PreTransplant Chemo - September 11th to October 1st

 It has been a while since my last post as I was stuck a bit in no-man's land from the news of the donor whom had cancelled. The cancellation caused a delay of several weeks, and while I do have the 3rd donor, that person needs to get ready and be booked in. It also wasn't certain if I would be able to receive the new donor as the delays could mean I've left remission and would need to have further rounds of chemo before the transplant chemo and transplant.

On Tuesday 14th September I had my 9th (I think) bone marrow biopsy. It wasn't the best one I'd had, it proved difficult to get through my bone to take a marrow sample. The first attempt had landed in an empty pocket meaning a second attempt was needed. This struggled to get through the bone and I could feel the needle sliding off each time. The marrow sample that was taken was quite thick and slow, but the doctors performing the procedure said this isn't a problem and that sometimes it's just like that. There was also some issues retrieving a bone fragment, the bit that was eventually taken was very small and not the best.

There wasn't much news until Friday 24th September. Until then I'd had my dressing for my Hickman line changed a couple of times and blood tests, but no transfusions or anything big. On Friday 24th I was told I was still in remission that my "blast cells" which I believe are the bad cells in me, are at around 3%. This is good news as the pre-transplant chemo can only start if the blasts are below 5%. The doctor informed me that my 3rd donor (3rd time's the charm) was still committed and ready to donate and that I would be getting re-admitted into hospital for the big round on Tuesday evening. I was greatly relieved by this as I was worried the delay caused by the donor's cancellation would cause me to have an additional round of FLAG chemotherapy and carry on setting me back further into the year.

I was back in hospital outpatients on Monday to have a quick COVID swab as is compulsory before being admitted in. Thankfully on Tuesday evening I was told it was negative and that I'd be coming in that night. I arrived into a shared bay on Elf and Libra ward, the same bed I was in back in June when I got discharged after having the first round of FLAG-IDA chemo. I'll likely be in this shared bay for a few nights before I get moved into a side room of my own when I start getting neutropenic (susceptible to infections basically). I'd arrived around 10:30pm, had a load more swabs including another COVID one before going to bed. Not the greatest night sleep as one of the other patients in the ward is a proper snorer, I mean a PROPER snorer.

Wednesday 29th September; I began what is hopefully the final round of chemotherapy. I signed some wavers and spoke with several doctors and confirmed I was ready. I was left in no uncertain terms that this round of chemotherapy, the conditioning chemo, is going to be very hard. This round of chemo will last several days, I'll then have a rest day and then, on 6th October, the transplant, or Day 0 as it is called. Exciting stuff. Wednesday 29th is Day -7, I received a 1 hour bag of Chemo Cyclophosamide which is a seriously strong chemo and simultaneously begun receiving 8 hour consecutive bags of something called Mesna. Mesna is to counter-act some of the worse affects of the Cyclophosamide chemo and will basically protect some of my internal organs a bit more, namely my bladder. It's a continuous flush of my systems in affect. As soon as one bag of Mesna finishes, another 8 hour bag is put on. I've been told to look out for blood in my urine, so that's fun. So far though, I'm pissing crystal clear, it's like the water at the Maldives. Not that I've been, but you get the picture. The bags are so big though that I'm having to go pee every hour on the hour, I also have to measure it out. I'm averaging around 500ml every hour. I hope you're not drinking as you read this. The Cyclo chemo (I can't be bothered to spell out that word every time) has already proved strong. I pretty quickly was feeling very strange in my head and nose, like I was hungover or disorientated. Which is slightly concerning as it's only just started.

Mesna alonside the clyclo chemo (in the bag)

During some of the transfusions on Wednesday I also spoke with a Research Nurse and a Doctor representing a new drug being tested. I was asked if I would take part in their double-blind clinical trial (meaning that neither the patient, nor the hospital staff will know if I'm on the placebo or new drug), which I agreed to. This is a anti-fungal infections drug which is expected to be better than the standard medication which I'll be on. I'm more than happy to help out in this way, seeing how much I take from the NHS, seems things like this is the least I can do. This will start on the day of my transplant. Exciting stuff.

Through the night I carried on receiving Mesna. Being woken for the bag to change and observations. This time I slept with earbuds, not making the same mistake as the previous night. When I was awoken for breakfast around 9ish, I felt incredibly groggy and confused, I thought I was going to collapse and be sick in the bathroom at one point. Throughout Thursday I continued receiving Mesna and saw a few more doctors as well as a physio whom gave me a list of exercises I can do in bed if I am able. Not those exercises, get your mind out the gutter. The doctors asked how I was coping so far and gave me more insight into what is ahead of me. Those insights weren't great, in no uncertain terms they expect things to get very rough, very quickly. They expect from Saturday onwards I'm going to be in a pretty bad way; sores, diarrhea (always a laugh), gastro tubes down my throat and potentially oxygen too. Got a lot to look forward to.

8 hours of the Mesna

Friday 1st October I was quite groggy in the morning. I'd had an abysmal night and was still awake by 3am, I just couldn't shut down and was sweating a lot. Later that morning I was taken for a lung function test, exactly the same procedure as last time, had to blow (wahey) on a nozzle while the doctor instructs you on how you should be breathing; short breaths, followed by a deep breath and then hold and then blow out as far as possible etc. The first few tests went well, but I failed the final one. I think it was an intelligence test which I just couldn't handle, I wasn't breathing out properly according to the results and was taking a small breath. I think the doctor was getting annoyed at me and couldn't understand what I was doing wrong. Neither can I to be fair, never realised how hard breathing was. When I was back at my bed I saw my transplant nurse and let her know that I had somehow messed up the breathing test but thankfully she wasn't too worried. I'd done fine in the one 6 weeks or so ago, and even if I'd completely screwed this one up. It's not going to change anything in regards to the transplant and chemo. At the bed I had a few more observations and an ECG test, this is where stickers are placed all over your chest to monitor your heart. The reason being is that I've had a very high heart rate the last few days. I haven't heard anything since, but seeing as no-one has been panicking in the last few hours, I assume it went alright.

During the day I continued to receive the Mesna. I have had 5 consecutive 8 hour bags, I write this having just been put onto my 6th consecutive bag, this one a 12 hour one. I won't be taken off of that till around 9am on Saturday, and that should be the last of the Mesna. In my course of pre-transplant chemo, the cyclo is for two days (Wednesday and Thursday) and for today until Monday I am on Busulphan chemo. It hasn't felt as strong as the Cyclo as that was noticable as soon as it was plugged in to me. I'm sure that will be famous last words. The 12 hour Mesnan bag will start at 9pm when the 8 hour bag finishes (it's never-ending) as well as a Potassium transfusion (as my potassium numbers were low. Should have had an Innocent smoothie and a banana) finishing. At midnight another bag of Busulphan chemo will be plugged in which will last an hour or so. My last night sleeping without being plugged into something was Tuesday night.

Tomorrow (Saturday October 2nd) onwards is when things will begin to get grim. I intend to do another post next weekend on the 9th, if nothing gets posted then you can safely assume that shit has hit the fan. I should also be moving ward potentially this weekend. I'm on a shared bay at Elf & Libra ward, but the closer I get to being neutropenic the more urgent and likely I'll be moved to my own classy room.

Fashion Guru in the visitor room

I hope everyone has a great weekend and thank you for your messages, it means a lot. Please do continue to join the Anthony Nolan register and donate blood, it's absolutely vital to so many people.

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