Part 2.....6. Three years......

In a couple of weeks it will be three years since Jon died...where the hell did all that time go?
Can't say life has been or is easy...in fact in some ways it has got worse.
I still miss him beyond words, he is still the first thing I think about when I wake up and last thing I think about when I go to bed, think it will always be that way.
I go over in my head everything that was "us" from the day we met until the day we parted.....I wouldn't miss any of it. In saying that, I would leave out the part that bloody cancer decided to raise it's ugly head.

I know that I have let him down since he passed away, he wanted me to carry on with life and not stay alone. Can't find a way to carry on.....don't want to find "a replacement" it wouldn't be fair anyway.....no one could ever come near how I felt/feel for Jon.
Funny how folk think that 3 years in, I should be sorted now and doing what needs to be done to carry on with life. Obviously they have never lost someone as close as Jon and I were, I really believe we were/are soul mates and that if there is an afterlife, we will be together then.
In some ways I envy people who can actually pick up their life again after they've taken some time out to deal with their loss.
My life revolves round my children and grandchildren now, it's a life that sometimes (quite a lot really) can be lonely and sometimes it can be tiring.


The loss of my lovely Tilly this year really upset me, my last link with Jon.....we picked her together and loved her together along with our first grey, Boss. So now, apart from myself, there is no longer a living link ( for me) with my darling....which makes me sad.


Christmas is on the horizon again, I go through the motions, partly enjoy it, mainly because of my grandchildren. Love them to bits :) I still love Christmas, but it's not the same as it used to be.
I wonder, how long will I feel like a ship drifting about in the water not going anywhere.
Is this it? Is this what happens when you lose the other half of you? And the big question is......how do you deal with it?
If you have the answer please leave it in the comment box below.............

Part 2......5. 17 months on...

Time has passed, it's a long 17 months since my darling Jon went away. I'm still so very hurt and sad, right now it seems in a different way....it's a deeper hurt, a deeper sadness, a deeper loss and a total emptiness inside my whole body.
Life goes on....it will get easier....time heals...blah blah blah....believe me, it bloody doesn't!! I wait expectantly for a day to come that the hurt will ease.......it hasn't come yet. I try not to "bore" people with how I'm feeling, they don't want to know the same old thing yet again. But I live with this "same old thing" day in day out. I'm supposed to be getting stronger as time goes on....I'm not....to get up each day and try to function is a huge effort. I'm not saying this for effect, it really is an effort, I talk about Jon as if he is still here...I guess people think I should stop that? I can't, he is part of my life and I won't apologise for keeping him in it. I don't want sympathy if I make a statement that I'm feeling sad or I cry, that's not what it's about. It's about people accepting that it's not a good minute, hour, day and letting me get through it by helping me. Helping by means of letting me talk about Jon and by them talking about Jon. I don't want him to be forgotten, the people who were his friends should talk about him, family should mention him from time to time, and remember the fun times. It won't hurt me it will make me happy that they cared enough to speak of him.
It's a whole new world of finding how to carry on without your other half, at least for me it is. I think Jon would have handled things much better if it had been the other way round. He was a no nonsense sort of guy, but behind that facade was a deeply caring, loving and kind man. He wasn't perfect by any means and he knew that, but he was perfect for me. 
I miss every single thing about that man, from the slightly annoying things he did, to the wonderful, sometimes silly things that he did for me or anyone that needed something. I'm so very sad that he won't get to meet his new grandchild, he would have been delighted to have met and loved that little boy or girl. He loved his two other grandchildren, and when they said something funny or simply played with grandad it made him so happy and proud.
He was also right (I think) about there being nothing after death....I hung on to the hope that maybe just maybe there could be a "message" or SOMETHING that would show me he was still around somewhere out there.
So, every little thing that I try to hang onto is slowly disappearing and I'm left floating about trying to get my life in order. Do I have the energy or even the interest in sorting my life? Most days the answer is no....now and again I get a glimpse of the "old" me, but it's only a glimpse. So, 17 months on and life is.....well, just life.

Part 2......4. One Year On

A year has passed since the love of my life left this earth and took my heart with him.
How I have got this far without him physically by my side, I do not know.....it seems his presence is always with me keeping me going. I am a sceptic as regards folk who have passed away can still be near or even contact you from "the other side", I wish I could be sure this was true. It would be such a comfort if I could truly believe that my Jon could actually see me and be watching over me.
I doubt anyone could convince me that it is so, but I'm glad that it comforts some people when nothing else can.

This year has been for me, a year full of change....some wanted changes others not so welcome. Moving in with my daughter has brought me great happiness, even though I was a little unsure it would work.... ( I don't want to be a burden to her )I'm glad to say so far it is working wonderfully.
We are in the midst of trying to sell her house and buy a new one, this will be a fresh start for us both. Though it seems that I could be turning into a gypsy, this will be my third move in two years! It is something to look to the future for and that is what I have to do.

I still miss my darling so much, that will never ever change.... I still have days when I can't see the light at the end of the tunnel, and there are days that seem a little brighter. I am now trying to look forward, this was so important to Jon, that I go forward and not stagnate in a state of self pity. For him I will give it a go, for him I will try to make some sort of life for myself until it's my turn to go to him.
 This September, I have also lost my mother...my wonderful funny mum. I'm not sure I'm really dealing with that right now, it still seems unreal and I'm numb as regards any sort of feelings. I miss her and her funny little sayings, and her beautiful smile...I'm angry that she had to suffer so much in her last weeks. No one should have to suffer as she did.
The death of my mother brought home yet again that I didn't have my "rock" by my side, the man who helped me through so many hard times wasn't there. The man who could lift my spirits no matter what, wasn't there....

I wish that I could be a little more positive with my life right now, but everything still hurts so much. I often find myself questioning where I should be on the grieving scale, should I be further on than I am, or am I doing better than I think? I worry that people think I am beginning to live in the past....I can't forget about my darling Jon or my mother. Both of these people are so important in my life, even though they are no longer here with me. Not a day goes by without thoughts of Jon, I "talk" to him often and wonder what he would make of some of the decisions I have made. But I know he would tell me to do what's best for me and not worry about others.

I am now in the week that was so devastating for me last year, this year it is devastating in a different way. I have an overwhelming feeling that as time passes, I am getting further away from my darling Jon. I miss doing the mundane things for him. Like cutting his hair, even trimming his eyebrows, funny as this may sound it was normal everyday life. I miss being able to talk to him about what is happening in life, these things I did take for granted before he got ill.
It took me a good while to come to terms with Jon's diagnosis, which you will know if you have read previous blogs. I always thought that maybe, just maybe we would get more time together.....I guess you call that hope...
Well, hope was taken away from me last year and I had to deal with my total devastation at the loss of my wonderful man.

I don't remember much about the time after his death, at least the first week or so....but now I find myself reliving the few weeks before his death, particularly the hours just before he died. It goes around on a loop in my head.
Those hours before his death have strangely brought me comfort, we had said all there was to be said previously. So those hours were very special, they were the closest I have ever felt to my darling Jon. He was aware I was there and though he couldn't speak to me, he made it known that he knew what I was saying to him. And when he knew it was coming to his last breaths he took my hands and held them.
After this I couldn't let go of his hands for at least an hour, I sat with him for four hours or so after he left this world.
Maybe I shouldn't dwell on these things, maybe I should try and block them out? But I know deep in my heart, that would be wrong. Those hours are more than special to me, those hours help me carry on.

So, in four days time it will be one year on in my life without my darling. Time to get back on the life roundabout and start to make a forward move in my life.  I can do this because my precious husband knew I could do it, and I promised him I would.
My funny, loving, precious and all caring husband Jon Roberts has left me with memories of a love and life I never thought I would be privileged to have.
I still miss you, every second of every hour of every day..........I always will my darling, night night xxxxx

Part 2......3. August

Time is going by so quickly!!
The family and myself had the charity night in aid of the hospice at the end of June, it was our way of celebrating the life of a wonderful man, my man....
We raised over £1,500 and at the end of this month a further £1,000 will be added to that total :) My niece (as was) was kind enough to sponsor our charity night through her work, Barclaycard, and they added this further amount. So in total it was £2,500 raised for Jon's beloved hospice! He would be so proud to know this.
I celebrated Jon's birthday with a family tea party, birthday cake and all......why shouldn't we celebrate? I miss him more as each day passes.....I have conversations with him in my head, this is easy because for the most part I know exactly what he would say, we knew each other that well.

My health hasn't been so good of late and I've had to have some unpleasant examinations done at the hospital, it's times like this that I SO miss his support. He was the only person who could truly calm me down and help me get things into perspective, I miss that.
My daughter, Donna has become my rock these days, but I feel bad that I have to rely on her.....she has such a lot in life to deal with. Moving in with her has been a blessing, though at the beginning I wasn't sure how it would be.....she is the best daughter in the world and I will never be able to thank her enough.

My mother is seriously ill at this time and the family has been told she will not be coming out of hospital this time round. I'm not sure how I will react when the time comes to say goodbye to my darling mum....it's too soon to go through this again! I can see similar things happening to her as her health diminishes, things I saw in Jon. I can't tell you how much this hurts....my mother has been unwell for a good while now, Dementia being one of the lesser problems she has. But during Jon's illness, from somewhere she managed to be there for me...she couldn't DO a lot, bless her, but her words meant so much at times when I needed her.
How do you say goodbye to the person who bore you and brought you into this world? I am back to looking at the calendar wondering which dreadful day will take her away from me.
November 7th 2014 took my life, my love, my everything away from me.
October 5th 1996 took my wonderful father away from me.
Now there is a date waiting to take another piece of my heart away, just, I don't know it yet.
So the calendar is not my friend (I'm sure others feel the same) it's just time marching on and taking happiness along with it.

On a brighter note (yes there are some!) my youngest son David announced his engagement to the lovely Sarah. That brought me so much happiness :D They are a lovely couple and deserve the very best of futures in front of them. So the planning starts here, I'm sure there will be a few tears along the way, as there always is in these things, but I'm sure it will be fine in the end. I am back to finding a hat! and an outfit, though I do have a little time to consider these things :) Brighter times are coming!

Tilly my beautiful greyhound is still my devoted friend, she loved Jon and now she is my little bit of him, that I still have. She joined the Taylor household along with me and gained a friend in Harriet dog. They love to play and annoy each other lol, she would be lost without Harriet now. They bring me great joy and comfort when I need it.....they make me laugh when they start their cartoon high jinx with each other.
So that is where I'm at in this month of August.

Part 2.....2. Random Thoughts

I am now into the month of May and time is passing by, sometimes I wish it would pass quicker and I would be a day nearer to being with Jon. Now that is a thought that comes to mind at periods when things look bleaker than usual, Jon would be up in arms if he was here!
I'm trying to untangle a life for myself from this awful emptiness and the cold loneliness of  not having my best friend by my side. It's difficult to put it mildly, I, like Jon, have to have a focus, an aim, or I flounder around getting nowhere. How do you find a focus when all that you had is gone?
One of the joys I have found recently is my little garden :) It is by garden standards very small, but it is enough for me right now. I have always loved flowers, and watching them grow and take on a beautiful new face each day through the growing process.
Jon used to buy me lovely cut flowers on a regular basis because he knew I loved them, I miss them. So I took myself off to the shop and bought myself a large bouquet, and it was the best thing I could have done. They reminded me of one of the best things to have happened in my life (Jon) and also brought a smile to my face for the same reason. I have decided I will do this on a regular basis from now on.

My feelings as time goes on are changing too, I miss my darling in a way I will never be able to put down in words. The "face" goes on most days, I don't want to come across as the "miserable widow" to everyone, I have alot to be thankful for. But there are days (and I think there will always be) when I just want to be alone and let the sadness in, I can deal with it then and let it pass. It is so hard trying to hide it when all I want to do is have a good cry or a rant or just generally have the space to think about my darling Jon.
The tears still come, only takes a song or a photo or a situation, and I'm done for.......but in general the long bouts of tears are having a longer space between them. I still get them, those days are dark and I go to bed hoping I wont wake in the morning, something I never thought would happen to me and something in a strange way I'm ashamed of. I shouldn't have thoughts like that, I'm "the strong one" but this "strong one" crumbles from time to time.
On better days I can now smile when I look at photos especially the ones before Jon became ill.....I can laugh at some of the situations we got ourselves into on holidays. We had a good life, a fun life, a life full of love and I will always have that and be able to remember that.

I am now into the month of June........not a month I'm looking forward to. You see, it's Jon's birthday month, his last birthday was quite traumatic in that he was so poorly. But we had a little party for him at the hospice, the family came and of course his beloved hounds. Jon always made an effort to join in the fun even though he was so poorly, he was a hero to me and all who came in contact with him.
This year will be the loneliest  and saddest as he wont be here to celebrate.
Me and the family are having a charity night in his name the day before his birthday, hoping to raise lots of money for the hospice who looked after us so well. It's a focus, it will bring me up to his birthday, and hopefully if we can raise a fair amount then this birthday will not be quite so empty.
The "first" of everything that happens in a year is so so hard.... I had my first birthday without him last April, I miss him so much.
I miss him every second of every hour of every day and I can tell you the pain is not getting any easier.

Part 2......1. Life Without Jon

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.

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!

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....

Goodnight my darling, walk slow and wait for me......love you always and forever, keeping you in my heart until we meet again. xxxxxx

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

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.

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!

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 :)

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!



                                                         

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.

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.

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....................

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.

18. December 2013

The last month of the year has brought various things to us, some good, some not so good. December brings Christmas to the forefront for everyone, but right from the beginning of this month I could feel the stress building.
I had a mild virus early in the month, which unfortunately Jon caught and it made him quite poorly. This was the start of the real stress, coping with "normal" illness is so much more of an ordeal in someone who has a major problem already. With the help of the GP and the district nurses we got through it, but it really took it out of Jon, which in turn made me feel guilty as he had got it from me.
I have come to notice more and more, in both Jon and myself, that mood and emotion changes are now becoming more apparent, and that is another thing along this journey that we both have to come to terms with. It can be hard, but we both know it's part of cancer sadly.
I came to a point during this month, that I felt "all cancered out" I did not want to talk about it, read about it, or deal with it. I felt so overwhelmed by whole thing and would have told anyone in no uncertain terms what I thought of them if they had brought it up.
I had not really been looking after myself during this time, not eating properly etc and had become quite run down. It took the district nurse pointing this out to me before I really realised what was happening. How could I possibly give my all to caring for Jon if I was not up to scratch? That brought me back to my senses lol and I am now sorting myself out.
Our spirits started to lift as the month went on, Jon was back at the hospice day center for a few more weeks and the Christmas party was on the horizon. Last year we enjoyed the party so much, even though at that point Jon was on chemo, this year it was really good and we both enjoyed the fun and friendship without having chemo holding Jon back.
Christmas Day arrived and we hoped it would be a good day.....it was far more than that! We had the best Christmas in a long while :) we relaxed and totally enjoyed the day. Visits from our children during the day really made it for us, and in between we could relax in each others company. There were so many smiles and lots of laughter, and we were as happy as we could be in this situation. The same could be said of Boxing Day, we enjoyed time with the children and grand children, bringing more smiles.
I took lots of photos, lots of smiles and happiness.
To say we were blessed this Christmas doesn't seem enough really.

We now have the New Year looming in front of us, not knowing what it will bring, but we will face it with a positive attitude....that is all that we can do. The end of January brings the dreaded scan, and all the emotions and questions that come along with it. Will the tumours have grown again? How much have they grown? Will they decide to try and treat it for a bit longer? This has suddenly become an option of sorts....though I'm not as yet convinced that they will actually give it. If they do, will Jon be able to cope with yet more harsh treatment?
The uncertainty of it all, can at times become overpowering.....this is when you have to get a grip, pull your socks up, grit your teeth and tell yourself, whatever is decided I/we can and will deal with it.
So into the New Year we will go, positive that we will cope and carry on fighting this monster, keeping it at bay for as long as we can.

I wish you all a very happy and healthy New Year, just keep in mind, tell those you hold dear, that you love them as often as you can. Because a life can change in the twinkling of an eye and that chance may be gone.

17. A Fine Line

There is a fine line between positivity and despair, this last few weeks has been such a struggle for me. I would not usually dwell on the more anxious side to my life during this journey, but I feel I have to if I'm to be any help at all to those who are on a similar journey. Life with cancer is the hardest thing I guess anyone can deal with, and yes, there are some very dark times. For myself I find some times so difficult to deal with and at some points feel I can no longer do this. These times thankfully pass reasonably quickly!

The loneliness felt at these times is hard to describe, the feeling of being deserted by those who you had hoped would be a support to you can be overwhelming ( children not included in this). I realise that people have their own lives and problems to deal with and that comes first in their lives, and that is the way it should be....but, this journey has taught me a great lesson.......not everyone, sadly, can be counted on!
I hope that these people never have to face this horrible disease in their own lives, for then, they will know how it feels. I have become "harder" now, I will no longer be there for others, for those who have shuffled me/us out of their thoughts (for various reasons) I have started to become more selfish. The reason for this is purely self preservation.....I haven't got the energy or time to "worry" why people are being this way.

Things change as time goes by, prognosis changes slightly with each different oncologist we meet, and we have met many....just when you think you have it all sorted in your head, bam! there is a different angle thrown at you. All with the same outcome however they dress it up. That my friends is very hard to deal with, at least for me.
I have found that all of this is having a negative effect on my own health, which all of us carers find out at some point. No matter how hard you try not to let it, this whole journey changes a person, neither in a good or bad way...you are never the same person as you were before all this happened. For me personally, I have less patience with the "stupid" energy draining worries and have become less tolerant. I am angry that life has changed so much and there is very little I can do about it. But I have to deal with it and that's that.

Some things have surprised me, in a good way :) People who have no real connection with me/us have been so kind and helpful and that gives me so much joy and hope in  human kind. I have "spoken" to other carers on line, all dealing with this same journey and have found, the feelings I have are not uncommon (as I thought) and have read some situations that have brought me to tears. We the carers have a hard job, we have to watch our loved one go through all that cancer brings, trying to help and also keep "normal" things going. Sometimes we have to voice our feelings and thoughts on different aspects of treatment to medical staff, this can be hard, some medics appear not to listen or just brush you aside....sometimes, someone will listen. All of this takes energy, and all of this is undertaken ultimately for the benefit of the loved one we care for.

What I am trying to say is, I adore my darling Jon, as other carers love their loved ones.....but it is a very hard job to make sure they are cared for to the best level available. Because loving Jon means I have to get the best for him in whatever way that is. We also have to keep ourselves on an even keel, that too is very hard.

To my fellow carers, I have total respect for you all and my heart goes out to all who are struggling TODAY..... everyone struggles, but if it's your turn today, I send you a huge hug!

16. Dark Clouds Hover

Now that darker days have come with winter pressing in towards us, I feel that dark clouds are beginning to hover over our lives.
Jon is looking quite well, as everyone tells me...but I know how things really are. Fatigue is becoming more and more prominent in his life, he is getting more tired as days pass. We both know what this can mean, but right now we have not said it out loud, we hang on to the fact that he is still mobile, to a point, and he can still get his beloved dogs out for a short walk.
It is at times when I can see the tiredness and the sheer frustration with it all, that my heart breaks a little more. I have said it time and again, I so want to stop what this damn disease is doing to my darling husband....but I can't!
Last scan showed no further spread of the cancer, but the new mets are growing, all be it slowly.... I will never get used to this feeling of helplessness, never get used to seeing my Jon trying with all of his might to carry on to the best of his ability, and watching it get harder and harder for him. I would give anything to be able to take this away from him, but this is reality, it's not going to happen.
It's only a few weeks away from Christmas, as everyone that knows me, knows that it is my favourite time of year. I drive everyone to distraction talking about it all the time...but this year, excepting miracles, ( and they do happen!) will be our last one together and it's so very sad. On a positive note, we have had 14 months together since the 6 month diagnosis given at the first oncology appointment :) We are now on the final run, and no one knows how long that will be, but for every day we get I give thanks.
In the time we have been married I have come to know that Jon does everything in life with gusto and I love it! Now I see the man I love approaching this part of his life with same dogged determination to fight this illness with all he has. I stand back and cheer him on and help him as much as I can.
But, there is reality in all of this, we have come to the time were we have started to discuss the end of his life. I can tell you, it's discussion I never wanted to have to face, but if Jon can face it, then so can I!
If someone you love dies suddenly, then you have no time to discuss things like this and you have to muddle through best you can. With this disease you have the time, there is good and bad to both sides, but having to talk about it with the love of your life and try to make vague decisions about what is going to happen, is very hard. Jon has made me aware of his wishes, but he has left the final decisions down to me....I just hope I can do him proud!
I am at great risk of repeating myself in this blog, so please forgive me if I do, it's a blog to help others, but mainly to help me process what is happening in our lives. I could never have asked for a more loving husband than I have in Jon, he is always putting me first though sometimes I wish he would put himself first. Any medical staff that come into contact with him, district nurses etc, he makes sure they know that I am his priority and nothing else. I also let them know that he is my priority and if I think something is not quite right I will go ahead and make it known...not sure Jon appreciates that part lol.
I try hard not to let my mind wander to darker times ahead, but now and then I lose the fight on that one and that's when my dark cloud engulfs me and tears flow like a raging river. I rant at the world and take it out on those close to me, here and now I wish to thank all who stand by me through this ordeal and "put up" with my tears and rants, especially my children. Most of all I thank my darling Jon for helping me through all of this, when he has so much more to deal with.
I often wonder at how we all make our mark in life before our time is up...for me, my mark is, I have four wonderful children and two gorgeous grandchildren (so far!) they have brought more wonderful people into my life with partners and friends. So the mark for me is my children...the mark for Jon and me is..in some small way we have brought the dreadful disease Lung Cancer a bit more to the forefront and help people to realise it's not just a smokers disease, anyone, smoker or not can get  Lung Cancer.
Jon and me have not had such a long time together in the great scheme of things, but we have had such a good life together and we have a bit longer yet! I treasure everyday, treasure every time we get to smile together, laugh and be silly together. Treasure the time I have with him to tell him how much I love him and to thank who or whatever brought us together to give us a taste of heaven. No one could ever fill the place Jon has in my heart and soul, it's impossible....simply that.
So as Christmas approaches, it's time to try to put sadder things to one side and go forward to have the best Christmas ever!! Simple things like this are to be treasured as memory makers and not, as before, taken for granted. I will try for the rest of my life, never to take life for granted again. Life is to be lived and loved before we all say goodbye to this world, otherwise what is the point of it all? The best mark to leave in life, is a smile on faces when your name is mentioned :)

15. Having The Strength To Carry On...

Time passes and things don't get any better, I sit and wonder where do I get the strength to carry on......then I look at Jon, and the answer is there, right there. I don't need any other reason, Jon is all I need.
Some days it all gets too much for both of us, but on this journey there is no day off, you have to carry on, days can seem endless.
The days of me trying "to fix" this are over, the days of making sure Jon has all I can give him in the way of love, care and comfort are here. I knew these days would come, but I pushed them away trying not to think about them, but here they are. These days are harder for Jon, but for me they have lit a fire of determination that everything I can possibly do to make these months as easy on him as possible, will be done. As the line of a song goes- I will love him through this- that is all I have left to do.
I now have to fully go with my instincts, if I think something can be done to make life easier for Jon, I will ask and it will be done. And woe betide anyone who gets in my way! I cannot wait about dithering, wondering any more, the time I have with my Jon is so much more important and precious.

Day to day life of the humdrum sort, still goes on around us and we do the "normal" things that everyone has to do....and that to some extent helps us through. Selling the house (or trying to!) has put so much more stress on us, people know our situation, but can be so thoughtless in regard to the house. Our estate agent has been really good, she is doing all she can in trying to sift out time wasters. All we want is to sell, move, and make a little home for however long we have left together. Selling is important, Jon wants to put his affairs in order and have less stress in his last months....is that too much to ask?
My feelings on the subject of people and selling cannot be printed here!

My thoughts are turning towards Christmas, I love Christmas, but this Christmas will be different.....I am looking forward to it as usual, but in another way I'm not. It means time will have marched on further and I wont be able to get it back. So the positive in this is, make it a good one, make it a happy one, make it one I  will remember for the good times.  We're back to the making memories thing that I sometimes find difficult....not wanting memories but wanting/needing Jon. But realistically I will need those memories to carry me through days which I would rather not think about.

These days we take comfort in the little things in life, sitting watching tv together holding hands and just "being", that brings a contentment to both of us. The days when the grandchildren come round to see us bringing laughter and chaos in their wake. Days of chatting to our children mean so much more now, things that have been taken for granted in the past. Extended family, the ones  who regularly pop in to see how we are and share a cuppa and a little laugh. These things are precious and priceless, again things that have in the past been taken for granted.
We are now looking forward to my eldest son Karl and his girlfriend Lauren's engagement party, which is in a few weeks. A chance to share their happiness and relax in the company of friends and family.
We also have my sister's Ruby Wedding celebrations later in the year, but right now, that is too far away to contemplate. Family and friends can be the richest thing you can have at times like this, so if you are in the same position as ourselves, remember to enjoy the little things in life while you can. You really don't need any more than that.

Awareness needs to be brought in the treatment and status of Lung Cancer, it is too easily brushed under the carpet as a smokers disease. The stigma of "you've brought it on yourself" attitude  needs to be addressed and soon! People don't realise just how many non smokers also get this dreadful disease!
The question of "do you smoke" is always asked......does it matter? Lung cancer is lung cancer and is such a big killer!! If you have lungs, you are at risk and that is it. No one deserves to have to go through the terrors of lung cancer....and believe me, it is terrifying!
Macmillan, Marie Curie, Lung Cancer Survivors Foundation, Faces of Lung Cancer, and so many other groups are trying so hard to bring lung cancer to the forefront.....but how many listen? It's so sad.
Cancer of any description needs be fought on the highest fronts, but how many of you think of lung cancer in the same way as other cancers?

So in summing up, don't let life pass you by, enjoy it for what it is on a daily basis, be thankful you wake to another day and  be thankful for family and friends.
I will be eternally grateful for having Jon in my life, the deep love we share and the overwhelming joy he brings to me...I couldn't ask for anything better than that! That gives me strength to carry on....that is love.

                                         
                                                       I love you Jon Roberts!