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Sunday, 29 December 2013

Christmas Memories to Treasure

Before the lights on the Christmas tree go off for another year, I'm taking a moment or two to reflect on the memories that we've made over the festive period.
 We had a very special time at home with our family. My son and daughter, Jay and Bek cooked a most beautiful and extravagant meal for us all at lunch time. They prepared an amazing array of vegetable dishes and various side dishes and sauces, along with roast turkey (contributed by my parents), followed by a selection of desserts (provided by my sister). Her Bailey's Cheesecake was a hit, as usual, and the wine flowed freely all day and into the evening thanks to Auntie B.
Everyone did everything they could to ensure that the day was enjoyable and stress-free for Suzie, and as restful and relaxing as possible for me, not least my precious niece who always makes me feel very special and loved! We are incredibly blessed to be part of such an amazing and caring family, and we thank God for each one of them. 

Suzie's new wine glass!
I have to say Suzie coped remarkably well with having 10 people in the house and I think she enjoyed the diversion from our usual routine. She had a lie down late morning (as she usually does these days) but then stayed in the thick of it until bed time. She didn't even have her usual afternoon nap.... I think she was afraid she might miss out on something! We shared gifts with each other, and Bek and Jay gave Suzie, amongst other things, a festive glass for her wine which has an integral straw! (See photo)
We all enjoyed a lovely day of fun and togetherness, with a few light-hearted games and my annual music quiz that has become a family tradition. My 'soon to be' brother-in-law impressed us all by his comprehensive knowledge of Abba music, and, as usual, my efforts to include some modern music fell short by about 20 years!!  
Precious memories were made, and will be treasured for ever. God is good. No matter what we may face as we continue along this journey, we can hold on to these beautiful memories and we can count our many blessings.

Sunday, 15 December 2013

Looking back, and looking forwards....

Looking back....
It was a year ago tonight that concerns over Suzie's health stepped up a gear, and the events that subsequently unfolded made us realise our lives had changed forever. When we went to bed on December 15th 2012 we could never have imagined what the ensuing days, weeks and months would have in store for us. Throughout the long hours of that sleepless night that I'd spent trying to comfort Suzie while she was awake, and listening to her every breath during the brief and sporadic moments that she slept, I had no idea that just a few hours later we would be in hospital facing the heart-breaking realisation of just how seriously ill she really was. That night seems like a lifetime ago now.
During the 12 months since then Suzie and I have experienced so much. We have faced pain, grief and fear of a magnitude that we would not have thought possible. We have been through tunnels of utter darkness and despair. We have learned a great deal about ourselves, our friendships and how our faith in a loving God stands up in the face of such extreme testing. We have lost so much of what our life used to be, and yet, what we still have left is deeper, stronger and more precious than ever before. 
Suzie has mastered her iPad, which has become her link with the outside world, especially on the days when we can't get out. Every morning she reads the news on it, she plays word games with friends, she keeps in touch through emails, she uses it to get her daily Bible readings, to reminisce her way through all our photos, and to type her life story. She 'socialises' every day with her friends via Facebook, which has become a lifeline enabling her to remain 'connected' with people. This is particularly vital now that she is no longer able to converse on the phone. Many friendships have been renewed and enriched by this regular contact and it has greatly reduced the sense of isolation that her illness would otherwise have caused. She just loves it when friends 'Like' my status updates and photos of her (and Millie!) - Suzie embracing technology.... Who would have thought it??!!
I've also learnt new skills. I've learnt how to push a wheelchair around the supermarket with a pack of toilet rolls under one arm and a carton of milk under the other because they won't fit in the basket; I've learnt how to crush pills without scattering most of the resulting powder all over the worktop; and I now know exactly what to do with a denture plate and a tube of polygrip!! (I'm sure that skill will come in handy for me one day!!)

Looking forwards....
So, as we rapidly approach another Christmas, and as this year draws to a close, we can't help but wonder what the next year has in store for us. We've seen so much evidence of God's hand in our lives and His provision for our needs that we have every reason to trust in His faithfulness in the future. Our next major need is the provision of full wheelchair access to and from our front door. We are awaiting assessment by our local authorities, but we have confidence that this provision will be made before it becomes essential. 
Suzie's breathing continues to cause concern, but we have been assured that there is no immediate danger, although, in due course, the fluid that is re-accumulating in her chest will need to be dealt with. However, we will face that when the time comes. Her abilities continue to diminish so we constantly adapt the way in which we tackle everyday tasks accordingly. We work hard at her physio regime every morning to maintain as much of her strength as we can for as long as possible. Our nights are often disturbed and disrupted, but Suzie is learning to accept the fact that she may need to sleep more in the day time. Although I'm unable to sleep during the day myself, I am learning the importance of trying to put my feet up and do something relaxing when Suzie is sleeping. On our good days we will continue to get out and about when we can and to welcome visitors into our home.
We are extremely grateful for the valuable help and support that we receive from family and friends and from our contact with the team at Rowcroft Hospice, one of whom is due to visit us this coming week. Her visits are very precious to us and it's reassuring to know that we are forging this bond now, so that when the time comes that we may need more intensive help, we will already be familiar with this wonderful team. Many of our friends already know that we have sent mostly email Christmas greetings this year instead of traditional cards and we've donated the money we saved to support the work of this amazing charity. If you haven't yet seen our 'story' please take a look at our page and maybe you could consider making a small donation to help other people like Suzie.
If you could spare a moment to have a look please Click Here

So, right now, we look forward, God willing, to spending Christmas together at home this year; we look forward to the blessing of sharing this special time with such a loving and supportive family; we look forward to having a gorgeous meal cooked for us on Christmas Day by my wonderful kids, Bek and Jay; and we look forward to spending quality time with those we love so much. And now we would both like to wish you all a very happy and peaceful Christmas. Thank you for all your support.... for practical help, emails, messages of hope and, most of all, for your continued prayers. Suzie and I both send our heartfelt love to you all, and our sincere prayers for God's richest blessings to everyone reading this Blog. May the joy and hope of this Holy season bring each one of you closer to God's love, grace and perfect peace throughout the year ahead. This is my prayer for us all:
'May the humility of the shepherds,
the perseverance of the wise men,
the joy of the angels,
and the peace of the Christ-child
be God's gifts to us and to all people everywhere this Christmas time.
And may the blessing of the Christ-child be upon us always.'


"Christ is born" © Nicky Davies

Friday, 6 December 2013

Christmas is Coming......

December is upon us already and I'm pleased to say our Christmas preparations are well underway. All our Christmas shopping has been done (with a little help from the internet and from my wonderful sister!) and all plans for the Christmas Day catering are safely in the hands of my very talented kids, Bek and Jay, who cooked such a fantastic meal last year that I think it has been unanimously adopted as a regular family tradition!!
Our Christmas Greetings this year have taken the form of an electronic Greeting Card and an appropriate donation to Rowcroft Hospice, the wonderful charity who continue to be our lifeline throughout the devastation of Suzie's illnesses. If you haven't yet viewed our page please do so at this link:
We extend these greetings to everyone who is reading our Blog.
A beautiful Crib Scene made by Suzie, Bek and Jay,
nearly 20 years ago, remains a Christmas favourite.
We've made a start on decorating the house and, as usual, Suzie is the artistic influence behind all of our decorations. She may not be able to place the decorations herself this year, but she is still able to direct my efforts and create a beautiful festive feel to our home. Without her I wouldn't have a clue how to arrange everything!

Amidst the preparations for this Holy season we continue to face the relentless medical issues that are never far away from our thoughts, with the increasing problem with Suzie's breathing giving particular cause for concern. Her latest chest x-ray and the overnight Oximetry test seemed to give encouraging results, but as her breathlessness continues to worsen it leaves us with the unanswered question of what else might be causing this. A phone call from our Doctor yesterday resulted in some unexpected blood tests being done today, to be followed by a consultation and examination tomorrow, in order to investigate other possible reasons why Suzie is getting so breathless. The Doctor has also prescribed some new medication in the form of analgesic patches in order to help manage Suzie's pain. We will start them tomorrow and we'll report back on the benefits, or otherwise, in due course.

Our hope and prayer is that the next few weeks will go smoothly and that there will be no unexpected traumas to deal with. We would like, more than anything, to be able to focus our hearts and minds on the true meaning of this Holy Season as we remember the birth of our Lord and Saviour, Jesus Christ. 
May this Christmas be a time of peace and God's blessing for us all. We value all the love and prayers that are being offered for us, and we also offer our love and prayers for all our family and friends, and for anyone who happens to stumble upon our blog. May you feel God's grace and love as a reality in your own life.

Tuesday, 26 November 2013

Answered prayers - A brief medical update

Just a quick update. We spent this afternoon at the hospital in the Heart and Lung dept. finding out the results of Suzie's recent overnight oximetry monitor, and checking out her recent breathlessness. 
The good news is that her oxygen levels are within the normal boundaries and that no medical intervention is required at the moment. This is a huge answer to prayer as the thought of Suzie spending all night every night wired up to an oxygen machine was rather alarming to say the least. 
She also had a chest x-ray that showed a minimal increase in the fluid level from the previous x-ray a month ago so we are reassured that we will, God willing, get through Christmas this year without a repeat of last year's drama. One slight concern was a small patch on the x-ray near the top of her lung, but I would hope that if it was anything to worry about they would have followed it up.
We are so grateful for the love, prayers and support that we continue to be shown on a daily basis. People pray for us, email us and interact on Facebook - and that means so very much to us. We are convinced that God has answered prayers today. Thank you to our special people (you know who you are!) 
I will update the blog again very soon, but, right now, I'm ready for some sleep. Night night and God bless you all. xx

Monday, 11 November 2013


Memories are so important.... Sometimes they can be a wonderful tonic for our souls, sometimes they are painful and full of regret. Good or bad, longed for or unwanted, memories help to make our lives and our very beings what they are.
As we observe Remembrance Sunday today inevitably our thoughts are dominated by those who have suffered and died in the service of their country. We may have a glimpse of disability and suffering in our own life, but when you consider all those men and women who live with horrific injuries and lifelong disabilities, or those who have lost their lives, or their loved ones, as they have willingly given themselves for their country.... I find it very humbling. Suzie and I were so grateful to God that we were able to get out this morning and join with the hundreds of people who gathered at the War Memorial on the sea front for an act of worship and remembrance. We WILL remember them.
Memories have been dominant in other areas of our personal life in recent weeks. We've had many days of utter 'darkness', despair and endless tears as Suzie struggles to come to terms with the ever increasing number of things that she can no longer do. Her once busy, jovial and super-active life is now just a memory, and she grieves for every ability that she has lost and for all of her previously regular activities that will now only ever be memories. Sometimes remembering the 'good times' together can bring a little joy, but often it simply intensifies the pain and sense of loss.
I try to keep us focussed on what we still have, and I constantly encourage Suzie to try to continue with some of the hobbies she used to enjoy. Even if she can't do them as well as she previously did, I still believe that the act of engaging in them is therapeutic in itself, and that any accomplishment is something of which she should be proud. So I was delighted when she said she would attempt an art project. Suzie used to make framed miniatures of Pubs, cottages and various other buildings, and her work can be seen on display in numerous Restaurants, Pubs, shops etc. for miles around. She made them from scratch out of 2mm thick card and various other recycled materials (eg. a piece of old towel, when painted, makes a very convincing thatched roof!!) She did everything 'by eye' and would only ever use a ruler to cut a straight line, never to measure anything!! Suzie and her models have been featured on Local Television and in Newspapers many times over the years.
It took half an hour to get her 'set up', and we had to adapt many of her techniques as she is no longer able to use sharp scissors or a Stanley Knife as safely or accurately as she once could, and she can no longer draw very well, but she managed to get absorbed into the activity for nearly an hour, and I was so proud of her.
I probably felt the sense of achievement more than she did. For me it was a delight to watch her doing something she loved and something she thought she would never be able to do again. Suzie wasn't quite so enthused, probably because it took so much more effort than it used to, and also because she thinks that the end result won't match up to her previously exceptional standards. Again, it was the memories of how things used to be that took the edge off the joy that might otherwise have been felt. But we can gradually build on her confidence and sense of achievement as the weeks go on because I'm sure that, now she has started this project and seen some degree of success, she will want to see it through.
On a final note (just to prove that my own memory is still intact!) I do remember that I promised a medical update.... We had a phone call from the Hospital asking us to come in and see the Respiratory Consultant to discuss the results of Suzie's overnight Oximetry test. He will tell us if there were any problems with Suzie's blood oxygen levels during her sleep and, if so, what they can do about it. We now also have a wonderful Neuro-physio visiting us regularly and gradually helping us to resolve and/or manage the issues that have been causing increasing difficulties in recent weeks and months. God is good.

I'll leave you with a little glimpse of Suzie 'at work', and some photos of a few of the models that she has made in years gone by, many of which can still be found on display in various local Pubs etc. where they are admired by the many people who see them. Enjoy!

Holcombe Cottage
Dartmoor Half Way House

A Devon Cottage
The Sandygate Inn

Fairweather News

The Elizabethan Inn

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!

Monday, 30 September 2013

BBC.... Bathroom, Birthday and Candles!

Our newly adapted 'Wet Room'

Well.... The bathroom is pretty much sorted, except for a few finishing touches - and Suzie and I have both had a shower now (for the first time in a over a week so I'm sure the local neighbourhood is very grateful!!)
The new layout certainly makes things much easier and safer for us both, and we're very pleased with the end result.
Not only that, but everything also folds away very nicely when not in use so it gives us a lot more 'wheelchair space' in the bathroom for other things.

Just awaiting a few finishing touches

By an amazing co-incidence, it turned out that the very charming young man who fitted the flooring used to go to school with my kids, Bek and Jay, and is the son of the great guy that used to be Curate of our Parish Church nearly 20 years ago! It was so lovely to see him again and to see what a nice young man he has become.
It's such a small world isn't it!

Worldwide Wave of Light
for MSA Awareness Day
October 3rd 2013
So.... on to this week. On Thursday we will be supporting Worldwide MSA Awareness day with a special time of music and prayer, with the lighting of candles, to contribute towards the Worldwide Wave of Light. See previous blog entry or message me for more details and links, or you might want to take a look at this website: MSA Day 2013 

We are also looking forward to spending some time with Sue's family this week as they visit Devon for a few days.
And last but not least.... Suzie's birthday fundraising for Rowcroft Hospice has now reached £835. We are delighted at the response we've had from people near and far, and we feel sure we will reach our target of £1000 by Sue's birthday on Friday 4th October.If you haven't looked at the page yet do please take a look and consider adding a little to our efforts: Fundraising for Rowcroft Hospice. Every pound is very much appreciated by us and by the people of Rowcroft.

So that's us for another week. I hope to post some photos of our 'MSA Candles' next week, along with all those from our friends around the world. If you light a candle where you are at 8pm on Thursday 3rd October do pease take a photo of it and send it to me. 
Take care and God bless you all. 

Saturday, 21 September 2013

Stop the world, I want to get off!!

If I ever thought that our whirlwind of activity and appointments were going to ease up a bit I was seriously mistaken! The last few weeks have passed by in a blur, not least with three trips to Torbay Hospital in the space of ten days!
Firstly, an update on Sue's hospital bed.... The faulty one was eventually replaced, although not with the new model that we were promised, but at least it is in acceptable condition and Suzie finds it comfortable. It certainly makes our morning and our bedtime routines less physically demanding for me. Suzie sleeps more these days, so it's a great treat for me, when I get the chance, to sit in bed for half an hour in the morning with a strong cup of coffee and some gentle worship songs playing on my iPad, knowing that, when Suzie wakes up, I just have to press a button to sit her up to drink her tea. This is all the more beneficial if we've had a disrupted night, which is more often than not these days due to the disturbing and unpleasant side effects of her latest medication.  
Suzie's new wheelchair is providing her with more postural support than the one we had previously bought ourselves, so we're hoping that she will soon begin to feel some benefit from this. Her posture has been getting worse for some time and she is constantly flopping over to the right, often unable to pull herself back up again. Also, she can't manoeuvre herself in bed to turn over in the night, but she gets a lot of pain if she lies in one position for too long. The Neurologist is hoping that a specialist Neuro-Physio might be available locally to offer some assistance and advice. The hardest part for me is not knowing how best to help her.... How much should I be doing for her, to save her hurting herself, and how much should I be encouraging her do for herself in order to keep her muscles functional for as long as possible? The knowledge that whichever way I get it wrong will adversely affect Suzie in one way or another is soul destroying.
Next week the chaos will really step up a gear as major work gets underway on our bathroom conversion. The end result will be a Wet Room with a wheelchair accessible shower, which will, hopefully, provide me with a fair chance of being able to wash Sue's hair in the shower without soaking myself and the whole bathroom in the process!! It should make all aspects of washing and showering much easier, and safer...... I will report back in due course!!
Thursday 3rd October is Worldwide MSA Awareness Day. To mark the occasion we will be holding a short service of gentle music and prayer, and we will be lighting candles to become part of a 'Worldwide Wave of Light'. The idea is that people right across the world will all light candles at 8pm local time, thus creating a virtual wave of light as it moves from one time zone to the next. To find out more about this global initiative have a look at Sonja's story.
If you live near us and would like to join our gathering please email or ring me and I'll let you have the details. Wherever you are, maybe you could light a candle at 8pm and say a prayer for all those who are affected by the devastation of Multiple System Atrophy.... For people everywhere who suffer from the illness (including my own Suzie); for all those who care for them; for the research that is being done to try to find a cause and a cure for this currently incurable disease; and, not least, for all those whose journey through this illness is now over.
Finally, as we look towards Suzie's birthday on October 4th, I'm delighted to report that our Birthday Fundraising efforts for Rowcroft Hospice have already reached £700. We're both extremely pleased with the response so far, not only because it will help Rowcroft to continue to support other people in the future, but also because of the much needed boost it gives Suzie, knowing that her suffering is at least achieving something worthwhile. Her life has been truly devastated on so many levels and she cries a lot most days. It's heartbreaking to see her so broken and distraught so much of the time. Anything that can put a smile on her face, even if only for a moment, is gratefully welcomed with my sincere and heartfelt thanks. If anyone else would like to show their support in this way please just click on this link below and follow the 'Donate' instructions.
Thank you all so much for your ongoing prayerful support, love and friendship. It's during such difficult times as these that we really value and appreciate what true friendship is all about. Thank you and God bless you. xx 

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.

Tuesday, 3 September 2013

Suzie's Birthday

I just can't believe we're now into September!! This year seems to have flown by in a whirlwind of medical appointments, treatments, hospitals, home adaptations, therapists, etc. etc. etc.... I think that if I had a pound for every time I'd started a sentence with the words 'In a couple of weeks time when things start to ease off a bit......' I'd be a millionaire by now! Needless to say, things haven't yet started to 'ease off', but we're learning to live with it. 
In 4 week's time it will be Suzie's birthday. What do you give to someone who really wants nothing more than to be free from this devastating illness? We know that isn't going to happen in this life, but we thank God for the immense amount of help and support we are being offered, not least from our local Hospice Palliative Care Team. Rowcroft Hospice are so much more than I had ever imagined. Let's be honest.... If you asked anyone in the street what a Hospice was the chances are they would say it was a place where people go when there's no more that can be done for them. I admit, that is what I thought. But that is a million miles away from the reality. Rowcroft offer us emotional support; care in our own home; alternative therapies; and all manner of things to make our lives easier (not just for the patient but also for the carer). I can honestly say they have made such a huge difference as we have learned to face this devastating journey on which we find ourselves. 
So, in recognition of the tremendous support and help that Rowcroft give us, and in honour of the love and high esteem in which so many people hold Suzie, I have set up a fund raising page to mark her birthday. The target date is October 4th, Suzie's Birthday. The target amount is £1000. Will you help us to reach this goal, to enable Rowcroft to offer other people the life-changing support that they give us, and to make Suzie feel as Special and as Loved as she deserves to feel? Suzie is my life, my love, my world..... Caring for her is my reason for living. Please show your love and support for her and make her realise how very special she is by making a donation to this most worthy cause. If suffering this horrible, devastating illness can do anything to help ease the suffering of other people in the future Suzie will feel that her misery will not have been in vain. Donations can be made on the JustGiving website (If you would like to read more about Rowcroft you can do so here: Rowcroft Hospice. But Please make sure your donations go through the JustGiving-Suzie's Birthday Fundraising Page so that she can have the joy of seeing our target being reached) :
This is a globally trusted and secure Charity donations website, and all of the money donated will be transferred directly to Rowcroft Hospice. If you are a Uk tax payer you can also Gift Aid your donation and the HMRC will pay an extra 25% on top of whatever you give. If, for any reason, you feel unable to donate via this page please send a cheque made out to Suzie (Mrs. S. Sullivan) to us and I will transfer the money from our own account and your donation will then still show up towards our target.Thank you for your support. Please join with me in wishing Suzie a very Happy Birthday and God's greatest blessings and peace as we face whatever the coming year may hold. As an old Sunday School song proclaims.... With Jesus in the boat we can smile at the storm. God grant us a smile or two as we continue on this painful journey, seeking all the blessings that He has planned along the way. Thank you and God bless you all.