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Saturday, 29 June 2013

Feb. 2013: MSA, Cancer, Chemo, Depression, Anxiety, Fear.... Help!!!!

Suzie's chemo started off ok and the treatment itself was less traumatic than we'd imagined. The staff were lovely and Suzie didn't feel anywhere near as dreadful, physically, as we feared she might. However, the worst effect was the significant deterioration of her MSA symptoms. Her mobility became much worse and her speech also deteriorated. She was unable to do anything much with her hands, and that was preventing her from doing so many of the things the rest of us take for granted. Of course, we couldn't be sure that it was the chemo causing this and we had to face the possibility that this might all simply be the MSA progressing. We had no way of knowing. MSA is rare enough on its own, but trying to find any evidence of anyone else who had MSA also having cancer and undergoing chemotherapy was pretty much impossible.
We just had to learn to accept the fact that everything we did was exhausting and took ten times longer than it used to, and try to adjust our expectations accordingly. By now Suzie needed help with every aspect of her personal care and there was very little that she could actually do at all without help from me. She couldn't go anywhere on her own, even just from one room to another or to wander round the garden; she couldn't do any of the activities or pastimes that she used to do; she was bored, depressed, frustrated, anxious and, most of the time, just plain terrified, and she was finding it so hard to come to terms with the reality of what her life had become. Many times every day she would suddenly start sobbing uncontrollably, grieving for the many aspects of her life that had now gone forever, and terrified of what was going to happen to her as the MSA progressed. She felt totally bereft, denied of all the things she used to enjoy and she felt utterly desolate as we desperately tried to find alternative pastimes to occupy her mind. Suzie was sinking into a big black hole of despair and despondency, and I was getting increasingly worried about her.
The day times were bad enough, but the nights were even worse. Night after night I would be awoken by the sound of her screaming and shouting out in her sleep. Every night I would go in to her again and again, and sit with her for ages trying to calm her down and reassure her. She was going through a living hell and I just didn't know what to do to make it better. We needed help!
There was plenty of help available and I had a folder full of leaflets, booklets, contact cards and telephone numbers.... Devon Carers, Macmillan, MSA Trust, Care Direct, Social Services, Rowcroft Hospice.... The list was overwhelming and I just didn't know where to start. Macmillan's had been suggested by the hospital, but they specialised in cancer patients, and actually Suzie's cancer was the least of our concerns. Most of their nurses would never have heard of MSA and I was getting so very weary of repeatedly explaining it to people. In any case, I'm not very good at making phone calls to people I don't know, so that would be yet one more stress for me to cope with. One evening when I was at my wits end and feeling totally helpless and bewildered by it all, I sent an email to the MSA Trust and just poured my heart out to them. Their response was amazing. I received an email back from them filled with genuine compassion and care, and also a vast amount of very helpful and practical advice. They were honest enough to tell me of the harsh realities of MSA, but followed that with a list of things I should put in place and told me which medical professionals I should get involved at each stage. It was like someone had got hold of all of my wild and chaotic thoughts and fears, and then had somehow drawn them together and organised them into an achievable plan of action. I can honestly say that email was the turning point for me in finding a way to move forward.

My first step was to get in touch with our local Hospice. Contrary to what most people think, Hospices aren't just about going somewhere to die. They offer extremely comprehensive Palliative Care plans that can do an amazing amount to improve the quality of life at home, for patients and their carers, throughout many years of illness. This seemed a good way forward for us because of the complex nature of Suzie's health issues. The Palliative Care team would not be 'illness specific' but rather would focus our situation as a whole and look at 'where' we were, not 'why' we were there. We arranged a visit from a Palliative Care Nurse for Friday 1st March, a day that already had particular significance for a completely different reason......
My next blog entry will explain why!!