John: A CT scan was planned after the last chemotherapy session and booked for about 10 days later, so I headed off to Vale of Leven hospital at the bottom of Loch Lomond for a 2pm scan on 24th June. CT scans need a 'contrast' injection through a canula. This time though my veins were not playing ball so the first scan didn't work and had to be redone - we're not sure what is in contrast, but it has an effect on me of giving me diarrhoea so I felt a bit rough for the next day or so. We then had to wait until the 11th July for the results, but it soon came around.
On the face of it, we were not particularly stressed but under the surface we were both thinking about it. We were hopeful the news would be good, and it was. The chemotherapy has knocked the tumours back further and so for the moment I'm off any medical interventions. Next appointment is September for a check in with Dr Storey, and then probably a CT in October/November for an update on progress of the tumours' growth. For the moment I look and feel pretty good all things considering.
Liz: Initially I thought I was fine about the appointment today based on how John has been getting on - my sister, Jess, would say I'm in denial and I suspect she is completely right. On the morning, however, my body was telling me I was in panic mode: indigestion, palpitations, breathlessness. Luckily the appointment was at 9.30am and Dr Storey put us out of our misery quickly. This appointment was a lot more satisfying than previous ones becasue we are finally thinking about the future more and Dr Storey had done some more research into possible future treatment options for John. She had discussed his scan at a team meeting, which included John's surgeon, Mr Alwahid, and investigated the two centres in the UK that deal more specifically with appendix cancer and undertake more radical organ transplants, but the idea was not a goer as apparently you can't transplant the small intestine. The best news was, though, that Dr Storey asked about John's pins and needles in his hands, and said that she was hopeful it would go away but may take a year. John was surprised and asked if he really might still be here in a year, and she said, 'yes, I believe there is a good chance you will still be here in a year.'
So, the plan going forward is to evaluate in a couple of months but in the meantime she is going to refer John to the clinical trials team for evaluation to see if there are any trials that may benefit him now or in the future. I had done a fair amount of reading round the night before (staying up until gone midnight while John snored next to me) reading up on all the current cancer trials. There were a few for experimental drugs and a few for other treatment options and a few for purely research. Dr Storey also said there was at least one further treatment option we could try when the time comes as John may now have built up a resistance to the original chemotherapy drugs. It is really comforting to know that not only are there options out there for John, but also that his medical team are matching his fight with their efforts on his behalf. We are so thankful to them for their care and their time and their patience, and for giving us more time together. We still feel a real affection for Mr Alwahid for giving John the initial opportunity to fight on, because without his skill John would not be here at all, and it is nice to know he is still involved.
Anyway, after that we went for a celebratory meal at TGI Fridays, followed by John picking up his lovely new Mobility Aygo X so that he can get around to all these potential trials, plus any walks and other exploring he decides to do whilst I'm at work. So, we have ended today happy and positive and contemplating what a weird world we are now in where a year to live is incredible news that makes us slightly giddy and ridiculously grateful to the universe for bestowing this scant but unexpected and very welcome gift on us. I said a brief and tearful thank you prayer and am now looking forward to a calmer, more assured summer of enjoying our new home and surroundings and maybe some long weekends away in Scotland and seeing the kids and other family and friends and just generally being together, which is all that really matters.
Comments