pauline

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Viewing 15 posts - 91 through 105 (of 187 total)
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  • in reply to: Not sleeping #26088
    pauline
    Member

    Dear Charlene,
    It is very early days for you still and, of course, you are struggling to cope. It’s so terribly hard and such a shock to find yourself alone. Darla and Joyce have already said a lot of what I would say and I hope it might help you to keep in touch with us. Have you read the posts that we have been writing over the past months? We would love you to join in so that we can support each other.
    I am sorry about your sleeping problems. Why not try going back to the doctor about this? If you are tired all the time and having such bad nights this will make you feel so much worse. Have you thought about counselling or therapy? I found it did help me to talk through my most serious issues with someone.
    I think that trying to function is an important step in this awful process even though you feel very bad inside and it seems that you are really struggling with this. I would suggest that, as a first step, you seek help from your doctor. Tell him or her exactly how you are and hopefully s/he will offer some practical help.
    If you can be helped to start functioning a bit- even if it’s only that you start to make lists of a few things to do each day and tick them off as you do it – you can progress from there. I know how hard it is to motivate your self when life doesn’t seem to have any purpose but, believe me, it helps to start to do a few things. I read that the difference between clinical depression and grief is the ability to function and you may need anti depressamts to help you.
    Have you written to Dr Giles on this site? If you tell him how you are, I’m sure he will give you his opinion. He is an expert whose advice could prove very helpful to you.
    Finally, Charlene, please know that we are always here for you and are thinking of you. We undestand what you are going through and know how hard it is. Please stay in touch!
    Love
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21829
    pauline
    Member

    Hello everyone,
    I’m sorry about the dog too Sue. They are really good companions and I understand that losing her is another blow. I think it’s very hard to deal with set backs like this in our situations because we are much less resiliant than normal.
    I have been keeping myself very busy with work this week. It seems to be the most helpful thing to me at the moment. I had to stay at home on Monday and Tuesday because the snow arrived and London came to a stand still! However, I had plenty of work to do at home and so was able to keep busy. I honestly don’t know what I would do at the moment if I didn’t have some work to do. There are so many hours and days to fill that at least work fills them.
    I am going to Italy again on Thursday because Anthony and I always went at this time, during the school half term. I don’t know how I will be when I’m there but I am taking a lot of work with me. I think I will continue to visit some of the places Anthony and I used to go to. What a surreal life this is, living the life we used to live together only on my own. I still find some comfort in this familiarity though and can’t think of doing things differently from the way Anthony and I always did them.
    It’s a horrible grey, cold Saturday here. The snow has gone in London now but large parts of the country are struggling to cope. Can you believe that we can’t even manage to get the roads and pavements gritted properly to prevent accidents? Anyway, I am thinking of you all and will be thinking of you, Joyce and Sue, as those monthly anniversaries approach. I hope you are alright, Darla and hope the weekend will be ok for you all.
    Take care
    Love
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21823
    pauline
    Member

    Thank you both for reminding me once again how similar our experiences of the grieving processes are. I also talk to Anthony a lot and look at his photos which are all around the house. I am keeping very busy too but at the moment the terrible sadness is very close to the surface and little memories come to my mind and I find myself crying – sometimes silently – if people are around.
    There is no answer to this process, no solution to the problem but, despite this, I think we are all doing ok because we continue to function. Most people probably don’t have any idea of how we are feeling inside. I find that the number of people I confide in is now very small and I have pretty well given up on the rest. This doesn’t even annoy me any more. I am used to it.
    Anyway, the snow has come to London and it’s very cold. This usually means chaos on the roads so I’m not looking forward to the journey to school tomorrow!
    Take care! We’ve got through another weekend!
    Love
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21820
    pauline
    Member

    Dear friends,
    Anthony died 6 months ago yesterday. During the last few days I have been thinking that it has been 6 months since I have had a chat to him and this thought just seems to break my heart all over again. There have been a lot of tears. I don’t want time to move on because I don’t want his memory to fade. I don’t want to forget anything ever, but I’m afraid I might!
    I am picking myself up again today and keeping busy. The weekends tend to be the worst times still, don’t they? I hope you are all coping as well as possible and that your Sunday will not be too bad!
    Thinking of you all!
    Love
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21814
    pauline
    Member

    Dear all,
    I wrote a really long reply last night and I lost my connection just before I sent it so I will try again and keep it shorter this time!
    I was really angry for you, Sue, when I heard what those “friends” said. It feels as though most other people are on a different planet sometimes, doesn’t it? We put on a brave face because, basically, we have to and then people presume we’re ok. If we don’t they think we should be “getting over it” by now. What is comforting is to know that we are all pretty similar in the way we are handling things – all trying to keep busy and make a good effort while feeling terribly, sad, lonely and empty inside.
    And why can’t most people talk to us about our husbands? After all he was their friend or brother or other relative. A little memory goes a long way to helping us – is this too hard to figure out? Yes, Darla, I think we have a right to be angry about all of this. I’m also angry about the people who hardly ever phone any more. Anthony always said he knew there would be so many people looking out for me. I’m glad he doesn’t know he was wrong about that.
    I think working is useful, Joyce, and I am throwing myself back into it at the moment but it is difficult to concentrate for long periods. I think your boss needs to realise you are not back to normal and needs to take this into account. I do believe that when people ask how we are we should tell them that we are not great and are still finding it all very hard etc. At least they can’t say they didn’t know. Don’t over work, Joyce, you could become exhausted or ill and that really won’t be good.
    I think you are absolutely right, Darla, we have to re evaluate who our real friends are and we shouldn’t let them upset us. It’s hard though, as you say, because we are bound to be very sensitive. I do get angry and upset but try to push it out of my mind and think of things that really matter. What else can we do?
    Anyway, it all reinforces how important it is that we have our little group and we really understand each other. I think if I didn’t have you all I would presume I was alone in having insensitive friends etc. Take care all of you and keep in touch. It’s good to have an international moan sometimes, isn’t it?
    Love
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21808
    pauline
    Member

    Dear Darla, Sue and Joyce,
    I hope Sunday has been ok for you. I have had a very quiet, reflective one and am still feeling very depressed and miss Anthony unbearably. I think it is so hard to live the life you used to live as a couple on your own and yet I don’t have any wish to do anything differently. This seems to be an unresolvable conundrum. I keep feeling how lucky we were in our lives together and how hard it is for me now. Being ill and alone throughout Christmas, New Year and our wedding anniversary has obviously highlighted all of this and now that I’m better my mood hasn’t changed. I am forcing myself back to work and making myself keep busy but it is all very empty and seems pointless.
    I’m sorry you have been having a bad time, Sue. Those reruns of everything that happened towards the end are awful because we can’t do anything about it. The thing that helped me was my counsellor telling me that she thought it was a beautiful love story and after that even the things that I felt I should have done better I could see within the context of our love as Anthony’s life drew towards its end. I had so many regrets and still do really but now I think of it as the last part of our beautiful love story as our lives were being torn apart. Anthony was suffering so much in those last few days and I was suffering too. I was beginning to lose my mind with worry and exhaustion. How can we be at our best in the context of such suffering? It seems to me that you did your very best for Ray as did Darla for Jim and Joyce for Butch in our different situations. These regrets still come into my mind and I think they are normal but mainly now I have reached the stark reality of my situation which is the unbearable fact that my life with Anthony is over and that I miss him so much and feel such a hole in the centre of my life. This is what I mainly struggle with now. I simply have no idea of what the point of life is and I wish I could have died with Anthony because then I wouldn’t have to struggle to make sense of things without him. It’s just so very hard.
    Anyway I find that keeping busy is a sensible solution and so that is what I am forcing myself to do. I have missed a lot of work through my illness and so will make up for this in the coming weeks. I still wake up wondering how all this ever happened and why it happened to us. We were so happy and had so many plans for the future. What a retirement we were going to have! I still find most people seem oblivious to how I feel. What a lonely world it is!
    I hope you are all ok. I am thinking of you all.
    Love
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21799
    pauline
    Member

    Dear friends,
    It is good to catch up with how you are feeling. It has been such a difficult period it’s not surprising that everyone is low. I am thinking of you today Sue with Ray’s anniversary. It is still a very short time really, although it can seem like forever to us, can’t it?
    I am just recovering from my second virus which has kept me in bed feeling rotten for another week. This was the nora virus – the horrible sickness bug! I must admit, having been ill for most of the last 3 weeks has left me so depressed that it is hard to motivate myself in any way at all. Nothing seems to make any sense or to have any purpose any more. You’re right Sue, doing the same things that we used to do can bring some comfort but also just underlines our sense of loneliness. On the other hand, I can’t think of anything else to do that gives me a sense of purpose. I think if I was 10 years younger I would re train as a doctor. Your trip sounds like a really good idea, Sue. You are being very positive which I think is great.
    I have cancelled all my school visits and meetings this week and I must admit I really am feeling like I just can’t be bothered with any of it but I suppose I will have to force myself because I will just get more depressed.
    I had to miss my counselling because of my illness but I will go again next week and hope it might help.
    Anyway, I am thinking of you all. Take care!
    Love
    Pauline

    in reply to: newly diagnosed with cc #24577
    pauline
    Member

    If the itching continues to be a problem you might like to ask the doctors to prescribe rifampicin. My husband, Anthony, suffered from terrible itching for months when he was first diagnosed with PSC and this was the only thing that helped. In fact, once he took it ( one tablet a day) his itching stopped completely which, as I’m sure you can imagine, was a tremendous relief to him.
    Best wishes
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21784
    pauline
    Member

    Dear friends,
    It’s good to hear from you and I get the feeling that we’re all rather relieved that the holiday period is over. Thank you for thinking of us, Lainy. You are very kind and I hope life will be kind to you and Teddy this year.
    I do think there comes a point where going out to work is a good thing, Sue. I wouldn’t want to be full time but getting a balance between time to reflect and time to be busy has certainly been important to me. It’s not so much that I find meaning in the work at the moment, it’s more that it gets me thinking of different things with people, some of whom know nothing of my situation. I am lucky in that I can choose the projects that I want to do and the amount of work I want to take on but I would certainly encourage you to try to find somthing that interests you and gets you out of the house for a few hours at least.
    It’s been very cold here lately and, surprise,surprise, I have ongoing boiler problems too! It’s one of those very grey Sundays today and, as I have been stuck inside the house with flu for over a week I am thinking of taking myself into town today. I have been intending to visit the area around St Barts hospital for a while now. Anthony had his radiotherapy there at this time last year and we found it a fascinating part of London. We always intended to go for a walk around the area but Anthony wasn’t well enough. So I may go today and visit one of the oldest churches in London – St Bartholomew the Great which dates from the early 12th century. I will then go to St Paul’s and down to the river and back to an Italian cafe that Anthony and I occasionally went to before his treatments. It will be sad, of course, as all these things are but I think I need to do it.
    Take care everyone and keep warm!
    Love
    Pauline

    in reply to: It’s done #25247
    pauline
    Member

    Dear Iris,
    I am so sorry to hear that Peter has died. You must feel very proud of his strength and courage. My Anthony also never complained and was very brave. This helps me to stay brave at my lowest moments and I hope Peter’s example will help you too. I cannot think of a better way to die from this disease than to fall into a deep sleep and I hope that the peaceful nature of Peter’s death will also be of comfort to you.
    The times ahead will be very hard but please remember that we are here for you and we undestand. Hold Peter’s love in your heart for ever.
    With love
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21774
    pauline
    Member

    Dear all,
    Well it’s 8.30pm on new year’s eve and I’m still feeling ill. There doesn’t seem much point in staying awake until midnight. I don’t like the idea of living in a year that Anthony hasn’t known so I think I’ll try and ignore it all. It is very sad on this forum at the moment with a number of loved ones having died or dying. Here is a verse of a poem by John Donne that I wrote to Anthony on his last birthday:

    …” All other things to their destruction draw,
    Only our love hath no decay;
    This no tomorrow hath, nor yesterday,
    Running it never runs from us away,
    But truly keeps his first, last, everlasting day”…

    I am crying again for the light that has gone out in my life and for my friends, Darla, Joyce, Sue and for all of you living through this torment.
    Thinking of you all tonight
    Love
    Pauline

    in reply to: No one wants to talk about John #25194
    pauline
    Member

    Dear Charlene,
    People are simply unbelievable, aren’t they? I have been so shocked, angry and disappointed by some people’s behaviour. How do they think we get over the loss of our husbands in a few weeks? They clearly have no sensitivity. Why don’t they understand that we want and need to talk to them and, if they are a relative or friend, then why don’t they also want to talk about him?
    I have realised in the end that you just have to speak about your husband to the few people who are prepared to listen and they’re not necessarily the ones you would have expected to be so supportive. I think we live in a very flawed society where some people live very superficial lives. I reckon some people fear their own mortality, others simply don’t know what to say, some bury their feelings so deeply that they can’t express them, while others really think we should just get over it! All in all they’re not much use to us!
    I hope you are finding the widows’ group helpful. I am 53 like you and never thought I would be left alone at this age. I will be thinking of you at new year and hope that you have a few close friends/ family members who are prepared to listen to you talk as much as you want to about your husband.
    Take care
    Pauline

    in reply to: Anthony died on 30th July in a London Hospice #21773
    pauline
    Member

    Dear friends,
    I am still suffering from a very bad bout of flu that I have had since Christmas Day. It has been very miserable all on my own but I don’t want to pass my germs to my family. However, I have a very strong sense of Anthony being here with me which is helping to keep me going.
    I had originally intended to go to Italy for new year to visit Asisi where Anthony and I spent the millenium new year’s day. However, I have had to cancel that trip. My step daughter has invited me over and I had thought I would go for a few hours and then come back home to let the new year in. However, as I am still spiking a high temperature every day this is not looking likely.
    Last year on new year’s eve, Anthony had a ct scan and when we got home he began to get a high temperature which meant that he spent the rest of the day in bed. I sat up on the bed with him, as I often did when he was ill and by midnight he was sleeping. I remember looking out of the window and seeing a few fire works and then going to sleep myself. It was the only new year out of 27 that we didn’t wish each other happy new year at midnight. It never even occurred to me that this was to be our last new year. The next day Anthony felt better and we went to our daughter’s house for a family get together.
    So at midnight this year I have decided to be in our bedroom looking out of the window. It is very beatiful weather here at the moment – very cold and sunny – and so I am hoping to see some stars. Then I will probably cry and wish my Anthony a happy new year.
    Today is 5 months since Anthony died and he is always in my thoughts. I think I am getting used to life being full of sadness but I think this time of year has been the most challenging since those very early weeks.
    I am thinking of you all and will be thinking of you at new year.
    With love
    Pauline

    in reply to: Where to find treatment in the UK #19580
    pauline
    Member

    I would now like to add to this information:
    1. If you need ERCP for biliary stenting then I would suggest the best hospital is King’s College in London. They also offer PDT and are the very best if your tumour is operable.

    in reply to: Anthony died on 30th July in a London Hospice #21770
    pauline
    Member

    Dear everyone,
    This is such a trial. I have been crying most of the day. I can’t bear missing Anthony so much, it is so painful. It is nearly five months now and I still think about him all the time during the day and most of the night ( I can’t sleep well at the moment either). Anyway, last night Anthony was there in my dream for the first time in weeks and it made me feel so much better for the first moments of the day, until the torment started again.
    I am thinking of you, Darla, Sue, Joyce and everyone else who has lost a loved one to this disease. I know we will all try our best to get through this Christmas period. I am going to make a very big effort for my family tomorrow and will try not to cry until I get back home.
    With love
    Pauline

Viewing 15 posts - 91 through 105 (of 187 total)