It's been a month now since we got the news of the growth of the tumours, and since we were told nothing more can be done.
Since then my life has been in turmoil, up and down by the hour, trying to deal with all that's going on....it's SO hard.
Jon's symptoms have been gradually taking a toll on both of us, and the new back pain is a real worry. The Palliative Care Team are brilliant, trying to allay our fears, arranging x-rays/blood tests/more medications. They are doing the job they are in place for, and doing it very well, especially the Mac nurse who is lovely. She is such a support to both of us, as are all the medical staff involved with us, for that I'm grateful.
Jon is starting the hospice day center again, probably for six weeks and then he has to take a rest again, but for now it will give him a focus. That focus is a mainstay for both of us, Jon in that he can relax and enjoy the company of the people that go there and it gives him the chance to sharpen his flirting skills with the nurses lol.
For me, I get to relax knowing that he is being well looked after while I have some free time. As time goes on I am coming to realise I really do need that free time.
Uncertain days are ahead of us, but we try to take one day at a time and not look too far ahead now, but just enjoy each day as much as we can. Jon's next target is Christmas, I'm so hoping that we will be able to make it a lovely family time and enjoy our children and grandchildren. That will make this Christmas a magical one.
We have since had early results from the x-ray, nothing mechanical is wrong, so this begs the question, what is causing the pain? Jon has been put on to Zomorph now, it's a long acting pain killer, so at least he is covered 24 hours a day. We are hoping a scan will now be arranged to pin point the pain's origin, can't see any other way of finding out..just have to wait to see if they will give him one.
I really hate all this uncertainty, wondering what is going to happen next....so much wasted energy, but it doesn't stop you wondering. So many questions and too few answers!
My greatest wish now is that we could just be able to plan ahead a little....we can't plan beyond Christmas and then it will be a month at a time after that. I never realised how hard it is to not be able to look forward to things more than a month or two away. So used to planning twelve months in advance.....holidays, family events birthdays etc but each one we reach now, is such a special achievement and never taken for granted.
Family relationships change when you are dealing with cancer, not just personal relationships, but extended family as well. My relationship has changed with my children, they are my support, and they do this job that has been thrusted upon them, so very well and I love them dearly for it. But, I hate the thought that they have to do this, it's a position I never wanted them to be in....I try hard not to fall apart too often in front of them, but it's becoming harder as time passes. and I hate the loss of control! I am their mother not their burden.
Some members of my family have, I feel, let me down a little, some alot....maybe they don't know what to say or do, but just a few words of encouragement goes a long way, maybe I'm asking too much....I find it hard to deal with it sometimes, so why should I expect others to be able to? Some members are outstanding in the way of support, and I thank them for "being there". I don't want sympathy in any form for my situation, these things happen in life, and it's happened to me and Jon, we deal with it in the best way we know how.
So as the saying goes, it's one day at a time from here on in.......and each one of those days that Jon and me share are so precious, and I am grateful for them.
