1st Round Done and Discharged - June 12 - 18th

Saturday June 12th was an alright day, my neutrophils (for those following, this is like your immune system. And whether I go home or  not basically depends on getting these up, it would prove the chemo has done its job really), registered at 0.13! The average person would likely have a count between 2.2 and 7.5 roughly. So mine are low, but they're now registering on counts. So this was good news, especially as I was expecting to maybe hit 0.10 by Monday. It showed that I was beginning to see growth, hopefully this would continue. I still ended the day with a temperature spike above 38C which was a bummer. But I think this evens out to a win still.

June 13th saw my neutrophils continue to rise, hitting 0.24. These are still low but the incline is now obvious, and I'm beginning to feel optimistic. My parents were allowed to visit, and for the first time in 30 odd days, the nursing team told me I was allowed to leave my room and even go outside for 15-30 minutes. This was an amazing change given that just last week I was having a pretty bad time. But as sod's law would have it, when coming back to the room after my brief excursion to see that life still existed outside my room, the lift I was in decided to break down. This caused mass panic, and by mass panic I mean the panic was limited to mainly my mum who was freaking out. Because we thought we could be in the lift for a long time as engineers were apparently on the way, I was made to sit on the floor, but somehow I managed to do this basic action wrong and caused my hand to swell up, I guess I put too much pressure on it. After 5 minutes or so, the lift suddenly started moving and took us to the highest level where we piled out before carefully descending the stairs to where we actually needed to be. The excitement didn't stop there though, after my parents had left, my swollen tonsils which were at their peak size had made me gag so much that it caused me vomit in my room, thankfully I got it in the sink. Despite all this, I still chalk the day down to a win.

The week of the 14th was a bit of an emotional rollercoaster, starting incredibly well. After 20 of the previous 21 days receiving the GCS-F chemo injection into my stomach trying to kick start my neutrophils, I didn't need it on the 14th. The doctors came into my room all very happy and spoke to myself and parents who were thankfully there to witness the good news, my neutrophils had hit 1.10. A massive increase, and an increase that meant my chemo "should" be working and that apparently I would be going home Wednesday/Thursday to recover a bit. It was a fantastic day and a day I couldn't quite believe had come around, it had felt very far away last week.

First breath of fresh air in more than 30 days!

I was feeling really optimistic on Tuesday the 15th, I was still having a lot of transfusions, but it felt like I was being prepped to go home. My neutrophils had dropped to 0.99 but this was expected as I was no longer on the injections. I went for another walk, this time just with Mum, as we were wandering back, two of my nurses ran past. I called out to them, and they rushed over saying that I needed to come back as I was to be moved yet again. This would be my 7th room change and to my 4th ward, this was and is incredibly frustrating as it's difficult to feel settled with so many changes and being moved around so much. You begin to know the staff (all of whom are exceptional), and then suddenly you're starting again, again. Where I was being moved to wasn't my own room again but instead a bay with several other people, to put it mildly I wasn't happy. I understand moves need to happen, but 7 times is overkill and this final move in particular when I was finally happy with where I was, was incredibly frustrating, but anyway this would hopefully be one night, two maximum.

My optimism was swiftly killed on Wednesday. Despite being on a bay I had actually slept quite well, although I'm sure ear sleeping plugs helped. I was still having a lot of transfusions, mainly potassium which takes 6-8 hours through cannulas, so even overnight I was all plugged in. At around 10am one of my doctors came in and told me that my biopsy was scheduled for around 12, which is great news, I can't go home until this is taken and then the results will be studied while I'm home. BUT that the microbiologist team (remember them?) had pushed back on me going home and were adamant that I had to finish my 14 day antibiotic course as IV infused rather than as tablets, so home was cancelled, and instead it would be Monday. I was gutted. Really gutted. Particularly as well that I had been moved to a bay where I didn't want to be and suddenly it looked like I was going to be there for several nights. Finally 12 rolled around and my doctor was back, she let me know that my neutrophils had gone back up to 1.06 which is good news that they can survive without the injections. We then began the bone marrow biopsy, in the bay only separated from the other patients by curtains. For those fantastic people that have joined the bone marrow registers and anthony nolan registers, I'm sure you're reading this with interest. If you do, fingers crossed, become a match for someone, over 90% of donations are made as if it were just a standard blood donation. But a small % have to have bone marrow biopsy depending on the status of the patient who needs to receive. This was my 6th bone marrow biopsy, and honestly, the best one I'd had, despite the fact that this time they also needed to take a shard of my bone to examine (this doesn't happen to donors don't worry). I lay on my side with my knees brought up towards my chest and then local anaesthetic is applied to a point in my hip that has been marked out as the target. Once this was applied and given time to properly kick in, my doctor then began with a large syringe to to push through into the bone to suck out a sample of the marrow within. The whole time during this we were just casually chatting about travel and work and other small talk. Once that sample was taken, the shard of bone needed taking. This again was fine, you can feel pressure being applied and then a sound between a click and a dull thud as the bone shard comes out. Once everything was removed, bandages were applied and I was all good. I write this on Friday night with my hip in a bit of dull ache, but that's it. There really is nothing to worry about on these procedures, obviously they vary at times depending on who is doing it, but ultimately they are fine. I let my doctor know that I would be requesting her for all future bone marrow biopsies. The rest of the day continued with a number of transfusions as usual, while I tried to calm myself down about being here till Monday.

HEY! PUT THAT BACK IN ME!

The rollercoaster continued on Thursday where a woman from pharmaceuticals came in and started discussing my antibiotics as tablet form. She continued and said that microbiologists had been over-ruled and that I was going home...today. I was shocked, and said I'll believe it when I step out the hospital as I didn't want to get my hopes up again. She laughed and said my team of doctors would be around soon to confirm, and then she ran off. A couple of hours and transfusions later, I saw my team of doctors, they all looked very happy and let me know the good news. When I told them pharmaceuticals had been around and told me recently, they were quite annoyed, saying that they had wanted to tell me the good news. I asked about the antibiotics course and the microbiologists, and my main consultant just laughed. He was keen to get me home and felt that it was time, and that it was needed too. They had had discussions with that team, and had been very strong in their view that these transfusions could now be tablet form instead, I was beyond pleased and immediately called my family to let them know to come around 6pm as hopefully I would be leaving. I got a load more transfusions and watched football across the day as well as having some heart scans. This was the ultrasound jelly on my chest and pleasingly there were and are absolutely no issues with my heart, which is always great to hear. Eventually I began packing and as it hit 5pm the nursing team started pushing me out the ward into the waiting room so that my part of the bay could be cleaned out and ready for the next patient. Once fully packed and moved out the bay my mum and sister helped me move my stuff out the hospital to my dad and the car parked outside. Weirdly the meal I'd been craving something chronic has been McDonald's despite not even liking the place. When I had said this to the dietrician she had believed I needed salty food and my brain was making those links. So the first meal out of hospital was a drive through McDonald's. 

Spending the night at home was surreal. It almost feels like the last 36 days hasn't happened. It's very strange and difficult to describe. It's been a tough time but just 24 hours out makes the experience feel a long time ago, particularly as I do normal things, visiting a local pub with my sister (docs confirmed I can have a couple of beers!), chilling out at home watching the football. It's great to be back but very strange. I will be back in hospital Monday and Thursday for transfusions and checks next week, hopefully will be decent news. It looks like round 2 will begin early July, and should be a shorter time in hospital I hope.

A much needed pint with the sister

I have a lot of strict dietry rules while I'm home, like no unpasteurised cheeses, so I should probably google what that means. No runny eggs, which are like the best eggs, can't have soldiers with a hard boiled egg it just doesn't work! But most importantly I can have a drink, in moderation, also something else I should google the definition of.

As always please continue to join Anthony Nolan if you haven't already, it really is vitally important and you can save a life. All you need to do to register is spit in a tube. Donating blood is always important and helps so many people from women in childbirth to people in car accidents and other traumas. All relevant links can be found here; https://linktr.ee/AdamRiley?