Monday, 24 November 2014

Manic Monday

I think I can justifiably call this a crazy couple of weeks, at least on the medical front. I'm writing this from the oncology ward in Bristol so I've got no excuse about not having time now. 

You may recall that Katie and I were getting used to me being unable to walk any distance beyond a couple of hundred yards. We've hired a mobility scooter which has been invaluable in allowing me to get around central Bath. We saw the pain consultant at the hospice about my mobility problem and she gave me a new drug that she had a small hunch might help. I started on a very small dose and increased this over a number of days. On Sunday 16th Nov we had some friends down and decided to go to a pub in central Bath for lunch. I was going to use the wheelchair but was feeling good so I decided to try walking to see how far I could get. I was astonished to find that I was able to walk all the way to the pub, the best part of a mile. Some days I've hardly been able to walk around the house so this represented an incredible advance. 

Last week we stayed in a holiday rental place between Chepstow and Monmouth. It was a really beautiful converted chapel, the dining room had some incredible stained glass windows, unfortunately the pictures are still on my camera and I can't access them from here! It was as close to the hospital in Bristol as home which makes us feel comfortable. 

On Thursday we popped back over the bridge for a consultation with the oncologist. We discussed what we'll do next if the gem/tax chemotherapy doesn't work. The oncologist said his recommendation was that I had no further treatment. I've always been determined not to go pursuing treatments that have very little chance of working, I've even spoken with the oncologist about this, but his recommendation really shook me, it felt a bit like the medical profession giving up on me. I felt very down for the next day or so. We're still looking for a further treatment we can try, but it must be one with no or very few side effects. We are hoping we can convince the oncologist to support us in trying one of these. Katie and I feel that we want one last spin of the roulette wheel. 

I was feeling ok over the weekend apart from a cough I'd developed. The coughing was accompanied by some breathlessness. This morning within 5 minutes of waking up I was really struggling to breath and the coughing was making this worse. I've never had breathing problems and I found the whole experience really unpleasant and very scary. I was due for a blood transfusion at 9am this morning at one of Bristol's smaller hospitals so Katie and I went there as we knew they'd advise on my breathing issue. The nurse looked at me and told us to go straight to the acute unit in the Oncology centre. 

The doctors in the oncology centre were clearly concerned by how I was and I've spent the day having tests: chest x-Ray, abdominal ultra sound scan, ECG, arterial blood gas, blood tests, physical examinations, an echo cardiogram and no doubt I've missed some out! At this point their view is that I have heart failure caused by a combination of a pulmonary edema (fluid on and around the lungs) and an infection. I'm on antibiotics, oxygen and a diuretic to try and move some of the fluid. There is a suggestion I might be allowed home tomorrow but I'm not betting on this as I still get out of breath with any physical activity. I'll post again when there are new developments.

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