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Monday, 27 January 2014

God's Timing....

What a week! Suzie was admitted to Torbay Hospital on Thursday as a 'Medical Emegency' on the instructions of her Oncologist. We had a phone call from Dr. L who told me to take Suzie to the A&E department and she would be admitted so that the necessary scans and procedures could be carried out without further delay. It sounded straight forward enough, but the reality was not quite as simple as we'd expected. We had a gruelling few hours going through the A&E system, which was manic. As we sat in the waiting area, on one side of us was a 6'6" Police Officer attached with handcuffs to a prisoner, and on the other was a woman who spent most of the time having a very loud phone conversation in which she gave a detailed account of her medical history, including a graphic description of the contents of a drainage bag that was attached to her stomach and in full view of us all. Wherever we looked there was someone bleeding, vomiting or collapsing on the floor, and feral children who didn't look ill at all and were charging around without a responsible adult in sight. It was a truly harrowing experience which lasted nearly 6 hours in all. During this time Suzie was assessed by a nurse and had blood tests and a chest x-ray, and we were eventually moved to a cubicle where she was examined by various other medics. One very nice young Doctor remembered us from when Suzie had previously been admitted just over a year ago. It was nearly 10pm before she was moved to the EAU ward and settled in a comfortable bed. She was told she was on the list to have a scan the next day. I finally got back home at nearly 11.30pm.

The next day Suzie was moved to the respiratory Ward, but there was no sign of any scan. It's now Sunday night and she still hasn't had any further treatment. She is fairly comfortable, although her breathing has given us a few scary moments, but it seems that they're reluctant to do anything until the Oncologist is back in the loop. (She was away on Friday and over the weekend). Something is holding up the all-important CT scan that will allow the other scans and surgical procedures to go ahead, but we don't yet know what is causing the delay. 

Suzie is coping ok and is delighted that I am being welcomed at her bedside without restriction. The staff are lovely and they're taking good care of me too! They are very understanding of Sue's extra needs and they seem to make extra time to reassure her. The ward is a bit noisy and hectic, but she's getting used to the fact that she can doze on and off when she wants to so it doesn't matter if she gets disturbed at night. 

I bring our iPad in with me each morning so we can look at the news, play Scrabble or 'socialise' on Facebook.... Suzie is particularly encouraged to read all the positive and loving comments that people write for us, and to see all the 'Likes' she gets on my photos of her and my status updates about her. It gives her a wonderful sense of being loved and upheld. We also read emails together and Daily Bible readings, and I read encouraging verses of scripture to her. Suzie stays in bed all the time and sleeps a lot, and I'm just making the most of sitting by her bedside doing very little most of the time.

She had a lovely surprise visit today when my daughter turned up at the hospital. She was only making a flying visit and had to make the two hour drive back to her home this evening, but it made Suzie's day that she had gone to the trouble of coming to spend an hour with her.

Hopefully we will have something positive to report regarding her treatment sometime during this coming week. Meanwhile we just trust in God's perfect timing. We thank Him that Suzie is having this opportunity to adjust to being in hospital and to rest prior to her treatment. I'm sure these few days of waiting and seemingly 'doing nothing' are actually working towards preparing Suzie physically and emotionally for the treatments and surgical procedures that she will be facing during the coming weeks and months. God knows what He's doing and His timing is always perfect. We rest in the secure knowledge that He has planned our journey with greater accuracy than we ever could.

Thank you for your continued love and prayers.

God bless.

Friday, 17 January 2014

Nothing's ever simple with Suzie!!

Just a quick update....
This week hasn't panned out quite the way we'd expected it to and it seems that the plan of action for Suzie's treatment is rather more complicated than we had thought. The phone call we received today from Suzie's Oncologist, Dr. L, revealed that she and other medical professionals involved in Suzie's care have been discussing her case and combining their various fields of knowledge and expertise in order to find the safest and most beneficial way to move forward with her treatment. 
It's been decided that it's too risky to go ahead with the chest drain until after a CT scan has been done because, it seems, there may be additional complications beyond the build up of fluid causing problems. The upshot is that Dr. L is going to ensure that a CT scan is done this coming week, either as an outpatient, or, if this isn't possible, she will have Suzie admitted. The results of this will be analysed and the treatment/procedure will subsequently be carried out asap.
Regarding the chemotherapy.... That is all set up and ready to start as soon as the other medical procedures have been carried out. It can't be started beforehand due to the problems Suzie had last time with her blood platelet levels not recovering, as this would make it too risky to carry out any surgical procedures.
Suzie is understandably very apprehensive, especially about the prospect of staying in hospital and being unable to make herself understood when she needs anything or if she's asked to do something she can't do. We're trying to focus on the hope that, this time next week, much of this will be behind us and that Suzie will be on her way to feeling a lot more comfortable than she does right now.
I'll let you know....

Tuesday, 14 January 2014

The Journey Continues....

Having just read through my last blog entry I can't believe how things have developed in the last few weeks. Suzie's anxiety issues that were so acute a couple of weeks ago have settled down considerably, and the increased dose of her sleeping pills seems to be having a beneficial effect some nights. We have had a couple of nights during the last week or so when we've managed a good four or five consecutive hours of peaceful sleep. It's amazing what a difference that makes to Suzie's strength and capabilities the following day.
On the physical side of things, there have also been some significant developments. Suzie's breathing has been deteriorating for a number of weeks, but has been giving more rapidly increasing cause for concern in recent days. She has also developed some worrying and unpleasant digestive problems which are causing severe abdominal pain and bloating, along with decreased appetite and 'other problems'. The degree to which her abdomen is distended is having a significantly detrimental effect on her ability to sit comfortably, as well as decreasing her ability to move, and also making it infinitely harder for me to lift her (eg. from her chair to her bed, or whilst dressing her etc.)
As is so typical of God's perfect timing, we already had a follow-up appointment with the Oncologist scheduled in for yesterday, and so she was able to assess the situation. I was encouraged to find that she wasn't surprised to see the swelling of Sue's abdomen and seemed confident that it was being caused by the cancer and could be treated. (Our fear had been that it was a symptom of the MSA getting worse, and would therefore have been progressive and untreatable.) The Oncologist confirmed our suspicion that the cancer activity was continuing to increase but she was very reassuring and immediately set about a plan of action to address all of the presenting issues.
It's likely that Suzie will be admitted to Torbay Hospital for a night or two, probably later this week, to have an ultra-sound scan of her chest and abdomen, for the fluid to be drained, and to see if there's anything else that might be adding to the problems.  Another course of chemotherapy, which will be more prolonged and intensive than the last one, will be started as soon as possible and the Oncologist is hoping that she will be able to use an oral chemotherapy drug. The main advantage of this for Suzie is that it could be administered at home over a period of 10 consecutive days in every 3 week cycle and would necessitate only one trip to Torbay in each cycle. As long as Suzie can tolerate it, this will continue indefinitely as required in order to keep the cancer under control. The problem with the last treatment was that the cancer came back as soon as the chemo stopped. This regime should be more effective, but it might also cause different problems. We can only hope and pray that its benefits will outweigh its side effects. At some point Suzie will also have to have another CT scan to check if there is anything else going on.
Obviously, we would dearly long for none of this to be necessary. Suzie is particularly dreading the fluid draining procedure and the stay in hospital because it's likely that the staff may not understand her particular difficulties with speech and movement etc. caused by the MSA. But it is necessary, it was inevitable that it would become necessary at some point, and we're actually feeling relieved and thankful that they're going to get on with it sooner rather than later. We were dreading the thought that things might drag on, with Suzie feeling more and more unwell, and then, just when the weather gets better, her having to start on a course of treatment and procedures that would wipe her out, only to have her feeling better again just in time for next winter! At least this way there is every chance that things will be stabilised and she will be feeling a lot better and more comfortable by the time summer comes, and then we can get out and enjoy some quality of life. That is our hope, our goal and our prayer. 
The Good Lord knows what He's doing and we put our hope in Him. He has never promised that we won't have troubles in this world, but He HAS promised that He will be our strength, and that His love and grace will be sufficient to sustain us through it all. 
We have every confidence in that promise.... And that is what will enable us to face what the coming weeks hold. God bless you all. 

Friday, 3 January 2014

New Year, New Phase, New Support for Carers

I think Suzie hit the nail on the head the other day when she said she felt like she had moved into a new phase of her illness. We are now a few days into the new year, but already it feels like we're a million miles away from where we were only a few weeks ago. Suzie's ability to move has decreased significantly and she is needing more and more help with every aspect of day to day life eg. washing, eating, moving, blowing her nose, communicating etc. etc. In recent days we have also seen a surge in her anxiety levels which has led to a number of very fretful days, interspersed with days where sheer exhaustion causes her to sleep for hours on end, barely able to open her eyes long enough for me to give her a few mouthfuls of food at lunch time.
Unfortunately, these periods of prolonged sleepiness don't extend into the night, and we have seen an increase in our night time disturbances. If you imagine for a moment the implications of being totally unable to move, turn over, or even just change position slightly in bed, it's no wonder my poor Suzie is getting so much pain and discomfort all through the night. Add to that the muscle spasms in her feet caused by the MSA, which are excruciatingly painful and relieved only by massage and passive stretching exercises, as well as the pressure on her coccyx from lying on her back all night.... it's really no wonder we're not getting more than an hour's sleep at a time. When Suzie does manage to fall asleep she's often disturbed by distressing dreams and night terrors, and needs a lot of comforting and reassuring. These disrupted nights often end prematurely either when Sue can stand it no longer and asks me to get her up, or when I give up hope of getting any sleep and get up and make some coffee (at which point Sue usually dozes off again!) It breaks my heart more than words can say because she really doesn't deserve any of this.
A telephone call this afternoon from our Rowcroft Hospice Palliative Care Nurse instigated a consultation with our GP, the result being that Suzie has now been prescribed some medication to help with the anxiety, and her sleeping tablets have been increased.
Rowcroft continue to be our lifeline when times get tough, and in return we continue to try to raise awareness of their services, as well as funds for their on-going work. If you haven't yet looked at our page, please do so by clicking on this link:
Suzie's 'Help our Hospice' Page. All donations are very gratefully received. 
As Suzie's sole carer I feel the responsibility and isolation acutely, and I gain an immense sense of support and encouragement from my contact with other carers, mostly via the internet. With this in mind I have set up the 'Caring Companions Uk' Facebook group as a way of extending this support to other carers of people with all illnesses. I welcome any new members who need, or can offer, online friendship, encouragement and support. If you are interested please click on this link and click 'Join Group'. 'Caring Companions Uk'.
With a very uncertain year ahead we rely ever more fully on the unfailing love of God to guide us and support us through whatever this year may bring. We've survived the last year and we've lived to tell of the blessings we've received. We have every faith that this coming year will bring nothing that we can't handle with the grace of God upholding us. Please continue to walk alongside us as we face whatever 2014 may hold.
May we also offer our best wishes for a happy new year to each and every person who is reading this now.  May your year be filled with God's richest blessings and may your dreams come true.