I’ve no idea where to start, so much has happened since my last serious blog (I’m discounting the one hastily written from my hospital bed on my mobile phone). I can hardly take in what’s happened myself, so I can hardly expect anyone else to do so. One thing for sure is that we’ve definitely turned another chapter, and no matter how you look at it, the pages behind me are numerous, and those left to read are getting thinner. It’s hard to tell, things happen so quickly, and this latest episode has made me realise just how quickly things can deteriorate to the extent that what seemed like a simple collapse in the street, resulted in doctors fighting to save my life, pumping random antibiotics into me in the hope that one of them would strangle the infection that was rapidly taking over my body. My stoma was spurting out blood like a garden hose pipe with a kink in it. Of course, when I arrived at hospital by ambulance I thought , at most, I’d be there overnight just while they checked me over and things settled down. As it was it was eight days before they discharged me. The initial diagnosis was colitis, my white blood cell count rising through the roof caused by the infection that was rapidly making it’s way through my digestive system. Almost coincidentally, a CT scan revealed a deep vein thrombosis in the major vein in my liver. Life threatening in itself. Doctors were at first reluctant to give me clot busting drugs all the time my intestines were bleeding, but they eventually decided to do so after speaking to The Christie. I now have to inject myself every day with super clot busting drugs in an attempt to stop it happening again. This is going to become increasingly difficult as the tumours in my liver now strangle the portal vein. During my stay at the Salford Royal, I was transferred to The Christie to discuss my situation with the oncology team. Hospital transport was arranged courtesy of Arriva who have now taken over responsibility for this service. The driver arrived in plenty of time for my 8.30 appointment, arriving on the ward at 7.45, plenty of time to make the short journey. However I had not taken into account the brainless journey planner at Arriva who sent the driver to the other side of Manchester in the early morning rush hour to collect another patient,extending the expected 15 minute journey to two hours. Needless to say the planned chemo for that week was not going ahead. They were in no doubt that the colitis was as a direct result of the last chemotherapy. The thrombosis ? Likely to be caused by the tumours in my liver. Surprisingly I learnt that the reason for Mr. L not wanting to carry out surgery to remove the tumours was not solely down to their closeness to my portal vein, but due to the ‘acute lung injury’ I suffered after my last liver op. The anaesthetic team did not consider it safe for me to undergo another operation, my lungs cold just not take it and they were not prepared to take the risk. This situation is not likely to change in the foreseeable future, hence the reason for heading down the chemotherapy route.
After a rather longer stay in Salford than originally planned I’m pleased to say that I’m now home, having been discharged from hospital following an eight day stay. Armed with yet more medication. Take two twice daily, take one four times a day, take one tablet daily, take one three times a day. Inject once daily. That’s all on top of what I was taking already. By the time I’ve worked out when I’ve got to take what, there’s no time to do anything else during the day. Perhaps the worst are the iron tablets, not to be taken one hour before or two hours after drinking coffee……..as someone who drinks nothing but coffee, that leaves me a five minute window at about 3am in the morning. Of all the crisis I’ve faced over the last 3 years, this was the most unexpected. Okay, so some effect from the chemotherapy could have been expected, but not the eventual diagnosis and outcome. Far to many times I’ve referred to other cancer patients who have gone from being relatively well to a critical condition in a matter of days, and I think I can put myself in that category now which is very frightening. It’s brought home a few home truths. I’m not invincible ! If I ever had any control over this disease, it’s gone now, which has un-nerved me to say the least. It’s very difficult to get answers when you are lying there in A&E as they pump you full of different antibiotics to try and control the infection that had taken hold of my body so quickly. I’ve said it many times, it won’t be the cancer that gets me in the end, it will be some stupid infection, and this very nearly was the case on this occasion. This time I got lucky(again), next time it might not be the case. Part of the luck on this occasion was that I chose to go out on that Sunday afternoon. Some people have questioned whether I should have been out and about so soon after chemotherapy, but the flip side is I could so easily have stayed in bed, dropped off to sleep for a couple of hours, and just shrugged things off as feeling a bit rough as the infection took over my major organs. By the time I realised something was wrong and I wasn’t getting any better, it could have been too late. At least when you collapse in a busy street someone is going to do something about it. Of course I was not alone, and it was more of a gradual collapse than anything dramatic. Stop for a rest- lean against a wall-sit down- lie down- roll around in agony. A kind of Holby City collapse in slow motion. The ambulance couldn’t really do anything for me due to the many contraindications and blood pressure falling through the floor. It must have been at least 20 minutes before they gave up trying to find a vein and decided to get me straight to hospital.
The reaction to chemotherapy was unexpected. I coped well with previous courses, and expected the same this time. Nothing could be further from the truth. Over two weeks since chemo ended and I’m still suffering. Swollen face and chest, covered in acne. diarrhoea, continuous for two weeks, the remedies the hospital provided having no effect on slowing this down. My mouth is sore enough to prevent me eating anything of substance, meals being replaced by the ever faithful high energy drinks I relied on so much during the early stages of this disease. Fatigue at a level I’ve never known before, and itching so much that my legs are left red raw. My second cycle of chemo was planned for last week, but even I knew there was no chance of this going ahead. Normally I would be reluctant to quote what I was told, for fear of being accused of exaggerating, that is until I read the exact same line in The C List. (see previous blog entry )
“If we continue with treatment this week it may kill you”
You sign the forms of consent before any treatment begins, and you read all the possible side effects , including “death” , but you don’t really expect them to apply to you. Chemotherapy has been suspended until 2nd June, by which time I hope I have overcome some of the side effects above. We’ll then consider what to do next. Always at the back of my mind has been Glastonbury, and for the first time, some doubt that I would be able to make it. I could not see me coping with the vastness of the place, getting from A to B. However, I have been convinced to bite the bullet, swallow my pride and hire an electric scooter for the duration of the festival. I must thank the disability access team at Glastonbury, who have been so helpful, and have put up with me changing my mind and needs on numerous occasions since first seeking their help. I’m also delighted that we have managed to get Lewis and his girlfriend Kirsty tickets in the re-sale, (many many thanks to Lela xxx), so Lew and Kirsty will be joining M & I, which will make it that little bit extra special. Thanks also the Fair Mobility for all their help in getting me wheeled up for the festival – I really couldn’t have made it without you. [ www.fair-mobilty.org.uk ]
I’m pleased to report that I have been able to get out for each of the last two days, exhausting yes, but feeling so much better having done it. It seems a long time since we set off for that festival in Salford. Only 4 weeks until Glastonbury, and I’m hoping to be able to fit in 2 cycles of chemotherapy before that. I hope the adjusted doses will be kinder to me than the first one. Finally, and most importantly, I have a load of people to thank for all the kind things they have done over the last few weeks. M of course, it goes without saying but I’ll repeat it anyway. All those people who stopped offering help whilst I was waiting for an ambulance. North West Ambulance Service. All the staff at the Salford Royal, I’ve been in a lot of hospitals over the last three years, and without doubt, you are up there with the best of them. Pat & Clive, always there without fail. Those involved in retrieving my car (I’ve still not told that story) Glastonbury Access team and Fair Mobilty (see above) and everyone who has sent their good wishes, it really does mean a lot.