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Wednesday, 30 October 2013

The Storms of Life

Even Millie prepared a place of refuge for herself!
On Sunday evening Suzie and I braced ourselves for a storm that the weather men had predicted would be the worst for many years. Much of the Uk was on 'amber alert' and, having stripped the garden of every movable object, we lay in our beds listening to the wind and rain, and fearing what was to come. We finally dozed off about 2am. 
As it turned out, that was as bad as it got and, unlike other parts of the Uk, we had escaped the worst.

The 'storm' that greeted us in the morning!
When Suzie woke me at 5.15am all was calm and quiet outside. Having dealt with Suzie's needs and got her settled again I was unable to get back to sleep so I made a cup of coffee and sat up in bed watching the sunrise! On these occasions when I'm awake early and Suzie is still sleeping I relish the peace of the morning stillness and I thank God for the beauty of a new day.

That couple of hours' quiet was the 'lull before the storm' because we spent most of Monday charging around various departments of Torbay Hospital as we went from one appointment to the next, with an added diversion to the x-ray department unexpectedly thrown in for good measure. Suzie's two initial appointments (which were totally unrelated) were scheduled for just an hour apart and were in departments that were a 20 minute walk from each other! 
Our first stop was the Gynaecology department where we met with Suzie's Oncologist. The conversation went pretty much along the same lines as the last time we saw her.... Suzie's latest blood test had revealed a further increase in the CA125 marker level, indicating increased activity of the cancer cells, but there is reluctance to give more chemo because of the severe effect this would have on the already deteriorating MSA symptoms. The alternative is to monitor her symptoms and intervene with medical procedures as and when such symptoms become too dangerous or troublesome. Much of this monitoring is based on my own subjective observations, with many of the decisions regarding medical intervention relying primarily on my less than confident assessment of changes in the severity of her symptoms. I have the sort of mind that likes things to be black or white, right or wrong, and I work much better with graphs, calculations and definitive numerical values, than I do with observations and subjective judgements. I had already become aware that Suzie's breathing has been more troublesome in recent weeks, but, when asked how much I considered it to be affecting her day to day abilities, I found it very difficult to answer with any certainty. I was very relieved when a chest x-ray was offered, in order to check how much fluid has accumulated, because it meant that, at least for this particular issue, they would have something a little more concrete and reliable on which to base their decision.
Our next appointment was, ironically, at the Heart and Lung department, although this was totally unrelated to the breathing issues caused by the cancer. It had been arranged by Suzie's Neurologist in order to set up an overnight Oximetry test to monitor potential breathing problems that are commonly associated with MSA. We were given an electronic gadget that resembled an oversized wrist watch, with a cable connecting it to a peg which was clipped to Suzie's finger. This would record Suzie's blood oxygen levels and pulse rate throughout the night while she sleeps. If the results show repeated dips in oxygen levels it will indicate a problem which will need to be addressed.
From there we had another hike over to the x-ray department, and a half hour wait to get that done, after which all that was left for me to do was to remember where I'd parked the car five hours earlier(!) and to get us home to the very nice bottle of wine that we had left there ready for us! We were so exhausted that we were ready for bed at 9.30pm.... which is absolutely unheard of for us!
However, our early night didn't really achieve the desired effect as Suzie, not surprisingly, had one of her 'nightmare' nights and so I spent most of the night trying to calm her down and reassure her. She eventually settled into a deep sleep and, judging by the snoring and other strange noises she was making, she will have given the Oximetry monitor plenty of data to go on!
We await the results and I will update in due course. Meanwhile, an update on previous issues.... The 'gory' problem that I mentioned in my last blog is now almost resolved, thanks to one of our wonderful 'angel-friends' who is medically experienced and who immediately stepped in to deal with the problem for us. Her efficient and caring response to our need is just one example of how God's gifts of love and provision are being showered upon us through His people.
Also, after some intervention by our lovely Rowcroft Hospice angel, Suzie now has a Neuro-physiotherapist 'on board' who specialises in the kind of problems Suzie faces. She will be able to help us with mobility and postural issues and will hopefully help us to get the balance right between making sure Suzie is doing as much as she can comfortably do herself whilst not putting unnecessary strain on muscles that can no longer cope with it.
Finally I would like to take this opportunity to say a heartfelt thank you to those of you who take the trouble to send me a personal response to my blog entries, either via email, Facebook, Google+ or whatever. You know who you are! It really does mean a lot to Suzie and me to be able to read your messages and to know that you are interested in what we share in the blog, and care enough to tell us so. We have made some wonderful new friends and we have found some of our existing friendships enriched in a very special way. Your contact gives us a much needed sense of joy, love and blessing and really does help us to withstand life's storms. Thank you so much and God bless you. xxxx