The last couple of weeks have been the best since I was diagnosed, earlier even to be honest. It has been good to be home with my family and girlfriend and to have a break from hospital. As it stands I am waiting to be readmitted for round 2 of chemo, this should be any day now, due to Davidson ward shutting while I was there (It's still shut and will be for another month potentially), it means the bed managers are very stretched, I'm at the top of the list to go in currently, but does rely on people being discharged.
For the first weekend I just relaxed at home and ate a lot of food. I've been told now is the time to let loose and eat as much cake and rubbish as possible to try and get my weight up. I left hospital at 8 stone 3 pounds, which is a massive 2 and a half stone drop to my initial weight. The cancer diet is effective and quick it seems. Writing this on July 2nd, I am roughly 8 stone 9/10 pounds, so I have put a fair bit back on in a fortnight.
I was back in hospital on Monday June 21st for blood tests, it was expected that I would be in for the whole day needing a lot of transfusions. But amazingly, my counts were all still increasing; neutrophils at 1.70, my red blood cells (haemoglobin) had increased from 91 to 95 and my platelets were mid 60s. As a result I was happily sent home early. Tuesday 22nd was spent at home watching the football and celebrating England's horrendously boring 1-0 win, but still a win is a win! Wednesday followed much the same pattern of Tuesday and I headed out in the evening to a local pub to sit outside and watch the France vs Portugal match with some friends from the 6aside team.
Thursday I was back in hospital for blood tests and a clinic appointment. Again no transfusions were needed, and my neutrophils remained around 1.50. The clinic appointment with my team outlined that I was UNOFFICIALLY in remission. Early results from my bone marrow biopsy just before I had been discharged had shown remission from the liquid pulled from my bone marrow. But the bone marrow shard was still awaiting results, and wouldn't come through until Monday. Still this was great news! But as with all good news, it had to be soured a little bit; along with finding out official results on Monday, I would also be having a Hickman line surgery. This would result in wires hanging out of my chest, it's necessary for my treatment as the transplant I would be having in several weeks (as long as a donor is found) would need to go via a Hickman line. Unlike having a PICC line insertion or even a bone marrow biopsy, a Hickman line is a proper operation and requires an operating theater.
Friday June 25th was spent relaxing at home apart from lunch at a local pub where a couple of friends had come down to South London to surprise me.
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| Surprise Lunch! |
The weekend was spent, you guessed it, watching more of Euro2020 (Euro2021?) and eating whatever I wanted trying to get my weight back up a bit.
Monday June 28th was a busy day. I had been told I needed to be "nil by mouth" from midnight until after the surgery, this means no eating and no drinking except some sips of water to go with my tablets. My operation was scheduled for 10:30am, so I was in hospital around 8am to have my blood tests before hand to make sure my platelets were high enough for the procedure. Platelets help to stem your bleeding, when I had a tiny amount of platelets, a simple cut shaving would like a Alfred Hitchcock scene, and especially when you're having an operation you don't want those risks. At around 9:30am while I was waiting in Haemotology Out Patients for my blood results and to be led to the procedure, I saw Dr Austin and Simon for the clinic appointment. They confirmed that I was in remission so it is now official which is fantastic news. In regards to my transplant, they are optimistic that I will have a donor and should begin the transplant in roughly 8 weeks fingers crossed. There are of course a lot of risks, my body could reject the transplant, I will also be incredibly susceptible to any kind of illnesses as I effectively wouldn't have any childhood vaccines. So if you have measles or polio, please avoid me. There are also diseases which are related solely to transplants where the donor's stem cells and immune system is over zealous and begins attacking my cells and organs. So there are lots of risks. But so far, so good.
Shortly after the clinic meeting, a nurse from the Haemotology Out Patients led me through the hospital to the operating theater I would be having the operation in. Prior to going in I had to sign some documents saying I understand what I am about to go through as well as have a discussion with the consultant who would be leading on the operation about what would happen. I explained I had this back in 2015 so I had some memory of it. I was then given a hospital gown to wear over my bare chest (still had my trackies on don't worry) and went into the operating theater. Here I was asked which music I'd like on during the operation, I went for The Smiths, it didn't work as well as The Talking Heads did during my Broncoscophy though. First I lay down on the bed and one of the nurses shaved the right side of my chest, then ultrasound jelly was applied in the shaved area which projected onto a screen to my left. I was laying on my back and instructed to keep my head facing left and very still throughout the procedure, as I lay there looking at the screen, the consultant and a doctor discussed above me the best way to proceed. Looking at the different veins on the screen and the pros and cons of aiming for each one, which is a weird conversation to be privy to. Once this had all been decided, I was covered in a large blue tent with a hole in it on my right chest and covering most of my face, probably in order to prevent me from seeing what is happening. As a result I could only see out of my left eye through a small opening in the blue sheet. The next step was applying local anesthetic to the base of my neck, it's hard to work out what is happening when you can't see, so apologies if I am getting any of this wrong. I could then feel incisions and just general fiddling with my neck. It's a strange experience as your natural instinct is to protect your neck (Wu Tang shout out), but of course you need to not move and allow the doctors and surgeons to do what they need to. It felt like a needle was being threaded through and I thought I could feel a slight puncture as I assume it pierced my vein and began being led through towards my heart. The next step was local anesthetic to the right side of my chest. More cuts were made and the thread from my neck was linked under the skin or through the vein to the incision point on my chest, where it was connected to the lumens (the cables that dangle out of my chest). Once the lumens are connected to the catheters under the skin which had been put through my neck, there is the very strange sensation where everything is being yanked through these 2 inches of vein until my lumins are at an appropiate length and not dangling around my ankles. The blood is then wiped off and bandages applied and I'm good to go!
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| Don't stare at my nips |
After the procedure I went back down to HOP where Hickman line had to be checked over, and after that I was free to go. Later that evening I was able to meet up with some colleagues from an old job in the outside at a local pub and watch the crazy Spain vs Croatia and France vs Switzerland matches.
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| Always been a fashion icon |
Tuesday 29th required a quick hospital visit to have the dressing on the Hickman line changed. Pleasingly there was not much blood below the bandages, showing that the procedure had gone well.
And most importantly I was home in time for the Germany match which saw us march into the Quarter Finals. I think I'm still nervous about Muller running through on goal shortly after Sterling scored, can't quite believe he missed.
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| IT'S COMING HOME! |
Wednesday and Thursday saw me just stay at home apart from going out for lunch. While Friday I was back in hospital for blood tests. I'm waiting to be admitted in for the 2nd round of chemo and have been told it could be Sunday evening I get taken in. But should definitely be no later than next week.
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| Enjoying a pub lunch (outdoor hut) |
The next round of chemo shouldn't be as intense as the first round which is good, and will likely lead to a much shorter stay in hospital. It's been great being home, but it has felt like I'm in no man's land, just waiting to be taken back in and to kick on with the treatment. I have my packed bags by the front door ready for the call to head back in.
Please do continue to join the Anthony Nolan register and continue to donate blood. It really does that change and save lives. All links that can help are here;
https://linktr.ee/AdamRiley? |
| NHS and Charlton - A match made in heaven |
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