I do not usually write too much on the downside of our daily lives in this blog, but I think if this may be of any help to other carers that might come upon it, I need to put this in. I am not looking for sympathy etc, just giving a glimpse of how some days go. Jon and me fight on! And that is something I am proud of for both of us.......we will never give in!
Today I am tired, physically and emotionally......can't be bothered with anything.
The situation Jon and I find ourselves in is getting harder to deal with on a daily basis. Nothing can help us to carry this heavy burden...
Jon is finding it so much harder to continue his fight and I think on several occasions has got to the point of giving up, but somewhere from deep inside, he manages to make himself carry on. It's taken his life away ( life as we knew it) and that is the worst part...he can "deal with the illness" but is having a hard time dealing with all the changes, physical and emotional.
How do you tell a person to keep going, when there is nothing to keep going for? He faces the end of his life, I face the end of us...so there is really nothing to "hold on" for, ........except us.......that is the mainstay, without that we would have drowned in all of this by now.
Cancer has wreaked havoc with the life we had/have together, it is completely different now, different in so many ways.
It is sapping the life out of both of us........but we can't let it win.
I wish my darling the strength to be able to cope with this vile disease until he no longer has to cope. I wish and hope that it will leave my darling without pain, as it has up to now, I could not bear seeing him in pain, that would be the final twist of the knife.
I sit at the sideline watching this disease dig deeper into both our souls, the turmoil it causes us both, but mainly Jon, is soul destroying.His moods swing wildly and at times he lashes out at me....that hurts, really hurts, because in my eyes it means I have failed him. Failed in my job to protect him and be his prop....failed myself in not being as strong as I feel I should.
I have given up trying to see into the future, I do not want to know what is to become of me, I have no interest in a life without Jon.
Family try to keep me going, and I love them dearly for it, but there is little they can do other than be a listening ear.
Watching life go on around you, is also hard....people carry on with their lives, the ups and downs that we all have. The fun and laughter and plans for the future, this IS life afterall....a life that now eludes Jon and me.
At times I am jealous of folk who can carry on and live their life...and by the way, they should carry on and get the best out of life while they can, but I admit I am sometimes jealous.
I think it is mourning the loss of planning what will happen in our life together, for nothing can stop this beast, we can no longer plan for anything, and if we dare to try there is always the thought "can we do this will there be enough time or will Jon be well enough?"
The cancer has been slowed in its devastation only because of Jon's out and out bravery and stubborness at not letting it win, but it still continues it's relentless progress through our lives.
Trying to keep a cheery face is getting harder for both of us, only those close to us have any inkling of what our daily life entails, and even they do not come close in how hard we fight to get through each day. We will both carry on fighting as hard as we can and we wont let cancer drive us completely into the ground...but it's so damn hard!
The shining light in all of this, is the support from our Macmillan nurse. She is there for us almost daily now, she cannot take it away but she helps us to cope with practical advice and medical advice, also, she LISTENS to both of us! Unless you have been through this I don't really think you can understand how much a listening ear means. She is genuinely interested in all her patients and most of all, she cares!
I have found that I have coped a little better knowing I have her to lean on when times get a little harder.
That feeling of having a lifeline at the end of the phone, helps me to feel I'm not so alone. When you feel alone, everything is so much harder and life looks so much bleaker.
That is how I feel today....tomorrow could be brighter, and that is what I/we hold on to :)
