Topic: Anthony died on 30th July in a London Hospice

My darling husband died from this awful disease nearly four weeks ago. He was so brave and he fought so hard. We thought he had much longer, he was doing so well and he wanted so much to live. He was only 64 and we had so many plans of things we were going to do together. He was about to start a really promising phase 1 trial that I had posted about on this site and we were so positive as we had been throughout his battle but he started to get pain and within a few weeks he died. During those last few weeks the doctors told me he wasn't in the final stages and I wondered why he was so restless and agitated, especially at night.
In the last 2 weeks we were together night and day. He went into the hospice, not as a terminal patient, but to sort out his pain medication and I stayed in his room with him. He wanted me to be there all the time and I wanted to be with him. I became exhausted through lack of sleep. Tony could only sleep for short periods and would call for me every few minutes. Only on the day he died did they realise he was in the final phase. They told me he had 3-5 days and later revised it to 2-3 days but he died 4 hours later. I was with him and so was our daughter who is also devastated. I am so glad he didn't take a long time to go through those terrible breathing phases but I am so devastated that the doctors didn't recognise that he was dying sooner because I would have wanted him to be sedated and he needn't have suffered so much pain and agitation. I so much want to change those last few weeks. I want them to have been peaceful and easier for him. I think he deserved that . He was such a wonderful man- a great leader and educator who always fought to help others and never himself. Even in hospital he was always more concerned about the doctors and nurses careers, work loads etc.
I miss him so much now that life is unbearable and I can't see a perspective any more. We are not religious. We always talked about every thing and we were always together. I need to talk to him about this and to tell him how much I miss him and how tormented I am about those last few weeks. Instead all I can do is feel such unbearable pain and sadness.
What a terrible disease. Perhaps I will try to help others with cc in some way if I can.
Pauline

Re: Anthony died on 30th July in a London Hospice

Pauline,

I can hear the pain in your voice, my mother is gone 3 weeks now and her absence is palpable, how do you replace the person that filled the house, the person that everyone picked up the phone to call?

There are so many decisions to make with this disease and everyone on this discussion board has regrets but the fact of the matter is that we all did the best we could with the information available at the time so give yourself a break on that one.

Pauline, even if you are not religious, I still encourage you to talk to your husband, you need to get it out one way or the other. I am lucky to have lots of brothers and sisters and my Dad and you have your daughter, maybe you can make a list of silly things to do with her that your husband would have enjoyed, maybe you can live for him.

Patty

Re: Anthony died on 30th July in a London Hospice

Pauline, my sympathies to you and your daughter. By all means talk to your
husband, he could be waiting to hear your voice!  Remember he has only left the room and where ever you go he is right there with you, in your heart. The fact that you did not practice a religion does not mean God does not hear you and God knows what is in your heart. When you are up to it you can help us all by writing your letter as a Caretaker and sending it to me. Sophie and I are collecting letters to send to the Oprah show and if we are lucky enough to have her do a show on CC we will have brought this monster out of the closet so to speak. In the meantime perhaps you can find some peace knowing that what you and your husband had was beautiful and you created a wonderful daughter who also needs your support now as well. Prayers and thoughts go out to you and your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Anthony died on 30th July in a London Hospice

Dear Pauline,

So very sorry that your soul mate has moved on.  Please be kind to yourself, he would not want you beating yourself up.  Anthony knows that you did your very best for him.  You and your daughter need to lean on each other through this terrible grieving time.  Perhaps getting involved in CC fighting down the road will be just the ticket to help fill your time.  You may not be religious, but I will lift you and your daughter in prayer.
Karen

Wishing all God's blessings!

Re: Anthony died on 30th July in a London Hospice

My condolences to you and your daughter. My prayer for you is that you find peace. I take great comfort in the fact that we are making an effort to write letters and make the CC story known to the public, and hope you will take comfort from this also. We need research, to find a cure so that other people will not have to endure what all of us - our loved ones and ourselves - have had to endure.

Joyce

6 (edited by JeffG Sun, 24 Aug 2008 18:49:08)

Re: Anthony died on 30th July in a London Hospice

Dear pauline,  My sincere condolences for you and your daughter.  I agree with Patty.  Religous or not, if you feel you need to talk to your husband, I would find a quiet peaceful place and talk until your heart is a little lighter.  If the table was turned, I certainly would do so.  I talk to my Dad and Grammie now and then.  Even if it is just to say I love you and miss you.  I've even asked them to keep an eye out for me and if they can, lead me through my journey where ever it may be headed.  God's strenght and unconditional love.

God bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Anthony died on 30th July in a London Hospice

Dear Pauline

I am so sorry that you are finding life unbearable without  Tony.

When we look back we wish that we could change so many things and the pain that we feel because we cannot change anything is so awful.
This is something that no matter what others tell you happens, it cannot be written or spoke about. It is felt so very very deep inside us.
I remember reading one of your first posts and you put things in detail to help others on this site and I thought then I wish I had read something like this when Alan was alive. I could'nt change anything.

Talk to him, as often as you wish. let your tears bathe your face.
Tell him everything he is still around you.
He will never leave you.

love and light Alan's mom

U.K.Member

Re: Anthony died on 30th July in a London Hospice

Thank you so much all of you for your support and sympathy. It is very helpful, especially because I know that you do really undestand how I feel more than most people.
I  know I tried my very best to support my husband but I feel very dissatisfied at my efforts. I now look back at the delays, for example, in getting started on treatment after the radiotherapy in February and , while I know it is really the system which is at fault, I can see ways in which I should have done more to speed things up. Every one, including Anthony, thought I was doing a really good job but all I can now see are my weaknesses and that may be he would still be alive if I had pushed them harder. Anthony trusted me completely and I think he felt safer knowing I was fighting for him but I just feel that I have failed him. I undestand, objectively, that it is the lack of research and funding for treatments for this disease which is the real problem but I suppose the up shot of this is that those of us who find ourselves in the position of advocate and carer for someone we love with this disease is that it becomes our responsibility to find a way through it for them, to enable them to live as long and as well as possible. I used to think I was doing a pretty good job but all that has changed in my mind. I clearly wasn't good enough.
Yes, Teresa, it is the things we can't change that seem to make life so unbearable and I know that they will remain inside me for ever. What I can't see is how to live with this pain.
I know Tony won't leave me completely and I also imagine what he might say to me now but without him here nothing seems to make any sense.
Thank you again, everyone, for your support. I hope to find a way to contribute to the on going fight for other sufferers with this disease.

Re: Anthony died on 30th July in a London Hospice

Dear Pauline, I'm so sorry you've lost your sweet Anthony.  I pray God's strength and comfort for you and that things will soon be a little more bearable.

Carol

Re: Anthony died on 30th July in a London Hospice

Dear Pauline, Everything you feel is what I am feeling already and we are not at that dire point yet. Anthony's life was taken out of your hands when he was diagnosed with this monster. There is NOTHING more you could have done. To be there with him, to be a loving wife and partner, you did the best you could do and thats all anyone can ask. Teddy is always apologizing to me for the way he is now and it breaks my heart. What's worse is I know down the road what he is really going to have to face. Everyone keeps telling me what a fabulous job I am doing and if they ever needed an advocate they would call me. Yeah, well, they are not walking in my shoes or yours. Family and friends come and go, they see a smiling Teddy but they don't spend almost 7*24 with him. You must know that you did all you could and in the most timely manner you could.
For those who have already gone through the worse, could this painful aftermath be that our burden has lifted and it has left a "Caretaker" void in our lives? Not just because it was a loved one but we were so busy we had no time to think and now it is just emptiness. I don't know I am just rambling on here, one of my down days, I guess. But as time goes on you will find the strength to remember the good times and to carry on as that is what an Anthony would want. I know as I am married to a Salvatore!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Anthony died on 30th July in a London Hospice

Dear Pauline,
I am so sorry for your loss. Words can't console you right now, but there are people here who understand your pain and grieve with you - you are not alone.  I wish you some consolation and peace during this sorrowful time.
-Joyce M

Re: Anthony died on 30th July in a London Hospice

Thank you for taking the time to reply. This does really help. I was thinking today about how Tony used to say to me that he felt more sorry for me in all of this because I would have to deal with the aftermath. Instead of seeing myself solely in the role of carer with all the responsibility that entails I am beginning to see that what we went through we went through together, that when he suffered I suffered as well and that when he died a large part of me died as well. The small part that remains is now having to deal with that aftermath which seems an impossible task. I'm not saying this to feel sorry for myself but rather to try to come to terms with the part of me that keeps punishing and tormenting myself. Does this make sense to anyone?
Pauline

Re: Anthony died on 30th July in a London Hospice

Absolutely makes sense to me, I stated that above, sort of! You also have all this void right now that was filled with care taking before. In time you will fill those voids with other things. Someone who cared as you did will certainly fill other needs and hopefully they will be needs of a different nature! You will make it through!! I believe everything you are feeling is only natural right now but down the road things will change. Its all in the natural progression of life.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Anthony died on 30th July in a London Hospice

Thank you Lainy and Joyce and Carol,
I am still tormented by all the things that might have been , the "if only I had...." and I don't suppose this will ever go away. I am also starting to do the only thing that makes any sense at the moment which is trying to help others on this site to find their way through their frightening journey with this disease in the least difficult way possible.
With very best wishes to you
            Pauline

Re: Anthony died on 30th July in a London Hospice

Hello, I am new to this site & am grateful to have found it. My husband Jim passed away last Tuesday 9/02/08 after only 7 weeks. He was a normal health man when this started & now he is gone.  He was only 62. Everything you are feeling & have gone through Pauline, I am now feeling too. Finding this site & reading all of these posts is helping me, but it does not take away the pain, loss & frustrations. We all share this horrible common grief for a devistating disease. I too hope that in time I can help others to cope with what I have been coping with as you, Pauline, & the others here have already been a help & comfort to me.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Anthony died on 30th July in a London Hospice

Hi Darla...  Thanks for sharing.  My sincere condolences for the loss of Jim.  Please feel free to jump in when your ready.  We welcome you to a very supportive site.  Loosing a loved one to such a horrible disease and sometimes with little or no warning, is so emotionally challenging.  Darla, remembering those special loving moments will help.  And always remember whay Jim would say to you right noe, something very supportive I'm sure.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Anthony died on 30th July in a London Hospice

Thanks Jeff & thank you for being here for all of us. I have also posted on the introductions board explaining a little more of my situation.  We meet in high school when I was only 15. We had 45 years together & had a good life. We never thought our time would be so short.  I stated on the other posts that it was more than many have had, but I am selfish & wanted more! There is a big hole in my life now & I guess all I can do is deal with it One Day At A Time. Hopefully I can offer some help & comfort to others who have been there or are going through this now. After what I have been through & how quickly my life has changed forever, I really to feel the pain that everyone here has or is now going through. God Bless You & all the others on this site. I am so gratefully to have found all of you.

Thanks To All Of You
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Anthony died on 30th July in a London Hospice

Dear Darla
I am so sorry about the loss of Jim. So hard to bear, such pain,
so many tears.
I too lost my son Alan in just 8 weeks, so swift and sudden.
No time to catch a breath, no time to think, only just do.
The seasons change and I often ponder about how some go so quick and others linger much longer.

So many more at this moment in time, all with memories and so many what if's.
We are all here at any time to read, write and respond.
Tied together for ever, what is it that makes this cc so unique.?

My love to all at this sad time love and light Alan's mom

U.K.Member

Re: Anthony died on 30th July in a London Hospice

Thanks Teresa
Your kind words are a comfort to me. All of this is so hard to understand right now. My daughter-in-law found this site for me & I am so grateful to have found all of you. I now feel like I have another "family" to go to for support. It seems that only us who have lived with this can truly know how it feels. Everyone's story is a little different, but in the end we all have this horrible cancer as a common bond.  Hopefully I too can be of some help & support for others who come here seeking it.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Anthony died on 30th July in a London Hospice

Darla,
    I undestand everything you are going through and think of you during these terrible days and nights.
   It is six weeks today since Anthony died. I miss him unbearably and feel so alone without him. I go through everything that happened in those last few weeks and months in my mind over and over again. I try to do things to fill in time like get photographs enlarged and framed or make an albumn and then I realise again that he is never coming back and it all overwhelms me once more.
I am going to Italy tomorror for 6 days because we used to go there a lot and loved it so much. I think I'm just searching for him but I know I'm just going to keep on crying. All I can see ahead are empty expanses of time that have to be filled and it seems unbearable.
      I too have found a great deal of support on this site both during Anthony's illness and coming on here each day gives me some sense of perspective. The idea that we may be able to help other sufferers of this disease is one of the things that keeps me engaged with life and I hope it will do the same for you.
     I just wanted you to know that I am thinking of you and am crying with you.
Pauline

Re: Anthony died on 30th July in a London Hospice

Thanks Pauline,

It has been 1 week today for me. All of the feelings that you have expressed are mine too.  In an odd sort of way, at least knowing others have these feelings too comforts me some. As we grieve together, hopefully we can also heal together. Right now it seems so hopeless & frustrating.  Life will never be the same for either of us. All we can do now is take One Day At A Time. Try to enjoy your time in Italy. It may make you feel closer to him as it was somewhere you enjoyed being together. I will be thinking of you. Take Care & God Bless You.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Anthony died on 30th July in a London Hospice

Pauline...have a safe trip to Italy accompanied by the loving memories of Anthony.  My thoughts are with you.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Anthony died on 30th July in a London Hospice

Thank you Darla and Marion. I had a beautiful and overwhelmingly sad time in Tuscany, mainly completely alone, going to all the little towns, art galleries, piazzas etc that we used to love so much. I think it helped me because I felt so close to Anthony there that I could talk to him a lot and ask him to help me through this. However, it also underlined how completely and utterly alone I feel inside and, when I arrived back at Gatwick airport and picked up the car, as we always did together, it all got a bit too much for me and I realised once again that he is never coming back and that this awful painful emptiness is never going to go away.
Despite this, I do feel I accomplished something over there and that being somewhere so beautiful with so many memories was important. I still re lived the awful last few days and weeks again and again in my mind but I also remembered some earlier, lovely times which was a step forward.
How are you at the moment Darla? I know it is only two weeks for you which is such a short time really. Do you find that it seems longer? It is seven weeks since Anthony died but it seems such a long time to me. Let me know how you are. Take care!
          Pauline

Re: Anthony died on 30th July in a London Hospice

Pauline,

I am glad you went to Tuscany. It sounds like it was a good thing for you to do. I know what you mean about all the memories, but I like you still relive the last few days & wonder if things could have been said & done differently.  It has now been 3 1/2 weeks & it is still very hard, some days it seems like it has been forever & others like it was yesterday. I do try to remember all the good times & hope to be strong enough to do what you did & revisit some of the places we spent time together in happier healthier days some day.  I'm sure it was rather bittersweet, feeling closer to him in some ways & missing him so much at the same time. I know exactly how you are feeling.  It is the little things (like picking up the car) that really get to you. Everyone says things will get better with time. Right now that is hard to imagine.  I just keep remembering what my daughter-in-law said shortly after Jim passed. He is no longer here, but he will be in your heart forever. I try to hold on to that. Pauline, please keep in touch maybe together we can be stronger.  My thoughts & prayers are with you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Anthony died on 30th July in a London Hospice

Darla,
        It's really good to hear from you and I understand exactly what you mean when you say that sometimes it feels like it's been forever and yet it's still so raw and unbelievable. I don't think I have completely accepted that Anthony has gone and it still sometimes feels like he's in hospital again and I will be going to see him and bring him home soon.
       Like you, I still go through the trauma of what happened in those last few awful days and I so wish things had been different - if only I had known he was dying, at least for a couple of days, I feel I could have made things better for him and, in turn, that would have made things slightly more bearable for me now. Then there's the terrible shock and realisation that suddenly he's gone and our life together is all over. The shock must be even worse for you to cope with Darla because you didn't even know Jim had cancer until the very end. That must be so hard for you.
          On other days I think about happier times and cry because they are over. On days like today I think about the future and it terrifies me to think of growing old without my husband.
          It's just basically so terribly sad isn't it? Sometimes I just beg him to come back.
          But, as our daughter said to me this evening, how wonderful to have had such a love and such a soul mate, not everyone has that. Of course it makes the loss so much harder to bear, doesn't it? I truly am so grateful for what we had and I think your daughter in law is right. In one sense we will never completely lose them because they will be in our hearts for ever.
          I talk to Anthony a lot now - something I couldn't do in those early days- and I find it helps. I am thinking about you a lot, Darla, and often wonder how you are. Take care and please keep in touch. Very best wishes.
           Pauline