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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) : www.justgiving.com/Nicky-Davies2
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.