Usually I put funny anecdotes while recollecting this story, but I’m not going to here. I will try to be as detailed as possible. If you want the funny story, ask me personally. I shall also try to include all of my drugs taken in this too, for anyone interested.
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In July 2015 I was struggling to breathe for quite some time. It felt that I couldn’t fully fill my lungs with air. I also developed a pretty disgusting cough that I couldn’t seem to shift. This was strange as I barely ever got unwell and to have this cough for 3 weeks I started to become a little worried. 3 weeks is the point that you’re meant to seek medical advice for issues, so off to the doctors I went. The doctor thought I was starting to develop an acute asthma so prescribed me an inhaler. Turns out, an inhaler didn’t help. Nor for that matter did the antibiotics I was prescribed the next week, so finally I was referred to the Princess Royal Hospital (PRH) in Telford for an X-Ray of my chest.
A few days following the X-Ray, I was called into my GP’s office and my mom came with me. That was where I was told that I had, at the time, a 14cm mass in my chest. It didn’t get more plain to me that this was my worst nightmare come true, but they were unsure as to what it was at this point.
I was then given a CT scan date for the following week, of which, I didn’t make it to. A few days later I was unable to even eat liquefied weetabix without choking, so my parents took me to A&E at the PRH. This is the first time I had ever had an injection in my life as they cannulated me, twice. I was then taken for an emergency CT scan which was examined over the course of a day. At this point i was approaching my first 24 hours without food. I was given a small dose of the steroid Prednisolone during that evening, and breathing became easier.
The next day I was taken to Stoke for a biopsy. This was my first ever operation. They took a sample of the mass in my chest and it was sent off for examination. I was glued up (more on this later) and then sent home after another course of steroids. More Prednisolone, in case anyone is wondering.
A week later, surprisingly my breathing was becoming worse again, and I received a phone call of the Royal Shrewsbury Hospital. I was told an appointment was being made for me with a cardiothoracic surgeons, as they thought I had an unstable thymus gland and were going to remove it.
I then had 24 hours to come to terms with open chest surgery, before I received another phone call to tell me that it wasn’t an enlarged thymus gland, that I had lymphoma, and that I needed to go to Shrewsbury hospital right away. I was diagnosed with lymphoma over the phone after 24 hours of thinking I didn’t have cancer.
I went to Shrewsbury, and after some blood tests they sent me home for one more night before telling me to go to the Queen Elizabeth Hospital Birmingham to prep myself for chemotherapy.
This place then became my home for 43 days. Upon arriving I was booked in for a bone marrow extraction, a very large needle is pushed into your pelvis from which they extract your bone marrow, including a small chunk of bone the first time. This is how they determined that I also had Leukaemia. My full diagnosis became:
T-Cell Lymphoblastic Leukaemia.
I opted into a clinical trial funded by Cure Leukaemia in Birmingham.
Thus began my chemotherapy.
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I was given 10mg of Dexamethasone each day, 4mg in the morning, 6mg in the afternoon. I was also administered Intravenous (IV) chemotherapy of Vincristine and Daunorubicin every Friday for the first 28 days. I had approximately 1-2 hours of natural sleep a day. I had hallucinations, joint pain, extreme hunger, altered personality, extreme mood swings and random bursts of uncontrollable energy. Not to mention putting on 16 kilos due to ravenous steroid induced hunger. This was all caused by the steroids. During this time, I also developed Peripheral Neuropathy in my hands, I lost most feeling and strength within them, this lasted almost the whole year. It reached the point that I could not even open a packet of crisps with ease.
My biopsy site opened up at this point, of which my scar is pretty gnarly now. It didn’t heal due to chemotherapy so I had a mixture of seashells, silver and honey to heal it over time.
I then progressed to my second phase of chemotherapy, having Cyclophosphamide and Cytarabine. Cyclophosphamide (Cyclo) was on a Monday and safe to say, this was my first experience of rough chemotherapy. You have a 3 hour hydration followed by the bag of crap for half an hour. This stuff makes you vomit, a lot. Then, the next 4 days were Cytarabine, of which, this chemical was mostly harmless on a ‘things you can tell are going wrong with you scale’. It’s only when you have tests that you see that it has began to have an effect on the production of blood in your body, and that your red blood cells + platelets are rapidly declining. This led to large scale fatigue, drowsiness, headaches, bruising and inability to concentrate on near enough anything. Cue a few pints of blood, and a few bags of platelets to top me up. I then did the same thing the following week, rinse and repeat.
I then had 2 weeks of time to recover in which I had Mercaptopurine (6-MP) every day. At this point I should mention that 6-MP is a widely used anti-leukaemia drug, but it also affects your immune system, effectively destroying your neutrophils (A vital part of your white blood cell force). Most chemotherapies also have this effect, so, I should mention that I had almost an entire year without a working immune system.
I repeated the 4 week block again, meaning this cycle lasted two whole months, two weeks on, two weeks off. On my two weeks off I had an intramuscular injection. I chose my bum as it was apparently the least painful place to get stabbed.
I found out I was in full remission on December 15th 2015. This was known as MRD negative as there was no residual leukaemic cells visible on a genetic level. What a relief this was, but not even close to being the end.
Next up was Methotrexate. I have nightmares about this drug. It was administered after a 6 hour hydration, hung up and took 24 hours to empty the bag. I was then supposed to be in hospital until the levels of the drug were low enough in my body that I was ‘safe’. My first two cycles of this played out as follows:
The bag was hung (meaning put up to start pumping), 3-4 hours passed by and I began to start feeling nauseous. Then, nausea turned to extreme sickness, extreme sickness turned to all I could do was sleep, vomit, sit on the toilet or vomit more. I did not eat for 8 days. I was given Folinic acid IV as a rescue drug to protect my body from severe damage and to help rid me of the methotrexate. I slept most of the week, when I would wake up in the middle of the night I sometimes would not make it to the bathroom before I lost control of my bowels. I threw up so much that I started to vomit the lining of my intestines and continual bile because there was nothing to vomit. My vomit and faeces turned yellow, as that was the colour of methotrexate. This was up there on my scale of worst things to ever happen to me.
I took a month to recover from the first time, you’re only meant to take 2 weeks.
The second time was just as bad.
The third and fourth time, however, went by like a breeze. I was given levomepromazine (AKA Nosinan) which is effectively a sedative anti-sickness. Alone with Aprepitant, these drugs worked in combination so that all I did for 6/7 days was sleep. I managed to eat once or twice. I practically lived off milkshake though. This is because Methotrexate also ruins the lining of the soft tissue in your body, so, my lungs and my mouth became exceptionally raw. I struggled breathing for a while, and my mouth was continually sore from ulcers that appeared and the muscle fibres in my mouth became very predominant. also causing more discomfort. I had a total of a month with little to no food because eating caused me too much pain, or because I would vomit it straight back up.
I managed to pick up an infection and have another 16 days of hospital stay in Shrewsbury half way through, I also managed to develop a blood clot in my left forearm due to a faulty cannula and some pretty harsh antibiotics. This was a weird experience and I was then on blood thinners for two weeks following it. I had a new PICC line inserted too following this infection. I had it inserted without anaesthetic, just as an FYI.
I then went on to high dose Dexamethasone, twice the dose of my first round of steroids but only for 7 days this time. At the end of the 7 days, a pain began to build in the base of my spine. This reached the point of pain as to where it can only be described as someone was trying to rip my spine out of my lower back. I was practically paralysed from the waist down for 2 days and either had to have help walking, or crawled everywhere. As if by magic, at the end of the 2 days, the pain subsided. In this time I had Codeine and Oromorph to ease the pain, but it didn’t really help. I then had a week with one dose of Vincristine again, but this time along side a dose of Doxorubicin.
Finally, to finish me off, I had the final month consisting of another two weeks of Cyclophosphamide / Cytarabine and then the two weeks of Vincristine + 6-MP.
I finished IV chemotherapy on the 7th of June and I had my last ever hospital trip for chemo on the 8th of July.
This whole experience was hell.
Because I cannot remember exactly where they were, I also had 23 spinal injections, where I had a needle in my lower spine and then had to lie down for an hour so that the chemo did not go to my brain which would cause a severe migraine.
I was given 26 pints of blood and 8 bone marrow biopsies.
I had a total of 3 infections due to neutropenia, which blocked 2 of my 3 PICC Lines.
I spend over 200 days in hospital in over 11 months, and the thought of staying in hospital again gives me severe anxiety.
I suffer from pretty terrible flashbacks and PTSD.
The steroids I took caused A Vascular Necrosis in my right hip, so that has become arthritic and I am going to have a hip replacement over the next few months.
I still have 20 months of oral chemotherapy and weekly blood tests to go.
I think this is everything, but feel free to ask me any questions about anything you have read or that I have not written, I am a pretty open book.