2nd Round of Chemo - July 3rd to 16th

Like everyone, Saturday was spent preparing for and then watching the Euro2020 Quarter Finals between England and Ukraine, in which we ran riot and battered them 4-0. Feels like a lifetime ago now.

By Monday I was back in outpatients at hospital for blood tests and to have my hickman line dressing changed. This is easy enough, just getting the big sticker off without ripping my remaining chest hairs out by using the little alcohol squirter pouch, the lifesaver I've mentioned in previous posts. After that they use a very strong alcohol stick to press against the insertion points, which can sting quite bad. I'm pretty sure its stronger than own brand vodka, imagine the Lidl one being poured into a cut.

Finally on Wednesday the 7th after a lot of back and forth with the bed managers, I was admitted back into King's College Hospital on Waddington ward (where I was initially admitted for the first round back in May) for my 2nd round of Chemotherapy. Unlike May where I ended up being in hospital for 35 nights, I was told I should be in for between a week and two weeks. The reason being that the 2nd round of chemotherapy is less intensive than the first, this time I was having FLAG chemo, while last time was FLAG-IDA (The IDA being the red chemo liquid that had to be manually pushed into me). On top of a slightly less intense chemo burst is the fact that this time I was entering hospital in a much better way. Back in May I entered already in the full throes of cancer, massive gums enveloping my teeth, and horrendous chest pains where the cancer cells were all across my bones. As I was in remission this time around, I was entering with blood counts and everything else looking like a normal person, I felt healthy and was in a good place. It's peculiar as I'm going into hospital with the goal of coming out worse, as the treatment will destroy all my good numbers and bring me down to dangerous levels immunity etc, but this is the way the treatment works. I tried to spend most of the evening not being too gutted about having tickets to the Semi Final between England and Denmark which I obviously wasn't attending. Before going to bed in hospital I was injected in my stomach with the GCSF, with the goal of bringing out any hiding cancer cells into my system before my chemo starts the following day. I was also injected in my stomach with a serum against blood clotting, as my platelets are normal levels around 170, rather than below 50, I need blood thinners to make sure that I don't clot up during my time in.

Thursday rolled around and I begun my 2nd round of chemo treatment and the tonnes of tablets that come with it. Most of my time in hospital is taken up with reading, listening to music and just waiting around while transfusions run their course, not exciting stuff, so you have to keep occupied. I continued getting the GCSF and clotting injections straight to the stomach during the 5 day chemo treatment. Because it was my first day of the 2nd round, there were some delays to getting everything ready, so I ended up not finishing my chemo and the antibiotics that go with it until 3am of Friday morning. You initially get a 30 minute chemo bag, then there is a 4 hour wait before you get a 4 hour bag of chemo, and then if it is deemed you need it, an hour or so of anti-biotics. So it was a long and exhausting day. While waiting for the 4 hour bag to start, I had a couple of doctors come around and see how I was doing, they discussed how NHS England has very recently started a new process for cancer patients. An additional way of researching cancer and similar afflictions. Basically they are creating a huge library of research, requiring skin biopsies to see if there is anything in my genes/DNA to outline why I have the illness, if its genetic and tonnes of other research purposes. I volunteered to go ahead with it as it's not compulsory, and any way I can help I will always try to do. They confirmed it's unlikely I will get much feedback as it's not believed mine is genetic, it's just the usual Adam luck unfortunately.

Beginning of round 2

On Friday 9th I woke up with a bit of a high temperature, between 38 and 38.8. Normal temperatures are within the 36 mark, and 37 to 37.9 are deemed high end of normal. Thankfully this wasn't as bad as my 40C temps of the first round, but was still disappointing to get as it meant I needed additional blood cultures to be taken to make sure there are no infections, it also meant I needed to have heart scans to ensure there were no issues there. So later that afternoon, after the 30 minute bag of chemo I had some x-rays which have all thankfully came back showing no issues. I also then had my doctors come back to do the skin biopsy mentioned from the previous day. Instead of doing it on my thigh like the one I had in my first round, this came out of the fleshy part of my arm. As it's a simple (ish) process, it was requested that a doctor who had never done it before would be the one performing it while being overseen by someone more familiar with it. No issue for me so I agreed, someone has to be first as otherwise people will never learn how. Local anaesthetic is applied to the part of my arm that is required and then a pen like tool is pushed in with a sharp blade, it needs to have some force behind it to break through the skin and then swiveled so that it cuts a nice small chunk out of me for the sample. The skin didn't come out with the blade, so some little prongs/tweezer things were applied to pull the sample out that was hanging there. The docs seemed pleased with the little sample and will let me know if anything comes from it, could be years of looking for patterns between that sample and thousands of other people's but you never know. After that I had the rest of the chemo, this time finishing around 1am rather than 3am. It's not possible to move everything forward by several hours, has to be 1 or 2 a day.

Post skin biopsy

Over the weekend I continued to have temperatures but nothing going over 38.6, so I was still on the low side at least which was good. The main event on Sunday 11th being the European Championships final, and most of that day was spent on social media watching the build up to the biggest England game of the last 55 years. The team and all the players did the country proud, despite the sad conclusion. The future is bright for the future of football in our country.

Prior to the disappointment of the loss

The sis and the squad pre-final

Monday 12th was the final day of my 5 day course of chemo, and thankfully the finally day of the GCSF injections too. The blood thinner injection would continue until my platelets were below 50, which wouldn't happen until Thursday. I was told on Monday that as long as I stopped having temperatures, I should be good to be discharged this week. Tuesday and Wednesday were uneventful enough, continuing with the blood thinning stomach injections. By Thursday my platelets had dropped into their 40s, it had taken just a week to go from 170 odd down to 40 something, as such no more stomach injections, which is good. My neutrophils had also dropped down to 0.6 or so, as a result I was getting closer and closer to being neutropenic. Effectively meaning that I will be susceptible to any and all infections. 

On Friday 16th I was told I would be being discharged! I just required a bag of platelets transfusion as I was down to 26, and need something to tick me over until Monday where I would be back in the Haemotology outpatients for checks. I would be in outpatients 3 times a week until I'm readmitted for my 3rd and final round of chemo and, hopefully, my transplant! During my 1st round I stayed in hospital during all these phases so I could recover from the inevitable infections etc, but as I currently was infection free, it's been deemed that I could go home as getting infections at home are just as likely as hospital. I'm under strict advice that if my temperature hits 38 or above I am to be immediately taken into hospital no matter the time. Unlike my last discharge I won't be able to see anyone, I need to treat the next 3 weeks as though I am still going through treatment. After 3 weeks I will have a bone marrow biopsy again to see how the chemo worked, and then I should be good to see people while I wait for the big and hopefully final round 3; Chemo and transplant. I feel as though I am halfway through all the treatment, there is still plenty that can go wrong, but I'm feeling confident at the moment. Once I get the transplant, I will need to hit the magic 100 day mark of having no issues with the new immune system, which is setting me up for a big (but still careful) Christmas. I'm hoping by then my facial hair will have sorted itself out, I've noticed it recently growing back a bit, but incredibly blonde, even white, hopefully the 2nd round of chemo I've just had will make it drop out again and it'll come back darker. 

Platelets and a dirty blonde tashe.

On top of this, it turns out I only had a day break from the GCSF injections, and that while at home I would be still needing to take it. When my parents arrived to pick me up and take me home for discharge, they spoke to my mum through the process, get a fatty bit of my stomach, this will be difficult as I'm absolutely shredded, and then inject me, each evening. I have to make sure I don't have any arguments during the day with my mum as otherwise she might jab me hard. It's good to be home again, and to have had such a short stint in comparison to the first one. I hope that the side affects aren't too bad and that they don't end up getting me in hospital again. Next step; 3rd round and transplant!

I continue to be massively thankful to everyone who has been in touch, it really helps to get me through everything. I hope everyone enjoys the (apparently) coming sunny weather and has a great summer. The next post will likely be in a fortnight or 3 weeks, as I'm hoping the next few weeks will be uneventful. Please do continue to join the bone marrow registers as they are lifesaving, and if you can donate blood, plasma etc you should definitely do it as it goes a long way. All links for everything are here; https://linktr.ee/AdamRiley?

Finally a massive congratulations to the 6aside striker and all round great guy Enrique who not only has been donating blood, but also got married on Tuesday! Congrats mate!

 

CONGRATS!