS AND DIAGNOSIS

2015 started like a dream, ignoring the Hogmanay firework displays in their entirety while I kissed my then girlfriend on Portobello beach. But as that wonderful year came to its close, at 11am on the 30th of December, I was sat in a hospital office being told that I had just been diagnosed with an extremely aggressive and rare form of leukaemia. In 2016's opening seconds, I was lying in a bed at the Western General Hospital in Edinburgh, looking out through the slits in the window blinds at the midnight fireworks displays across the city skyline while my body was being pumped with its very first round of chemotherapy drugs.

Within weeks, I'd be told that I had a less than 5% chance of surviving.

I was told that even if I did survive the initial treatment, there was an 80% chance of the cancer simply returning, as aggressive as ever.

My first two cycles of chemotherapy failed completely and we were left with the final, gruelling option of a bone marrow transplant - six weeks of immobility, trapped in a hospital bed while experiencing everything from pneumonia, constant fever, massive internal organ swelling, soiling myself daily and sporadic suicidal thoughts.

I was very healthy and some of my friends would often tell me I was the healthiest person they knew. I was not a bodybuilder by any means, but I enjoyed the challenge of packing on muscle. Over the years of 2014 and 2015, I had gained 70lbs of muscle (okay, maybe a little fat, too) and by Autumn of 2015, at 29-years-old, I weighed 210lbs. I was in the best shape of my life. Broad shoulders. Big chest. Decent arms. I had also taken an interest in cardio exercises and was improving the distance I could run every week. Diet was great, to the point where I'd ridicule friends who ate too much greasy food or drank too much Coca-Cola. I was the healthiest person I knew. . ,

30th November 2015 was when I went to the gym for the last time, and 6th December 2015 was when I last went for a 3km run. The next week I began to feel a little run down and suspected I might have a bit of the 'man flu' coming on. Besides fatigue, the first real, distinguishable symptom was that my heart and pulse had become just that little bit too noticeably quick when I was resting. Whenever I stood up, or tried to do anything, such as put clothes on, my heart rate sky-rocketed and I'd need to sit down again.

To Summarise, during the three weeks that I felt unwell prior to seeking medical advice:



TYPICAL LEUKAEMIA SYMPTOMS I EXPERIENCED:

  • Hard / fast heartbeat and pulse (constant)
  • Fatigue, weakness (constant)
  • Headaches (almost constant, dulled by Paracetamol)
  • Fever
  • Loss of appetite, weight loss
  • Night sweats (only two or three nights spread across three weeks)
  • Bone/joint pain, particularly in my left, inner-thigh (occasional - not every day)
  • Shortness of breath (appeared and disappeared over the course of a week)


TYPICAL LEUKAEMIA SYMPTOMS I DID NOT EXPERIENCE:
 
  • Easy bruising or bleeding
  • Frequent infections
  • Petechiae (small red spots under the skin)
  • Abdominal discomfort
  • Swollen lymph nodes


With symptoms progressively worsening, I had spent a few days debating with myself on whether or not I should phone NHS 24. My local GP was fully-booked for the next two weeks and I kept telling myself that I merely had some sort of mysterious flu which would clear itself up with help from a good night's sleep.

Christmas came and went in a blur. I spent a lot of time sleeping. On the evening of December 29th, I went for a shower and something very alarming happened — while standing in the shower, my head slumped forward. I had lost all control of my neck muscles and my head was just dangling there, with my chin tucked into my chest. I could not lift my head at all. I felt like I was having a stroke. I hobbled out of the shower, stumbled onto my bed and called NHS 24.

I explained all of my symptoms from the last three weeks to the lady on the phone. We eventually agreed that a taxi would pick me up at 1am on December 30th and take me to St. John's Hospital in Livingston for a general admission. At some point during the phone conversation, I realised that I was able to control my neck muscles again.

I arrived at the hospital and, after a short wait, I was seen by who I'm guessing would be a kinda "General Admissions" Doctor. I was given a basic examination which included things like having my temperature and pulse taken, breathing patterns monitored, providing a urine sample and so on. The Doctor concluded that there was something wrong with me, but he wasn't sure what. I was admitted to one of the general wards for further examination and was given a bed for the night. It was about 3am by this point and the three other patients in the room were asleep. After another short wait, a new Doctor appeared on the scene. He felt my stomach, measured my pulse, took my temperature... then he stood back with a perplexed look on his face and said: "Hmm, this isn't right at all." He would leave and re-enter the ward several times to examine me. Eventually he announced that I was showcasing all the classic early symptoms of HIV. He more or less confirmed that I had HIV, but I wasn't buying it. There was no way. 

That particular Doctor disappeared into the night and I never saw him again, and no one ever mentioned the possibility of HIV to me ever again. Hours had passed and it was perhaps 8am before I was seen by a third Doctor, who was extremely... eccentric, zany and downright dismissive of 90% of my symptoms when he insisted I was most likely suffering from mild Tachycardia and would be sent home to rest just as soon as they'd performed a quick blood test. So, I went from having HIV to having Tachycardia within the space of a few hours. My blood was taken and I was told I'd probably be discharged within the hour.

I had a dry roll and some milk for breakfast. The other patients on the ward were all getting their breakfast, too. They were all very chatty with one another. Suddenly, a fourth Doctor entered the scene - very young and possibly a student. She crouched down beside me and asked if I would follow her so we could talk about my blood test results. Well, I knew this was going to be bad, because I followed her down the corridor and into an office where two other Doctors and a a nurse were all sitting, giving me weak smiles:

"Hello, Billy. Take a seat."  

The young, student-ish Doctor was the one who would be breaking the news to me and I had a feeling she was being assessed.

"We got your blood test results back and they show leukaemia."

I gave her a nod and sympathetic smile. I felt bad for her to have to break such news.

It was too early for a prognosis. It was too early to know exactly which type of leukaemia I had, but I was told that we'd know more details within the next day or two, following a bone marrow biopsy. They suspected I had an acute form of the disease, which means that the cancer is aggressive and kills quickly. I was told that I was going to be transferred to a specialist unit at a different hospital, but we weren't sure which hospital yet. I was asked if I knew what leukaemia is. I mumbled some guff about how I knew leukaemia was a deadly cancer of the white blood cells. I was told that treatment was going to be intensive.

Did I have any questions?

"Not just now."  

The Doctors left me alone in the little office for about an hour so that I could gather my thoughts and contact friends and family. I spent a lot of time looking out of the window because it was raining heavily and I adore heavy rain.

I matter-of-factly informed my closest friends of my diagnosis via text message. That was easy. What was not so easy was phoning my Mum to drop the bombshell on her. My Mum has been very ill and disabled for most of her adult life, with her health deteriorating notably these last few years as she approaches sixty. She lost my Dad to suicide in 2010 and her own Mother to pneumonia the following year. My older Brother had also been battling health issues for over a decade.

It was tough to heap more misery on Mum, but I told her as calmly and as bluntly as I could that I had just been diagnosed with leukaemia. I could hear her voice cracking and I could sense her tears but I just emotionally distanced myself from the conversation as it was happening. I was on autopilot and I was not going to get emotional. I was going to take this in my stride.

With all my important people informed, I went back to staring out of the window and into the rain, thinking about my beloved cat, Izzy, and wondering what she was up to at this minute... thinking about Mediargh and how I'd cope with cancer while being self-employed... and thinking about how bad luck runs in my family to an almost hilariously morbid degree. I'm not going to go into too much detail here, but I think my family history to be considerably more tragic than most. Thinking about how each member of my family has had something unfairly horrible happen to them gave me some wry amusement. I think we're cursed. 

Eventually, it was time for me to be transferred to the Western General Hospital in Edinburgh, where treatment would begin right away. There was a real sense of urgency as my cancer was progressing rapidly. They wanted to begin chemotherapy within the next 24 hours. Paramedics arrived outside the office with a stretcher and I was whisked off in an ambulance towards the Western General's Blood Cancer Unit, which would be my home for the next three months, 

PART 2: THE FAILED CHEMOTHERAPY SESSIONS

There was no time to react to anything on an emotional level. I was wheeled to my own private room on Ward 8 at the Western General Hospital and was told that a Doctor Yassir would be carrying out my bone marrow biopsy within the hour. I think it was about 7pm on December 30th by this point. It had been a long day. Friends and my Mum and Aunt were all on their way to visit, now that they knew where I'd be spending the night.

Nurses took some of my basic observations in a routine that I would soon become very familiar with: my temperature, sodium levels and blood pressure would all be monitored every four hours, whether I was sleeping or not, for my entire hospital stay, which would end up running into many months.

Doctor Yassir arrived and explained that I most likely had a specific form of leukaemia known as Acute Myeloid Leukaemia and gave me some leaflets to read later.

For now, it was straight down to business for the bone marrow biopsy. Doctor Yassir and a nurse were present. Stripped to my underwear, my bed was raised and I was instructed to lie on my side in a sort of fetal position. Local anaesthetic was injected into the very top of my ass. Doctor Yassir explained that this was the sweet spot for extracting the necessary bone marrow samples.

I could feel his needle scraping against my bone and I felt blood running down my backside. To take my mind off this, I thought about the video game Fallout 4 and how disappointed I was by it. I had bought and was playing it in the weeks before my diagnosis. The nurse was telling me about her pet dogs, but I wasn't really listening.

The biopsy involved about ten minutes worth of needles scraping my bone. It didn't hurt so much, but you're certainly aware of what's going on. Every time the needle jabs the bone it's like a little electric shock, similar to what you might experience from one of those novelty, joke shop electric pens.

My two best friends, Lewis and Ian, arrived on the ward. Barely five minutes later and my old Mum hobbled into the room alongside my Aunt. There were so many questions asked that I just didn't know the answer to. What's the prognosis? What caused this? What's the treatment plan? I just made jokes about my last will and testament and who'd get my PlayStation 4 when I die. These jokes fell a bit flat.

That night, in my hospital bed, I did a bit of Googling on my phone. I was reading up on Acute Myeloid Leuakamia – what it is exactly, the incidence and survival rates and so on. With chemotherapy treatment, young people in my age range had a 40% survival rate, so the odds were less than favourable. Alas, I was blissfully unaware at this early stage that I had an even rarer form of AML which would take my survival chances down to 5%.I was still a few months away from learning that particular caveat.

I drifted off to sleep in my hospital room and had a very vivid dream that night: a baby in an oven telling me that this was all one big joke, and that I didn't really have cancer and that I was going to be okay. Then the baby burst into flames.

Chemotherapy Treatment Patterns:

Chemotherapy was to be given every twelve hours for ten days, at 12am and 12pm. Depending on the drugs used each time, the treatment session could last anywhere between one and four hours. My first round of chemotherapy was scheduled for 12am on the 1st of January 2016. As mentioned in Part 1, I watched the Hogmanay fireworks displays across Edinburgh's city skyline out of my hospital room window while experiencing that first chemotherapy session and it's an eerie memory I'll never forget.

Chemotherapy treatment, on the whole, is very repetitive and tedious, so I'll explain it in brief detail only once: The nurses would enter the room with the chemotherapy bags and ask me to confirm my name, date of birth and the last four digits of an ID number which was taped around my wrist. The chemotherapy bags would then be hooked up to an IV drip and the liquids would be injected into a vein in my arm over the aforementioned period of one-to-four hours. That's it! The actual treatment is simple enough – it's all the side-effects which make chemotherapy so notorious.

Due to my young age and previous good fitness levels, I didn't really experience any serious side effects during my initial course of chemotherapy, except that every other day I'd maybe vomit suddenly and quite violently. I remember brushing my teeth one morning and my mind was just drifting off, thinking about something plesant, then suddenly I'd be crouched on the floor, choking on vomit which just wouldn't stop materialising. That became fairly routine over the next five months.

During chemotherapy treatment, things fall into a safe routine. There are no shocking developments or dramatic twists and turns. You simply go through the treatment every 12 hours, like clockwork. “Not much happens just now,” my Consultant would say most mornings during his routine ward visit. “It's just a case of 'wait and see'”.

The other major thing to mention is that for the next several months I was hooked up to an IV drip almost constantly, which made things like sleeping and going to the toilet an absolute grind. You have to wheel the stupid thing everywhere with you, and the IV tubes would often get tangled, and you couldn't sleep in the comfy positions you were used to, and so on.

The Dreaded Hickman Line Insertion & Subsequent Blood Clots:

Far more daunting than the chemotherapy treatment was the news that I was to receive a Hickman Line, which is basically a tube they bury into a vein near your heart, so that they can inject the chemotherapy and other treatment drugs more efficiently. The Hickman Line is a ghastly looking thing:


The insertion process is less than pleasant and is elaborate enough that it needs to take place in an operating theatre with a surgeon and several assistants present.

Having a tube tunnelled into your neck and down into the large veins surrounding your heart is a very surreal experience as you feel the sensations of the surgeon threading the tube through your veins, pushing and shoving its way through your innards.

My Hickman Line was supposed to stay with me for at least the next six months, but mine only lasted for two weeks before it started creating significant complications.

Firstly, having a giant tube inserted into your blood stream leads to a high risk of infection, and infected I became! It was Sepsis syndrome, which, while potentially life-threatening, was easily treatable with antibiotics.

Secondly, and more seriously, the Hickman Line blocked blood flow in my veins and so I developed two blood clots in my neck. It would've been around about January 24th when I first started noticing pain in the lower, left side of my neck. Over the course of three days, the pain got so bad that I couldn't actually move my head from side to side or up and down. During this time, the Doctors told me it was probably just an issue with my neck muscles, caused possibly by me lying awkwardly in bed. Eventually, a quick ultrasound scan revealed two blood clots.

Beyond the fact that they are dangerous in their own right, the blood clots complicated matters for two reasons. Firstly, they caused an urgent need for the Hickman Line to be removed. Secondly, treatment for blood clots would require long-term use of blood-thinning medication. With intensive treatment for blood cancer ongoing, the last thing I needed was to be on blood thinning medication. It would make even the simplest of procedures, such as an injection, more dangerous than usual as blood flow would be heavily exacerbated.

The Complicated Hickman Line Removal:

January had disappeared. I'd spent the entire month in hospital. Chemotherapy and its two-week recovery phase had ended and I was set for discharge. All that needed to be taken care of now was the faulty Hickman Line.

The Hickman Line removal procedure was a painful, very intense mess which lasted for two hours. Although there was far worse to come in the months following, the Hickman Line removal was easily the 'Big Story' from my first hospital stint.

The Doctor injected me in the neck and around the upper chest with local anaesthetic. She then sliced into my neck and we immediately ran into two problems. Firstly, the Hickman Line tube had grafted with my tissue and so would be tougher than anticipated to remove. Secondly, because I was on blood thinning medication due to the blood clots, a massive stream of blood instantly began to piss out of the incision in my neck and down onto my chest, pooling there before overflowing and going all over the bed. I'd never seen so much of my own blood before and it just kept pouring out. It reminded me of how Mr. Orange spends most of his time lying on the warehouse floor, covered in his own blood in the film Reservoir Dogs.

This is sort of what my Hickman Line removal procedure looked like, minus the gun and nice suit.

I heard the Doctor breathing heavily. Then I heard her mumble to me that she wanted me to press the emergency buzzer.

Then she fainted.

She dropped her instruments to the floor and slumped over the side of my bed, holding onto my thighs for a few seconds while I tried my best to keep my balance and not allow her dead weight to pull me out of the bed, before she then dropped to the ground.

Well, I reached for the blood-soaked buzzer and buzzed, then waited patiently.

A nurse entered the room. She assessed the situation, which included me losing lots of blood while a Doctor lay semi-conscious on the floor. The nurse grabbed my blood-soaked buzzer and buzzed for backup.

Doctor Yassir was the backup and he sprang into action, barging into the room and tending to my open wound while somehow also managing to revive the fainted Doctor and get her back upright and out of the room to recover.

Doctor Yassir did his best to stem the bleeding, but he was also explaining to me that the anaesthetic would wear off soon and I'd have to “work with him” to get through this.

There was lots of fiddling, slicing and pushing and pulling deep inside my neck. The anaesthetic was indeed fading and I could feel the sharp instrument digging deep down into my neck, pulling frantically at the snapped Hickman tube which ran into my chest. It really hurt. I wanted to pride myself on not yelling out or squirming, so I just looked up to the ceiling and thought about a nice memory of an old girlfriend and a picnic. I focused on that memory very intensely and stayed perfectly still and silent.

Eventually, there was a huge feeling of relief as Doctor Yassir pulled a giant wire out of my neck.

“And that is that,” he said calmly. “Now we'll just stitch you up, which will be quite painful.”

The stitches were indeed painful, but I didn't care too much because I was just glad that the Hickman Line was out. I looked over to the clock and was stunned that two hours had passed since the procedure began.

Going Home:

Barely an hour after that ordeal and I was surprised to learn that I was ready to be discharged. My two best friends, Ian and Lewis, had arrived to come and take me home. It was January 31st and I hadn't been outdoors in over a month, back when they first wheeled me into the hospital on the eve of New Year's Eve. I would spend a week at home while the Doctors would work to determine whether the first round of chemotherapy had done its job or not.
In Part 3 I'll be covering the second, slightly more eventful month of chemotherapy and the preparation for the bone marrow transplant. You can follow me on Twitter via @BeeDeeArgh for blog updates and the like, if you so wish.

Last Updated: 22/08/16