After having a good Christmas, things went a little bleaker....my own health took a down turn, and this I think was due to me being run down. I picked up a bug around Christmas time and now we are into the second week of January and I still have it. Being in low spirits your mind runs riot, is it really just a bug or god forbid, is it something more sinister....having seen four doctors up to now, who don't really know what it is, I'm not a happy bunny. The doctor I have the most trust in, doesn't seem to think it's anything too serious, so it's a case of letting it run it's course. Funny how things you would have dismissed in the past, seem so much worse at times like this. I haven't got time for all this messing about, I need to be well to take care of Jon. I myself am feeling physically tired right now and can get tearful at times, I haven't felt the anger coming to the surface recently, which is good :) The one thing Jon has taught me through all of this, is, not to give in to self pity!! It gets you nowhere and just brings out negative feelings.
I have also taken the step to resign from my work, it feels a little sad to do that but I wont, in all reality be going back to work now, so it's retirement for me. This isn't the situation I thought I would be in when it came to retirement, it was supposed to come at a time when we could enjoy the later years of our lives doing what we wanted without the restrictions of working. Don't get me wrong, this is the right decision for me, I want and need to spend my time with my darling...so that's that.
Looking back at how our lives have changed in such a short time brings sadness, but it also brings soooo much joy and contentment because we have the time to talk with each other....not just about cancer, but everyday things, silly things and to just enjoy each others company. That is such a rich gift to be treasured.
People who have a family member with this damned disease will tell you that at times it can be soul destroying, with all that comes with it, the mood swings from their loved one, these can range from full blown anger to tears and despair. Jon has had a range of emotions at times, which have affected me as well some of the time, I miss what we had...BUT, it's gone and we have a "new" life to deal with. I can say with no doubt, the love I have for him will NEVER change, no matter what we have to go through. Frustration can be a trying thing.
Jon has been in very good spirits mentally for a good few weeks, and that is so good to see :) But he is starting to lose some weight now, though in saying that, he isn't eating well so that could explain it. His breathing is a little worse in that he gets breathless quicker than he used to, and the fatigue is another hurdle he has to deal with day in day out. My amazing husband is dealing with it all in his own courageous, positive way....he will never give in, the cancer may eventually have its way, but he wont give in!
So hard not to think the worst, but I try to reign my feelings in as much as I can. The scan date has arrived in the post, 3rd February 2014, Oncologist 11th February 2014...at time of writing this section we are mid way through January. It's not a long time to wait for the scan, but it's such a long time in my mind when we need to know what's going on! I hate living from scan to scan, it hurts and it brings so much anxiety and uncertainty along with it, if you have never had to go through this, you wont really understand what I'm talking about.
I was asked how I coped day to day, my answer? Some days you don't cope, other days you shut down inside and go into automatic pilot and then maybe you can cope. Then there are the lighter days when it's all good and you cope more easily.
Anxiety has reared its head more often in the last few weeks, so much so that it has affected me more and more with the physical side of life. I never realised before this that anxiety could actually come out in physical ways...I know it now! Now I know what I'm dealing with, I will find my way through it.
Because of this our wonderful Macmillan nurse has stepped in on my behalf, she is arranging for me to have some "me" time. This is through a group for carers called Wired Wirral, never had anything to do with them before, but in case anyone out there is reading this and is also a carer (UK) you too could benefit by contacting them.
Now, back to our Macmillan nurse, she is a guiding light for us at this time, she constantly monitors Jon and is always looking at ways of improving his quality of life. If there is anything at all that might help him, medically, she is on it right away. She also listens, and that my friends is so important to both of us.....sometimes that is all you need, a listening ear.
We are now entering February, and I can't tell you how hard this next week or so will be..... Jon has his scan on Monday and then a week later we will have the results. When scan time comes around I become anxious and scared, I want to know.....and I don't want to know. But time will carry on and we will soon find out what this scan has to say, I just hope and pray it wont be something I don't want to hear. I see changes in my darling and my mind jumps to the worst, then I check myself and try to get a handle on all these thoughts rushing round my head...most times I can do it, sometimes I can't. The hardest thing is trying to explain how I feel to others, it seems like a constant battle and I try to tell people how I feel, and mostly fail miserably. They can't understand, why should they? I hope to god they are never in a situation were they can understand!
Scan done, and half way through the week now, it seems this week is endless....time goes quickly when you don't want it to, but when you want it to pass, it just lingers on. I am at a high level of stress, trying so hard to keep a lid on it....for the most part I think I'm doing ok, but at times giving in to the horror of it all. This is the time when sharing my feelings with others going through the same thing in the Macmillan Community, helps such alot. I am not alone, it helps, though I would not wish this on anyone.....
Results in, tumours growing, though at a slow rate :) If things remain the same then 6-12 months or so, providing the tumours don't "explode" into action......chemo is now on the table if Jon wants it. He can ask for it at any time. Consultant thinks best way forward is to do nothing at this time and go for chemo if the tumours gather speed. That is a discussion for another day.
Again we have results, but no answers to it all, limbo time again for another three months.....sooo mentally exhausting.
I find at times I can't summon the strength to converse on the subject of cancer and our lives, right now that is one of those times. Getting my feelings out on here does help, I need to clear my head and look to the future.
Courage is not the absence of fear,
but rather, the judgement that something else is more important than fear.
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