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Sunday, 23 February 2014

Milestones and Memorable Moments

It's amazing how some of the everyday things that we all take for granted can suddenly become huge milestone events when the ability to do them is withdrawn or suspended for a while. This morning we had one such 'milestone moment'. 
During the last few weeks we couldn't help but wonder how much of our life we would ever be able to regain. Some days Suzie has looked so very poorly, and her weakness and disability has become so much more profound than ever before. One of our biggest fears has been that I might lose the ability to take her out of the house independently. Not only does Suzie have necessary medical appointments to attend, but she also needs the joy and pleasure of having a change of scenery and a bit of 'interest' in her day. The local Council are in the process of liaising with our OT and some local builders to provide a solution to our access needs, but in the mean time we were prisoners in our own home.

Thank you Lisa, you're an angel!!
But we should have known that God would have a plan.... In response to a random comment that I posted on Facebook a dear friend of mine who has a disabled son came to our rescue with the loan of a 6' long wheelchair ramp which fits beautifully on our steps. Admittedly it's rather steeper than council's 'blanket' regulations might specify, and we still have one small step at the top to negotiate, but none of that matters to us. It suits my little 7 stone Suzie and me perfectly! We are just so grateful to have a safe way of getting in and out of the house and it has given us the precious gift of still being able to go out while we wait for the council to sort out a more permanent solution.

The smile says it all!

So, today we were able to go out for the first time in a month. It was an amazingly huge achievement and a wonderful joy for us both to get a glimpse of the life that is still out there and waiting to be enjoyed and appreciated! It was a very brief outing and Suzie has slept most of the day since we got home, but what a precious blessing!

As we move from February into March we will see another milestone.... My birthday!
I can't help but think back to my last birthday, which was a rather significant one. It was on my 50th birthday last year when we first met the Palliative Care Nurse from Rowcroft Hospice. That was the beginning of a connection that would provide a vital lifeline for Suzie and me as we have adjusted to the ever increasing difficulties that come with living with life-changing illnesses. In view of this I have decided to 'donate' my birthday this year to them.... I would like to ask anyone who would want to give me a card or a present to please make a donation to our fund raising effort for Rowcroft Hospice instead. I would be delighted to receive no cards or presents at all if it meant we could raise awareness and funds for this amazing charity. Please click here to find out more or to make a donation:
If all of my friends could save the money they might have spent on sending me a card or a present and donate just a few pounds each instead it would raise hundreds of pounds and would enable other people to benefit from the lifeline that Rowcroft have provided for us. If you're not comfortable with online transactions please just send cash or a cheque made out to Sue and I will transfer the gift directly from my own account. I do hope we can reach our target as it would make Suzie show up on the Rowcroft website as one of their top personal fundraisers. That would be such a special way for her to feel she was showing her appreciation to them. I do hope you will feel able to support us in this way. Thank you.

As a family we have another 'Milestone Moment' coming up next weekend as we celebrate a family wedding. It will be such a lovely opportunity for our family to get together and share in a happy occasion. Family members will be coming from as far afield as Lancashire and it will be the first time we have all been together for a very long time. A dear friend of ours is a very experienced HCA and has kindly agreed to care for Suzie for the day, so I will be able to relax, knowing that she's in safe hands and being well looked after.
We are seeing so much evidence of God's hand at work in our lives. Just as we get to the point when we feel we can't take any more He gives us some beautiful blessings and some positive 'Milestone memories' in the making. Here's hoping that this morning's fresh air will help Suzie to have a peaceful and refreshing night's sleep.
Please remember to have a look at our 'JustGiving' page.... 
Every little helps. 
God bless you.

Tuesday, 18 February 2014

Extremes of Emotion

God's Perfect Peace isn't found in the absence of life's troubles.
It's the calm serenity we feel right in the midst of them.

For nearly three weeks I drove to Torbay Hospital every morning, and during each of those 20 minute journeys my mind would be filled with thoughts and prayers about what I might find when I got there. Some days I would feel anxious and fearful, whilst other days I would be filled with hope and eager expectation. Some days my hopes or fears would be realised. Other days I would arrive to find things were infinitely better or worse than I had expected. On Monday of last week my hopes were as high as they could be. After having seen such an improvement in Suzie that weekend I was more certain than ever that the worst was over, for now, that a smiling Suzie would greet me, and that nurses would be planning her return home. The reality was a million miles from this expectation......
I was greeted at the door to the ward by a nurse who told me that the part of the ward where Suzie was had been sealed off due to a tummy bug. I was immediately issued with protective clothing and gloves, instructed in washing and infection control procedures, and told to stay with Suzie. If I had to leave the ward for any reason I was to go through the sterilisation procedure again when I left, and again on my return. Having had no sleep the night before and having been unwell herself that morning Suzie was totally out of it and looked really ill and frail. The lady in the bed next to her had been throwing up ever since she'd arrived on the ward, and one of the HCAs had said the previous night that she was feeling queasy. That day, for the first time, I declined their kind offer of a meal.... Somehow, sitting in a ward, surrounded by patients who were lying in their beds with their sick bowls at the ready, rather took the edge off my appetite!
As this awful nightmare of a day continued Suzie slept almost continually, occasionally opening her eyes and saying things that didn't make much sense, and I sat at her bedside just watching her and holding her hand, desperately trying to hold back the tears that kept welling up and threatening to overpower me. I gazed in bewilderment at my poor Suzie and I seriously wondered if we were ever going to come back from this.
It wasn't until later that day when I saw for myself the 'symptoms' that the nurses had been concerned about that I began to suspect that Suzie didn't have the bug at all. Having had her laxatives increased to compensate for the Morphine I realised that she was simply reacting the way she always does!! Also, she had barely eaten for days and she'd hardly slept either, so I think all these things contributed to her looking so very unwell.
As evening approached, suddenly events took a different direction. Firstly we were told that Suzie was being moved to a side room. At least this would mean I could dispense with my rubber gloves and protective apron, and Suzie would have her own 'facilities' where I could help her without having to wait 30 minutes for an HCA to respond to our buzzer. Then, out of the blue, we were told that we were to go to the cancer ward for Suzie to have her first dose of chemotherapy. In the light of how the day had been up to that point it didn't make any sense, but we were certainly not going to question them! I got Suzie into her dressing gown, into her wheelchair, and off we went. She had her chemo, we made our way back to her 'new' room and I got her comfortable and settled for the night. I finally got home myself at about 11.30pm
I was asked to be at the Hospital early the next morning so that the chemo nurse could go through the procedure for administering the rest of Suzie's treatment at home. There was rather more to this than I'd realised and I was given comprehensive guidelines that I must follow. I was issued with protective gloves, a bright yellow container labelled 'Contaminated Cytotoxic Waste'  and I was given instructions on the required procedure for storing the 'highly toxic' used syringes, along with any tissues that come into contact with the drug, until they can be returned to the hospital for disposal. I also have a special 'emergency pack' containing protective clothing, chemical crystals, absorbent sheets and cleaning tools that need to be used if any of the drug gets spilt, vomited or accidentally deposited anywhere!! My kitchen suddenly looks like a chemistry laboratory!

Home at Last.
So, at last, we're now home.... Exhausted and very much in need of some time of quiet and space as we recuperate and readjust. I've spent the last week chasing up and fighting for all the aspects of help and equipment that we were promised as part of Suzie's discharge from hospital, but which didn't materialise. This was an added stress that I could have done without, but it's all sorted now so I won't dwell on that. We're ok, but things are considerably tougher to cope with than we had expected. Night times are the hardest. During her stay in hospital Suzie developed a pressure sore on her back which is making it almost impossible to find a position where she is comfortable enough to sleep for more than half an hour at a time. Most nights I'm up and down all night moving her, turning her, repositioning her pillows or anything else I can think of to try to make her comfortable. As soon as we find a position that works you can guarantee that will be the moment she decides she needs to go to the loo!! This continues throughout much of the day too as she is spending a lot of the daytime in bed as well. I'm trying to get her up for short periods but she's unable to stay awake in her wheelchair for long. I've managed to get her into her recliner chair a few times, with the tv on, where she can doze on and off as she needs.
We have various medical people coming and going, which is necessary but is really taking its toll on both of us. It's so draining and disruptive to have people coming in and out, and surprisingly Suzie is finding this even more difficult than I am. (I'm the social phobic who is usually most uncomfortable in company!) More than once she has told me to 'take them away', by which she means she wants me to take them into another room and leave her in peace! I'm so glad we declined the offer of having carers coming in and out four times a day. This past week has shown us just how stressful and intrusive that would feel for us. We really need and relish all the quiet time we can get, and our day is totally flexible in order to achieve this. Getting up, washed, meal times, going to bed etc. change from day to day depending on how Suzie feels from one day to the next. From what I've been told by friends who have had experience of them, 'outside carers' are not able to be flexible, they are certainly not predictable, and the amount of time they are allocated is barely enough to pass the time of day.   
I just thank God that I have the strength and ability to give Suzie the personal care she needs. I love caring for Suzie. Washing her, dressing her, combing her hair and generally making her look special is a joy and a pleasure that makes everything else bearable. It is a tender expression of love and a special quality time of unity that is a very precious part of our day and our relationship. If I ever have to have that taken away from me it would break my heart. There are many other aspects of her care that I would dearly love to have help with or to have a break from, but it seems my needs don't tick the right boxes! 
So, amid the exhaustion and pain, we continue to take one day at a time and we continue to count our many blessings. In the last week we have had the offer of two strong men, with a wheelchair accessible vehicle, from our dear friends at a local retirement home, in order to enable Suzie to get to a necessary appointment. We have also been loaned a ramp which we are hoping will enable us to get out and about when Suzie's feeling a bit stronger until such time as we can get a permanent wheelchair access solution to our house. Even this morning we have had a visit from our builder who met with the local council official here and suggested to him the exact solution that we had been hoping for but had previously been told would be unlikely to be a viable option.
This past week has had its fair share of stress and distress, a significant amount of fighting for things we need, a minimal amount of sleep, and a huge amount of readjusting to the vastly increased amount of care that Suzie needs. Yet, amidst it all, prayers have been answered, and the wonderful peace of God has made itself evident to us whenever we've remembered to stop and receive it.
As I wrote right at the beginning of this blog entry.... God's Perfect Peace isn't found in the absence of life's troubles. It's the calm serenity we feel right in the midst of them.
Jesus said, "Peace I leave with you; my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14 v.27

Drop Thy still dews of quietness, till all our strivings cease,
Take from our souls the strain and stress,
and let our ordered lives confess
The beauty of Thy Peace.

Sunday, 9 February 2014

Renewed Hope!

The sparkle is back in her eyes. Beautiful!
When I arrived at the hospital this morning and saw Suzie sitting up in bed it was as though someone had switched the light back on in her eyes. She's been so poorly this last week and has spent most of the time sleeping. Even when she's been almost awake she has been in pain, not really properly aware, and very low in her spirits.
This morning I saw a glimpse of hope in her face. She had slept well and she was awake.... properly awake. In that moment I suddenly realised that it was the first time she had been fully awake and really 'with us' for a long time. It was a truly beautiful start to the day.

On the medical front things seem to be progressing reasonably well. Suzie's chest drain was removed yesterday, having drained over two litres of fluid from her chest cavity over the last week or so. An x-ray seemed to suggest that, although there was still some fluid remaining, her lungs were looking much clearer. The decision was made to remove the drain so that they could get the next course of chemo started without any further delay. This will be done while she is still in hospital so that they can make sure all is well, and then it will be continued at home as an oral treatment.
Suzie was also taken off her oxygen yesterday. This has caused a reduction in her blood oxygen levels so it is being monitored closely. At the moment she is on the borderline of what is considered an acceptable level. If it doesn't improve it may mean that she will have to have oxygen at home, or it may simply require continued monitoring. I'll have an oximetry monitor at home so that I can check her levels regularly. 

A precious few moments in the Hospital Chapel
giving our heartfelt thanks to God for answered prayers.
I was able to get Suzie out of bed and into her wheelchair today, and we were even able to take a little 'outing' together down to the Hospital Chapel. Somehow it just seemed an appropriate place to go for our first venture off the ward for over two weeks. As a very dear friend of mine commented today, it's amazing how one's world can shrink so quickly. Midgely Ward has been our home for over two weeks, and the rest of the world has seemed a million miles away. Just getting out and going to another part of the hospital was a huge achievement.

So, as Suzie and I dare to begin to feel a sense of hope that we are nearing the end of our own current storm, we watch with awe as our home town and its neighbours face another battering this weekend from the storms of nature. Last week's rain and gale force winds are set to return with renewed ferocity. We have already seen our own sea front totally trashed by the wind and waves, and our pier almost washed away, whilst our neighbouring town of Dawlish has had its historic railway line ripped up by the savage attack of the sea. The storms haven't finished with us yet, and we are humbled as we helplessly watch the mighty power of nature cause such drama and destruction.
I thank God for two dear friends who live just down the road from the hospital and who have opened their home to me. It is such a blessing not to have to drive home in this extreme weather. I also thank God for another dear friend who has opened her home to our little dog, Millie, and is taking such good care of her so that I can be free to devote myself to Suzie. Yet again God demonstrates His complete and all-encompassing concern for all our needs. How can we fail to trust Him for the future.
The words of one of my favourite and most special hymns comes to mind........
        "Be still, my soul; thy God doth undertake
        To guide the future as He has the past. 
        Thy hope, thy confidence, let nothing shake; 
        All now mysterious shall be bright at last...."
We look to the days ahead when our hope that ''all shall be bright' will become reality.

Monday, 3 February 2014

The significance of a box of tissues....

A beautiful gift from a special friend.
Suzie needed some more tissues. I knew I would have to go and buy some and I would have to go into a supermarket to get the ones she likes. (Supermarkets are an ordeal I really struggle with, especially on my own, but that's another story). There's a particular type of tissues that Suzie likes.... They're strong, yet soft, and quite large, but come in a compact box, which is ideal for a cramped hospital locker. Any old tissues just wouldn't do.... 
Yesterday we had a visit from two very special friends who have been upholding us in prayer. They said that they hadn't known what to bring for Suzie but they wanted to bring a small gift that might be useful, and they pulled out of their bag a box of tissues.... Not just any box of tissues, but the exact brand, size and type that Suzie likes! 
The true value of that seemingly insignificant gift went far beyond the value of the item itself. It gave us the most profound demonstration of how well God knows our needs, and how much He cares about every tiny detail of our situation. Of all the random gifts anyone could bring for Suzie, these two dear Christian friends had been led to the one and only thing that we'd already realised she actually needed, and they'd got the exact item that we wanted. To see such evidence of how God cares enough for us to produce a particular box of tissues when we need it gives us the most wonderful reassurance that we can trust in Him to care for us in all things, both great and small. How amazing is His love for those who trust Him!

Suzie's new friend,
Smidge the Meerkat
We've had an eventful week. After the initial hold up it was all systems go this week.... CT scan, ultrasound scan, and the much needed chest drain. I have to say it was a huge ordeal for poor Suzie to go through. The Doctor who was in charge of the procedure warned us that there were various complications in Suzie's case that were making it much more difficult and complex than such a procedure would usually be. Even with the additional guidance of ultrasound imaging throughout, it took several attempts by two experienced Doctors to successfully complete the initial stage of this procedure, unavoidably causing Suzie a great deal of pain and trauma in the process. The tubes are now in place and will have to stay put for a few days until the fluid has cleared. Once that stage is reached Suzie will have more tests and scans to ascertain how successful it has been. One of the complications was that the fluid was randomly distributed in various areas of Sue's chest cavity. If all of these pockets of fluid are connected the hope is that all of the fluid will drain away via this drain. If not, the whole process will have to be repeated again this week. Please pray that this won't be necessary as Suzie is dreading the prospect of having to go through all that again.

Smidge and Thornley Bear,
holding Suzie's precious cross
It's been a roller coaster ride this week and Suzie has given us a few scares. For a few days her breathing was really giving cause for concern and she was put on oxygen. Then, on Wednesday she didn't want to wake up. I'd got to the hospital just after 9am and she was sound asleep so I settled down in the chair and read the news on my iPad. About 10.30am Suzie was still asleep and the nurse in charge told me she wanted to try to wake her up just to make sure she was ok.... At that point it hadn't actually occurred to me that she might not be! Suzie sort of stirred but she was very disorientated and didn't know where she was. The nurse did a blood test and increased the frequency of her obs but there seemed to be no clinical reason for Sue to be so 'out of it'. I sat beside her all day and we had a visit from the Hospital Chaplain. She really was very poorly and there were moments during that day when I feared for our future. When I left that night I spent some time of quiet prayer in the Hospital Chapel before driving home. For the next couple of days Suzie was monitored very closely but no cause was ever established for her 'turn off' and eventually she became a bit brighter and more responsive. I think she was just physically and mentally utterly drained and exhausted.

So here we are on Sunday evening, looking back over the events of the last week or two, and looking ahead to a new week that is just beginning. We have seen many prayers answered and we have certainly moved forward on our journey.
By her side.... where else would I be??
There is much uncertainty about how this next week will pan out, but we are certain that the faithfulness of God's promise never to leave us nor forsake us will continue to hold true. We pray that God's love and grace will uphold us and that, eventually, we will be able to return home with the hope of another summer to enjoy together. We thank God for the love and prayers offered so freely by our family and friends who are constantly beside us all the way and without whom we would find this journey infinitely harder. We are also very grateful for the loving care we have both received from the staff at Torbay Hospital. They really are wonderful people who do a remarkable job.

Suzie and I have much to be thankful for, even amid the fear and pain. This unwanted journey has caused us to touch the lives of people whom we would never have met. Our prayer is that they will see in us a glimpse of God's love and peace. If we can make a difference to someone we meet along the way we will know that our pain has truly been transformed by the power of God for His divine purpose. What more could we ask!