A little break.

I've now experienced one full round of treatment and (hopefully) the worst that has to offer.

I'm optimistic that I'll start to feel a tiny bit better day by day. 

I've got further rounds to go through and I don't want this story to be entirely about how unwell I'm feeling. Day 20 at Hotel Chemo is probably starting to get a bit tedious.

When I return to the blog, I'll fill you in on what's been happening. I'll be on more of an upwards trajectory, looking to the future and getting fit again (I hope).

Bye for now 👋

Is that all you got?

I've experienced the dizzying heights of the of the side effects of my treatment, over the past few days. For me, this manifested in the form of a virus which eventually gave me mouth and throat ulcers so severe, I couldn't drink and I could barely talk. It's been the most uncomfortable experience of my life.

Today, however, marks what tentatively feels like a turning point. A combination of drugs, mouth washes and well, just riding it out, has started to see me improve.

I had the usual visit from my Mum on the 27th but turned down a coffee. I was in constant  pain with my tongue and talking was a huge effort, so we just sat in each other's company a while. Sometimes that's all you can do.

I had a visit from a new Doctor who seemed really "on it." She sent for loads of tests, arranged a CT scan and arranged more blood and antibiotics for me. Thanks again blood donors! 

There were constant transfusions and antibiotics throughout the night. My mouth was constantly filling with saliva, I couldn't swallow and could no longer drink any water.

Doctors visited the next morning (the 28th) and explained the infection, while nasty and uncomfortable, was quite a normal response. They came up with a plan to get fluids, treat the virus and alleviate the symptoms. There's not much to say other than it was uncomfortable and one of those days you just try and get through. My incredible partner came and sat with me while I did just that.

A disastrous attempt to take my chemo tablets in liquid form had lead me to start dreading any further attempts. On the 29th I thought this might be coming. Fortunately, the Dr reassured me this wouldn't be happening and he spoke about referring me to the palliative care team. Although they normally deal with end of life stuff, they have a few tricks up their sleeve when it comes to managing pain. I started to receive my morphine through a syringe drive attached to my arm.

So to today, I've actually started feeling a bit better. I had my first shower in a few days which felt amazing. I now have to put a bag on both arms though!  Oh... and my hair has started falling out. Hopefully the tash will stay as some form of minor compensation. Doctors have visited and said treatment of the APL is going well, it's the symptoms that are the issue. Her feeling was very much "this is as bad as it gets" and that was good to hear.

The dietitian visited and the alternatives to not eating sound grim. I need to get back on the Fortisips!

A friend from work performed a "flying visit" and dropped off the gift for my Daughter. Within the bag was a mysterious envelope which, it transpired was completely unrelated to all this. The Mother of a young lad who killed himself had taken the time to write to me, tell me a bit more about his life and thank me for supporting her. It was a morale boost that came a completely unexpected direction.

My little girl walked cautiously into my room, still in her school uniform, at about 4pm. I'd got the gift ready and threw a few other surprises in the bag. It was amazing to see he for the first time in 11 days, the longest we've been apart. I made sure it was fun and she had games to play and stuff to do, despite me having to keep a bit of a distance. The visit gave me a massive boost. 

I know, deep in my bones, that one day I'll be scooping her up in my arms again. And in that moment, it will be like this never happened.

 

Hanging in there.

The Dr keeps re-iterating that the symptoms and side effects are all to be expected and I'm progressing well. This is just one of those times where you've got to try and ride it out. If anyone reading this ever goes through this experience, one piece of advice I'd give is to be a squeeky wheel. Don't suffer in silence and accept how you're feeling. If there's anything they can given you to make you feel even a tiny bit better - ask for it!

I didn't want anyone to visit at all yesterday and hunkered down in my room. I did manage a little walk to the shop in the afternoon and bought some sweets that I couldn't eat! 

I've recently finished Chris Hoy's book and would fully recommend it to anyone. It's a really moving and inspiring account of how's re-framed his terminal diagnosis to enjoy what time he has left with his family.

I've also read the classic Viktor Frankl book - Man's Search for Meaning. Read it. It's an awesome example of finding hope in the bleakest circumstances anyone could imagine - a Nazi Concentration Camp.

Bit heavy I know but I've been mixing it up with light-hearted stuff, watching stand up comedy and binge watching Vikings. Last night's movie was Demolition Man - classic.

I started to feel that I might have peaked and be fully understanding what I'm dealing with now. I'm hopeful I'll start turning the corner soon. Surely there can't be anything else?

A very close friend from work contacted me last night. She was incredible in the first week and took care of everything so I could just concentrate on my treatment. She told me in the immediate aftermath, word had spread and loads of my colleagues had decided to give blood, almost straight away. I was incredibly moved. She also told me that my colleagues had a whip round for my Daughter and bought her a Yoto Player. I'll be able to record bedtime stories for her, to fill one of the voids we have in our normal routine. I was moved to tears. Another example of how incredible people have been.

Mum visited this morning. It gave me a massive boost, even though I couldn't talk much! You just need your Mum at times like this don't you? I was prescribed some liquid morphine and I'm sticking to a liquid diet for the time being. I wonder if I could get some Guinness?

My partner has just been and brought me some supplies. It gave me a huge boost to see her and talk about all the good things we have to look forward to when I come out the other side of this. She's been incredible and, although it's a hugely unconvential start to a relationship, I like to think this will give us an unshakeable foundation to build on.

The mental game has been incredibly challenging lately but, as we moved to the start of week 3 I'm emboldened to think that good things will come of all this and I can find the meaning in the suffering.

"To live is to suffer, to survive is to find some meaning in the suffering."

- Friedrich Nietzsche

On the ropes.

Well, I'm still gritting my teeth and trying to ride out the multitude of side effects I'm experiencing, but I'm feeling sorry for myself today. I've had to say "No" to visitors again as Cyril is kicking my arse. I'm on the ropes.

Writing this blog has been hugely cathartic for me and is something I can turn to as an outlet when the mental battle is getting difficult. It's also useful for me to see how far I've come in a short time with the treatment. Today marks 2 weeks since I was admitted.

The 19th of January was the last time I've seen my Daughter in person. She's been ill as well so has had to stay away and we've been managing with video calls. These usually involve her going immediately to the "funny face" filters. We played games together, had a cuddle and enjoyed the general silliness that's at the core of our relationship. 

I was on a bit of a high after the visit and my mind was working overdrive. I started to think about all the good things that could come from this experience. It's a chance to re-evaluate my life and make some changes for the better. So often I've been on the hamster wheel, trying to achieve things in my career and my personal life. This is a reminder of what is really important.

I had a wander down the ward and could see some really poorly people. It gave me a bit of perspective.

The next day I had a visit from the physio which was great. She came up with a little programme for me and brought an exercise bike! While I'm not expecting to break any PBs in here, it's nice to be moving again. Exercise has been - and continues to be - such a hugely important part of my life.

There was a lot going on the the night with transfusions, antibiotics, medication and general monitoring. My Consultant said they were "watching me like a hawk" and she's not wrong. Sleep is fitful at best in here.

On the 21st I had my chemo administered while a couple of my mates were visiting. I told them the story of how I'd ended up here and we chatted about life outside the hospital. There may or may not have been comments about the attractiveness of various nurses on the Ward. 

The Doctors did there rounds and gave me a bit more clarity about what lay ahead. Essentially they are closely monitoring my response to the initial course of treatment while keeping a close eye on how my body reacts. I'd not felt too bad leading up to this stage but the side effects were about hit me with a sucker punch. 

I started to experience fevers, which have been daily. I've got cold sores around my mouth and inside my nose! I've sores inside my mouth and on my tongue. I can't eat anything without is passing through me faster than A Train. This is particularly devastating as I actually quite like the food in here and it makes me reluctant to eat! I get headaches and brain fog. I feel tired and washed out. 

But the Doctors have told me this is all to be expected and to just keep "going the course." That's something I can definitely get on board with.

So that pretty much brings me up to date. I'm typing this after another rough night but I'm still hanging onto the prospect of turning the corner and starting to feel a bit better. 

"Death smiles at us all, all we can do is smile back."

- Marcus Aurelius

A storm brewing.

Storm Eowyn rolled in today and I watched with futility as my bed pan (which I'd been using to prop the window open) flew off and danced on the wind. I hope it didn't hit anyone.

The side effects have made me miserable today but I know this is a time where I just have to grit my teeth and get through it. 

It was the 16th of January and I'd been in hospital for 5 nights. I was feeling very positive and thinking a lot about what I was grateful for and how things could be so much worse. What if I'd just carried on as normal, brushed off the symptoms and injured myself? It could have been disastrous and thankfully I knew I was now in the right place. 

I continued to have visitors. My friends were amazing and couldn't do enough for me. It seemed like everybody wanted to help and I got so many messages of support.

I had a visit from a member of the well being team. She was lovely and provided a little Teddy for my Daughter which made me unexpectedly emotional. I knew she'd be visiting later that day and I was looking forward to seeing her. I wanted to make her visits as fun as possible, so this would all be a vague memory for her some day. 

On the 17th of January it dawned on me that I'd been busy on the training course just a week ago. How things had changed. 

A couple of my old work colleagues visited and we laughed and joked like normal. I had some treatment while they were there and I could see my mate getting pale. I was also describing the bone marrow saga and the next thing I knew he was on the floor feeling queezy! I offered to call the nurse but he thankfully recovered after we changed the subject.

I'd had a good day but was struggling to sleep, so I made the excellent decision to go down a Google rabbit whole on the subject of treatment and my likelihood of making a full recovery. It wasn't good reading and it knocked me back a bit. I made the decision there and then to write any questions down if I was stressing about stuff and wait to get the proper answers from the experts.

I got some of those answers on the 18th January and my Consultant reassured me that APL is very treatable. I think, because of my age and level of fitness, they can afford to be aggressive with the treatment and this makes them cautiously optimistic. Yes, it's going to be a long hard road to navigate before I even think about trying to get to where I was with my fitness, but this is the fight now.

Treatment had been going well so far and they just told me to take it day by day.

I asked the question if I could have a bit of freedom to walk around the hospital grounds, etc. I was blown away when they said: "Do you want to go home for breakfast?"

The next thing I knew I was back at home, playing with my Daughter and carrying on like nothing had happened, for a little while. I even got told off for tidying up. It did us all so much good and I was on a high when I came back to the hospital at lunch time.

That evening I had an incredible surprise from my Martial Arts Coach. He'd been in touch with the Reorg charity and they'd provided some fantastic kit for when I eventually get back on the mats. Better still, there was a video message of support from the founder of the charity calling me out for a roll when I get better!  It absolutely blew me away. The team also had a whip round for me and I put the money towards a laptop so I could write this blog.  

Kick in the guts.

 Ernest Hemingway once wrote: "The hardest lesson I've learned as an adult is the relentless need to keep going, no matter how I feel inside."

I feel like a costume of a man. I've had a fever, a cold virus and the runs. I'm reassured, however, that this is normal and the Doctors say I am where they want me to be. Everybody reacts differently to chemotherapy these days, so there's bound to be a period of adjustment. Incidentally, I don't appear to have lost any hair yet but I have gained a dodgy moustache.

On the 14th of January I continued to have more platelets and antibiotics while they prepared my own special formula of chemo medicine. It's a combination of Idarubicin (which looks like Iron Brew) and a drug called ATRA, as my non-scientific mind understands it. This is on top of the steroids and various other tablets that I blindly take every day.  I trust the Haemotology team implicitly and every single one of them has been amazing. At one point I was having 10 chemo tablets in individual pots and it was like a really shit version of doing shots. It had little or no impact on my ability to dance, once I'd cleared the tray. Maybe they'll let me do some Jaeger bombs tonight, as it's Friday.

I was feeling positive and defiant at this stage. You can sit there and think that "life isn't fair." Life is what it is and the best way to look at things, for me, is controlling how I respond to the tough times.

Like a lot of people, I've faced adversity in my life. I've lost people and had difficult break ups. My Dad had a massive heart attack, just before Christmas a couple of years ago. I did CPR and we managed to get him to this very hospital, where he was in intensive care for 5 days.  It was incredibly hard when he slipped away. We were very close. But we had the chance to say goodbye and it brought us closer together as a family. I know he's backing me to kick Cyril's arse right now!

I had a visit from a consultant later that day and she explained they were awaiting the bone marrow results that would dictate my treatment, going forward. I'd started getting settled into my room and got a bit grumpy when I had to move - until I realised the room I was moving to was basically the same. I have plenty of space, my own bathroom and some exercise kit. I'm allowed visitors, as long as we are sensible, and I'm hugely grateful for all those things. So many people out there battling cancer have it a lot worse than me.

On the 15th of January I started to read up on my treatment and feel more positive about my recovery prospects. I was settled in my new room, having lots of visitors and generally riding a wave of positivity.

My lovely Mum continues to visit daily, bringing me a proper coffee and supplies. She's 78 and it's me that should be looking after her right now!

I'd started seeing someone in the months leading up to all this and I had questioned whether I could put her through all this, at such an early stage in a relationship when it's meant to be fun. I'm pleased to say I've found a "keeper" and she's been with me all the way.

I had my first dose of Idarubicin that night. My treatment had begun in earnest.

Momentum.

I thought I'd keep a bit of this momentum going, while I'm feeling it.

Monday, the 13th of January was a big day in my early treatment and is when things really started happening,

One of the advantages of being (relatively) young, fit and healthy is the medical wizards can attack Leukemia aggressively. It's like being broken down to be built  back up again. My Consultant had a very good idea about the condition we were dealing with, from my blood results and symptoms. To get a full picture and target my treatment specifically,a biopsy of my bone marrow would be necessary.

One of the disadvantages of being (relatively) young, fit and healthy is that you have strong bones. I think I may have the dubious honour of breaking some kind of record, as the first two needles bent and broke on my hip bone! Cue the consultant scratching her head and muttering: "This is the first time this has happened in 25 years." She then sent for a colleague with a drill!

I spent the next 40 minutes or so in the foetus position gritting my teeth and being drilled from behind. We even had a bit of Post Malone playing in the background and chatted about running. Not a bad first date. When the sample had been removed, it was stuck in the syringe and comedically fired into the air. I assume he caught it.

It was one of those bizarre moments where a bit of humour got me through. I later told one of my mates about this experience and he had to have a lie down on the floor. We nearly called a nurse for him!

I then went to X Ray to have my PICC line put in. This is basically a sturdier Cannular that helps  administer my life-saving drugs, monitor by blood, etc. It's not that obtrusive but feels weird until you get used to it being there all the time.

My Daughter came to visit that evening and I was having some treatment through my drip. I explained I'd got "bad potion" in me and the Doctors were helping me with "good potion."  That seemed to make sense to her (I should probably add that she's nearly 6.) I showed her round my room and we played together, trying to keep some sense of normality. She didn't was to leave when it was time to go and that was difficult. I just about managed to hold it together.

We spend as much time together as we can. My Daughter is top of the tree when it comes to my priorities in life and being away from her has been one of the most difficult things to deal with. I'm just trying to see it as a short term thing, hang on to the prospect of making a full recovery and being able to do all the stuff we could do before. I hope that her resilience and spirit will mean she barely remembers this when she's older.

The News

Yesterday was rough. I'd been riding a wave of feeling surprisingly OK, so it was bound to catch up with me at some point. I spent most of the day hooked up to my machine and moved very little. That said, the Doctors said I'm: "Progressing as expected," and I feel loads better today. It's amazing what a bit of freedom from the drip, 5 minutes on the exercise bike and a shower can do for you in here. 

So, where was I?

It's fair to say it was one of those moments in life when everything stops. One minute you're fit, active and healthy, the next minute you've got Cancer. It's a lot to take on board.

It's probably worth mentioning, at this point, that this is Round Two for me. I saw Testicular Cancer off in my 30s with surgery and a 7 year treatment plan. I might go into that further at some point but for now, I'll focus on the matters at hand! (Yes, I have one ball, if you're wondering.)

The Consultant wanted to start treatment straight away, so I was sent to get a transfusion while they looked for a bed. Family arrived at the hospital and the Consultant delivered the news with tears in her eyes. This was not good!

I was pleased to discover I had my own room on the Haemotology Ward with a decent view. Infection risk is high and treatment is intensive, so there are some unexpected perks!

My initial response was one of complete defiance to the news. I like a challenge and I knew I'd fight this with every fibre in my body. I had been planning to compete in a Martial Arts competition this year and I'm a keen runner, so I wanted to get in the mindset that this was a new fight.

I started to let people know the news and the support I received was almost overwhelming. I never realised I was so popular 😂 Lots of people wanted to visit and wish me well. It gave me a massive boost. My Daughter brought me a Get Well card. She'd drawn me with a big red eye, wearing a crown!

It was around this point I started to write things down in my notebook. Looking back at it now, some of it is quite raw and emotional. I'm not ashamed to say I wrote a letter to my Daughter in case the worse happened. While that may sound extreme, there are stories of people bleeding out with this condition or suffering serious infections while their immune systems are on their arse! Probably best not to think too much about those!

Everything was still confusing and surreal at this stage. So many people wanted to visit. I did consider a guest list and VIP area in my room at one point. 

It just blew me away how kind everyone was - and continues to be.

Effort.

It feels like it's going to take a lot more effort to write this today.

I've now completed my first week of intravenous chemo treatment, alongside the tablets, and it's starting to catch up with me. Last night was a bit of a rough one, I've had a temperature so I'm back on the antibiotics and will have to turn visitors away today.

But..once I've got up and about, had a brew and a bite to eat, I'm feeling more motivated and less foggy headed.

Leading up to my admission: 

I want to talk about how I ended up here. I'm not going into what I do for work, suffice to say I have a demanding job. I've been working towards a long-term career goal for some time now. Leading up to my admission in hospital, I was on a training course for a specialist role which is notoriously physically and mentally demanding, I like to think I was performing fairly well.

I'd started to feel generally unwell around Christmas time. I brushed it off as a cold, as you do. I'd started to get cold sores around my nose and mouth for the first time. Again, I brushed this off and took some over the counter medication. Then, a couple of days into the course, Tuesday 7th of January, I got a blood shot eye. I didn't think much of it at the time. It was one of the other lads on the course that pointed it out. It wasn't causing me any major issues and I had it checked out at the opticians. Some of the lads (myself included) were taking the piss and having a laugh about it, as you do. I was referred to as Terminator at one point and told to keep it 😅

By the 9th of January, it had spread to around three quarters of the eye and I thought I'd better get it looked at again. A call to 111, a quick appointment at the Doctors and I was back in time not to miss any training. Friday was a physically demanding day before I had the weekend off to spend some time with my little girl (aka my entire world). 

I figured I'd start feeling better soon and I'd power through the various symptoms I was experiencing. I was due to take my Daughter to a Birthday Party on the Saturday and, if I'm honest, I was not up for it. 

The tipping point for me that morning was discovering heavy bruising on my legs. Yes, we'd had a physical day the day before but these were not proportionate. I was starting to get concerned. 

Another call to 111, hoping I might get an appointment that day. Maybe we could skip the party and I'd be back in time to spend the rest of the weekend with my Daughter? Win, win!

Apparently, that was not meant to be. The 111 operator advised I go straight to A&E. I dropped my Daughter with her Mum and off I went. I must have had an inkling I'd be staying as I took an overnight bag. 

I was seen in A&E about the eye and - thank God - they did a blood test. I then went through to the Urgent Treatment Centre to be seen about my other ailments. My Daughter's Mum, bless her, was able to take her to the Party so she didn't miss out.

As I spoke with the Clinical Nurse, I was expecting to be sent away with some antibiotics and maybe a follow up appointment at my GP for the bruises. I got the impression that was his plan as well, until another Nurse interrupted him with my blood test results. He said: "Ah, this sits with us now."

What followed was a bit of a blur. I was suddenly in a side room with a Haemotology Consultant. I imagine my results had set off some klaxon somewhere and she'd swept down to grab them, intervening like some sort of medical super hero. I just remember her saying the words: "We've got your blood test results back and I'm afraid it's something very serious."

I sat there, looked at the ground like a naughty kid in the Headmaster's office, and just said: "Oh, God."

Introduction

On the 11th of January, 2025 everything changed for me.

I suddenly went from living my normal life to becoming an in-patient on a Haemotology ward with an early diagnosis of Acute Myeloid Leukemia. As I write this, I am ten days into that journey, currently attached to my intravenous chemotherapy medication.

From the moment of my admittance I wanted to write about it. I asked my Mum to bring me a notebook and Letters to Cyril began. This is a disclaimer that I have nothing against Cyril, or anyone who goes by that name. I like the alliteration, it sounds none-threatening and it evokes memories of the 80's cartoon series 'The Raccoons'. Cyril is the name of my cancer and these are my letters to him.

The letters were initially thoughts and feelings that became more structured as time passed and I started to make sense of what was going on. This Blog will expand on that, help me to make sense of it all and give some structure. 

As I've received a more specific diagnosis of Acute Promyelocytic Leukemia, I've received a bit more clarity on what's happening and what lies ahead. I'm under no illusions about the severity of my condition, the ongoing risks and potential complications. But I am also aware APL is very treatable and I can see a future where I make a full recovery.

I've become increasingly positive as time has passed but still face the negative feelings and overwhelming emotions from time to time. That is all part of the process and I won't shy away from that.

I'll go into more detail about what's happened lately, in separate posts. I'll be covering my time in hospital and what was going on immediately before. I also want to talk about my background, other difficulties that I've faced in life and how that's helped equip me to deal with this new challenge.

It's become my mantra that "something good will come of all this" and I hope I will be able to pay forward some of the incredible kindness I have received from the army of people I didn't realise I had in my corner. It's also a way to keep those wonderful people updated on my progress.

If I can inspire one or two people to feel more positive when things are getting pretty shit in life, then even better.