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Friday, 5 July 2013

So...... Here We Are Now.

As I look back at my blog so far I pause to reflect on how we got to where we are now.... During the last 18 months we'd spent 12 months going through one medical test after another and ruling out numerous diseases. Suzie's illness had hit crisis point in December, resulting in two weeks in hospital over Christmas, and then, in January this year we'd had the diagnosis of two totally unrelated yet equally rare, life-changing, life-limiting illnesses within the space of three days. Primary Peritoneal Cancer and Multiple System Atrophy.
Our lives have been turned upside down and changed beyond all recognition. The last six months have been a whirlwind of medical appointments, tests and procedures. We've been looking towards the completion of the chemo as a sort of 'end point' after which things would become a little easier and a lot less hectic and medically orientated. That isn't quite how it has worked out though. Looking at my diary we seem to have something in it every day for the next two weeks. Various blood tests, scans, x-rays and consultations to assess the impact the chemotherapy has had on the progression of the cancer and also to monitor how well Suzie's body and blood levels are recovering after the treatment. Then we have other appointments with dentist, optician etc. that had been put on hold until chemo had finished, and, eventually, we will be going back to the Neurologist for her to pick up where she left off six months ago. 
Back to the Neurologist.... That phrase hits me hard as I find myself faced with the painful reminder that the cancer was a comparatively 'lesser' problem that was thrown into the equation only a few months ago, and that, even having passed the all-important finishing post of chemotherapy, the more serious and major issue of the MSA still remains, progressively debilitating and untreatable. We have no idea how much of Suzie's deterioration in the past few months has been caused by the cancer and/or the chemotherapy, and how much has simply been the MSA continuing its relentless destruction of our life. Either way, we realise that we still have a very long and hard road ahead of us. 
Over recent weeks, as we have had to adapt to Suzie's ever increasing care needs, inevitably more medical professionals have become involved to assess us and provide/suggest what adaptations we may require. I had no idea there were so many departments and so many people who deal with these things. I've had advice and information given to me from various different sources and, if I'm honest, I must say I'm finding it quite tough wading through so many leaflets, forms and phone calls. So many of the questions I'm asked in these forms and phone calls overlap and I have often found myself duplicating the information I give, but receiving different responses, advice and instructions as each of the agencies involved looks at our situation and Suzie's needs from a slightly different perspective. Sometimes I feel like I'm drowning in it all and struggling to keep my head above water. I want to make sure that Suzie has everything she needs and I feel a huge weight of responsibility as I work through all the paperwork, trying to make sure I don't miss anything vital that I should be doing to improve Suzie's well-being. Our GP has been great and is trying to get someone who knows the system to co-ordinate all the different aspects for me.
One very precious and most valuable oasis in all this is our regular visits from Lynne from Rowcroft Hospice. When she visits she seems to bring with her a breath of calm and genuine care into our home. We have had contact with various people from the Hospice and we gain a great deal of support from the Palliative Care that they offer. More about them in my next post.
Time now for me to get some much needed sleep.
I will leave you with some photos of Suzie, including some of her supervising me in the garden. She has always been a keen gardener, and being unable to do it any more is one of the many great sadnesses this illness has inflicted on her. 
I have never been a gardener.... But Suzie is determined to make me into one!! 

A Welcome Afternoon Out (This one is NOT our garden, just in case you wondered!!)
Suzie Inspecting the Garden

Pointing out the weeds I'd missed!
"Can I lean over and smell this flower without falling into the bush????"
Just Posing!

After all my efforts at gardening it's time for me to get my own back and get Suzie doing some housework!!