In Jan 2013 my life-partner and soul mate, Suzie, was diagnosed with MSA (Multiple System Atrophy), a rare, incurable Neurological illness. Only days earlier she had also been diagnosed with an equally rare cancer. Our lives were devastated and changed forever. But, through prayer and faith, we faced one day at a time, and I continue to do so without her. My desire is to offer insight, information, hope and encouragement to other people who face their own life changing illnesses or bereavement.
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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.