Onto week 3 now, and it has been rough. At the checkup I noticed a bad rash over the whole of my back and torso, which appears to be the result of the medication I have been given to save my kidneys and prevent gout (cue images of Henry VIII). That has been extremely itchy, but by stopping the medication that seems partially to have reduced the problem. Now I'm just shattered. I also had a problem at the checkup that they are so keen not to cause offence that when the doctor was ready to see me, she claims she called out my name several times, but it was 3 hours until we made contact, and I was sitting almost directly outside her consulting room (not that I knew which room she was in). We think she thought people would take offence at having their name called out too loudly. I shall be wearing a name badge next week as I had a complete meltdown!
I was discharged from hospital last Tuersday, 10th December, as my neutrophils had jumped from 0 to 4 (the range is 2-7.5), so although I was very weak they said I had to leave. I was rather concerrned as there is no way for me to request a blood test, let alone a consultation, and both the GP and the hospital operate on a one way communication system, unless it's so bad that I turn up to A&E. This time it took 3 hours to be seen, then a further 27 hours to get a bed, but as soon as my bloods were OK I was out. So I'm back on my sofa, waiting for the remains of the chemicals to work their way through my system. At least I'm allowed to go out now, though I don't have the energy to do so. Thank goodness for Ocado. My next consultation is with the consultant on 29th January, and I have to hope they'll book me in for a blood test before that. So hopefully I'll be back to normal withint a few months, though time will tell whether that is back to how I was bef...
I didn't post on Monday after the check up as there was nothing noteworthy about it (which I suppose is noteworthy in itself). But this week I've noticed something strange. Generally I'm now at a pretty consistently low ebb in terms of energy, hunger and 'chemo brain'. But I've noticed not only that all of these fluctuate more widely than usual, but that they are more unpredictable. The two main problem areas are energy and weight. Having lived with ME/CFS for some years, I'm used to the attitude that it's our fault: the offical NICE guidelines until recently (where GPs don't just simply shrug their shoulders) is that the solution is a combination of needing therapy as we're clearly nuts (there was a study recently which said that the problem with ME/CFS is that we push ourselves too hard). The other solution is Graded Exercise Therapy, which means that you walk for 10 minutes one day, then 12 minutes the next day. And the advice on weight is tha...
Noooo… Sending love & gentle hugs xxx
ReplyDeleteSorry to hear this and hope they get back to the right level very soon
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