Well, maybe not a new me, but certainly new experiences!
It has been an interesting 10 days or so, and this will be a long post, so settle down and I’ll tell you about it!
Mark was quite right when he said that I under-estimated how unwell I was. I suppose it came home to me on Sunday morning (14th) when I was thinking about getting up, and finding the prospect un-appealing, that I realised that in 24 hours I was supposed to be at Guy’s – and I just couldn’t do it. The fact that I had spent the previous two days in bed should also have alerted me to the fact that things weren’t well. There were some slightly surreal moments too – Mark said that he had visited on that Sunday, and that I looked unwell, I also had a visit from a friend, Peter – who is also our Vicar. He did arrive wearing his clerical clothes, and it was a bit of a shock to open my eyes to see this figure in black leaning over me! I did wonder where I was for a moment!
Anyway, having decided that Guy’s on Monday was out of the question, the only other option was to get me to Southampton General for some treatment, and the only realistic way was by ambulance. So an ambulance was called, but on arrival, the crew were distinctly hostile. It didn’t help that they had no knowledge of the effects of chemo, or how unwell I was. It did help that I had a letter of referral to Southampton, written by Guy’s, but we got the distinct impression that they thought we were time wasters. However that changed when they saw I was having difficulty breathing, and at that point they offered oxygen. Meanwhile I decided I needed to wash my hands. Funnily enough, I had difficulty reaching the tap, and the next thing I knew, I was on the floor of the bathroom having blacked out. I think that was the pivotal moment for the crew, and they eventually got me downstairs and into the ambulance for a trip to Southampton. The only disappointment was that we didn’t go with lights and siren!
I was admitted to A&E, and then eventually onto the ooncology ward, where they started immediate re-hydration and anti-biotics. My blood counts were a disaster – haemoglobin about 7.5, platelets 5, neutrophils about 0.1 – low enough to warrant being in isolation, and in fact after about 2 hours on the open ward, I was transferred to a side room, which was where I stayed for the rest of the week.
I was also given some pain relief for my sore mouth and I was given a cocaine mouthwash. I had had that before at Guy’s during one of my transplants, but this seemed stronger, and the relief was immediate – and just being pain free made a big difference. Once that was sorted, and I was moved into my side-room, the rest of the treatment continued – anti fungal drugs as I had a thrush infection in my mouth, loads of saline to get me re-hydrated (I must have had about 14 litres or more during the week) and lots of anti-biotics as my neutrophil count was so low. I also had a bag of platelets and three units of blood to get some semblance of blood normality back.
The week was not without its moments! I mentioned that I had the cocaine mouth wash, and that was the first of many, however I began to notice that after the mouthwash, I was becoming almost garrulous – I couldn’t stop talking and I had a real feeling of euphoria. It wasn’t until about the 5th time it happened that I realised I was on a cocaine high. The stronger solution and my damaged mucous membranes meant that I was absorbing a ‘recreational’ dose – and when I realised that, I found it quite frightening. I did have to apologise to some of the staff who I must have bored, but they found it quite amusing! I decided to stop taking it, but when I discussed it with Dr Katia, we halved the strength, and so it only had the desired effect of pain killing. Was there a little twinge of disappointment? Maybe, but the fact that the drug had such a mind altering effect really was scary. I can see how people become psychologically addicted. While discussing it with Dr Katia, I did say that I have NEVER used drugs recreationally – she smiled at me and said “Well, you have tried it now” It was an experience!
And now is the time to give a huge thank you to the medical staff on C6 ward. On the medical staff, there were Drs Katia (Registrar) and Dr Helen, who admitted me from A&E and started the treatment, and Dr Jane, who as the SHO had day to day care of me. They are all part of Professor Johnson’s team, and looked after me really well. I must also thank the nursing team, who yet again showed that it is the people that go to make a good team. I always feel a bit diffident at this stage, because there are many more nurses whose names I didn’t catch – but my thanks goes to them too. However the ones whose names I did catch include: Beatrice (who looked after me on arrival), Kevin (Charge nurse), Terry Clare, Rosie, Allison, Mel, Vicky, Sheryl, Susan and Reena – and many more. Thank you all – yet again it was a demonstration that Oncolgy nurses are a special breed. Susan was on nights during my stay and so did much to look after me at that time.
My stay lasted a lot longer than the Thursday. However I found hospital food to be difficult to eat, partly because it didn’t appeal to my suppressed appetite, and partly because although the mucous membranes started to heal, I still had a painful ulcer on my tongue that made swallowing difficult – even with the mouthwash.
However, by Saturday I was ready to leave, knowing that my nutrition would be better at home. Sadly my platelets were still low, and Dr Katia was reluctant to discharge me, however on Sunday, they had crept up a little, and although not a dramatic improvement (13 to 15) but with some misgivings, I was discharged, again with a small pharmacy stock! It was so good to be home, and to have real food cooked for me!
On Monday I had an appointment at Guy’s for a review, and we were driven up by a friend of ours – trains were banned! I had hoped that I might have some donor lymphocytes, but instead the news was not good. Basically Guy’s feel that there is little more worthwhile treatment that will make a difference, and that the future lies in palliative care. Put baldly, it means that my life expectancy is now measured in months rather than years. They are arranging for a scan to see exactly what is happening, and if the disease has been knocked back, there is the possibility of DLI, but it takes a while to act, and there is the risk that the disease will overtake it, but we shall see. There is also the possibilty of an experimental drug called Velcade, but again it is a slower acting drug, and the disease dynamics again come into play. So not good news, and “Onwards and Upwards” doesn’t seem really appropriate. All I can say is that I will try to fight this every inch of the way! (Tough old bird!) And I will keep the blog going for as long as I can.
However, I don’t want to end this post on a sad note, so I take great pride in introducing Olivia Ellen, who was born at 8 minutes to midnight on 15 January, weighing 7lb 3oz! She is a cutie! 
The photo was taken when she was less than 24 hours old. And perhaps looking at that photograph, maybe there is room for a little “O&U”! I will post some more photos if you wish!
This morning there was about 4 inches of snow on the car, and the roads were ungritted. I left early and got in before there had been too much traffic to compact the snow, but several people have rung in to say that they are snowbound. The forecast isn’t good, so it will be an interesting drive back to Winchester tomorrow!