Little by little.

I've come to the realisation lately that not many people are lucky enough to look death in the face, say "not today" and start again with a new found appreciation for life. 

I ran two miles this morning with my PICC line bandaged to my arm so it wouldn't flap around in the wind. It was hard. My legs ached and I was out of breath, but the desire to keep going a little bit further was stronger than the desire to stop and I felt great after.

On the 25th of March, the day before my 43rd Birthday, I had visits from my Daughter, her Mum, my Partner and her Daughter. I felt very loved as I opened some cards and gifts a day early. My Mum visited the next morning. 

I went into Sheffield on my Birthday and suffered heavy defeats at axe throwing and shufl board. My partner gave no quarter. It was Viking v Saxon and she was out out to avenge the loss at Tenpin Prison Putt, which she still believes to be unjust. In my defence, the guy at Boom Battle Bar said it was the highest score he'd ever seen and no one had ever got so many bulls eyes! I never stood a chance.

We had incredible food at Cambridge Street Collective and a few drinks before heading home on the train. A chilled out evening followed. I'm still in the midst of the novelty of normality and it feels great.

On the 27th I went to Holmbrook Park and ran 1.25 miles round the lake. It was a glorious, sunny day. In the afternoon, I hired a van to help my Mum move into her new flat. I was knackered by the time we were done. 

As I pulled into the drive and stopped for a chat with my neighbour, I had a conversation that would haunt me in the early hours of the following day. She asked me how I was and we got talking about cancer and chemotherapy. She said she'd nursed her husband through it and he died at 55. When we delved into this a bit more, he'd had testicular cancer, like me. He'd recovered, like me. He got cancer again, like me.

In the cold light of day, I knew these thoughts were unproductive. Everyone is different. Everyone's cancer journey is different. Advances have been made. Just because there are similarities doesn't mean to say I won't live a long life. I may be stronger, I may be luckier.

"When we are tired we are attacked by ideas we conquered long ago."

 - Nietzsche

At times like those it's also useful to remind yourself what you are grateful for. In my case, there is so much.

I was at the hospital again on the 28th for blood tests and my results were good, which explains why I've been feeling relatively "normal" lately. I've got another bone marrow biopsy approaching and Round 3 of chemo will follow soon after. I'm not as apprehensive as I was before and welcome another milestone in my treatment and recovery. At this rate, I'll be done with treatment in time to enjoy the summer.

My Daughter's swimming lesson was cancelled so we went to the pub instead! Girl after my own heart. 

The next day we went to visit my Partner and her Daughter. We'd missed out on Pancake Day while I was in the hospital so made up for lost time. The kids played together in the park and we took the dogs for a walk. Simple pleasures.  

So little by little, things are getting back to normal. But I have the opportunity to build a new normal where I don't take things for granted as much.

"You have to give it all in all your life and all the time I just asked myself why, you really here?"

- Noel Gallagher

Freedom

I ran today. Just a mile. Not quickly. But it was the first time in 76 days and it felt good. 

The sun was out and I had the distinct feeling that a corner had been turned. I've started to believe I can be as fit, maybe even fitter than I was before treatment. 

I've been writing less frequently as time has gone on and I've started to feel healthier, partly because there's been less to say about Cyril and partly because I've been busier with normality.

My blood test results have been good. They were expecting my levels to drop and I was told on the 18th of March that it was likely I'd need a transfusion at some point. This simply hasn't happened this time around. I like to think my body has become accustomed to the chemotherapy and the medication and it's fighting back.

As you start to feel more "normal" you almost forget you've got a serious illness. I'll suddenly remember that I'm still in the middle of this battle and I have to remind myself to slow down sometimes. I read a story about a young lad who died from APL when it went undetected for too long and it's a sobering reminder. 

When I went to the hospital back in January I had the typically British attitude that I was probably inconveniencing the busy staff with my symptoms and being a hypochondriac. My advice would be to get checked out if something doesn't feel right. You're not bothering anyone. Early treatment can literally be lifesaving. 

My relatively healthy results have meant a bit more freedom lately. I've been making the most of the weather and had a couple of beer garden visits. I went out for something to eat with my partner, which was another first for a long time. I've been out for a family meal, caught up with friends, spent time with my Daughter and not had to go everywhere wearing a Covid mask. 

I'll be back in again soon for Round 3 of chemo, there'll be more blood tests and biopsies. As a direct result of having APL I lost a career opportunity, I lost time with my loved ones and it cost me my health and fitness. But I gained a new found appreciation of the simple pleasures in life. 

I prefer to see APL as a positive experience and think of what it has given me, rather than what it took away. As with all struggles in life, they become part of who you are and can make you a stronger person. Honestly, right now I feel bullet proof. 

 

Gratitude.

I'm now approaching 10 weeks since I was first admitted to hospital. I've completed two rounds of chemotherapy with two more to go and I'm looking forward to the future, while reflecting on what I've been through so far. I'm extremely grateful for what I have right now and it's not lost on me that things could be a lot worse. 

You took away from me Cyril, but you may have given me a lot more.

In terms of my treatment, the last 5 days or so have been fairly uneventful. Round 2 of chemo has been much kinder to me. The main side effect I had this time was fatigue which has been a blessed relief after Round 1. My blood test results have been good and I've so far avoided the significant drops that compromise my immune system so much. This has give me a little bit more freedom, within reason.

I've felt pretty upbeat this week but it did occur to me recently that, even with the most positive outcome, it's likely my life expectancy has been reduced and I'll be at risk of battling cancer for a third time. But there's no point dwelling on that. Better to use it as fuel to live life and cherish what I've already got. 

After spending most of the day in the hospital with tests and examinations on Friday the 14th, I went to my Daughter's swimming lesson. She continues to make excellent progress. Her little friend whispered to her: "What's happened to your Dad's hair?" She turned to him, shrugged her shoulders and said: "He shaved it off." They both laughed. She remains pretty much unfazed.

On Saturday I helped my Mum with some house move stuff. I then enjoyed my first beer in 65 days while England destroyed Wales in the 6 Nations. Watching any kind of sport reminds me I've not been able to do as much, but hopefully I won't have lost too much ground by the time I start training properly again. I've been doing bits but I can't wait to get stuck into it when the treatment is done.

On Sunday the 16th I hosted Sunday dinner for me, my Daughter, her partner and her Daughter. It went really well, nobody got food poisoning and the kids had a great time playing together. I did have a near death experience on the local playground though, when a seesaw was prematurely released and I was almost launched into orbit. We raced down the street on the way home and, although I lost and was out of breath, it was a reminder that I'd been dreaming of being able to do that when Cyril had been standing in front of my as an intimidating and formidable opponent. He's now on his knees. 

"The longest and shortest life amount to the same, for the present moment lasts the same for all of us and is all anyone possesses. No one cane lose either the past or the future, for how can someone be deprived of what's not theirs?"

- Marcus Aurelius, Meditations

Parole hearing.

I've been back at home for five days and, so far, the side effects of Round 2 of Chemo are nowhere near as bad as Round 1.

I was back at hospital yesterday and my blood results were good. I'm not neutropenic but I have to be aware this could still come. 

I was up for parole on Friday the 7th of March but it all hinged on whether my blood had been behaving. Thankfully, it hadn't shanked anyone in the yard, so I was informed I'd be going home again later that day. Translation: my white blood cells, plasma and platelets all looked healthy.

I'd slept fairly well but was getting concerned about the ulcers coming back. Symptoms had peaked about a week after chemotherapy last time and I was still waiting for the final dose of Round 2. I was worried it might stop me coming home, or cause me to come back in. While I had my Idarubacin the nurse explained that it targets fast moving cells. Unfortunately, it can't distinguish between other fast moving cells like your hair and your digestive system. I imagine a day will come when it can. For now, I just have to put up with being bald and having a gammy tongue.

So I was sent home with a load of medication, feeling tired and groggy. My partner collected me and we had a massive takeaway and watched the latest Beverley Hills Cop film. It was easy for me to imagine how Axel Foley must be feeling these days (Eddie Murphy is now 63). Early night and lots of sleep ensued.

The next day we went for a walk at Cresswell Crags. The weather was stunning for March and there were lots of people out. I needed a lazy afternoon though, so we watched three films back to back. I was then treated to a spaghetti carbonara - Swedish style - and it was one of the best things I've eaten in a long time.

On Sunday the 9th I had a visit from my Daughter which was sadly cut short as I was feeling knackered. My mate visited me in the evening and brought me a photo collage with some of the highlights of our time working together.  Great memories of the good times and how much we used to have a laugh at work! I survived being cornered by a herd of cows with this person. That type of shit bonds you for life. You know who you are!

 Another early night - the side effects were not getting any worse but the chemo had given sloth like energy levels.

Three days after chemo and I was still feeling relatively good. I started to think I might get away with it a bit more this time. My partner came round and we had a walk before I cooked tea. I was starting to think how nice it would be to go in a pub, or anywhere busy with people! I've not done that since early January because of the infection risk but, all being well, I'll be done with treatment in time to catch a bit of beer garden season! 

I was back in for a blood test on the 11th. I left straight after, unaware that I was supposed to hang around to see the Doctor. Oops! I later received a phone call, asking where I was. Luckily, my blood results were all OK and I'll be able to catch up with the haematology team on Friday.

I had another visit from my Daughter, once she'd finished school. I had a lot more energy, so it was great. She read me a story (role reversal), we watched Sponge Bob, played Mario Kart and had lots of cuddles. Mario Kart was hilarious as she was following her character with every twist and turn of the track. 

I did a light workout after she'd gone. I was really starting to miss training properly: running, lifting weights, MMA, etc. I can't wait to finish treatment, get the PICC line out and start training again properly. I'm looking to the future now and thinking of ways I can help the people who have helped me. I'll be pestering you to sponsor me for Cancer Research and the Reorg Charity no doubt!

I watched PSG and Liverpool that evening, while having some banter with my mate who's a die hard Red. 

As I write this I'm starting to feel confident that I've faced the worst of my treatment and the tactic to attack the cancer aggressively at the beginning has really paid off. It fills me with optimism going forward and I'm actually feeling excited about the future again.

Hit him while he's down.

It feels like there is more to write when I'm back in hospital, probably because the Doctors are giving me daily updates.

Round 2 is well under way. I had the news today that, after Round One, I became Minimal Residual Disease (MRD) negative.  This means the cancer cells are not detectable on a molecular level. It's the best result I could have hoped for at this stage and shows the suffering was worth it.

Tuesday the 4th of March was my first full day back on the Ward. I was greeted by a charismatic Doctor whose first words to me were: "The King has returned." What a greeting! He then explained most of the risks with APL are at the beginning. Your platelets, plasma and white blood cells are on the floor and there is a very real risk of catastrophic bleeding, be that internally or externally. It makes me very glad I got to the hospital when I did and didn't continue to power through the symptoms, as I had been doing. That stage is behind me now.

He went on to say that my body was getting used to the ATRA medication and the dose of Idarubicin would be about 40% of what I'd had before. My blood counts would be starting a lot higher. This all amounted to (hopefully) less side effects. The best part - I might be able to go home again by Friday.

I had my first dose of chemo later that day. In my case, any after effects seem to be slightly delayed so I felt no different. I went for a walk round the grounds and did a gentle workout in my room. I felt on a bit of a downer afterwards. I'd started to get bored and wondered how the hell I'd managed 5 weeks of this!

I had a video call with my Daughter and immediately felt better. It was pancake day and she informed me she would be having 144 pancakes. I'm told she managed 2. 

I then watch PSV Eindhoven roll over and get their bellies thoroughly tickled by Arsenal. 7-1 at home. Ouch!

I slept well that night despite the necessary interruptions. Mum visited me on the 5th and I was starting to feel much more positive again. It would only be 4 or 5 days in hospital after all.

The Doctor came round in the afternoon. He introduced me to another word I'd never heard of. Neutropenic means your body has abnormally low neutrophils (the white blood cells that fight infection). This happens after chemotherapy and is the reason you have to be more careful for a couple of weeks after treatment, while your blood counts recover. Although I'd be in a neutropenic state by Friday, I would be trusted to go home. I'll obviously have to be sensible and will need to be able to get back to the hospital within an hour if I start feeling unwell. They call this 'Ambulatory' and it's a way of giving you all the positive benefits of being at home, rather than keeping you in hospital. 

By the 6th of March, I'd started to notice the sores were coming back under my tongue and inside my lip. It wasn't causing me too many problems but I mentioned it to the Doctor. Hopefully they'll be able to nip it in the bud. 

The Doctor explained the MRD negative result I've mentioned above. Bone marrow samples have to go to a lab in London where they have some kind of super microscope that can detect cancer cells with much higher accuracy. My latest sample showed no detectable cancer cells.

He explained there would be about 3-4 weeks until Round 3 of treatment when I'd need another hospital stay, similar to this one. There would be another 3-4 weeks after that until Round 4 when I'd only have to come in for a day or so. Effectively, rounds 3 and 4 will be kicking the fucker while he's down and I could be looking at my chemotherapy treatment being done and dusted by the middle of May. 

I'll have ongoing follow up appointments and bone marrow tests but I'll be able to properly focus on my recovery and getting back to full fitness!

I had a lovely visit from my Daughter. We went outside for a walk and she played on the outdoor gym equipment. We sat and had a cuddle in my room and did some colouring in together. It was tough when she had to leave though. She got upset and kept saying she wanted to stay and look after me. I explained that, because she'd looked after me so well, I'd be home soon.

Round 2

Well, I'm back in hospital and I have to admit I'm a bit anxious about the second round of chemotherapy. They are giving me Idarubicin again - the same drug that gave me brutal side effects last time. I'd got used to a bit of freedom and wasn't overjoyed at the idea of being an inpatient again.

That said, the dose will be around 40% of what I had last time. I'm also going into this round a lot stronger. Although I've lost 2 1/2 stone since I started treatment, my blood counts are much higher. It shouldn't be as bad this time round. And come what may, I'll handle it and put it behind me. It's another step towards ringing that bell and being cured. 

I received the news I'd be going back to hospital as an in-patient on Friday the 28th. I'd been enjoying the freedom of being at home and was feeling quite well. It burst my bubble a bit. I'd almost forgot I still needed to have treatment! I'd had the excellent news the cancer was in remission though and I felt I had a clear plan of what was coming next.

That afternoon I managed to get to my Daughter's swimming lesson. It was the first one I'd seen in a couple of months and she'd come a long way. It was great to see!

We had a drive out into the Peaks to watch the sun go down afterwards. It was a perfect start to what would be an incredible weekend.

We set off fairly early on the 1st of March and my partner drove us deep into the Peak District to walk one of the many routes she knows and I'd never heard of. It was absolutely stunning. The weather was perfect, sunny and just warm enough. The scenery was incredible. We walked 6 miles through the steep valley of Wolfscote Dale with her little dog, stopping briefly for a bite to eat. In the evening we had a takeaway (Doctors orders) and watched Vikings curled up on the sofa. Bliss.

On the 2nd of March I had a walk into town and picked up a couple of gifts for my Daughter. She wasn't too impressed that I had to go back into the hospital. We'd explained I needed more medicine and it wouldn't be for long. A couple of toys wouldn't do any harm in softening the blow. It was another unseasonably sunny day and I had a walk back through the park.

In the afternoon I met my Partner's parents over coffee and (a lot of) cake. This is a Swedish daily ritual called Fika which I am very much on board with. They were lovely and really easy to talk to. I have to say that because they might be reading 😉 We watched a film in the evening and had a massive takeaway (Doctors orders again). I'd recently come off morphine, so I'd been able to drive there and back. It was nice to get behind the wheel for the first time in a couple of months and remain strictly within the speed limit.

On the 3rd we had a viewing on a flat for my Mum which went well. My Daughter came round after school. I gave her the alien cuddly toy I'd bought her, before being informed it was actually an axolotl. She knows more than me already. We played Mario Kart for a bit before saying our goodbyes. Hopefully it will only be one or two hospital visits this time.

My Partner came round and we waited for the call from the hospital, binge watching Vikings again. I arrived back on the ward at around 8:30pm. It was nice to see I'd got my own room again.

So now it's time for round two. Bring it on Cyril.