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Wednesday, 11 September 2013

Medical Update.... Not quite what we'd hoped for but it could have been much worse.

I've spent a long time trying to think of what to write tonight, but I'm finding it unusually difficult to find the words. Here goes.... 
We met with Suzie's Oncologist yesterday, hoping to be told that her latest test results had revealed that the previous 'blip' had been overcome and that all of her blood levels were back to normal.... We weren't, it hasn't and they're not. 
Instead, the facts are that Suzie's CA125 level is continuing to rise and her most recent CT scan gives evidence to confirm that it is indeed because the cancer is active again. The medical team are reluctant to wade in straight away with more chemo because they said it would have to be more severe than the last time and would most certainly make Suzie feel extremely unwell. They are also aware that they are in uncharted water with regards to what effect more chemo might have on the progression of the MSA, so they don't want to do anything until we have had that reassessed.
The good news is that we are told that Suzie's cancer is unlikely to penetrate the surrounding organs to become bowel cancer or lung cancer etc. The most significant danger to life is the external effects caused by the cancer cells eg. that they will irritate these organs from the outside rather than produce tumours within them. The CT scan showed that fluid is already accumulating again in the abdomen and around the lungs but the medics are 'on the case' and will rectify this issue long before it becomes the life threatening situation that it was last December. We have to keep an eye on Sue's breathing and look out for any change in appetite or other digestive issues. Meanwhile they will continue to monitor Suzie on a monthly basis and address any symptoms as and when they arise. When they get to the point where they can no longer manage her symptoms in this way they will then recommend more chemo.
We are due to see a new Neurologist next week who has recently joined the Hospital and whose area of expertise is movement disorders such as MND, Parkinson's and MSA. To actually find a medical professional who has even heard of MSA is a miracle in itself!! We're hoping that he will give us some advice on how to manage Sue's symptoms and get the best out of what our life has become.
I won't even try to put into words the full range of emotions that we are feeling right now. Suffice it to say there is a sense of relief that the cancer isn't likely to spread, mixed with the utter devastation that all the treatment and chemo that Suzie has undergone throughout the whole of this year seems to have achieved no lasting benefit. We have shed a fair few tears together today. 
Today has not felt like a good day. We awoke with the information from yesterday's appointment still foremost in our minds; I then received a phone call from someone in the 'caring' profession which left me feeling extremely upset, confused, anxious and worthless; next we opened the post to find the letter we had been expecting confirming the approval of our funding grant for Suzie's wheelchair accessible shower adaptation, which we had been verbally told had been fully approved, only to read on the second page an unexpected section that stated 'our contribution' and showed a figure that was a huge shock; we took possession of Sue's electric hospital bed, only to discover that it didn't work and, quite frankly, was in such poor condition that it looked like it had come from the tip rather than an NHS warehouse. It was finally inspected by an engineer at 8.30pm this evening, who managed to do a temporary repair but said it would have to be replaced.
So, that was our day. But amid all our fears and frustrations, anxiety, distress and sadness, we do recognise that God is still in His Heaven, and we thank Him that we have reached the end of this day reasonably intact. I hold on to the famous quote from Julian of Norwich.... 'All will be well, all manner of thing WILL be well.' Or as 'Annie' sang.... 'The sun'll come out tomorrow....' Oh, I do hope so.