I have decided to start a new section to my original blog A Carer's Journey Through Lung Cancer, this is about life without my darling Jon.
In the months following the death of my darling Jon, life has been pretty "shit" pardon my French! November came and went in a total blur of sadness and whirl of sorting everything out. To be honest I can't remember that much about it, other than the deep ache that took up residence in my heart.
December arrived with the daunting prospect of facing Christmas without my best friend, in fact if it had been cancelled I don't think I would have noticed.
I went through the motions, just as well I'd done it before! It really wasn't the same...waking up to Christmas day without the excitement on both our faces of what our gifts to each other would be. Could have been a pair of socks and I'd have still been SO excited!
Our usual bucks fizz in the morning, didn't bother, Christmas lunch wouldn't have happened if my son, his wife and our lovely grandchildren hadn't invited me to share it with them. They helped me through what would have seemed an endless day if I had been alone......there were smiles, those little terrors always manage to make me smile.
After Christmas came the wedding of my eldest son, I really wasn't sure I could do that, and if it wasn't for the encouragement from all of my children, I'm not sure I could have got through it. But I did :) and on the whole it was a lovely lovely day, just once or twice I felt the tears well up, wishing my darling was by my side.
New Year....... yeah right, I was REALLY looking forward to the start of this one....NOT! But another "first" was got through and life started to even out a little.
The thing that sticks out in my mind is, how hard it is to contemplate doing anything at all without my Jon. Things have a hollowness to them now, and the sadness continually creeps up on me when I least expect it. I try to fend it off but most times it doesn't work and I give in to it.....the tears flow and then I can pick myself up and carry on for a while longer.
I hadn't realised how much the last two years had taken out of me, I have found I am incredibly tired, seem to fall victim to any roaming bug that takes a fancy to attacking my system ( open house in Tina's blood stream lol) I guess that happens to anyone who has been through a similar experience.
So, I have recently moved in with my daughter, and though it's only been a couple of weeks it's been a good couple of weeks. So nice to have someone to chat with for a couple of hours in the evening, I found the loneliness of living alone very hard to deal with. So nice to have someone to listen when I have a wobble. And my gorgeous greyhound Tilly is finding that having Harriet dog for company is actually fun............most of the time lol.
So Tilly and me plus Harrie and Donna are starting out a new life together and with their help at some point life may regain some sort of meaning again.
Until then I have my memories, my precious photos and little items that Jon made for me at the hospice day care. Those small gifts bring me so much pleasure, and make me smile when I think of the way he would be after making them......covered in either paint or glitter :)
My love for my darling Jon will never ever fade, in fact funny as it sounds, I love him more and more as time passes. I have the time to remember the real thought that went into everything he did and said for me. We had/have a love that cannot be measured, I was/am so lucky to have known and loved such a wonderful man.....I will always love Jon Roberts and because of his courage and strength, I will get stronger, strong enough to carry on and make him proud.
Monday, 30 March 2015
Sunday, 7 December 2014
28. The Last Goodbye
My darling Jon passed away on the 7th November 2014, and on the 19th November we had his funeral and said our last goodbye.
The days leading up to the funeral were harrowing for me, constantly shaking inside and virtually unable to function properly. The day of the funeral was almost too much to bear, I wasn't sure I would be able to go through with it. But my children were there right by my side and assured me I would get through it.
I remember the hearse arriving outside the house and the feeling of numbness that went through me....
The family got into the car and we set off for the last goodbye.
Arriving at the crematorium I was amazed at the numbers of people who had come to pay their last respects.
Out of respect for Jon's courage in facing lung cancer, the ladies wore pearls (if they had them) and the men wore the lung cancer ribbon with a pearl pin. Pearls are fast becoming the awareness sign for lung cancer.
There was standing room only inside the chapel.....the hospice chaplin took the service, which was lovely as he had come to know Jon during his time in the hospice. The service was all that Jon would have wanted, nothing too sombre.
My son Steve was brave enough to stand up and speak about Jon on behalf of the family.......I can't tell you how much that meant to me. He did very well and what he said was lovely, but his feelings got the better of him towards the end and his older brother had to go up and help him finish what he had to say.
I have to say that all the children did Jon proud, Jon's daughter Sarah and his son Jason....my children, Karl, Donna, Steve and David, made me so very proud and Jon would have been bursting with pride for all of them.
The boys and Jon's friend were pall bearers, that helped me so much, knowing he was being carried by people who loved him and cared for him,
It was a simple funeral that went along with Jon's wishes, he didn't want a huge fuss.
I had two songs Unbreakable (sung by my sons and a friend) and Swing Low Sweet Chariot, the first was a song for me and Jon, the second was for his love of rugby.
That was our last goodbye to a wonderful man, a man who had shown me the meaning of true love, kindness, courage and such bravery in the face of such a horrendous illness. I have been honoured to have had such a man in my life and to have been able to call him my husband, my soulmate.
It is a month today since my darling left me, he is at rest and I have to find the courage to carry on without him. That is the challenge I face, but I will face it with the same courage as my darling faced his illness.....he has showed me how to carry on when you feel everything is lost.
It will take everything I have to keep going, no one and I mean no one, can know how hard it is to face each day without him. The sadness that at times can be overwhelming and the loneliness that is ever present, even with people all around.
This was not my life plan....this was not Jon's life plan......but it is the plan we were dealt.
My Jon was my life, and I am so lucky to have had him with me for the time we had...he made me proud, he made me laugh, he made me complete.........and best of all? He Loved Me...........and I Loved Him....and I will always love him.
That love is and always will be Unbreakable!
The days leading up to the funeral were harrowing for me, constantly shaking inside and virtually unable to function properly. The day of the funeral was almost too much to bear, I wasn't sure I would be able to go through with it. But my children were there right by my side and assured me I would get through it.
I remember the hearse arriving outside the house and the feeling of numbness that went through me....
The family got into the car and we set off for the last goodbye.
Arriving at the crematorium I was amazed at the numbers of people who had come to pay their last respects.
Out of respect for Jon's courage in facing lung cancer, the ladies wore pearls (if they had them) and the men wore the lung cancer ribbon with a pearl pin. Pearls are fast becoming the awareness sign for lung cancer.
There was standing room only inside the chapel.....the hospice chaplin took the service, which was lovely as he had come to know Jon during his time in the hospice. The service was all that Jon would have wanted, nothing too sombre.
My son Steve was brave enough to stand up and speak about Jon on behalf of the family.......I can't tell you how much that meant to me. He did very well and what he said was lovely, but his feelings got the better of him towards the end and his older brother had to go up and help him finish what he had to say.
I have to say that all the children did Jon proud, Jon's daughter Sarah and his son Jason....my children, Karl, Donna, Steve and David, made me so very proud and Jon would have been bursting with pride for all of them.
The boys and Jon's friend were pall bearers, that helped me so much, knowing he was being carried by people who loved him and cared for him,
It was a simple funeral that went along with Jon's wishes, he didn't want a huge fuss.
I had two songs Unbreakable (sung by my sons and a friend) and Swing Low Sweet Chariot, the first was a song for me and Jon, the second was for his love of rugby.
That was our last goodbye to a wonderful man, a man who had shown me the meaning of true love, kindness, courage and such bravery in the face of such a horrendous illness. I have been honoured to have had such a man in my life and to have been able to call him my husband, my soulmate.
It is a month today since my darling left me, he is at rest and I have to find the courage to carry on without him. That is the challenge I face, but I will face it with the same courage as my darling faced his illness.....he has showed me how to carry on when you feel everything is lost.
It will take everything I have to keep going, no one and I mean no one, can know how hard it is to face each day without him. The sadness that at times can be overwhelming and the loneliness that is ever present, even with people all around.
This was not my life plan....this was not Jon's life plan......but it is the plan we were dealt.
My Jon was my life, and I am so lucky to have had him with me for the time we had...he made me proud, he made me laugh, he made me complete.........and best of all? He Loved Me...........and I Loved Him....and I will always love him.
That love is and always will be Unbreakable!
Saturday, 22 November 2014
27.Journey's End, 7th November 2014.
It's two weeks since my darling Jon passed away, and his passing was"beautiful" if a passing can be described that way. He was right there with me until his last breaths, the hospice couldn't understand how he could be so aware at that point. I arrived in the middle of the night, told him I loved him and he nodded to me.....he made me smile even at that point, he had an imaginary cigarette, and was "smoking" it, I put an unlit one in his hand....he "smoked" it, dropping the "ash" over the side of the bed, then threw it away......it was like "that's it, I'm done now". I talked him through it all until he took his last breaths.....just before he passed he grabbed my hands in his and held on tight. This was to me, unusual as it had been me holding his hand for the last few weeks, he didn't seem to have the strength to "hold my hand" for the last couple of weeks. He held my hands and took three last breaths, then my darling was gone.
So that's why I think his passing was "beautiful" he was never unconscious at any point, he went on his terms as he has done all the way through this whole nightmare. I am SO proud of my darling, he never at any point, felt sorry for himself. He was desperately worried about the effect this was having on me, but never himself.
During his illness Jon was a major part of a DVD that the hospice made along with other sufferers and carers to promote the work the hospice do. We had a premier at a lovely hotel where he was given an award for his part in it, it was a wonderful evening! The DVD is now going to be shown throughout December at our local cinema during all the advert breaks between films, and donation boxes will be available. I cannot tell you how proud I am of my wonderful man.
This is my darling Jon with his beloved greyhounds, these hounds kept him going throughout his illness. Boss is the black and white one, Tilly is the black one.
Sadly we lost Boss in July and he went on to Rainbow Bridge, he has been waiting for Jon to arrive so they can continue their walks together. Tilly and I will carry on best we can without our soul mates until our time comes.....
This is the family showing just how proud we are of our darling man, at the Hospice DVD premier.
Christmas 2013 with our lovely grandchildren...happy times!
William John Roberts, (known as Jon) 1948-2014. There has never lived a more wonderful man, funny, loving, gentle, proud, at times stubborn lol, brave, courageous and he was my soul mate....
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Goodnight my darling, walk slow and wait for me......love you always and forever, keeping you in my heart until we meet again. xxxxxx
Saturday, 25 October 2014
26. Our Final Steps Together in our Journey
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
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
Sunday, 7 September 2014
25. The clock is ticking....
My darling is again in the hospice for symptom control and I am alone until he is back home with me. This time seems more traumatic than the last, trying to keep my feelings under control is harder and I go between sobbing and intense anger.
There are now blood clots on his lung, infection and the usual fatigue all taking their toll on my darling....we are waiting for the results of his brain MRI and I am praying that at least this will be clear, surely something has to go our way??
Having seen the oncologist while he is in the hospice, it has been confirmed that time is short........this is where the intense anger is coming from. I know in my heart that time is short, but from time to time I kid myself that maybe I'm wrong......but to have it confirmed by the oncologist brings a deep sadness.
This is a time were I sit and think back over our life together....13 wonderful years being with my loving, brave, strong, funny man. In those 13 years I have had a lifetime of love given to me and shared with me, he has always been and still is my rock, he knows me inside out.....he has given me his all and I have done the same with him. It is hard to put into words all that I feel for this man, my Jon, how do I explain how much a man I love and adore means? There are no words and never will be.
I have mountains of good memories, in the way of photos and events that have happened during our time together, and I guess in time they will become more and more precious to me. I'm glad I am a "photo addict" and have taken lots of photos during our time together, even Jon thinks it's funny!
Through this whole thing people have been very kind in general, some have been outstanding in supporting me, in particular my children/partners have been so caring, kind and helpful and I will always always be grateful. These are the people I will need so much more in the next few months, because without them I will not get through what is to come.
Jon and me will still fight on, we have no choice we have to keep fighting to make each day count.....to give up now would undermine everything we have been through, and we will never be ready to do that.
I thought at the beginning of all of this, that it was hard.......but little did I know just how hard it would be.
To all those carers out there doing exactly the same as myself, I wish you strength to carry on loving and caring for your loved ones. It is the hardest, and at times the loneliest thing in the world to do, but we do it, because we love them.
September 4th 2014
Today is another day that will stay in my memory forever.....it's a very bad day! The consultant told Jon the cancer had spread to his brain, in turn Jon told me.....I cannot tell you the emotions that run riot through my whole body. The worst possible news we could have, so we thought.......today (5th) I was told that there are three new tumours in Jon's brain. Only one is of any significant size, but that one and the two smaller ones are growing......
I cannot believe that things have gone from being fairly stable to being out of control in such a short time...I cannot believe that I am so so close to losing my darling, the love of my life, my everything....
Having had a few days to think on what has happened to us, and I say "us" because even though I (thank god) do not have to physically bear this disease, in every other way, we bear it together, it still does not seem real. How can this be happening? WHY is it happening? Hasn't he been through enough without this final blow?
Oceans of tears have been shed and will continue to be shed, either alone or together, to try and bring some sort of sense to this horrible situation.
Jon is still at present in the hospice, but we hope to bring him home during this next week, he needs to be at home for as long as possible. We need this time to talk, to smile, to make a few more memories before we say our final goodbyes.
I have said I will love my Jon through this until the very end, and that is a promise I have made and a promise I will keep. I cannot take it away from him, but I will try to ease his journey until he can finally rest. For that is the greatest thing I can do for him now, help him through until he says it's time to rest. When that time comes, I will be right there with my darling as it should be.
There are now blood clots on his lung, infection and the usual fatigue all taking their toll on my darling....we are waiting for the results of his brain MRI and I am praying that at least this will be clear, surely something has to go our way??
Having seen the oncologist while he is in the hospice, it has been confirmed that time is short........this is where the intense anger is coming from. I know in my heart that time is short, but from time to time I kid myself that maybe I'm wrong......but to have it confirmed by the oncologist brings a deep sadness.
This is a time were I sit and think back over our life together....13 wonderful years being with my loving, brave, strong, funny man. In those 13 years I have had a lifetime of love given to me and shared with me, he has always been and still is my rock, he knows me inside out.....he has given me his all and I have done the same with him. It is hard to put into words all that I feel for this man, my Jon, how do I explain how much a man I love and adore means? There are no words and never will be.
I have mountains of good memories, in the way of photos and events that have happened during our time together, and I guess in time they will become more and more precious to me. I'm glad I am a "photo addict" and have taken lots of photos during our time together, even Jon thinks it's funny!
Through this whole thing people have been very kind in general, some have been outstanding in supporting me, in particular my children/partners have been so caring, kind and helpful and I will always always be grateful. These are the people I will need so much more in the next few months, because without them I will not get through what is to come.
Jon and me will still fight on, we have no choice we have to keep fighting to make each day count.....to give up now would undermine everything we have been through, and we will never be ready to do that.
I thought at the beginning of all of this, that it was hard.......but little did I know just how hard it would be.
To all those carers out there doing exactly the same as myself, I wish you strength to carry on loving and caring for your loved ones. It is the hardest, and at times the loneliest thing in the world to do, but we do it, because we love them.
September 4th 2014
Today is another day that will stay in my memory forever.....it's a very bad day! The consultant told Jon the cancer had spread to his brain, in turn Jon told me.....I cannot tell you the emotions that run riot through my whole body. The worst possible news we could have, so we thought.......today (5th) I was told that there are three new tumours in Jon's brain. Only one is of any significant size, but that one and the two smaller ones are growing......
I cannot believe that things have gone from being fairly stable to being out of control in such a short time...I cannot believe that I am so so close to losing my darling, the love of my life, my everything....
Having had a few days to think on what has happened to us, and I say "us" because even though I (thank god) do not have to physically bear this disease, in every other way, we bear it together, it still does not seem real. How can this be happening? WHY is it happening? Hasn't he been through enough without this final blow?
Oceans of tears have been shed and will continue to be shed, either alone or together, to try and bring some sort of sense to this horrible situation.
Jon is still at present in the hospice, but we hope to bring him home during this next week, he needs to be at home for as long as possible. We need this time to talk, to smile, to make a few more memories before we say our final goodbyes.
I have said I will love my Jon through this until the very end, and that is a promise I have made and a promise I will keep. I cannot take it away from him, but I will try to ease his journey until he can finally rest. For that is the greatest thing I can do for him now, help him through until he says it's time to rest. When that time comes, I will be right there with my darling as it should be.
Friday, 22 August 2014
24. I Can Hear The Cracks in my Heart Breaking
My heart is heavy and I feel my world closing in, Jon is not getting any better....in fact I would say he is slightly worse.
The Insulin he has been put on seems to do little for the dizzy spells, the hospice doctor has the right idea I think......the tumours are growing rapidly now and giving off chemicals that are causing alot of my darling's problems, and they can do very little about that.
Back on antibiotics after I had to get the out of hours doctor out to see him last Sunday (10th). He thinks there is another infection brewing, which may or may not be the case. Steroids have been stepped up again for a while, and that is all the medical world can do for him.
His balance is getting worse, it breaks my heart to see my darling suffering, knowing he is getting worse, that is the cruelest thing. I put my arm round him and I can feel how much muscle he has lost. I'm going to lose him very soon....that is the gut feeling I have....no longer is it months/year....it's relatively soon.
I feel broken that I can't stop it...............how can you watch the love of your life slowly fade away? I hope you never have to...it is the hardest most soul destroying thing in the world.
My heart is breaking, I can feel a scream coming from the deepest depths of my body, it is yet to reach the surface.....but it's coming.....
Days are passing and my darling is fading away, slowly, but none the less he is fading. The most painful sad thing is, he knows it..........his fight is gone and he is slowly letting go. Today he is going for a little trip out to one of his favourite places, the little cafe in a place called The Pet Cemetery in North Wales, he is going with his lovely daughter.....I am not sure how many more visits he will manage to make, if any.
Thoughts are rushing through my mind at such a speed I cannot keep up with them.....sometimes I feel as though I can't breathe!
I am so proud of this man, he is fighting a battle he has no chance of winning, I cannot help, all I can do is try my very best to meet all of his needs and to make sure he is as comfortable as I can make him.
Yesterday I asked was he losing the fight.....I didn't need telling, I can see for myself, but to have someone actually tell you out loud, brings a feeling of numbness.
Medication is changing rapidly, each day brings a new change, something added something stopped, it goes on and on.
We are now waiting for a hospital bed to arrive, so my darling doesn't have to cope with the stairs....I wish I could hurry it up! But these things take time, hopefully just a few more days and it will be here.
We have also been told that Jon will be going back into the hospice soon, they are leaving it (as far as possible) until he is ready. I just have to let my lovely Mac nurse know when he wants to go in and it will be done. They say it maybe just for symptom control and he will again come home, but in this situation, who knows?
All of this is so surreal, I'm going along trying to stay "normal", knowing deep in my heavy heart the time to say goodbye will soon be upon me and our family. I hope we have a few months more.....
Jon is my darling, my soulmate, my very best friend my everything.........how do you carry on without your rock? How do you make life worth living? I have yet to face that demon, for which I'm thankful, but in the fullness of time I will face it............and face it alone.
I am sorry this part of my blog is so downbeat, but I feel I have to be honest about my feelings....no point in saying "all is well as it can be" because it's not. I have read other carers blog/comments as they face this daunting episode in their lives, and have been in awe of how they cope, but most of all I draw strength from their complete honesty. Both Jon and myself have never been the type to "sugar coat" anything in life, you can't avoid things just because it hurts. You have to face it full on, with courage and dignity, and I hope that I am doing this. Jon certainly is!! He has astounded me from the beginning of all of this with his courage and determination, and is bearing this part in his journey with dignity.
I will continue to love my darling through this, right to the very end....I will never leave his side!
The Insulin he has been put on seems to do little for the dizzy spells, the hospice doctor has the right idea I think......the tumours are growing rapidly now and giving off chemicals that are causing alot of my darling's problems, and they can do very little about that.
Back on antibiotics after I had to get the out of hours doctor out to see him last Sunday (10th). He thinks there is another infection brewing, which may or may not be the case. Steroids have been stepped up again for a while, and that is all the medical world can do for him.
His balance is getting worse, it breaks my heart to see my darling suffering, knowing he is getting worse, that is the cruelest thing. I put my arm round him and I can feel how much muscle he has lost. I'm going to lose him very soon....that is the gut feeling I have....no longer is it months/year....it's relatively soon.
I feel broken that I can't stop it...............how can you watch the love of your life slowly fade away? I hope you never have to...it is the hardest most soul destroying thing in the world.
My heart is breaking, I can feel a scream coming from the deepest depths of my body, it is yet to reach the surface.....but it's coming.....
Days are passing and my darling is fading away, slowly, but none the less he is fading. The most painful sad thing is, he knows it..........his fight is gone and he is slowly letting go. Today he is going for a little trip out to one of his favourite places, the little cafe in a place called The Pet Cemetery in North Wales, he is going with his lovely daughter.....I am not sure how many more visits he will manage to make, if any.
Thoughts are rushing through my mind at such a speed I cannot keep up with them.....sometimes I feel as though I can't breathe!
I am so proud of this man, he is fighting a battle he has no chance of winning, I cannot help, all I can do is try my very best to meet all of his needs and to make sure he is as comfortable as I can make him.
Yesterday I asked was he losing the fight.....I didn't need telling, I can see for myself, but to have someone actually tell you out loud, brings a feeling of numbness.
Medication is changing rapidly, each day brings a new change, something added something stopped, it goes on and on.
We are now waiting for a hospital bed to arrive, so my darling doesn't have to cope with the stairs....I wish I could hurry it up! But these things take time, hopefully just a few more days and it will be here.
We have also been told that Jon will be going back into the hospice soon, they are leaving it (as far as possible) until he is ready. I just have to let my lovely Mac nurse know when he wants to go in and it will be done. They say it maybe just for symptom control and he will again come home, but in this situation, who knows?
All of this is so surreal, I'm going along trying to stay "normal", knowing deep in my heavy heart the time to say goodbye will soon be upon me and our family. I hope we have a few months more.....
Jon is my darling, my soulmate, my very best friend my everything.........how do you carry on without your rock? How do you make life worth living? I have yet to face that demon, for which I'm thankful, but in the fullness of time I will face it............and face it alone.
I am sorry this part of my blog is so downbeat, but I feel I have to be honest about my feelings....no point in saying "all is well as it can be" because it's not. I have read other carers blog/comments as they face this daunting episode in their lives, and have been in awe of how they cope, but most of all I draw strength from their complete honesty. Both Jon and myself have never been the type to "sugar coat" anything in life, you can't avoid things just because it hurts. You have to face it full on, with courage and dignity, and I hope that I am doing this. Jon certainly is!! He has astounded me from the beginning of all of this with his courage and determination, and is bearing this part in his journey with dignity.
I will continue to love my darling through this, right to the very end....I will never leave his side!
Monday, 28 July 2014
23. A Day In The Life
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 :)
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 :)
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