My darling darling Jon is now on his final journey, and I am here beside him as he takes the final steps before we have to part for a while.
The hospice is trying to get a bed for him so he can spend his final days where he wants to be, I so hope that this will be possible. This is my darling's final wish, and I would be so disappointed if that wish couldn't be granted. At time of writing Jon is still at home with me, his days are filled with such fatigue that he can hardly raise himself to go outside to have his precious cigarette. And YES he still enjoys his cig, and why shouldn't he? Everything else has been taken away from him, so think what you will, if that is what will help make his final days more bearable, then so be it!
Since being told earlier this month that the cancer has now spread to his brain, the final blow it brought with that news devastated Jon. The consultant told Jon he was no longer allowed to drive.....the fact that physically he probably wouldn't be able to drive again didn't come into it. It was the fact that legally he was not allowed by law to drive, cancer had struck yet another blow in taking something from him that he loved. That blow was I think the hardest of blows for Jon to take, the rest of the things cancer has taken from him/us, we dealt with...sometimes not as well as we could have, but we dealt with it. This was the final blow in Jon's eyes and it has taken a good few weeks for him to at least try and come to terms with it, he would never be able to drive our new little car......
The sadness I felt for him was so deep, he has been so positive and brave through all of this and to see how much this hurt him was so hard to see.
HOSPICE
Jon has now been in the hospice for a week and a half, they found a bed for him on the 24th September. In the time he has been in he has deteriorated almost on a daily basis, it is so sad to see him still fighting with all of his might to stay here with me. He will not let go until his strength has completely gone!
His body clock is totally confused, he sleeps more than he is awake now and the periods he is awake are getting shorter. He has little interest in what is going on around him and has virtually no attention span now.
My darling Jon has started to get a little confused, though this is only happening in very short periods at the time of writing this. He is eating and drinking less and less, the only thing that seems to whet his appetite a little is, ice-cream :) Most of the time he can get that down, but anything else? Just picks or doesn't eat at all.
Steroids have been increased and in turn that has made the leg swelling become more of a problem, but on balance steroids have a job to do and that is more important.
One thing I have noticed is how cold his hands can be at times, and how much more he feels the cold. Jon has never been one to feel the cold, it was always me shivering at the slightest drop in temperature, but now he feels it quite sharply.
I am not sure at this point (5/10/14) how much longer we have together, it's not going to be very long at all, but I think Jon will decide to rest on his terms, and his terms alone! Anyone who is not of Jon's forceful character, I think, would have given up the battle and rested at this point. But Jon will not let cancer decide when it's time to rest, HE will decide when the time is right.
My brave darling has astounded me with his courage and positive attitude right from the outset, that courage has never left him even at times when he was left shaken by each blow that this disease has brought him/us. His sheer determination to carry on fighting gave me the determination to carry on fighting also.
From my point of view, this period has been the darkest and the hardest....
From seeing the daily downward spiral in my wonderful man, to the apprehension of what I will find each time I go to the hospice.
I cannot tell you how hard it is wondering what I will face as I walk through the doors several times a day. And when I am at home for short periods, dreading the phone ringing in case it is from the hospice.
I feel at times I am falling apart and the pieces will never fit back together.......
FAMILY
Without my family I would be a complete wreck, and in particular without my Donna I don't know what I would do. She is here every single day, talking to me, cheering me up....being a shoulder to cry on, or to just listen to me. I know this must be taking it's toll on her as well, even just in the fact she is keeping me going, without the fact the she too is sad that her step father is losing his battle. She also is being so courageous.
This does not take away from my other children the help and support they bring to me, each in different ways. I am SO proud of all of my children in the way they help me carry on when at times my strength wavers a little.
Then there is Sarah, my lovely step daughter, who has been so wonderful at making her dad smile and laugh during their Costa outings :)
Jon is so proud of his daughter, and tells me often how much he admires what she has done with her life.
And I cannot ever tell her how much it means to me when I see Jon smiling after having had a good old chuckle with his Sarah!!
IT CONTINUES
Jon is in his 5th week in the hospice, and he continues to deteriorate as each day passes...
My darling can no longer walk and now has to have help to stand to get into the wheelchair.... and to even speak takes so much effort, it is heartbreaking to see. He now needs a wheelchair to make the short journey to have his much wanted cigarette, though in saying this sometimes he can go a few days without having one. This tells me how much he has gone down as not having several cigarettes a day is unheard of!
He is now having a type of seizure on a regular basis, not the classic seizures that we all know, a silent type. These seizures take so much out of him that he sleeps and is pretty much unresponsive for days at a time. They are coming closer together now and that frightens me so much....
He is eating very little, some days he eats nothing, and is drinking only enough to take his medication...some days he cannot even do that. So much so all his Diabetes medication has now been stopped as having it would make him much more poorly.
The hospice are doing all they can to keep him comfortable, but fighting a losing battle. He has ulcers on his feet for which he is having IV antibiotics, which in turn has given him oral Thrush and my poor darling now has bed sores!
He is still trying so hard to fight this evil monster but now it is a waiting game.....waiting for the dreaded phone call when I am away from the hospice and watching him when he sleeps while I'm at the hospice.
The brain mets are taking him away from me as each day goes by, he can remember little of the day when I ask him. The lung tumours are making it so much harder for him to breathe.....
How cruel is this disease? Taking him away from me a day at a time.
I have no idea how I am getting through all this, none at all.......to go one day and think, it's a better day, have your hopes raised then to have them battered down the next day as the downward spiral continues. Looking to the future is painful, wondering which day on the calendar will bring that god awful pain I'm dreading..........I try hard to put that out of my mind but sometimes it creeps up on me and tears me apart.
Christmas is not so far away, and everyone knows how much I love this time of year, but not this year...I have no interest in it at all. Life is at a standstill, there is no life for me right now, my only concern is my darling Jon.
When you find the love of your life you cannot imagine being without them, I do not know how I will carry on without my darling, but for him and only him I will, until I can be with him again.
If you have found the love of your life or you have people that are very special to you, tell them often how much they mean to you, tell them often how much you love them because you never know when the day will come and you can't say those words again.
I LOVE YOU FROM THE DEEPEST DEPTHS OF MY SOUL JON!! ALWAYS! xxxxx
