pauline
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Dear Joyce,
I am so sorry for your loss but what beautiful final moments you have to remember in your heart for ever. How wonderful that you are thinking of fighting for other victims at this time. I am thinking of you at this very difficult time. Take care,
PaulineDear Joyce,
I am thinking of you and Butch during these difficult days. I hope he will be comfortable, pain free and peaceful . I am sure he is listening.
Take care
PaulineDear Kay,
Thank you for sharing your father’s story. This really is a devastating disease but how wonderful that the surgeons were able to operate and to have given him more time to enjoy life with the family. He must appreciate those grandchildren so much. I hope he continues to do well. Your story will give hope to others who are diagnosed with this disease.
Best wishes
Pauline
( U.K. member).Dear Sue,
I am thinking of you day by day and hour by hour. I think it is wonderful that you have organised all the family to come and that Ray is comfortable and still able to communicate. These are moments to cherish. I too kept up the pretence and didn’t tell Anthony he was dying , even when the doctor told me. I felt it was better to give him some hope at least. It must be so terrifying mustn’t it? As I have said before, it was only on the day he died that the doctor told me that Anthony probably had 3-5 days(he died 4 hours later). Just after this when they were about to sedate Anthony for the final time, I spoke to him. He was semi conscious and still in pain and discomfort. He was unable to speak. I told him that the doctors still thought he had broken his hip(this was what they had thought earlier in the day) and that I would try to organise everything with the hospital but that first of all they were going to give him strong pain relief to help him to rest. He seemed to take this in. I then told him that our daughter had just phoned to see how he was and that she would be coming to see him later. I then told him that our daughter had said that our little grandaughter was making him a beautiful card with lots of kisses all over it with the words “get well soon grandad. We love you”. Anthony acknowledged this with a little nod. They then sedated him and that was our last converstion. I am crying now as I am writing this but I think it was better for him to go thinking about this than to be told he was dying. Maybe he half knew inside or maybe he gathered this as the hours wore on and his breathing started to fail. It is so hard to know.
I hope Ray continues to be comfortable and is able to talk a little. I am sure he will open up the conversation about his death if he wants to. I am also sure that he will be thinking of you too and worrying about how you will cope. It is all such a terrible shock. People think that if your loved one has cancer you should be prepared but it just isn’t like that with cholangiocarcinoma. For both Darla and myself and now for you as well this final phase has come as a terrible shock because of how well all our husbands were only weeks before.
Don’t worry about the funeral – plenty of time for that later. Cherish each moment that you still have together. Say all the things you want to say. I hope Ray remains comfortable and doesn’t suffer. This is the most important thing.
Thinking of you
With love
PaulineDear Darla,
I have just sent you an e mail but it hasn’t shown up in my out box so I am not sure if you have received it. Please let me know!
Best wishes
PaulineDear Sue,
I am also so sorry to hear that Ray has gone back into hospital and that things seem to be getting worse for him. I am sorry I have been out of touch for a little while. I had problems getting logged in but I have been following your posts.
As Darla says the main thing now is for Ray to be as comfortable and pain free as possible. Believe me, if you can achieve this it is such a huge thing. I also know that you will always remember these days and I hope there will be some tender memories among such sad ones. Do ask for help from those around you, for example, in getting some rest yourself. You will need it to keep caring for Ray. I too am thinking of you and am remembering what Anthony and I went through 10 weeks ago. I hope that things will be peaceful for you both. I too will be here for you throughout these terrible days. Please keep us informed of how Ray is and how you are. Please also ask for any advice you may need. If I can help I will.
With love and support,
PaulineSue,
Please keep chatting to us – I also find it really helps. Which hospital is Ray in? I hope they manage to get a stent in because that could well make him feel a lot better. If you think you might need another doctor to have a go at the stent, let me know because there is one of the best in the world at King’s. He really helped Anthony where others had failed.
Ray is obviously feeling very weak and low at the moment. Has he lost his appetite? I am so pleased he is not in pain though and I hope he carries on like that. I hope the doctors will be able to tell you exactly what they think his situation is and how they can help him. I think this will help you to prepare yourself for what is ahead so that you can in turn support Ray through this.
I feel so sorry for you having to also deal with being on your own in the house at this time. I suppose in a way I was lucky that I had got very used to this as Anthony had spent many weeks in hospital over the 2 years with cholangitis, having stents replaced etc. I remember how this felt at first and it was very difficult.
I don’t know whether they will suggest hospice care for Ray at some point but one of the positive things about this as opposed to hospital care is that you can stay there 24 hours a day. They used to give me a “put you up bed” in Anthony’s room and so I was with him all the time. I found visiting hours very frustrating in hospital – and pretty inflexible.
Anyway, I am thinking of you both and hope there is better news about the stent today. Take care!
Pauline
Darla,
I am still thinking of you. It has been a little sunny, if cold, here in the last few days and I have been going out for walks on the common near where I live. I find it helps me to think. I have a place where I sit and talk to Anthony and do the silent crying that I seem to be doing a lot at the moment. I have been thinking about you on these walks as well and wondering how we will be in the coming weeks and months. Take care!
PaulineDear Darla,
I am thinking about you tonight because I know it is a month tomorrow since Jim died. I hope you are coping as best you can. I have been very low today. It was 2 months yesterday since Anthony died and I have been feeling desperately sad. I just need him to come and give me a cuddle and tell me I’m doing ok. I am starting counselling next week and I hope it will help – perhaps just by talking to someone whose job is to listen. Sometimes I feel too much of a burden on friends and family and pretend I’m better than I am. Please take care of your self and keep in touch.
Pauline
Dear Sue,
How kind of you to contact me when you are going through such a terrible time yourself. I think you are absolutely right that all the pain we have been holding in for so long overwhelms us when they have gone.
I am so sorry to hear that you think that Ray is in the final stages. I hope that he will be comfortable and that he will not suffer. I also hope that you will be able to share some peaceful, loving moments together. Please also try to keep your strength by getting some sleep even though I know how hard it is. Please keep us informed of how Ray is going on. Thinking of you.
PaulineAlice,
I am so sorry that you have lost your husband. It is so hard to accept that they have gone. My husband, Anthony, died 2 months ago and I still can’t really believe that he’s not coming back to me. I am so glad for you that John did not suffer so much at the end. We weren’t able to have that last beautiful conversation that I know you will remember for ever.
I found that after a few weeks I was able to start talking to Anthony and I find it helps. I ask him to help me cope and he does but it is so hard.
I hope that you will find the strength to cope without John and that you will treasure the time you spent together and the love you shared.
PaulineCharlene,
I hope these last days will be peaceful for John and that he won’t be in pain. I also hope that you can have some time to hold each other and to feel the love you share. You will remember these days for ever and I hope there will be some beautiful memories. Thinking of you both.
PaulineDarla,
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.
PaulineAll I can say apart from how sorry I am is that this coming period is one that you are going to remember always. When Anthony was in his final stages the hospice staff didn’t realise it and kept giving me false hope and so I didn’t do things in exactly the way I would have if I had known that those were his (and our) last precious few weeks. I regret this very much and would hope that for you both it can be a peaceful time without pain where you will treasure some loving memories to keep forever.
Thinking of you and your Butch,
PaulineRon,
I hope your gemcitabine treatment goes well. My husband, Anthony, had it combined with cisplatin and he tolerated it all pretty well – for 6 months in all. You mentioned that a trial might be the next step. I don’t know how you would feel about travelling to London for treatment, or, indeed if this trial is also under way in Scotland, but there is a promising trial of a drug called BIBW 2992 at Guy’s Hospital led by Dr Spicer. My husband, Anthony, was offered it but, unfortunately his disease progressed too far before he was able to start it. Just something for you to be aware of and to maybe ask about.
Good luck with the chemo,
PaulineGood luck to you and your husband Jan. The Mayo transplant protocol is without doubt the very best chance for someone with this disease. My husband, Anthony, and I were prepared to sell our house here in the UK to fund the treatment there if he had been eligible. Unfortunately, he wasn’t for various reasons. Dr Gores was excellent when we contacted him too. I really hope your husband stays on the list and gets the transplant. Fingers crossed!
Pauline
London UKThank 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
