It’s certainly been an emotional roller coaster over the last 3 weeks and my first cycle of chemo. The GI issues continued although I think I’m beginning to get that sorted and hope it will be less of an issue for cycle 2.
I’ve been on and off Dexamethasone for the first 2 weeks, have had massive highs and crashing lows but it’s manageable. I am having to learn to accept that I can’t walk as fast, exercise as regularly or do as much as I used to and try and cut myself some slack. The dogs have still had their daily walk although sometimes more slowly and many times I’ve no enthusiasm but I force myself to go and generally feel better for making the effort.
Psychologically I think I’ve come to terms with what’s happening and have adopted a very pragmatic stance, at least externally. There’s nothing I can do other than follow the guidance of the medical staff and take my medications to try and manage this disease. I look around the chemo room when I’m in for treatment and see that I’m significantly fitter and better off than many around me and for that I’m so grateful. It doesn’t alter the fact that in the wee small hours when I’m unable to sleep, (another side effect of the Bortezomib although I’m an insomniac anyway), morbid thoughts do creep in and I have had a couple of occasions where I’ve found myself weeping uncontrollably, for no apparent reason other than I’m feeling sorry for myself. It’s understandable I suppose when confronted with your own mortality although nobody really wants to have to deal with it and look it in the eye. There is no psychological support at the hospital, not that I’ve asked for any, but none has been offered. Nobody at the hospital has asked, ‘how are you feeling about all this?’ I’ve had my support from family and friends but I do wonder if this should be more available or at least offered when diagnosed with a significant disease. I’ll just get on with it, do as much as I can whilst I feel well and not dwell too much about what ifs and drink Prosecco when I feel ok ;).
Cycle 2 starts tomorrow and I’ve kept a chart of how I felt each day through Cycle 1. It will be interesting to see if it follows the same pattern or not. Thanks to Alistair my husband who gets the daily blow by blow account of the side effects and is so supportive…..just have another glass of red wine Ali you deserve it and I’m sorry if you’re living with an impostor. Like Arnie Schwarzenegger, I will be back, I’m just not sure how long it’ll take….. xx
Annie’s amyloid adventures 
Hi Anne, good luck with cycle 2. You May suffer similar side effects as you adjust to the treatment but cycle 3 for me saw side effects subside slightly and then under better control with appropriate medication which is a bit of trial and error to find what’s best for you. I went to a Homeopathic Consultant which was really helpful. I transferred to a Homeopathic Doctor at the Centre for Integrated Care next to the Beatson Centre when we moved up to Inverkip. That has also helped but I’ve also found my GP superb up here and she just keeps saying “Call me if you need anything”. Christine has built up a mini home Pharmacy so I’m well prepared for pain management etc when necessary. Luckily I have not had too much of a problem in that department as yet.
Good news last Thursday when I saw my Consultant before Chemo no 47. The latest Chemo drug (which only has a 30% chance of working is doing its job and holding everything back. In fact it’s actually shrunk some of the tumours! As a result we’re off to Madeira to our time share for a week on the 28th of August. Looking forward to the break and I’ll have a two week break between Chemo for a change. Keep up the positive attitude and don’t worry about the bad thoughts too much (we all get these, just human nature to feel sorry for yourself at times). Have you tried talking to someone at the Maggie’s Centre at the Beatson re support? I went a couple of times to the one at Charring Cross Hospital innLondon when Inwas having Chemo there. They have different groups that meet and they’re finance guy was very helpful around getting me my PIP (personal independence payments) by doing all the paperwork for us and putting in the application supported by my Oncology team. I ended up with the full amount as a result which has helped towards our travel up and down to London and Essex to see family and friends.
Christine and I follow your news and wish you all the best.
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