Pre 3rd round of Chemo and Transplant - August 7 to 27th

This is the last post, before the big stuff. For those who have been reading and following my story you'll know that the first choice transplant match seemingly disappeared off the map, so we're using number 2. I mistakenly stated it was a German man, the individual is actually a Polish woman on the German registry. She is a 10/10 match just like the German man was but unlike him is actually the same blood group as me as well, which is good, in which case I'm not 100% sure why she wasn't the first choice donor originally. I'd imagine that it's due to male donors being generally preferred, the science goes over my head but this is apparently related to the size of the donor, with men generally being bigger, as well as whether the female donor has ever been pregnant as this has a big impact on their ability to be a bone marrow stem cells donor. Apologies if you are a Biology expert with your head in your hands reading my poor explanation (Sorry Mrs Matkins!) . This transplant is scheduled in for September 7/8th, prior to that though I will be having my 3rd and most intense round of chemo to get me completely ready for the transplant. As a result, most of this post is about continuing my pre-transplant tests and the consent meeting, which is a very cheerful meeting about your odds and percentages of success and survival, as well as lots of details about possible side affects.

Not a fan of that nozzle.

Monday 9th began with a Lung Function Test. All these pre transplant tests are to make sure that since my chemo first began back in May, that my major organs haven't deteriorated or been too affected by the treatment I've been undergoing. Even though the Chemo has been about emptying out my bone marrow, it still can affect the rest of your body, hence the obvious visual of this being all the hair you lose and the team looking after me need to know if I'm basically still up to the challenge etc. Anyone who knows me, or has seen pics of me in previous posts knows that I was a hairy fellow, apart from my head, which is just super. You could probably fashion a rope from my chest hair alone prior to all this happening, but as I write this my chest is completely hair free, I didn't even know I had a belly button it's been so long since I'd seen it. The Lung Function Test involved entering into some Soviet looking phone box and having a clamp put on my nose to stop me breathing through my nose and then having a plastic nozzle stuck into my mouth, kinky, I would then have to follow the instructions of the doctor (without laughing) of when to breathe and how to breathe etc, surprisingly more complicated than you'd think. He would go through the instructions something like "three short breaths, big long breath, breath out sharply followed by a quick intake" etc, I would then stare at him blankly as I had already forgotten it all, to which he just responded he'd take me through it. So I would sit there breathing out into the tube while he's sat on the other side of the glass shouting "ALL THE WAAAAYYYYY, now just HOOOOOOLD IT!!!! BREAAAAAAATHE! NOW NOW NOW NOW!" By the time I had came out of there I was exhausted.

After this I was back at the Haemotology Out patients (HOP) for the results of my earlier blood test. My red blood cells (haemoglobin) had dropped from last week into roughly the mid 70s, half of what a normal person has, or a normie as I call them now. As a result I was given a 2 hour bag of blood, delicious as always, once this was done I was off to have an ECHO test for the heart. The ECHO involved having ultrasound jelly put on my chest and having to lay facing the doctor as they scanned my heart, I was getting strong Jack and Rose from the Titanic vibes. At the end as I was asking how it was looking, he responded with "borderline" which I won't lie, doesn't actually sound positive. When he saw my somewhat concerned look, he expanded on this and said how it was only borderline changes from prior tests, which shows that the chemo has barely impacted my heart, which is great. Should have probably led with that rather than saying it was borderline. Post the ECHO test I was done for the day, unfortunately I was back on the GCSF injections as my blood results had shown my neutrophils had dropped to 0.66, but thankfully just twice a week, Monday and Thursday.

On Wednesday 10th I was back in for a GFR test, this is a kidney test which lasts the whole day, but isn't too intrusive. I had a quick blood test first and then headed off to the test location. Following the in-hospital signposting my mum and I went down a couple of flights of stairs and found our selves in what felt like a basement for storage. Random prams and empty beds in the corridors and noone around, felt like the opening scene to the Walking Dead. Eventually we found ourselves in the correct department and waited a short while for my name to be called out. As always my mum remained in the waiting room and I followed the nurse into a room for the test. The nurse brought out a daunting looking lead box and opened it up, it contained a small container of liquid, she then attached this to a needle and injected it into the vein on the other side of your elbow. I had to hold my arms out for a couple of minutes after which the nurse used a gamma ray over my arms to see if the liquid was circulating my body. The GFR test is basically a small amount of radioactive liquid input into your circulation in order to measure how well your kidneys are performing. I would then need to have a blood test taken 3 times over the next 4 hours at specific times at HOP and then bring all the vials back to this lab to be analysed. After all this I was back home.

I was back in early the following day for a bag of platelets prior to my 8th bone marrow biopsy. The fun never stops. Because biopsies as I'm sure you know by now having read about them so many times, are intrusive and cause some bleeding, having an appropiate platelet count is essential. Otherwise it'll be too messy for the doctor performing the procedure. While I was having my platelets and waiting for my procedure, I could hear from the other side of the ward shouting, moaning and groaning. After 20 minutes this stopped and a nurse came over and told me the doctor had just finished performing a bone marrow biopsy on another patient, always a good start. I went into a little side room and said hello to the doctor and her assistant for the procedure. Throughout the procedure we chatted and joked around, was honestly the easiest one I've had. Absolutely minimal pain or issue, or maybe I'm just used to it by now. Or more likely, that I'm just really tough and well hard. After the procedure the doctor allowed me to take some photos of the samples taken from, so marrow juices that had been sucked out of me and put between some slides, as well as the bone shard. Although apparently, shard, is not the scientific term, but sounds a lot better than however they described it.

The results of the biopsy

The juicer as I call it, gets the marrow out.

This weapon is for the bone shard (see big pot above)

After taking some photos and discussing the procedure. I mentioned how I would be having my consent appointment the following Thursday. The doctor and her assistant wished me the best of luck with it and told me to ready myself for quite a challenging conversation. After all this I was done for the day, apart from the GCSF injection later that evening.

Over the weekend I sat outside a local pub with some mates and went for a lunch with my family. I still have to be extremely careful and can't sit inside anywhere, go on public transport or see anyone unless they have taken COVID tests to ensure they're not positive, as well as anyone with a cough or things like that. I am able to sit outside places again and remain distanced, just a shame the weather this year has been so atrocious.

Photo courtesy of Ana

On Monday 16th I was at hospital for a blood test but didn't need any transfusions. It was also decided to take me off GCSF injections again which I'm pleased about. Later that day I went to a local to see my mate Mardon. On Wednesday my family, Ana and I visited Whitsable as my parents are keen for me to see the sea before I get readmitted, which is a bit weird as it's not like I'm a sailor or haven't seen the sea before. But anyway.

Thursday was the day of the consent appointment, where I would also find out more about the transplant and my test results. I was a bit nervous going in, I had it in my head that the tests would have revealed something additional, some new problem. In the meeting was myself, my mum, Emma the Clinical transplant specialist nurse whom has been fantastic with her care of me and updates, and a doctor whose job it was that day to give me the good and bad news. First of all it was discussed how my heart results and kidney tests had been good emphasising that there was basically zero changes in those organs which is great news. The lungs on the other hand had had some minor changes. The respiratory team had apparently said they were happy with the results and any change was very minor, however the changes there had been has affected my odds somewhat. As a result of all this I was told I have a 20% chance of dying within the next 2 years, apparently joking that it could be worse also isn't particularly funny, but you live and learn. I also found out that each time I've gone in for Chemo treatment there's been a 5% chance of me dying, which noone had told me. Due to my fitness (ahhhh yeaaaah) and previous tests prior to all this was the reason I was given a very intense bout of the FLAG-IDA and FLAG chemo treatment. And, due to the current results being pretty good, the chemo I would be undergoing prior to the transplant, so starting September 1st would be the most intense so far (I can't remember the name of it, but in the next post I do, I'll put it in), this is good news as it's believed I can cope with it all, however the odds on not surviving that increases from 5% to roughly 10%. If that wasn't all cheerful enough, the doctor had to go through all the possible and expected side affects I would be suffering as a result of the upcoming chemo and the transplant. I'm not going to the spoil the surprise for you, but it sounded like a barrel of laughs and I'm sure will make some good content to read, something for you to look forward to!

Friday and the weekend was spent seeing and catching up with some mates. From Sunday 21st onwards I was put back to isolating so I can't see anyone until I'm admitted in as a patient on Tuesday August 31st.

The week commencing August 22nd hasn't been particularly busy. Blood tests on Monday which were fine. I spent the rest of the week chilling at home and not really doing much. I have noticed over the past few weeks that on top of the hairless chest now, I have also begun losing my eyebrows and eyelashes, my only redeeming features, I'm sure they will be back in time ladies don't worry. At around 5pm in the evening on Thursday, I received a call from Emma my transplant nurse explaining that there had been unfortunately a last minute change with my transplant. The donor is scheduled in to donate on September 7th, with myself starting the chemo on September 1st and then receiving the transplant on the 8th. Due to covid risks the Anthony Nolan charity has advised to change this. What's going to happen now is that the donor will still donate on the 7th and it will be immediately frozen for me, then I will start the chemo and will then receive the transplant around the 12th. This is because if I start the chemo before she has made the donation, and she gets COVID or something before her donation, I then wouldn't be able to receive the transplant and would have gone through a seriously intense round of chemo without the transplant at the end of it which would have been a very bad outcome. Obviously this is disappointing as I want to get started the sooner the better, but it makes sense to be extra cautious. While at hospital on Friday (27th) Emma and Doctor Austen were able to give more information and reassurances behind the freezing of the transplant first. It looks like I will be being admitted on the 7/8th, and once it has been confirmed that the donor has donated, I will then begin the Chemo while the bone marrow stem cells are frozen, and once that Chemo is finished, the transplant will begin. September promises to be a big and heavy month.

Finally as always, I want to thank everyone who has been in touch and everyone's support. All links for support are here https://linktr.ee/AdamRiley? , including the website I've been working on www.theadamriley.com, should be better than Google Blogger, can also subscribe so you get a notification when I post an update. We're living in the future. As well as this, my good mates John and Kay (whom also key members of the 6aside team) are running The Tough Mudder this weekend in aid of Anthony Nolan, you can donate to them via one of the Linktree links or direct through here https://www.justgiving.com/team/MKDONGS

Have a great bank holiday weekend everyone!