So...the last few weeks have been interesting to say the least... I had my brand new stem cells on 28th August - an exciting but nerve-wracking moment, as we were all hoping I wouldn't have a reaction, or any complications. Naturally, that wasn't going to happen...more about that later... It was also Mum's birthday that day so we had a nice little celebration for her too! Lottie made her an amazing looking lemon drizzle birthday cake too - which I look forward to having when I get out of hospital and my taste buds are back to normal! Mum put a couple of slices in the freezer for me.
After the stem cells I was hit with a hideous bout of mucositis, to the point where I couldn't drink or eat anything. I was receiving total parenteral nutrition (all your nutritional requirements through an IV) as I couldn't eat, and fluids and electrolyte top ups. My counts went flat after a couple of days, which was good as the graft could then embed itself. However, I then went down with an infection, which unfortunately it was discovered had come from the stem cells I'd received. Nothing we could do about it though so whilst I had also started patient controlled analgesia in the form of a nice variety of opioids - first Fentanyl, then Morphine, then Oxycodone.... - I was started on antibiotics. My kidneys then decided they'd taken a bit of a hammering and I got diagnosed with Acute Kidney Injury, which I am still in the process of recovering from.
My graft then started embedding the following week, as my counts started going up by themselves, but the kidney problems, sickness, infection, mucositis and other side effects persisted with a vengence. By the end of the week my mouth and throat were starting to heal and I could at least talk a bit again and sip at water. However, I'd been put on oxygen as my breathing was poor and given frusemide as I was retaining so much fluid. Then, last weekend, I was moved to the Critical Care Unit at Chelsea and put in an induced coma as I couldn't maintain my oxygen levels.
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| Dad never misses the opportunity for a photo |
I can't gather, as of yet, exactly what they did, but I do know I had a CT scan, samples were taken from my lungs and fluid taken off them. I was put on a Propofol + Fentanyl CRI (continuous rate infusion) but could still manage to communicate by writing on a white board - veryyyy weird experience that I do not wish to ever repeat. I was extubated (had my breathing tube taken out) after 3 days and had to deal with some really hideous sickness due to antibiotics and other drugs. My taste buds are wrecked too now which doesn't help - nothing tastes right and I'm struggling on an hourly basis to find something that I can stomach... Dad very kindly kept bringing in a variety of foods to try, including a Whopper from Burger King, which although smelt amazing I couldn't stomach one bite of - to his luck! All my family were absolutely incredible throughout my time in Chelsea, visiting me regularly and helping me keep strong throughout the toughest week of my life.
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| The Whopper |
I finally got back to TCT on Friday evening to an amazingly warm welcome from all the staff! The critical care unit staff were brilliant but it just wasn't the same as Sutton. TCT is just a home from home and I didn't feel like I was making much progress at CCU and was getting very frustrated. I also did not want to spend a moment longer there than I had to, especially with my birthday approaching.
My counts are good now, meaning that my graft is hopefully looking promising. I am spiking the odd temperature still though and each day is still a struggle. It will be a long road of finding foods I find palatable/don't make me feel sick, physio and rest that I have ahead of me, with 'some normality' hopefully by Christmas but I'll be on immunosuppressants for a while yet to reduce the GVHD effects, which I have also experienced (nicely pigmented and peeling hands and feet...). I'm not entirely sure what happens next but no doubt I'll find out soon enough.
Today I was exhausted, sleeping in until midday, when Dad, Lot and Phil (on very little sleep) joined Mum and I, arriving with a ton of fantastic presents and cards! The TCT staff were also incredible and made me a cake and gave me a gorgeous card and present.
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| The incredible TCT staff with a cake, card and present! |
We had a game of Scrabble but I was shot to pieces, as was everyone else after the last week I think! So I said goodbye and am currently enjoying some much needed R&R after a couple of hectic days.
Finally, a massive thank you to everyone for all your lovely cards, cakes, presents, messages and facebook posts. You have all given me great strength throughout the last 8 months and I do intend to plan a rather epic road trip to visit you all and thank you profusely in person!
Much love to you all xxxx
