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Monday, 29 July 2013

Counting our Blessings

During the past few weeks I have made a number of 'online friends'.... people who are going through a similar journey to us and have either read my blog or have made contact through one of the Facebook MSA support pages. It's so good getting to know other people who really understand what our life feels like, and extremely humbling to meet those who are further down this road and facing even tougher challenges than we are. The sense of shared love, support and unity is profound, and I am deeply moved as I pray for these friends. Throughout the various messages and comments that have been exchanged I've noticed that two particular themes seem to recur frequently.... They are 'Take one day at a time' and 'Don't lose sight of your blessings'. 

When you're living every moment of every day with a serious and life changing illness, whether as a patient or as a carer or loved one, it's so easy to become completely engulfed by the illness and its profound impact on your life. Inevitably everything Suzie and I ever do is always totally dominated by her illness, simply because it affects every aspect of our life. Because of this, and almost without realising it, we find we have slipped into the situation where virtually every thought and every conversation we have, whether with each other or with our friends and family, is centred on the MSA, or the cancer, or Suzie's symptoms, limitations, prognosis etc. It's so hard for us both, but especially for Suzie, to see our lives in any other context than the illness, and to see anything at all beyond the sadness of what we've lost and the fear of what we know we will have to face as the illness progresses. It takes a conscious decision and a huge amount of effort to stop this process in its tracks and to focus on the fact that, despite it all, there are still many good things in our life.

The advice St. Paul gave to the Philippians in his New Testament letter remains good advice for us today. "Always rejoice in the Lord!.. Don't be anxious about things; instead pray about everything.. Fill your minds with beauty and truth. Meditate on whatever is pure, whatever is lovely, good, virtuous and praiseworthy." (Paraphrased from Philippians Ch.4 v.4-8 - Click on the link to read the full text.)

We may not be able to change what we have to face in life.... but we can change how we face it, and how we feel as we face it, by choosing to fill our minds with all that is good and lovely. We can choose to focus on all the good things that life still has to offer, and thank God for them, no matter how many 'bad' things threaten to overshadow them.

I want to make every day as special as I possibly can for Suzie. I want us to be able to look beyond this devastating illness and to see the beauty that can still be ours. I don't want us to be so crushed with grief and fear of what we will have to face tomorrow that we lose sight of what we still have today. I won't let the pain, sorrow and despair we feel rob us of the joys and pleasures that can still be ours if we look hard enough for them.

I'm always very conscious of the fact that the life we live today will become the memories we have tomorrow. Please join with me as I pray for God to help us make lots of good memories which we will be able to treasure in our hearts and minds forever. Meanwhile, some photos of "today's" blessings....



Our lovely garden
A beautiful view to wake up to........
.... with our Feathered Friends to greet us!


Days out enjoying the stunning scenery of Dartmoor........



....with the local residents.
 


Out and about again after 3 weeks at home.... Things are looking up.
Sunshine and fresh air.

Beautiful! Thank you God.

Tuesday, 23 July 2013

More Medical Miseries and Mysteries

Infection? Side effects from combinations of medications? Withdrawal of chemo?  Further complications of existing illness? Yet another new illness? Suzie's recent health blip (see previous blog entry) has now been going on for more than two weeks and, guess what.... the Doctor's don't know what is causing it! Tests have ruled out all of the most common causes of gastric infection, but there are many other things it could be. The trouble is that we have too many medical issues going on at once, and at least two of them are rare enough that I'm told even the 'specialists' are seeking advice from experts further afield who have more experience with such things as Multiple System Atrophy, Primary Peritoneal Cancer and Paraneoplastic Syndrome.

We had a long phone call from the Oncologist today who reported that Suzie's recent CT scan showed no sign of the cancer or the fluid that had previously been present. Her only potential cause for concern was that Suzie's blood test last week had shown a spike in her CA-125 marker level. (This is what they use to monitor the presence of the cancer.) Obviously, with the recent symptoms Suzie has suffered, we have both been worried that the cancer may have spread to other areas, and this latest blood test has only increased that concern. There are other things that could have caused this, not least, inflammation caused by her digestive upset, but this can't be ascertained until these symptoms have cleared up.... There is also the possibility that she has developed a reaction to one or other of her more recent medications, but if so, which one? And should she stop taking them? Our GP has never treated anyone with MSA before and  so can't possibly advise us on that. There are just so many possibilities and so many different medical professionals, each of whom holds just one tiny piece of the jigsaw puzzle that makes up the complete picture of Suzie's illness.
Meanwhile, I feel like I'm looking at all of the pieces of the jigsaw but they're all so muddled up that I can't make sense of any of them. As always, I'm desperately trying to do what's right and best for Suzie but never quite managing to convince myself that I'm achieving that goal. Suzie, on the other hand, is just so fed up with it all. New concerns about her health and her future collide with her ever increasing depression and frustration caused by her limitations, boredom and fatigue. Add all that to the fact that she is now feeling more unwell than she ever has done, even when she was going through the chemotherapy.... and the result is a very sad Suzie.

So.... Where's God in all this? I think the answer to that can be found in a Bible verse that I was 'given' recently:"We have troubles all around us, but we are not defeated. We do not know what to do, but we do not give up the hope of living. We are persecuted, but God does not leave us. We are hurt sometimes, but we are not destroyed."   2 Corinthians 4:8-9
This is the faith to which we cling. God is God, and that's all we really need to know. We may be confused and bewildered, and sometimes downright terrified, but God isn't. That really is worth holding on to. We now just wait and pray.... I'll be back soon to report on the answers. 


Suzie, trying to stay cheerful

 


Sunday, 14 July 2013

The Weight of Responsibility

Suzie has been rather unwell this week.... Not seriously ill in a worrying way, but a bit queasy and nauseous with an upset digestive system. That, in itself, has been hugely tiring and draining for both of us, with all the extra energy needed to cope with this problem. Suzie has felt pretty weak and washed out, generally fed up with it all, and, obviously, reluctant to go anywhere other than essential appointments. I've been tired and unable to accomplish any of the tasks I'd hoped to get done, partly because I just don't have the mental or physical energy to get on with them, and partly because I can't get started on anything that needs my concentration knowing that Sue is likely to call me at any time.... And with her current problems, if she calls me, she needs me NOW, not in a minute when I've finished what I'm doing!
Something that this week has done is to reinforce the immense sense of responsibility that comes with caring for a loved one. When someone so very precious to you is seriously ill with MSA, cancer or any other chronic illness, it's a huge responsibility for the carer to constantly monitor their symptoms, evaluate new symptoms as they arise, and to make accurate judgements about if and when medical assistance is needed. This had already been brought home to me last December on that dreadful night when Suzie's breathing problems hit crisis point. That agonising, heart-stopping feeling that engulfed me when it became clear that I should have acted much sooner than I did and that Suzie was very dangerously ill........ That memory is never very far away. 
What Suzie has had this week is most probably just a bit of a 'tummy upset'. But could it be something more serious? How long should we let it go on before deciding that it needs proper medical intervention? What other symptoms might indicate that we should be calling the Doctor? Am I being paranoid thrusting a thermometer into Suzie's ear to check her temperature every time she says she feels a bit warm? Obviously we don't want to be pestering the Doctor every time Suzie is a bit under the weather, but neither do I ever again want to feel the pain of knowing I had put her life in danger by not calling for help sooner. 
When you love someone so very much their safety and well being take on an immense sense of importance and priority. Inevitably, the weight of carrying the primary responsibility for that safety and well being is equally immense. Maybe it's something that will get easier in time.... Or is that just me being optimistic?

Wednesday, 10 July 2013

MSA, OCD, Anxiety and Exhaustion

It's 1.15am and I've just come back to bed after trying to settle Suzie again. Why do fears and anxieties always kick in with a vengeance just when we really need to be sleeping? Suzie and I both suffer from Obsessive Compulsive Disorder or OCD, although it affects us in different ways. Mine is dominated by security and safety, order and neatness, and numerical patterns (in particular, things having to be in even numbers). I frequently have to get up in the night to check that the cooker is turned off or that the doors are locked or the taps turned off properly. (Each time checking things a certain number of times and in a certain sequence, of course). Neatness and symmetry aren't choices I make just because it makes things look better.... They are compulsions that are impossible to resist. If you look in my kitchen cupboards you would see all of the tins and jars neatly lined up with their labels all facing the front, all the mugs with their handles facing the same way, all the cutlery neatly arranged in the drawer. On the table the place mats and coasters will always be straight, symmetrical and equidistance from each other and books on the shelf will be arranged in size order. For me to try and walk away leaving any these things in anything other than perfect order and neatness would produce the same level of anxiety as if someone was holding a knife to my throat. When Suzie and I have to go out it can take half an hour or more of repeatedly going back to check things. It would be pretty near impossible for me to go out and leave the house without someone with me to 'verify' that I had checked everything thoroughly.
Suzie's OCD is far more of the 'unwanted thoughts' type. For her, this is also much worse at night. Words and images come into her mind that are more dreadful and abhorrent than I can describe, and the distress caused by them is unbearable. She also has totally irrational fears about safety and becomes obsessed with vivid mental images of imagined dangers, no matter how unlikely or even non-existent these perceived dangers really are. She needs repeated and persistent gentle reassurance and comfort.
We have both found that these problems have become much worse since Suzie's MSA and cancer were diagnosed, and especially since her mobility has become so badly impaired. Suzie feels totally helpless and vulnerable, which exacerbates any anxiety related disorder. I feel powerless to alleviate her fears, drained by constantly battling my own anxiety and totally exhausted. Having started getting us both ready for bed at 10.30pm I lay here now, over three and a half hours later, wide awake, with my heart racing and my mind buzzing.
People keep telling me I need a break. But how do you get a break from this? How would having a paid carer to come in and get Suzie ready for bed at 9pm do anything to relieve what we're coping with right now? What kind of a 'break' would it give me to have to face the anxiety and ordeal of having to go out without Suzie? Only a couple of years ago, before she became ill, Suzie was flitting in and out all day every day and I was staying at home, often going from one week to the next without even leaving the house. In the last few months coping with all of the appointments, home visits and constant interaction with other people has been almost as difficult for me to deal with as the illness itself.
People ask me how I can lie in bed writing this Blog in the early hours of the morning  when I'm so desperately exhausted. Maybe it's my way of trying to 'file away' all these thoughts and fears so that I can clear my mind and eventually turn off and get to sleep. Mind you, I will have to re-read this at least four times to make sure I haven't made any mistakes. 
I'm just so glad that Suzie and I both share our faith in God. Sometimes there is no way to get through these long, exhausting hours other than prayer. Knowing that God is with us makes it possible to carry on. 
One thing that we do both find relaxing is the occasional session of reflexology that we are given by a lovely therapist from Rowcroft Hospice. This is just one more aspect of their Palliative Care support, and it's very gratefully received. She will be coming here tomorrow afternoon for our next session.... And I might just fall asleep while she's doing it!!

Friday, 5 July 2013

So...... Here We Are Now.

As I look back at my blog so far I pause to reflect on how we got to where we are now.... During the last 18 months we'd spent 12 months going through one medical test after another and ruling out numerous diseases. Suzie's illness had hit crisis point in December, resulting in two weeks in hospital over Christmas, and then, in January this year we'd had the diagnosis of two totally unrelated yet equally rare, life-changing, life-limiting illnesses within the space of three days. Primary Peritoneal Cancer and Multiple System Atrophy.
Our lives have been turned upside down and changed beyond all recognition. The last six months have been a whirlwind of medical appointments, tests and procedures. We've been looking towards the completion of the chemo as a sort of 'end point' after which things would become a little easier and a lot less hectic and medically orientated. That isn't quite how it has worked out though. Looking at my diary we seem to have something in it every day for the next two weeks. Various blood tests, scans, x-rays and consultations to assess the impact the chemotherapy has had on the progression of the cancer and also to monitor how well Suzie's body and blood levels are recovering after the treatment. Then we have other appointments with dentist, optician etc. that had been put on hold until chemo had finished, and, eventually, we will be going back to the Neurologist for her to pick up where she left off six months ago. 
Back to the Neurologist.... That phrase hits me hard as I find myself faced with the painful reminder that the cancer was a comparatively 'lesser' problem that was thrown into the equation only a few months ago, and that, even having passed the all-important finishing post of chemotherapy, the more serious and major issue of the MSA still remains, progressively debilitating and untreatable. We have no idea how much of Suzie's deterioration in the past few months has been caused by the cancer and/or the chemotherapy, and how much has simply been the MSA continuing its relentless destruction of our life. Either way, we realise that we still have a very long and hard road ahead of us. 
Over recent weeks, as we have had to adapt to Suzie's ever increasing care needs, inevitably more medical professionals have become involved to assess us and provide/suggest what adaptations we may require. I had no idea there were so many departments and so many people who deal with these things. I've had advice and information given to me from various different sources and, if I'm honest, I must say I'm finding it quite tough wading through so many leaflets, forms and phone calls. So many of the questions I'm asked in these forms and phone calls overlap and I have often found myself duplicating the information I give, but receiving different responses, advice and instructions as each of the agencies involved looks at our situation and Suzie's needs from a slightly different perspective. Sometimes I feel like I'm drowning in it all and struggling to keep my head above water. I want to make sure that Suzie has everything she needs and I feel a huge weight of responsibility as I work through all the paperwork, trying to make sure I don't miss anything vital that I should be doing to improve Suzie's well-being. Our GP has been great and is trying to get someone who knows the system to co-ordinate all the different aspects for me.
One very precious and most valuable oasis in all this is our regular visits from Lynne from Rowcroft Hospice. When she visits she seems to bring with her a breath of calm and genuine care into our home. We have had contact with various people from the Hospice and we gain a great deal of support from the Palliative Care that they offer. More about them in my next post.
Time now for me to get some much needed sleep.
I will leave you with some photos of Suzie, including some of her supervising me in the garden. She has always been a keen gardener, and being unable to do it any more is one of the many great sadnesses this illness has inflicted on her. 
I have never been a gardener.... But Suzie is determined to make me into one!! 


A Welcome Afternoon Out (This one is NOT our garden, just in case you wondered!!)
Suzie Inspecting the Garden





Pointing out the weeds I'd missed!
"Can I lean over and smell this flower without falling into the bush????"
Just Posing!







After all my efforts at gardening it's time for me to get my own back and get Suzie doing some housework!!

Tuesday, 2 July 2013

May 2013: Chemotherapy.... Slow, Slower, Stop!

With Suzie's cancer and its treatment having taken priority over everything else we were eager to get to the end of the chemotherapy so that we could get back to addressing the more debilitating problem of the MSA. Everything had been going so well with the chemo until, all of a sudden, we hit a 'road block'. On the day before Suzie's 4th session of chemo was due we had a phone call from a nurse on the Oncology Unit. She told us that the results of Suzie's latest blood test had shown that her blood platelet levels hadn't recovered sufficiently and so the chemo would have to be postponed for a week. We were to book another blood test for the following week and provisionally reschedule the chemo accordingly. This was disappointing, but we were told it was nothing to worry about. A week later all was well again and so the chemo went ahead.
Three weeks later, on the morning of her 5th treatment, we had another phone call.... Need I say more? Everything had to be re-booked again, and we were now two weeks behind schedule. With the completion of treatment so nearly in sight we couldn't help feeling like, every time we got a step nearer, someone was moving the 'finishing line' further away.
The treatment went ahead a week later, but three weeks down the line, on the evening before Suzie's 6th and final chemo session was due, the phone rang. We were almost afraid to answer it, but, of course, we did.... and, of course, it was the same problem yet again. Although we had half expected it, still it was a bitter blow. As the old song says 'The longest mile is the last mile home', and that certainly seemed to be the case for us.
We resigned ourselves to yet another week's wait before we could finally reach the last session of chemo, but we were knocked sideways when, a week later, we were contacted again to say that the problem hadn't resolved itself. Previously Suzie's platelet level had been about 75 (it needed to be 100 for the chemo to be given), but, each time, an extra week had been sufficient for this level to increase. This time though the figure had been 71, and, after a week, it had only gone up to 76. It seemed Suzie's bone marrow was just too weakened and worn out to replace the cells that were being wiped out by the chemo.
After an agonising weekend we received a phone call from the Oncologist who said she was cancelling the final treatment completely. She said it would be many weeks before Suzie's blood would be ready to have any more chemo, but she was fairly confident that the five sessions she'd already received had achieved the desired effect anyway. It was a strange feeling.... We had waited so eagerly for that milestone moment when Suzie's final session of chemo was completed, and suddenly we were being told that this momentous event had actually passed five weeks earlier without us even knowing!!
So.... with the cycles of chemotherapy now finished, that would surely mean that our lives could get back to some sense of normality and not be quite so dominated by hospitals and medical procedures?? Wouldn't it??
Apparently not......

Monday, 1 July 2013

April 2013: One Day at a Time

Suzie's chemo was now past the half-way mark and recent blood tests were giving us cause to be optimistic that it was having the desired effect on the progression of the cancer. The symptoms of the MSA had become significantly worse when her chemo had first begun, but the deterioration appeared to have stabilised. We knew it was 'uncharted water' as far as the combination of her two illnesses was concerned, in particular with regard to what effect, if any, one was impacting on the other. MSA is such a rare illness that most medical professionals may come across it only once or twice in their whole career. Add into the equation the apparently equally rare form of cancer and the result is that there are far more questions than answers. There just didn't seem to be any documentation that I could find of any other case where these two illnesses had occurred simultaneously in the same patient.
It was possible that the chemo could be causing some sensory and mobility problems, in which case we could be forgiven for being optimistic that there might be some degree of improvement when the chemo had finished. Equally it was possible that all of the decline we'd seen was purely down to the progression of the MSA and, as such, would continue unabated.
Only time would tell.

 
We were coping from day to day with the physical restrictions and demands of Suzie's illness but she was having a much harder time coping on an emotional level. Every day she would get very upset and distressed about the many things she can no longer do, and extremely fearful about what the future may hold. The progression of MSA is devastating and relentless, and Suzie was finding it very difficult not to dwell on the challenges that she knew we would have to face as the illness progressed. She constantly felt extremely vulnerable, partly due to all that was happening to her body, over which she had no control, and partly because her reduced mobility meant she knew she would be unable to 'escape' in an emergency. This vulnerability was manifesting itself in extreme anxiety over all sorts of perceived dangers, real or otherwise.

We were getting out and about as much as we could and enjoying the beautiful surroundings where we live. We were also able to enjoy the hospitality of many friends who had invited us to their homes for coffee. We had a lovely home and we tried, whenever possible, to focus on our many blessings rather than our daunting and exhausting challenges.
 
'Suzie said we needed to go shopping
for a few basic essentials!!'
Above all there were three main things that kept us going....
Our faith in a loving God who was in control of our situation;
The love and support of our wonderful family and friends;
And our sense of humour!
Yes, even between the most dire and dismal of days that we had to face, there were times when we could still find things to laugh about.