He's on the ropes.

It's been awesome being at home. It's nearly two weeks since I left the hospital. In some ways I've been in a bit of a bubble - between treatments - as I've been feeling pretty normal lately. I wouldn't say the bubble has burst as such, but I'm being re-admitted for Round 2 on Monday.

The good news is I appear to have Cyril on the ropes. From the latest bone marrow tests, the cancer is in remission. While it's important to remember I'm not cured and there are three rounds of chemo to go, I'm looking at a 90-95% chance of being completely rid of Cyril. And I don't think Doctors give you figures like that lightly. It was so good hearing that news today. It made me a bit emotional. 

On the Friday the 21st I was really settling into being back at home. I'd been sleeping loads but had good energy levels during the day, so I'd been able to go out walking and enjoy the decent weather. I also had carte blanche to eat as much as I wanted. I needed to put on weight, I still do, and I'd started to eat normally again. It's nice being told to consume as many calories as you can! 

My Daughter came round before her swimming lesson. We spent a good ten minutes conversing in "alien talk," which is basically gibberish. Half-term had flown by and she told me she wasn't looking forward to going back on Monday. She said that but, in my experience, she runs into school without even looking back most of the time!

My mate visited in the evening. I stuffed my face with pizza, we had a good session on Fifa and chatted shit. It was great. I've really started to appreciate little bits of normality that I usually take for granted.

On Saturday the 22nd I went out to the Peaks with my partner It was a lovely sunny day and quite warm for the time of year. We walked about 2.5 miles without even realising how far we'd gone. We had a break, sat down in the sun eating custard donuts with a view of Chatsworth House. I'd not felt so content for a long time. By the time we got back to the car we'd walked over 5 miles which is a big achievement for me at the moment. I was struggling to walk to the end of the ward a few weeks ago.

I weighed myself on the 23rd and was happy to discover I'd put a couple of pounds on. It's weird looking at the scales and hoping you've put weight on!

I had a visit from my Sister. It was nice to catch up as she'd been ill and had to stay away. My Daughter came round and we spent a few hours together playing, cuddling and watching Sponge Bob.

On the 24th I had a wander into town to post some forms for my Mum. I got a few funny looks in the Post Office with my bald head and Covid mask but I'm not taking any chances that I'll get ill again. I had a nosy at some of the quieter shops before walking home. Again, a nice little bit of normality.

I went into town again on the 25th and picked up a couple of local delicacies for my partner to try for tea: Henderson's Relish and a steak and stilton pie from Meadowfresh deli in Chesterfield. If you've not had one (and you like steak and stilton) then go and buy one immediately. They are amazing. I am happy to report that my partner agreed.

I picked up a little toy for my daughter as well, a typically girly Killer Croc figure to go with her Gotham City jail. It came with a car that fires missiles and has jaws on the bonnet that open and close. Perfect for crushing the life out of super heroes. It was definitely for her, honest.

I had an MRI scan in the afternoon. The letter said "MRI both buttocks." I've had plenty of MRI scans but it was unlike any others I've experienced. I had to change into some hospital issue pyjama bottoms that looked a bit like gi bottoms. This was the closest I'd been to anything BJJ related for a while, so I felt a little wave of nostalgia. They gave me headphones to drown out the loud mechanical background noise. I was treated to Michael Jackson singing Man in the Mirror and Take That's Rule the World. Weirdly the radio host was speaking in Spanish, so I've no idea what station they'd tuned into. I was also informed the scan would take 20 minutes! God knows why they needed to look at my arse for that long. 

My Daughter came round again in the evening and she enjoyed beating us all at Snakes and Ladders and Switch Sports.

I had a couple of appointments on the 26th. One of them was with a Doctor dealing with pain management and she told me I could start weaning myself off the morphine. This was good news as it meant I would be able to drive again. The Doctor said I was looking really well, she'd not seen me since I was looking rough on the ward during Round One of chemotherapy. It was nice to hear how far I'd come, as you don't realise it yourself sometimes.

I had a visit from a mate in the evening. It was good to have a catch up and he brought me some chocolate and alcohol free beer which were very gratefully received and have been consumed already!

On the 27th I dropped my car in for a service. It was a cold and sunny day, so I had a nice walk home through the park. There were lots of runners about and it got me thinking that I can't wait to start training properly again. I've been doing some light weights, walking and using a stepper machine. I can't do much more at the moment as my PICC line gets in the way. It's likely to be fixed in my upper arm until I've had my last dose of chemo. So I reckon I'll be able to gradually get back into training at that point. It's a marathon, not a sprint but I'm starting to feel confident I'll get back to where I was with my fitness. My Partner told me she'd entered a Half Marathon with her Sister in September. So it looks like I'll have a running buddy when my treatment is done!

My mate nipped round for a chat and was kind enough to drop me at the garage after. I left there £600 lighter. I'd had a major service, which was overdue. The car had been stood on the drive for a couple of months and when I set off to the garage the brake pads were stuck on the discs and ended up getting damaged on the drive down there. Good job it's pay day soon! I thought I'd give the car a quick blast on the way home but ended up in a traffic jam, as there had been an accident on the dual carriageway. When I finally escaped I surprised my Mum by turning up at her house. She was really pleased to see me out and about. It's the little things that count some times.

I had another lovely visit from my Daughter, although she got upset when it was time to leave. I'm really looking forward to a time, hopefully soon, when she can start staying over night again. 

On the 28th I had the good news about the cancer being in remission and came away from the hospital with a much clearer idea about what's happening next and what the plan is. They are hopeful the side effects of Round Two won't be as bad and I should be admitted for days, not weeks this time. The Doctor also told me I'd not put on as much weight as they would have liked, so I was instructed to go away and eat as much as I possibly can over the weekend. Challenge accepted!

Remember what your "why" is.

It's been a little while. I've been enjoying my week at home more than words can express and I feel like the positive effect on my health has been immeasurable.

So what's next? Lots of appointments next week and Round 2 of chemo approaching. Hopefully, I won't experience the same dreadful side effects.

On Monday the 17th I had another lovely visit from my Daughter. The timing of my week at home has been perfect, with it being half-term. She's got into a routine where she runs up to the living room window, shouts: "Daaaaddd!" and waves her arms around like a lunatic. It's the highlight of my day. We played some board games, most of which she won. We chatted about what she's be doing with her Mum over half-term. We just spent time enjoying normality and I couldn't have felt happier.

Mum visited as well. Then the District Nurse called in. So I had a house full for a while. My mate dropped  by in the afternoon for a chat and to see if I needed anything. I don't take for granted how many people I have in my life who are genuinely willing to drop everything and help out. I hope they all know I'd do the same for them.

I spent the rest of the afternoon sorting out some life admin': getting things organised for my Mum that I'd been putting off, speaking to the Gaffer at work (who was great and very understanding) and sorting out some of my own paperwork. As the day went on, I started to get a bit apprehensive about my second biopsy which was looming the next day. It didn't go so well last time! So I did a bit of retail therapy and treated myself to a new pair of trainers. And maybe a hoodie. Got to look good for those appointments!

I slept well and headed off for my biopsy on the 18th. I was really impressed with the new Cancer Suite and they were ready and waiting for me when I got there. I had a chat with the lovely lady from the well being team. It was nice to catch up while I was feeling better. The last time I'd seen her on the Haematology Ward I was in a bit of a state. 

The biopsy went better than expected. Maybe they just used the same hole in my pelvis so it wasn't as bad? A quick blood test and a clean up of my PICC line and I was on my way.

I had a little walk with my Mum after, as the sun was out. My partner came round and we went for another walk. We didn't go far and I had a little nosy at a flat I'd seen for my Mum. She's looking at downsizing and that's one of the things I've been occupying myself with. We had a chilled out afternoon after the walk. I ate some pizza (massive progress on the solid food front)! The time flew by and it was time for my partner to go. 

At about 10pm I thought I'd check the tracking on a delivery I'd been waiting for, as I'd not been given a date or time. It turned out it had been dumped behind my bin since 11am that morning. Good job it hadn't rained and no opportunists (scrotes) had seen it!

I had another lovely visit from my Daughter on the 19th. I'm still wearing a mask when people visit, as my immune system isn't the best. I also have to ask people to stay away if they are feeling ill. Thankfully, my Daughter is fine at the moment, so we've even been able to have a few cuddles. Something we've both missed. She said to me: "It's nice that we can have hugs again Dad, now that your blood pressure is better."😊 Amazing the things they pick up. She must have overheard someone talking about my blood pressure in the hospital. Bless her.

My Daughter has been my guiding light through all of this. I've been determined to fight and beat Cyril but she's given me that extra incentive when I've needed it.

I've been through a lot in my life, as many people have at my age (29 😉). I've lost friends and close family, I've beat depression, I've had difficult break ups, I've started again (more than once), I've seen some shit at work I'd rather not have seen, I've beat cancer before and now it's getting a good hiding again. It's made me resilient and it's made me philosophical. Of all the inspirational things I've read, this quote stands out for me: 

"He who has a why to live for can bear almost any how."

- Nietzsche

So if you're ever struggling. And you will be. Life is a struggle at times. Just remember what your why is.

Anyway, on the 20th I had a good tidy up and did some more admin before my partner came round in the afternoon. Despite the rainy weather we went out to Curbar for a walk. I'm loving getting out and about at the minute, in all weather conditions, and today was no exception. We got dried off and had a cosy afternoon. I got my ass kicked on Switch Sports and we very nearly fell asleep on the sofa watching Step Brothers. It was a good day!

 

Normality

For the first time, I'm writing this from my kitchen table and I can't even begin to explain how good it feels to be at home, after 5 weeks in the hospital.

Once again, the Doctors seemed pleased with my progress on the 13th of February. All my numbers continued to be good and it seemed like I'd seen the last of the high temperatures. I was granted home leave for the afternoon and was told they were looking at discharging me over the next few days, possibly for a week or two. Needless to say, I was ecstatic with the news, especially as it would coincide with half-term and getting some extra time with my little girl. 

I had a visit from an old uni mate. He's battled cancer as well and taken on chemotherapy. It was good to compare notes but better still to talk about old times and have a laugh. I can't believe it's nearly 25 years since we started university.

I got home for a few hours in the afternoon. My Daughter came over and spent the first half an hour sticking stickers on her water bottle that she takes to school. My mates had bought her a couple of magazines and there were loads of stickers in the middle. She found them almost immediately and wasted no time getting to work. What is it about kids and stickers? We played some games in her room, mainly involving me being the bad guy and getting beaten up. Then we played Switch Sports and I got to see her competitive side come out. I've no idea where she gets that from.

On the 14th I found out I was getting discharged. I was told everything was looking good. My white blood cells were looking strong and I'd not had any temperatures for a while. The plan was to send me home with all my medication (there's a lot of it). I'd have to come back in on the 18th for another bone marrow biopsy but, other than that, I would be free for a week or so. The results of the biopsy and more tests will determine when I'm back in for Round Two of chemotherapy and what that will look like.

The dietitian came in and gave me some information about getting more calories in my diet. She gave me a sheet with a load of recipes for high calorie milkshakes and smoothies, etc. It's really useful as, even now, I'm struggling with solid food and I've lost over 2 stone (12.7kg). It's shocking how long it takes to build muscle and gain fitness and how chemo can take it away in a matter of weeks. I've got some work to do. But I just have to remember that it's a small price to pay for healing. I think we often get bogged down in the negatives of chemo. It's important to remember that it's curing me.

 

I was told I'd be able to leave about 3pm, so my partner arrived and we were hopeful we might get to have a little drive out to the Peaks, maybe catch a sunset. Unfortunately, I was still waiting for my medication at 5pm. I chased it up and was told they thought the pharmacy team had gone home. After the elation of my imminent escape, I was facing another night in the hospital. Thankfully, at 5:30pm a nurse turned up with what seemed liked enough medication to re-stock a pharmacy and a discharge letter with all the details of what to take and when to take it. I've had to make my own list to simplify it all.

We spent a nice evening at home, not thinking to check what was in the bags. My partner had bought me a framed print of the location of our first date (Curbar Edge) and a photo book for us to fill with all the fun stuff we are going to do when things get back to normal. I had flowers delivered for her by the way, I'm not an animal.

I checked my medication and realised my Tretinoin chemotherapy tablets weren't there. Only the most important ones. A quick call to the ward and we were on our way back to collect them.

When I finally crawled into my own bed, for the first time in ages, I was absolutely knackered. It was about 10:30pm. I woke up at 11am the next day! I must have needed it. It was so nice to have interrupted sleep and no background beeping of hospital machines. I thought I'd have a bit of anxiety having the comfort blanked of the hospital staff taken away. Apparently not!

I had another lovely visit from my Daughter on the 15th. She stayed for a couple of hours, mastering bowling and golf on the Switch. She's 5 and she's beating me already. It's an absolute joy for her to come home and not have to visit me in the hospital.

I had a chilled out afternoon on my own, binge watching Vikings, playing on the Xbox and getting my shopping delivered. It was basically a load of high calorie ingredients to make all the recipes the dietitian had given me. It seems to be working well so far and I feel like I'm consuming a lot more than I was in hospital.

I had another good sleep, although I set my alarm for 8:30am this time so I wouldn't be late taking my tablets. 

It was a chilled out start to the day on the 16th, watching Match of the Day and drinking various high calorie smoothies and coffee with fortified milk and cream (actually pretty good).

In the afternoon we went for a walk round Linacre Reservoir. I surprised myself and managed just under 3 miles. We bumped into some friends and it was nice to see them outside of hospital. I nearly walked past them if truth be told, I was in my own little world. But when I realised who it was we had a nice little catch up and I could tell they were genuinely pleased to see me out and about. It was nice to have a bit of normality.

A very relaxed afternoon followed, watching Netflix and moving very little after the long walk. It's been an incredible day being at home, going for a walk and doing normal stuff with my partner. It makes me feel like a return to life Pre-APL diagnosis might just be possible... 

"Every storm runs out of rain."

- Maya Angelou

I broke out.

The upwards trajectory has continued and I've been allowed some "day leave" today. It's the first time I've been home, or anywhere off the hospital site, for 25 days.

The Consultant delivered the news that I'd be allowed home for a few hours today - and possibly tomorrow - as I troughed a full omelette. This is more progress as my diet gradually gets more solid. It seems my platelets and white blood cells continue to generate on their own and the high temperatures and fevers have abated.

I had a visit from a couple of old uni mates on the 9th of February. It was really good to see them both, talk about the "good old days" and have a laugh.

My Partner visited later in the day. The weather wasn't great but we had a walk around the hospital gardens anyway and I really enjoyed getting outdoors. We chatted about all the things we are going to do when I get back to some level of normality.

After she'd left, I had the canular in my right arm removed. This had been bugging me for a while as it was in such an awkward position on the crease of my upper and lower arm. I never had full range of motion while it was in place. It was such a relief to have it taken out and meant I could start using my weights again (my massive 1.5kg dumbbells).

On the 10th of February the Doctors told me that my infection markers were creeping up again. They were concerned about my temperatures as well and said I was really vulnerable to infection. This scuppered any hopes of getting home for a couple of hours. Something I'd be hoping I'd be able to do for a while.

I got a bit of a lift late in the day when I found out a load of my work mates will be doing the Yorkshire 3 Peaks for Reorg and Cancer Research. It's a challenge I've completed myself and I'd love to be at the finish line, cheering them on when they come in under their 12 hour target.

I decided to have a little nap and woke up hours later at 6pm. I'd missed my tea and felt massively disoriented. I was convinced for a while that I'd slept all night and it was 6am. The rest of the night was pretty uneventful, although I didn't have any temperatures.

I started to notice on the 11th of February how much weight I'd lost. Most of the water weight had gone by now. I's shocking to thing that it takes months, years even, of training to build up a decent muscle mass and a good level of fitness. A couple of weeks after chemo and it's pretty much gone. Don't worry Cyril, I'm already making plans to get it all back.

The Doctors came in with more positive news. I should be able to get home this week. Better still, if my white blood cells continue to rise I should be allowed home for a week before Round Two starts. They said Round 2 might look different and they may take me off Idarubicin because of the awful side effects I've endured. Hopefully that means I've seen the worst Cyril has to offer now.

I had another lovely visit from my Daughter. More colouring in, playing games and chatting.

My mates visited in the morning. We had a good laugh and they were very impressed by my hospital compression stockings.

It was about 2pm when I got the news that I'd been hoping for and I'd be going home for the afternoon. Mum picked me up and I was able to enjoy a few hours of bliss in my little house. I got a few things organised, my mate came round for a bit, I had a nap in my own bed, watched a bit of telly. Nothing spectacular but it felt amazing to be back in my own home and away from the hospital for a while. I'm hoping I'll be able to do the same tomorrow and have my Daughter round.

31 days in.

The Doctors have just done their rounds and I've had some good news. My blood numbers are good and platelets and white cell counts are slowly creeping up. The best thing about this - it's my bone marrow that's doing it now. My body is fighting back. 

Everything had started getting to me a bit by the 5th of February. It seemed like every time I tried to get some rest, someone came in. Transfusions, antibiotics, swabbing me, blood tests, checking blood pressure, weighing me, checking my temperature. I even started to get annoyed with the cleaner, who's a lovely bloke! My Daughter had been ill, so she'd not been able to visit. I felt like I'd barely seen her and morale was pretty low.

I had a bit of a boost though when a good friend of mine told me about the 22 km trail race he is running. He wants to use the event to raise money for me to do something with my Daughter, when the treatment is over. What an incredible gesture. I'll definitely be going to cheer him on. And to pay it forward, I want to do some of my own fundraising for Cancer Research and REORG. Maybe not a 22 km trail race but we'll see!

On the 6th I felt the best I'd felt for a while. My throat didn't feel as sore and I was able to drink plenty. The Doctors continued to be please with my progress.

I had another temperature spike overnight into the 7th (can't seem to get on top of these) which meant more fluids, blood tests, antibiotics, etc. Sleep was becoming a rare commodity.

I managed to get outside for the first time in 20 days. Just had a stroll round the gardens with My Mum. It felt amazing to be outside and away from these same 4 walls.

By the 8th of February I'd started to swallow tablets again, including my old friend ATRA. This means less intravenous drips.

I had an amazing visit from my Daughter. She sat on the bed colouring in with her little Covid mask on. We played with my bed and made it go as high as it would go. It's not Alton Towers but she was having fun. I may have even had a sneaky cuddle. I have to be really careful, but it was worth the risk.

Doctors came round and it was more of the same: "keep doing what you're doing."

I'd become so used to being connected to something and dragging it round with me, at one point I was wheeling my drip round and I wasn't even hooked up to it!  I've hallucinated at times and had conversations with people who aren't in the room. It's mad what lack of sleep (and a fuck tonne of drugs) can do to you.

I've been keeping up with the cycling, about 25 minutes a day, eating gradually more solid foods and trying to keep my brain occupied. Things seem to be heading in the right direction.  

Looking ahead

I feel the best I have felt for a while and really believe I'm turning the corner now. While round 2 of Chemotherapy looms ominously ahead, it's important to enjoy this window of feeling better. It's now 27 days since I was admitted.

On the 2nd of February my Partner visited and I was so exhausted, I fell asleep while she was talking to me. Thankfully, she was still there when I woke up! I went through a spell when I was having about 2 hours sleep a day, so that's my excuse.

I slept really well going in to the 3rd of February. As I got up in the morning I felt a bit unsteady on my feet. I didn't think anything of it and carried on into the shower. The next thing I knew Bam! I'd hit the deck, managing to bang my head on the wall on the way down.

Thankfully, the subsequent CT scan was all clear but I now have a grazed face to add to my collection of ailments.

When the Doctors saw me that day they explained I was experiencing ATRA syndrome. This can cause high temperatures and fluid retention, among other things. They decided to hold back on the ATRA tablets for a while.

My Cousin visited me that evening a brought me some supplies. He's also brought a card from Clowne Roads Runners, wishing me well. I'm determined to get that red and white vest back on some day.

This photo is from the Elmton Chase. It's a 5 mile trail run and it happened to be 27c on the day. The beer after went down a treat. Ironically, I'm now on the Elmton Ward trying to outrun Cyril!

I was meant to be running the Bolsover 10km this weekend. It seems unlikely.

That evening I got a message from one of my MMA training buddies. Attached to it was a message of support from Brian Deane! I couldn't believe it. I idolised "Deano" growing up and here he was telling me to stay strong and keep fighting. Blew me away.

Progress continued to be made on the 4th of February. I had a heart scan with and other tests.

I had a reasonable night's sleep going into the 5th. Thankfully, they'd administered the drug that helps with fluid retention (and makes you pee loads) during the day. Good job as apparently I've been carrying 10kg of water weight!

I've been moving about a bit more and got one those Desk Cycles from the physio. I've got it positioned just right, by the window so I can people watch. Managed 25 minutes.

I then had a surprise visit from some more martial artists. They brought me some supplies. I told them the whole story and then we chatted about normal stuff and had a laugh.

I take my Daughter to the same place I train and I know she'll be missed at Little Ninjas.

Turning the corner

I've come a long way these past few days. I'm drinking again, I can take my chemo tablets and I'm eating ice cream. On the downside, fluid retention has caused me to develop some massive cankles. Honestly, my feet and legs are that swollen , they wouldn't look out of place on my 600lb life.

The 31st was a rough night as my heart rate and temperature spiked and I had to have a sepsis screen. The on call Dr was there and had no idea about my background, so I had to explain my whole story up to that point. I should have let her read this!

Part of the sepsis screening test is to take blood through a canular. I'm sure there's a reason, but they've insisted on using the right side of my body. It's no exaggeration to say this has been attempted approximately 50 times and only once successfully. My veins started playing hide and seek once the treatment started but my pleas fell on deaf ears.

I was also getting concerned they would want me to take my chemo tablets again. I did not feel capable.

I asked to speak to the Dr before attempting to take the tablets. I explained everything about the sepsis screen and the multiple failed attempts to get blood. I just felt the Haematology consultants listened to all my concerns and took them on board, whereas certain others had no interest in my opinions. The Dr assured me everyone would treat the right side of my body as a no go area, going forward. If something's causing you extra discomfort and you're not happy about it. Challenge it. Speak up!

The Dr also encouraged me to take my chemo tablets (there's 5 by the way). I somehow managed to force them down. I coughed the last one back up, caught it, put it back in again and swallowed it hard saying "get down you bastard," as I did so. It was not a pleasant experience.

I'd started drinking Fortisips at this point. These are small, high calorie milkshakes. They aren't the best but at least I'm getting some calories in my body.

On the 1st of February I was settling into a good routine with the Fortisips and I was managing the chemo tablets. This has been helped by a 3 times a day mouthwash routine where I rinse with 5 different mouth washes. It seems to help with the pain in my mouth and throat. That and the morphine!

I've recently been able to manage ice cream and yoghurt. I'd pre-ordered some ice cream for my tea. My partner came to visit and, through sheer exhaustion, I was nodding off in front of her. Then I had my ice cream, got some kind of sugar rush and was up dancing about! Weird.

I slept well that night, as I didn't need as many treatments as usual. I've had a lovely visit from my Daughter in her Snow White outfit. Also, I now have a buzz cut, as I couldn't be bothered with it coming out in clumps. Oh and I've managed ten minutes on the exercise bike today to try and help shift these cankles.

Bye for now!