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!
Sunday 7 December 2014
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 :)
Thursday 10 July 2014
22. Terror!
This last few weeks have been horrendous! I cannot put into words the terror the last few weeks have brought into my life.
Mid June Jon started to lose ground with this awful disease, and he started chemo for the last time. June 16th, that is the day my life was yet again turned upside down.
We went along for chemo, which this time was to be given at a reduced dose, and that reduced dose would be given over two weeks. The chemo passed with no problems....until the evening.
Jon was sleeping, which was nothing unusual these days, but when he awoke he had a slight temperature and seemed confused. I got onto the triage nurse, who said I had to get him to A&E, which I did...by ambulance. Blue lights going and A&E on alert for him......at this point I did not know about the latter part. Blood tests done, head scan done and obs done. His blood sugar was sky high, his oxygen levels were quite low and Pneumonia was diagnosed.
He was kept overnight (not a good experience!) and the next day was admitted to the local hospice. They gave him IV antibiotics and fluids. After a few days we thought all was starting to level out, how wrong could we be!
A few days later, on 23rd June, Jon took a turn for the worst.......
I was told to get all the family that needed to be there to come up, Jon was unresponsive.....
We stayed all night and were expecting the worst. But, Jon being Jon decided his time was not up just yet! Later the following morning he came round :) He was far from well, but was back with us. I have never been so grateful to see those eyes open and wondering what all the fuss was about lol
If it wasn't for the hospice staff, doing all they could for my darling Jon, he would not be here today. I cannot thank them enough!
Since then Jon has remained in the hospice receiving treatment, it's almost three weeks now and I miss him more than I can ever say.
He has lost some ground now, but is fighting his way back to being as good as he can be. He now has to have oxygen from time to time and this has also been installed at home for when he is well enough to come home. If he has to walk any distance or is particularly tired he now has a walking aid, I am so proud that he realises these sort of aids are there for his benefit and nothing more.
Adjusting to life with help can be hard, but if you want quality of life I think you must, as time moves on, use what you can and not think of the negatives in using aids. It is a small price to pay to go on living and being as independent as you can.
During this time I have been at my lowest ebb, the feeling of terror, loneliness and complete powerlessness have at times overwhelmed me. I have relied very heavily on my children to help me through, particularly my lovely daughter Donna.
While Jon has been in the hospice we lost our beloved greyhound Boss, he took very poorly and I had alot of rushing round trying to get help for him. Sadly nothing could be done even though the vet did all in her power to try to save him. Boss was "our baby" and kneeling next to him stroking his head while he was put out of his misery, broke my heart.
I then had to tell Jon our "baby" was gone.
It seems that everything has come at once.....I am tired, I am sad and I am lonely.
I am now looking to when Jon can come home, this will be in a week or two if all goes well, and I CAN'T WAIT!
This has been the hardest period in my life as a wife and carer, I thought it had been hard before this, but, boy was I wrong. It brought the reality of losing Jon so much closer, and I don't like it one bit!
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On a lighter note, we attended the first screening of the hospice dvd night, this dvd is to be used for training and possibly fundraising. Jon was asked to take part in it's making along with other patients and carers, he did a wonderful job and I am again so proud of him. He got an award certificate for his part in the making :)
It was a wonderful evening and it was nice to get "dressed up" we don't do that as often now.
Life is hard, very hard, but it also has a wonderful side! He is here with me and will be for a while yet!
The motto is--- NEVER EVER GIVE UP!!! Life is too precious to do that.
Mid June Jon started to lose ground with this awful disease, and he started chemo for the last time. June 16th, that is the day my life was yet again turned upside down.
We went along for chemo, which this time was to be given at a reduced dose, and that reduced dose would be given over two weeks. The chemo passed with no problems....until the evening.
Jon was sleeping, which was nothing unusual these days, but when he awoke he had a slight temperature and seemed confused. I got onto the triage nurse, who said I had to get him to A&E, which I did...by ambulance. Blue lights going and A&E on alert for him......at this point I did not know about the latter part. Blood tests done, head scan done and obs done. His blood sugar was sky high, his oxygen levels were quite low and Pneumonia was diagnosed.
He was kept overnight (not a good experience!) and the next day was admitted to the local hospice. They gave him IV antibiotics and fluids. After a few days we thought all was starting to level out, how wrong could we be!
A few days later, on 23rd June, Jon took a turn for the worst.......
I was told to get all the family that needed to be there to come up, Jon was unresponsive.....
We stayed all night and were expecting the worst. But, Jon being Jon decided his time was not up just yet! Later the following morning he came round :) He was far from well, but was back with us. I have never been so grateful to see those eyes open and wondering what all the fuss was about lol
If it wasn't for the hospice staff, doing all they could for my darling Jon, he would not be here today. I cannot thank them enough!
Since then Jon has remained in the hospice receiving treatment, it's almost three weeks now and I miss him more than I can ever say.
He has lost some ground now, but is fighting his way back to being as good as he can be. He now has to have oxygen from time to time and this has also been installed at home for when he is well enough to come home. If he has to walk any distance or is particularly tired he now has a walking aid, I am so proud that he realises these sort of aids are there for his benefit and nothing more.
Adjusting to life with help can be hard, but if you want quality of life I think you must, as time moves on, use what you can and not think of the negatives in using aids. It is a small price to pay to go on living and being as independent as you can.
During this time I have been at my lowest ebb, the feeling of terror, loneliness and complete powerlessness have at times overwhelmed me. I have relied very heavily on my children to help me through, particularly my lovely daughter Donna.
While Jon has been in the hospice we lost our beloved greyhound Boss, he took very poorly and I had alot of rushing round trying to get help for him. Sadly nothing could be done even though the vet did all in her power to try to save him. Boss was "our baby" and kneeling next to him stroking his head while he was put out of his misery, broke my heart.
I then had to tell Jon our "baby" was gone.
It seems that everything has come at once.....I am tired, I am sad and I am lonely.
I am now looking to when Jon can come home, this will be in a week or two if all goes well, and I CAN'T WAIT!
This has been the hardest period in my life as a wife and carer, I thought it had been hard before this, but, boy was I wrong. It brought the reality of losing Jon so much closer, and I don't like it one bit!
On a lighter note, we attended the first screening of the hospice dvd night, this dvd is to be used for training and possibly fundraising. Jon was asked to take part in it's making along with other patients and carers, he did a wonderful job and I am again so proud of him. He got an award certificate for his part in the making :)
It was a wonderful evening and it was nice to get "dressed up" we don't do that as often now.
Life is hard, very hard, but it also has a wonderful side! He is here with me and will be for a while yet!
The motto is--- NEVER EVER GIVE UP!!! Life is too precious to do that.
Monday 2 June 2014
21. Never ending story....
This past month has been an eye opener......scans and results, hurt and sadness, but beyond that love and hope.
To say I have been through the wringer is an understatement, mostly due to myself and with a little help from oncology.
Where to start.....
Feelings, well my feelings have been on quite a roller coaster ranging between happiness, a terrible loneliness, and sheer anger! The happiness is the day to day life that is still here, having my Jon still here and knowing that we love each other more than life itself.
The loneliness is at trying to keep hold of myself while doing all I can to care for and love my Jon.
The anger started rising around the time the tears dried up. Crying (from time to time) was/is a release of tension for me, and I feel so much better when I stop and pull myself together. But for some reason for a period, the tears just wouldn't come and so the tension built up.
What was I angry with? The answer to that was everything! It is, I have since found out, a normal thing in the life of anyone who is dealing with something stressful in their life.
I was so angry with the situation Jon and me find ourselves in, resentful that our life has changed so drastically with no hope of ever getting back what we once had. I have tried all the way through this journey (there's that damn stupid word again!) not to dwell on the past and what once was, but now and again it all catches up with me.
I am angry that you get told one thing one minute, then it changes the next minute, I am talking about the medical outlook on Jon's health now, and not the prognosis, that never changes. I want certainty, and realistically I am never going to get that am I?
Not being able to plan ahead with even the simplest of plans is so frustrating!
Anyway, my saviour in all of this anger and frustration has been my wonderful counsellor Helen from our hospice. That lady has a way of presenting the picture I have of life in the present, in such a way that makes me feel all of my feelings are actually worth the time I spend on them. As long as I work through them, get them out there, and put them away dealt with.
With the help of Helen I have taken some time and have been able to sort out the negative feelings and dwell more on the positives.....and yes, there are so many more positives than you might think.
Since doing that, the tears (not too often) have returned and the tension gets released.
Jon has been on a month of steroids, which has just come to an end.....and now the "crash" of ending them has started. The main one at the moment is the extreme fatigue, and breathlessness, this hopefully should level off in a week or two. He finds this very frustrating as it limits his daily life in what he can do, but, we both learn to order our day so he can get the most out of it.
I cannot explain in words just how heart wrenching it is to have to watch all this going on, and not be able to stop it. All I can do is make sure all the medication is taken and that he eats/drinks and sleeps as much as he can. Doesn't seem enough somehow.....
It may sound to you the reader, that life is running at a low right now....but that wouldn't be completely true, we do have some wonderful times! Just having the company of this man I love dearly, watching tv or having a meal together, sharing funny moments and jokes, outweighs all the less happy times.
All of what we are going through has made me appreciate the "small things" in life, things that I have overlooked before. It may sound a bit silly, but taking the time to stand and look at the sky at night, the flowers in the sunshine etc and even the rain as it falls. All things I have taken for granted before.....this is life!! It's not until your life is shaken to the core that you realise just how much is going on around you that you simply "miss" out on every single day.
A week or so on from the last paragraph and things changed, the steroid "crash" came and caused a few problems. All of Jon's symptoms worsened and eventually I had to get the Macmillan nurse in, I cannot praise her enough, she was on it right away and sorted more meds out to help. He is now back on steroids for a while longer, then my darling will have to go through the "crash" yet again.
Sometimes I feel sadder than at other times, at times like that, I look around the rooms in our house and look at all the wonderful photos that remind me of all the special times we have been privileged to have. We still have more special times ahead of us, of that I'm sure, and those times will keep us going and see us through :)
I read alot from other "carers" and I think the most central thing in their/my life, is fighting to be heard by medical staff. I/we get the impression "they" know best and I/we know nothing........but, we KNOW the person being treated, we love them dearly and know when something isn't right. My greatest wish is to be heard........without being patronised or even ignored. In my case, I know my darling, I know when things are not quite right. The only exception to this is our Macmillan nurse, she listens to both of us, and she doesn't make me feel like a spare part in my own life.
This darling man is the reason I will fight to the best of my ability to make sure he gets the best care possible, it's what he deserves!! AND he would do the same for me.........that's what love does, simple as!
Onwards and upwards! This month is Jon's birthday, he will have made it through a whole year of getting "money out of this bloody goverment", meaning his pension lol. This is something to really celebrate!
Now I have to try and figure out what on earth to get him for a present, we have had this for years, me asking what would he like and him saying "nothing", ha! Don't think it would go down too well if I decided to take him at his word :)
That scenario is just a little peek back into "normal" life, and that is vital to keep us going, and by god we will keep going.
To say I have been through the wringer is an understatement, mostly due to myself and with a little help from oncology.
Where to start.....
Feelings, well my feelings have been on quite a roller coaster ranging between happiness, a terrible loneliness, and sheer anger! The happiness is the day to day life that is still here, having my Jon still here and knowing that we love each other more than life itself.
The loneliness is at trying to keep hold of myself while doing all I can to care for and love my Jon.
The anger started rising around the time the tears dried up. Crying (from time to time) was/is a release of tension for me, and I feel so much better when I stop and pull myself together. But for some reason for a period, the tears just wouldn't come and so the tension built up.
What was I angry with? The answer to that was everything! It is, I have since found out, a normal thing in the life of anyone who is dealing with something stressful in their life.
I was so angry with the situation Jon and me find ourselves in, resentful that our life has changed so drastically with no hope of ever getting back what we once had. I have tried all the way through this journey (there's that damn stupid word again!) not to dwell on the past and what once was, but now and again it all catches up with me.
I am angry that you get told one thing one minute, then it changes the next minute, I am talking about the medical outlook on Jon's health now, and not the prognosis, that never changes. I want certainty, and realistically I am never going to get that am I?
Not being able to plan ahead with even the simplest of plans is so frustrating!
Anyway, my saviour in all of this anger and frustration has been my wonderful counsellor Helen from our hospice. That lady has a way of presenting the picture I have of life in the present, in such a way that makes me feel all of my feelings are actually worth the time I spend on them. As long as I work through them, get them out there, and put them away dealt with.
With the help of Helen I have taken some time and have been able to sort out the negative feelings and dwell more on the positives.....and yes, there are so many more positives than you might think.
Since doing that, the tears (not too often) have returned and the tension gets released.
Jon has been on a month of steroids, which has just come to an end.....and now the "crash" of ending them has started. The main one at the moment is the extreme fatigue, and breathlessness, this hopefully should level off in a week or two. He finds this very frustrating as it limits his daily life in what he can do, but, we both learn to order our day so he can get the most out of it.
I cannot explain in words just how heart wrenching it is to have to watch all this going on, and not be able to stop it. All I can do is make sure all the medication is taken and that he eats/drinks and sleeps as much as he can. Doesn't seem enough somehow.....
It may sound to you the reader, that life is running at a low right now....but that wouldn't be completely true, we do have some wonderful times! Just having the company of this man I love dearly, watching tv or having a meal together, sharing funny moments and jokes, outweighs all the less happy times.
All of what we are going through has made me appreciate the "small things" in life, things that I have overlooked before. It may sound a bit silly, but taking the time to stand and look at the sky at night, the flowers in the sunshine etc and even the rain as it falls. All things I have taken for granted before.....this is life!! It's not until your life is shaken to the core that you realise just how much is going on around you that you simply "miss" out on every single day.
A week or so on from the last paragraph and things changed, the steroid "crash" came and caused a few problems. All of Jon's symptoms worsened and eventually I had to get the Macmillan nurse in, I cannot praise her enough, she was on it right away and sorted more meds out to help. He is now back on steroids for a while longer, then my darling will have to go through the "crash" yet again.
Sometimes I feel sadder than at other times, at times like that, I look around the rooms in our house and look at all the wonderful photos that remind me of all the special times we have been privileged to have. We still have more special times ahead of us, of that I'm sure, and those times will keep us going and see us through :)
I read alot from other "carers" and I think the most central thing in their/my life, is fighting to be heard by medical staff. I/we get the impression "they" know best and I/we know nothing........but, we KNOW the person being treated, we love them dearly and know when something isn't right. My greatest wish is to be heard........without being patronised or even ignored. In my case, I know my darling, I know when things are not quite right. The only exception to this is our Macmillan nurse, she listens to both of us, and she doesn't make me feel like a spare part in my own life.
This darling man is the reason I will fight to the best of my ability to make sure he gets the best care possible, it's what he deserves!! AND he would do the same for me.........that's what love does, simple as!
Onwards and upwards! This month is Jon's birthday, he will have made it through a whole year of getting "money out of this bloody goverment", meaning his pension lol. This is something to really celebrate!
Now I have to try and figure out what on earth to get him for a present, we have had this for years, me asking what would he like and him saying "nothing", ha! Don't think it would go down too well if I decided to take him at his word :)
That scenario is just a little peek back into "normal" life, and that is vital to keep us going, and by god we will keep going.
Monday 21 April 2014
20. Life Goes On
It's been a while since I wrote anything in my blog, alot has happened in the last couple of months.
We have moved house and are now trying to settle into our new home, during this time Jon became overly tired which led to him again coughing up blood. We have decided it was due to him doing far too much which led to the bleeding. It's been a couple of weeks since then and it seems to be settling down again.
He has had an "extra" scan looking for blood clots in the lung, but I guess they haven't found any as we haven't had the results yet.
We have both been very tired over the last couple of weeks and have had little time for the usual chit chat, there was/is always something to do. The upside I suppose is, we are focused on something other than cancer right now....it's never far away though, chipping away in the background.
We are awaiting the oncology appointment in early May now, then we will have a clearer picture of what the near future will bring.
Since I started writing this particular blog, things have started to change, and not for the better. My darling has shown signs of deterioration, it's happened fairly quickly. The fatigue has got so much worse, even walking his beloved dogs is taking it's toll.....sleep seems to be taking over his life and bringing him heartache and frustration, he cannot do the things he wants to do. Appetite is dwindling yet again, breathing is more of an effort and that cough is more hacking.
I have observed this on a day to day basis and now find I cannot make any more excuses, it's no longer "the move" or the stopping of steroids....it's this damned disease taking a little more of my brave husband.
To say I'm scared is an understatement, to say I'm sad is an understatement, to say I'm angry with this bloody cancer, is an understatement.......to say cancer holds my whole life in it's hands, is not an understatement.
To watch this day in day out, is heart breaking....god knows what it must feel like to have this disease dictating how you live your life......but my brave, stubborn, wonderful husband keeps going to the best of his ability. As each day passes I can feel the fear of the future creeping up on me as it comes ever closer, how do I deal with that? How do WE deal with that? How the hell can I help him???
The only hope I have right now is that there is one possible reason for these symptoms worsening, and I hold on to that. Jon has a small amount of fluid around his heart, it's ironic really, I'm hoping that the fluid has increased and that is the cause...... and the reason for this thought? They can actually DO something about that!
If it's not that, then the worst is happening and I don't want to think about it at all...................
I look back at my life, had alot of ups and downs, childhood was nothing to remember for me, I have 3 brothers and 3 sisters and I have had ups and downs with them, as we all do if we have siblings. My first marriage ended and not on good terms either, but I will say, that first marriage brought me the precious gifts of my four beautiful loving caring children, for that I can thank my first husband.
But in some ways my life started almost 13 years ago when I met my darling Jon, that's when I realised what true love was. This man has brought so much to my life, love, happiness, laughter, and a cheeky sense of humour..and you know what? I wouldn't change a second of it!!!
So when I'm feeling sorry for myself I look at my life as it is now and know that there is no better soulmate, friend, lover than my Jon. I need to "get over it" and get on with the fight, I'm a poor loser cancer, so you have a fight on your hands...I'm NOT letting go that easily!!!
It's hard to try and put my feelings into words, and sometimes I think to you out there who take the time to read this, it must seem like just a jumble of words.
The only words I can think of that make sense, is, I'm so very scared....................
We have moved house and are now trying to settle into our new home, during this time Jon became overly tired which led to him again coughing up blood. We have decided it was due to him doing far too much which led to the bleeding. It's been a couple of weeks since then and it seems to be settling down again.
He has had an "extra" scan looking for blood clots in the lung, but I guess they haven't found any as we haven't had the results yet.
We have both been very tired over the last couple of weeks and have had little time for the usual chit chat, there was/is always something to do. The upside I suppose is, we are focused on something other than cancer right now....it's never far away though, chipping away in the background.
We are awaiting the oncology appointment in early May now, then we will have a clearer picture of what the near future will bring.
Since I started writing this particular blog, things have started to change, and not for the better. My darling has shown signs of deterioration, it's happened fairly quickly. The fatigue has got so much worse, even walking his beloved dogs is taking it's toll.....sleep seems to be taking over his life and bringing him heartache and frustration, he cannot do the things he wants to do. Appetite is dwindling yet again, breathing is more of an effort and that cough is more hacking.
I have observed this on a day to day basis and now find I cannot make any more excuses, it's no longer "the move" or the stopping of steroids....it's this damned disease taking a little more of my brave husband.
To say I'm scared is an understatement, to say I'm sad is an understatement, to say I'm angry with this bloody cancer, is an understatement.......to say cancer holds my whole life in it's hands, is not an understatement.
To watch this day in day out, is heart breaking....god knows what it must feel like to have this disease dictating how you live your life......but my brave, stubborn, wonderful husband keeps going to the best of his ability. As each day passes I can feel the fear of the future creeping up on me as it comes ever closer, how do I deal with that? How do WE deal with that? How the hell can I help him???
The only hope I have right now is that there is one possible reason for these symptoms worsening, and I hold on to that. Jon has a small amount of fluid around his heart, it's ironic really, I'm hoping that the fluid has increased and that is the cause...... and the reason for this thought? They can actually DO something about that!
If it's not that, then the worst is happening and I don't want to think about it at all...................
I look back at my life, had alot of ups and downs, childhood was nothing to remember for me, I have 3 brothers and 3 sisters and I have had ups and downs with them, as we all do if we have siblings. My first marriage ended and not on good terms either, but I will say, that first marriage brought me the precious gifts of my four beautiful loving caring children, for that I can thank my first husband.
But in some ways my life started almost 13 years ago when I met my darling Jon, that's when I realised what true love was. This man has brought so much to my life, love, happiness, laughter, and a cheeky sense of humour..and you know what? I wouldn't change a second of it!!!
So when I'm feeling sorry for myself I look at my life as it is now and know that there is no better soulmate, friend, lover than my Jon. I need to "get over it" and get on with the fight, I'm a poor loser cancer, so you have a fight on your hands...I'm NOT letting go that easily!!!
It's hard to try and put my feelings into words, and sometimes I think to you out there who take the time to read this, it must seem like just a jumble of words.
The only words I can think of that make sense, is, I'm so very scared....................
Wednesday 12 February 2014
19. Changing Times
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.
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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