• From: Wisconsin
  • Registered: Sun, 07 Sep 2008
  • Posts: 1,996

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

Pauline,

It is incredible how closely our lives seem to imitate each others. I am feeling & thinking & doing almost exactly what you are describing about yourself.  Jim & I seem to have gone through almost the same experience in the end that you & Anthony did.  Many people never have what you & I shared with our husbands. I know I should be glad for all the years & fond memories we shared, but I guess we never thought it would end. I'm selfish. I wanted more.  I am thinking about you also & will keep in touch. Hopefully we can help each other to be strong through this most traumatic time in both our lives. Take care of yourself, as that is all we can do now. We did our best for Anthony & Jim & I am sure that they would now want us to do our best to take care of ourselves. (Easy to say & hard to do!)  It is just so comforting to me to know that everything I am feeling is normal under these circumstances as it is also what you are feeling.  Will the pain ever lessen? Again, Try to be strong as I will also. Keep in touch.

Darla

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

Dear Pauline - I havent logged onto this site for a while and I was very sorry to hear about Anthony. You wrote to me several months ago as I am in a similar situation to you. Ray is 63 so I think we must be of a similar age, and I also have a daughter.
For 18 months we have been lucky as Ray has been fairly well, but this last 2 weeks things have started to change so I think it is the start of the end.
I think you have nothing to blame yourself for, you couldnt have done more for Anthony, you stayed with him all the time for his last two weeks. However, I also think that the guilt is something everyone goes through, I lost my Dad a couple of years ago and still blame myself for not staying with him on his last night - he died before we could get back to him in the morning.
When you are watching anyone you love die, it is totally debilitating, and you really arent thinking straight by the end. I am sure you did all you could for him and more.
I am glad you are starting to make small plans for the future - I am sure you will find you have more friends and support than you ever thought you had.
I think we keep ourselves strong for our loved ones while they are ill, so it is natural when they go we let ourselves feel all the pain we have been holding in for so long.
I send you all my love.

  • From: London, U.K.
  • Registered: Mon, 17 Mar 2008
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Re: Anthony died on 30th July in a London Hospice

Dear 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.
        Pauline

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

Hi Pauline,

I was thinking of you also, knowing that it has been 2 months since Anthony passed away. Yesterday it was exactly 4 weeks for Jim & as you said, tomorrow it will be 1 month. I have also been feeling very low & sad. I also wish that he could hold me or kiss me & tell me that he is OK & that I will be too, some day. As of right now I am fortunate to have several friends & relatives that listen to me & help me talk things through, along with talking to Jim. With others I pretend that I am doing OK, under the circumstances, as you do. Good luck with the counseling next week. I hope it will give you some help & comfort. Take care & let me know how things are going for you.

Darla

Sue,

I know what you are going through as I also was there just a short time ago.  Try to be strong.  You & Ray will be in my thoughts & prayers.

Darla

"One Day At A Time"
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Re: Anthony died on 30th July in a London Hospice

Hi Pauline & Darla, Thank you both for your kind thoughts, it is such a blessing to have people I can contact who know exactly what I am going through.
Ray is currently in hospital, he is very jaundiced and has a very swollen tummy due to the cancer and water retention. They tried to put a stent in yesterday but couldnt, they are going to try again today. I am just waiting to see what time I can go and see him. The cancer is about 16cms, so it is taking up much of his liver. He was hoping to have a stent and then go back on chemo to try to shrink it but I dont think they will do that now.
We have all notcied a change in Ray, he has always had a really witty sence of humour, but he is so tired that it is all he can do to put a few words together. He can get out of bed with a great effort, but it is almost as if the husband I knew is no longer there. If they cant relieve the jaundice and acites I dont think his liver will be able to cope for much longer. The only good thing is that so far he has no pain, only the exhaustion, I have read on this site that is how some poeple are right up until the end, so I hope he will be like that.
Being on my own in the hose has given me ae of what it will be like after he has gone, it is the stupid little things that get to you - I went to fill the car up yesterday and couldn't get the petrol cap off - so I had to drive off again! I think I am pretty independent but things like that make you feel so helpless.
I hope you dont mind me chatting to you it somehow helps to write it all down.
Sue

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

Sue,

Sometimes you just need to talk it out.  I also did some stupid things like you. The filling up the car thing was one of them! After Jim passed away, the first night I went home was not quite as bad as I thought because I also had been alone a lot of the time the last few weeks. It has only been a month & I still don't know that I truly believe he is never coming back.  I keep trying to tell myself that atleast he is has now gone on to a better place & is no longer in pain, but it is not easy. The help & support of everyone on this site has really meant a lot to me. Please remember that you & Ray are in my thoughts & prayers. Keep on posting & let us know how things are going.  Take care & try to stay strong for Ray.

Darla

"One Day At A Time"
  • From: London, U.K.
  • Registered: Mon, 17 Mar 2008
  • Posts: 199

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

Sue,
     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!
   Pauline

33 Reply by Darla (edited by Darla Thu, 02 Oct 2008 17:48:39)

  • From: Wisconsin
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  • Posts: 1,996

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

Hi Pauline,

I find that taking walks is helpful, too. It helps me to think & I also talk to Jim.  I seem to have short bouts of crying from time to time.  It was in the 90's the day Jim passed away a month ago.  Now it is only in the 50's. Today it was cold, overcast & drizzly all day. I also wonder how we will be weeks & months from now. It is hard to even imagine years! I feel like the sadness, grief & anger are getting worse not better.  I wonder when & if that will ever change. I am thinking of you too & hope you are doing OK. Take Care & please keep in touch.  If you want you can email me directly by  clicking on email on the left side of this post.

Darla

"One Day At A Time"
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Re: Anthony died on 30th July in a London Hospice

Dear Paulina and Darla,
Thank you so much for your replies. The good news is that at the second attempt they managed to put a stent in for Ray. I dont know much more than that at the moment as I didn't get to talk to the surgeon as I had to go at 8pm and he hadn't been to see Ray as he only came out of surgery at 7pm. I am hoping that over the next few days he will start to feel a little better. He is in St James hospital in Leeds, they have a fantastic reputation and I know he is in good hands. I will have more news when I go today.
I hope he will be well enough to come home soon.
This episode has really shaken me though, I thought we would loose him in the next few days, I suppose we might still, but there is a chance we may have him a bit longer.
My daughter is taking it quite hard, she is a final year medical student and she knows exactly what happen when his liver fails, it is really hard for her trying to do her work in the hospital, studying and coming home from Hull where she is based several times a week to see her Dad.
It sounds so lonely you both taking walks alone on opposite sides of the world, but I suppose you need time on your own to let it all out. Someone once told me that you should not expect too much from yourself for a year after a death of a close one, I dont know how true it is but the physical and mental effort of looking after someone must take a long time to get over.
Sending you both my love,
Sue

35 Reply by Darla (edited by Darla Mon, 06 Oct 2008 05:56:47)

  • From: Wisconsin
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  • Posts: 1,996

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

Hi Sue,

Thanks for your kind thoughts & concern.  It is amazing that even though we are all going through this at different stages & in different ways we are still able to help & support each other. I am glad that they were able to place the stent for Ray. From now on in all you can do is take it One Day At A Time.  Atleast I was fortunate that here I was able to stay with Jim at the hospital when ever I wanted or needed to. I am not sure if it is better or worse to know what to expect. I didn't learn much about this disease until Jim passed & I felt I would like to have know more so we could have known what to expect. Interesting that the most informative information I got was from a 2nd year med student. Now hearing that your daugther is a med student & you both are aware of what to expect, I am not sure which is better or worse. Good luck today. I will be thinking of all of you & praying that things will have improved. Please keep on posting & let us know how you are doing & how things are going with Ray. We are all here for you. Take Care.

Love to all of you,
Darla

"One Day At A Time"
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Re: Anthony died on 30th July in a London Hospice

Hi Darla,
Ray has come home from the hospital and they say the Stent is working, but he has odema and water retentiion in his abdomen which my daughter explains is ascites due to the cancer. They have given him water tablets which dont do a thing so we are going back to the doctors today. Reading this website they he probably should have the fluid drained but he is so fed up of hospitals and needles that he doesnt want to know and just says to give the water tablets a chance. Our daughter and my two stepdaughters constantly phone me and tell me to push him to the doctors, but I am trying not to push him too much I have to accept if this is they way he wants to handle things.
I think it depends upon your nature whther it is best to know what to expect. Sam and I would rather know, but Ray wishes he has nver been diagnosed and would rather put his head in the sand and pretend he is not getting any worse.
Do you work, Darla? I have a small business which I run from home, I cant spend much time on it at the moment, but I am wondering what it will be like living alone and working alone here too. I think it would probably be better to mix work with other people.
Are things getting any easier for you? I am told that the first Christmas is hard when you have last someone. I hope to still have Ray by then but I dont know whether I will.
I Thank you for your advise of "One day at a time" - you are right, I will try not to look too far into the future and just deal with every day as it comes.
Many thanks,
Sue

  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
  • Posts: 1,996

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

Hi Sue,

I know that everyone has to make there own decisions on how they want to cope with this disease. Jim had a tube for drainage down his nose & he keep trying to take it out.  Towards the end he was sucessful in removing it & they felt it was better to leave it go if he did not want it. I think he too was just tired of all the needles & things.  I like you would have rather know exactly what to expect to be better prepared, if that is even possible in these situations, but I guess in the end it is what it is. Jim & I were semi retired & have an antique shop.  We live above it. I did reopen the shop, & there are days it is a real comfort to have something to do that we both loved & enjoyed & people to talk to. On other days, I am so sad & lonley that I am not sure if I want to continue to do this alone. It is still hard for me to believe that he is not here & will not be coming back. I sometimes think he is just upstairs or in the other room working on something. There are also days that I just don't want to be around anyone!!!!! I am sure that the holidays are not going to be easy.  At first we were given 6 months, so we thought he would still be here. However, I would not have wanted him to be here in the pain & suffering that he would be enduring. For him this is better & for me the pain & suffering of losing him has just begun. Hopefully with time I will learn how to deal with all of this in a better way.  I just keep hanging on to the thought that no matter what, he will be in my heart forever. Enjoy every moment you have together. Take care of yourself & try to be strong for Ray.

Keep in touch.

Darla

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

Pauline are you OK? We seem to have taken over your posting. Let us know how you are going on.
Darla, we are just waiting for Rays blood results, the consultant will be phoning us to let us know if there is anything more he can do. Ray has ascites and odema and spend much of his time sleeping. His three daughters are all coming round to try to keep his spirits up - they can bully him without him shouting at them - so they are a real blessing. I hope you have close family to help you through the bad times.
Thinking of you, Sue.

  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
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Re: Anthony died on 30th July in a London Hospice

Pauline,

I also am wondering how you are doing as we haven't heard from you for a few days. Let us know things are going for you.


Sue,

Have you gotten Ray's blood results yet? I do have family to help me through. I have a son who lives in the same town & my other son & daughter-in-law are only 1 hour away. I also have 2 sisters & my parents who are still doing well at 82! They have all been very helpful. Trying to keep me going & they are also dealing with ther own grief.  However, they all have someone to go home to & at the end of the day, I am still alone. I guess I'm just feeling sorry for myself. I know that this life is what I have been given & I will just have to learn to deal with it. Hope the news about Ray is good news.

Darla

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

Dear Darla,
It isnt good news the consultant has jsut phoned and he is taking Ray back into hospital  I think his kidneys are also failing now as well as his liver - my daughter says it is something called Type 11 HRS (Hepatorenal Syndrome) which is brought on by liver failure - in other words he is shuttinjg down. At the moment he is in no pain, just sleeps a lot. I am frightened he will not come hope again. You are the first I have told of this - I am trying to compose myself to phone my daughters and his sisters and brothers.
Sue

  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
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Re: Anthony died on 30th July in a London Hospice

Dear Sue,

I am so sorry to hear that Ray is not doing well.  As you know, I was where you are now just a little over a month ago. I know how frightening this all is for you. All I can tell you is to try to be strong. Have you contacted the rest of your family yet? You will need each other for support. All you can do for Ray at this point is to make sure that he is kept comfortable & is not in pain. I can truly say that I know how you are feeling at this time.  All the emotions of pain, sadness & also being afraid of what the future holds. Please know that I am here for you. I will keep you & yor family in my thoughts & prayers. Please stay in touch & let me know how things are going. If I could I would give you a big hug, but you will have to settle for a cyberhug!

Sending My Love To All Of You,

Darla

"One Day At A Time"
  • From: London, U.K.
  • Registered: Mon, 17 Mar 2008
  • Posts: 199

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

Dear 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,
                  Pauline

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

Dear Darla,
Ray is in hospital and the doctors have told us he is in the final stages of multiple organ failure. He is not in any pain just very sleepy. I have sent for his sister in Spain and have told all his relations they can come and see him for half an hour but to tell him jokes and not cry. I am sure Ray knows that he wont come out but he wont want to hear it from anyone it is much easier on everyone to maintain the pretence. I am OK my Mum is with me bless her, Sam has also come home. We are very sad obvoiuosly but Ray wasreally scared that he would be in pain for months and waste away and lose his hair etc and he has done none of these things.
I will keep you informed how things go.
Thanks for being there for me,
All my love,
Sue
x

  • From: London, U.K.
  • Registered: Mon, 17 Mar 2008
  • Posts: 199

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

Dear 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
                       Pauline

  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
  • Posts: 1,996

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

Dear Sue,

I just want you to know that I am thinking of you & that you can contact me directly at any time through my email by clicking email on the left side of the page if you want.  I console myself with the thought that Jim also would not have wanted to go on for months in pain so his passing quickly was a blessing as he is no longer suffering from this terrible disease.  I am glad there are people there to support you during this time.  I feel so badly for you & your family as I know how painful this is for all of you. Please keep in touch. You are in my thoughts & prayers. Both Pauline & I will be here for you whenever you need us.

Love & Hugs,

Darla

"One Day At A Time"
  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
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Re: Anthony died on 30th July in a London Hospice

Hi Pauline,

Glad you are back on. Yes I did get the email & have replied.

Darla

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

Hi Pauline,
I am sorry I didnt answer to your message of yesterday. You dont know how much it means to be able to speak to you and Darla here, or I suppose you do know.
I havent been able to sleep and it is such a comfort to be able to write down my feelings, somehow it is more theraputic than speaking with someone it is as if by writing it you purge yourself of a bit of the grief. I am in limbo now. I know in the coming week or so I will have a big funeral to organise. We live in a village and everyone knewand loved Ray for his sense of humour. He wants a burial in the village church so as well as family and friends there will be half the village there. I dont know how to approach the subject with Ray, I know that when my Dad was in the hospice the doctor there told him there was no hope and he didnt want to hear it even though he knew. I think Ray is like my Dad in that respect so I guess I will leave it up to him to open the can of worms. We have talked enough in the past for me to know what he would want. I feel awful talking about his funeral and he hasnt died yet but I cant help it. It is dawn now, the hospital and doctors have been very good they say we can go whenever we want and stay as long as we want. I hope Ray stays lucid enough to talk to everyone who will be visiting him today, especially as his three grandchildren want to come this evening. Sam has told me that when the kidney fails it causes confusion and he may go into a coma. The main thing is that there is no pain for him just now. The hospital want to discuss pain relief today and I have to sign a form to say if his heart stops we dont want him revived. It is all coming a bit too fast, even though we have known about this for 20 months, we still didnt expect things to go so fast, I know it is a blessing in disguise but it is still difficult to think that only two weeks ago, Ray was cutting the grass and enjoying the sunshine.
Well my friends I better get dressed and face the day. Thank you for being there for me,
Love Sue x

  • From: Scotland
  • Registered: Wed, 29 Nov 2006
  • Posts: 164

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

Sue

I am so sorry to read about Ray.  I must confess that I very rarely visit this part of the site.  I think it is because I don't want to read about the inevitable.  Silly, I know, but it's just the way I am.

The shocking thing about this disease is the speed that things can change.  I am so glad that Ray is peaceful and not in pain.  I know from my own experience that this was the main, selfish consideration I had when I was diagnosed.

Thinking of you and your family.

Ron

  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
  • Posts: 1,996

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

Hi Sue,

I am so sorry & I am here for you.  Although this disease seems to treat everyone differently. I can tell you that Jim also had some confusion towards the end & was in a coma on & off. He would appear to come out of it a little from time to time & seemed to know when people where there. I think it is a good thing for them to know they are not alone & everyone is there for them. Even when he wasn't able to communicate, it seemed that he knew we were there for him. We also had to deal with the do not resusitate issue towards the end. It seems to make it so final even though it is not yet over. Jim also was doing all normal things 7 weeks before he passed away. Unlike your situation, we had no idea of what was going on at first. I sometimes wish we had known sooner as it really blindsided us, however, it does not seem to matter in the end as the outcome is the same.  You have known for 20 months & it still is coming at you so fast now. I too knew what Jim's wishes were, however, at one point I did just mention that if things got worse, was that still how he felt. I too did not want to bring it up & be negative, so I tried to make it sound like things were going to be OK, but that I just wanted to know in the event things went bad. Now, I think he knew even then that he would not survive this & in his own way was being strong for me. I can not stress enough that pain relief is the important thing for him right now. You can not stop this terrible disease, but you can help to make him comfortable. It is good that the hospital will let you be there whenever you want. We also were able to do that. Again, know that we are all here for you.  Keep posting as much & as often as you need to.  All you can do for the moment is, as you said, get dressed & face the day. You can deal with this. One Day At A Time.

Hugs & Love,

Darla

"One Day At A Time"
  • From: London, U.K.
  • Registered: Mon, 17 Mar 2008
  • Posts: 199

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

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
                          Pauline