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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

Tuesday, 22 October 2013

Out of my Depth

I don't think I have ever felt so under-qualified and ill-equipped in my life as I do right now. Suzie's health and well-being are my responsibility and yet I often feel like I just don't have a clue what I'm doing. There are so many aspects of our day to day life that have become increasingly difficult in recent weeks, and yet I feel no more qualified to deal with them now than I ever did.
Even the seemingly simple task of transferring Suzie from her wheelchair to her armchair, or her bed, or 'whatever'....that has to be done many times every day, is becoming more difficult, and I'm painfully aware that I'm not carrying out these manoeuvres as efficiently as I could be. I'm constantly afraid that I may be putting Suzie's safety at risk, not to mention my own, but I just don't know what to do to make the process any easier or safer. A physiotherapist might be able to advise, but we've only seen one once in the last six months. Suzie's Neurologist said weeks ago that we ought to be seen by a specialist Neuro-Physio but there is no sign of that happening any time soon. I'm trying to be patient and 'wait our turn' but it's very hard to do that when Suzie's condition is changing so quickly and I have so little confidence in my ability to adapt appropriately, knowing that she will suffer if I do the wrong thing. At the same time I'm afraid to ask to see someone else in the meantime for fear of being thought a nuisance or of coming across as unreasonably demanding. There are so many times when I really just don't know what to do for the best.
One such issue is the difficulty Suzie has keeping herself upright whilst she is sitting in her chair or in bed etc. but the last advice we were given (some weeks ago) was that we should avoid giving her any kind of postural support outside of her wheelchair because it would cause her muscles to weaken even more. We try to follow that advice but she is now unable to maintain a comfortable position for long and her efforts to stay upright cause significant pain. Ultimately it doesn't work because she slumps to one side, so she frequently needs me to lift her back up and help her to straighten up again. This is not conducive to a relaxed evening for either of us! We've had to resort to a make-shift arrangement with pillows at the side of her chair, just to ease her discomfort, but is that causing more harm in the long run? Is the previous advice still valid in view of her deterioration? 
On the 'medical' side, we start another round of tests and hospital appointments this week. The following week we have an appointment with the Oncologist who will assess the progression of the cancer and its on-going effects and symptoms. She will then decide whether any further medical intervention should be instigated yet.
Suzie then has to have an overnight Oximetry test to monitor her pulse rate and oxygen levels while she sleeps. MSA causes the malfunction of many autonomic bodily functions such as breathing, heart rate, blood pressure, body temperature, swallowing etc. Most of us don't even think about these things because they are controlled automatically but, in MSA patients, they aren't, so they need to be monitored, and corrective intervention applied where necessary.
This week we've had an added medical problem.... nothing to do with the MSA or the cancer, but, yet again, something I'm trying to deal with without the benefit of any kind of medical knowledge or training. The 'Out of hours Doctor' on Saturday provided us with some dressings, but I then had to change these dressings periodically over the weekend, trying desperately hard not to pass out at the sight of all the blood and gory stuff. Those of you who know me will know that I'm hopeless with things that involve blood and open wounds, and I faint at the sight of such things. I had to keep alternating between trying to replace the dressing and lying down on the floor until my head stopped spinning!!
Tomorrow, however, we have a visit from our lovely Hospice Social Care worker. The timing couldn't be better as I'm sure she will help us to feel strengthened and more mentally equipped to cope with the weeks ahead. Her visits are always a blessing to us and we thank God for the emotional support she gives us. Please keep Suzie in your prayers during the coming weeks. Thank you.

Wednesday, 16 October 2013

As Good as it Gets

The title of this Blog entry is taken from a film which starred Jack Nicholson as a chronic OCD sufferer trying desperately to find happiness and peace of mind within what he perceived to be a perilous, chaotic and dangerous world. He asked the question, 'What if this is as good as it gets?' This is certainly a question that Suzie and I have asked ourselves many times in recent months. What if this is it? What if the way our life is today is as good as it will ever be? It's rather sobering to acknowledge that, actually, it probably is. 
Over the last year or so Suzie and I have been through a grieving process as we have struggled to accept the fact that there are so many things that we will never again be able to enjoy. This is it. This is as good as it gets.
When we are able to, it helps if we can acknowledge that our life is the way it is because this is what God has chosen for us. We certainly wouldn't have chosen it ourselves, but we would rather live the life we have now, with all its pain, fears and limitations, than to live outside of God's perfect plan for our life. That does not in any way diminish the level of suffering that Suzie has to endure every day. Life is tough, and we often get upset, tired, fearful and depressed. We face a significant level of anguish and dread as thoughts of what the future might look like inevitably stray into our minds. 
Some people would ask 'Why me?' 'Why us?'.... Our response to that is 'Why NOT us?' What makes us so special that we should avoid the sufferings of this world? Our challenge is to learn to accept our situation and to trust in God's unfailing love to uphold us. It is in total acceptance that we find perfect peace.
The problem is that we are subject to fickle human emotions. Today has been a 'low' day.. A 'can't' day.... Suzie's mobility has been almost zero, and her speech has been the worst I've known it. It took a very long time and a lot of frustration and tears to even get her into the car in order to go out and do some shopping. The time we spent in the supermarket was painful for us both as Suzie struggled to make her words understood, and I struggled to hear what she was saying above the noise of my tinnitus, the background music that was playing, and the constant drone of the fridges and freezers. When we got back home it took another prolonged effort and a fair few more tears to get Suzie out of the car and into the house, with a very near miss as we got 'stuck' on the step and very nearly both ended up on the floor. It was awful beyond words. When we finally got in to the house Suzie was so exhausted by the whole experience that she was ready to go to bed for an hour. I knelt beside her bed, holding her hand, as she lay there, her tears flowing uncontrollably as she expressed her utter anguish at the thought of continuing throughout the months and maybe years ahead trying to cope with the life we now know, and the worse things that are yet to come.
This evening we both feel totally overwhelmed by the reality of what our life has become and of what we know lies ahead of us. Generally we just plod on from day to day, dealing with each challenge as it arises, but every now and then the sheer enormity of what we're facing hits us hard.... the reality that what we have today really is indeed 'as good as gets'.... at least as far as this life if concerned.
Ultimately, though, the answer to the original question is 'It isn't'. This may be as good as it gets on this earth, but we know that, one day, sorrow and suffering will cease. One day we will see this time as just a shadow in the eternal glory of our loving God and Saviour. I can't bear to even think of what the journey to that point in eternity will look like, or how much sorrow and pain we will face along the way. But I do know that God is faithful. We know that He won't let us down. We acknowledge that nothing we could ever go through could begin to compare with what Jesus went through for us as He gave His life to save us. We know, beyond doubt, that the eternal joy and peace that He offers us as a free gift will wipe away any pain and suffering we could possibly face in this world. It's that certain knowledge that keeps us going and gives us peace. Our prayer is that anyone reading this will seek and find God's peace and love for themselves. That really would make it all worthwhile. 

Monday, 7 October 2013

A Worldwide Wave of Light and Love.... Amazing!

On Thursday 3rd October 2013 we were part of an amazing worldwide wave of light. All around the world people everywhere lit a candle at 8pm (their local time) in recognition of everyone affected by Multiple System Atrophy. As the lighting of the candles moved from one time zone to the next it created a virtual wave of light that moved across the whole world.
Being part of this global event was an amazing and humbling experience for us, especially as we were privileged to receive photos from friends and family, all around the world, of candles that they had lit especially for Suzie.
At 8pm Uk time more than 40 friends met with us at St. Michael's Church in Teignmouth as we united with people far and wide in prayer for Suzie and for all those who face similar challenges. It was awesome, in the truest meaning of the word. Suzie and I personally remembered before God all of the friends that MSA has brought into our lives, and we felt a huge sense of love and unity as we prayed for them too. In particular we were moved beyond words as we prayed for those whose journey is now over, and for their loved ones who now face life without them. We were delighted to welcome two such friends into our church that evening, and we look forward to seeing them again very soon.
As someone said to us in an email the next day, "You could not fail to feel the loving arms of our Lord there in the midst of us."
That was certainly the experience Suzie and I had. Since then we have felt stronger and more positive than ever, and totally uplifted by the love we have been shown and by the enriching of our faith in our Almighty God.
The week was rounded off beautifully as we celebrated Suzie's birthday with family and friends, and enjoyed the plentiful cards, messages and e-cards that came flooding her way. Beyond all of the presents that Suzie received for herself, the best 'present' by far was seeing the total of our fundraising efforts for Rowcroft Hospice sail past our target and reach over £1250.
All in all, Suzie and I can put our hands on our hearts and say with total conviction 'God IS Good'. Of that we have no doubt.
Here are just a few of the photos that were shared with us by family and friends from around the world.

I switched on my iPad at 8.15am to find the 1st Beautiful Candle Photo
that had been sent to us by our dear friend Helen in New Zealand, 12 hours ahead of us.

St. Michael's Church Altar
From my daughter, Bek, in Bristol, Uk
St. Michael's Church, Teignmouth,

Our friend Emily, Uk

Our friend Charlotte, Uk
Suzie's cousin Judy & David, Torquay, Devon, Uk
My Mum.... unable to be there but still thinking of us.

Murray at St. Stephen's House Chapel, Oxford, Uk
Paul and Sharon in Sussex, Uk
My cousin Sue, Gary & Charlotte, in Buckinghamshire, Uk

Suzie's brother John & Donna, California USA

Suzie's sister Carol, Ontario, Canada

Final photo from Prue and Bernie in Canada. Perfect!