pauline
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I think what you are doing in taking your mum away for this important weekend is lovely. I lost my husband, Anthony, 7 weeks ago and I think if it was me, I would want to talk to our daughter about what we might like to do together to mark the occasion. I don’t think you need to rack your brains about what to do – just talk it through and keep it simple. I also agree with Lainy that a photo albumn or an enlarged, framed photo of your parents would be a lovely gift.
Remember, you are grieving badly still as our daughter is too and I agree that the best thing you can do is be together with your mum and talk about your dad and think about some of the good times you had together. Hopefully, this will be of some comfort to both of you.
Thinking of you
PaulineDarla,
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.
PaulineAndy,
Did you read my reply to you in the introductions section? I live in London and gave you a few suggestions. Regarding surgery I suggest King’s College is the place to go but I also gave Dr Wasan’s phone number at Hammersmith. He does sir-spheres if this is of interest. Please contact me further if you need more information.
Best wishes,
PaulineDarla,
I am so sorry to hear about your husband and reading your post I am crying again for all of us who are going through such terrible times. My husband, Anthony died on 30th July age 64. Like your husband he was doing really well until the last 8 weeks or so. We went to Italy in the middle of May and he was lifting the suitcases onto the car park bus, managing the long walk at the airport – really normal. We came back and he started to get pain and , as you say, it just progressed from there so rapidly. I am still in shock and traumatised but, like you I hope to be helpful to others. I have started writing letters to the hospital re delays and things that weren’t good enough in the hope that I can change something for others.
I just want you to know that I am here and I understand and I am thinking of you.
Pauline ( London UK )I am wondering what the outcome was of the discussions over the UK centres. Have we heard any more from Prof. Lodge or anyone else? If not, I think we need to get onto this. I would be very willing to be involved in any way that would help.
Pauline RobertsThank 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
PaulineI would suggest that you contact Dr Wasan at the Hammersmith Hospital. When my husband,Anthony was suffering from this disease we did a lot of research and went to various places, including the London Oncology Clinic, London Bridge Hospital, Barts, Guys and King’s College (which is where my husband received most of his treatment and where they are particularly expert in terms of ERCPs and liver surgery). However, I feel that if you are looking for someone innovative and very positive with a lot of experience with cholangiocarcinoma who is prepared to do treatments like sir-spheres if appropriate, then I would contact Dr Wasan’s secretary on 0208383 3057. I hope this is helpful. I don’t know about the 3DMRI.
Wishing you and your mum all the very best. Please ask me for more information if you need it. We did so much work on this that I would like to be able to help others even though my darling husband has recently died and had no luck at any stage of this awful disease.
PaulineI would suggest that you waste no time in getting your dad started on some treatment and that you also should get a second opinion. I have regrets about the delays in my husband’s treatment and once we got the diagnonis of mets to the omentum and peritoneum he died within a month. However, the ct scan results had been delayed and we took 5 weeks to get them. Who knows what a difference it might have made if we had got the results straight away and if they had started Anthony on some chemo. I wouldn’t want this to happen to your dad or anyone else. I wish you and your dad all the very best.
PaulineThank 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?
PaulineThank 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.Hi G,
Thank you for your reply. I’m really sorry to hear abou the pain you are experiencing. Does medication help? They think Anthony’s leg pain is bone degeneration and is another unfortunate thing that has caused him pain at the same time as the pain in his abdomen. He now has been given medication but it seems to make him very sleepy. I am hoping that we can work out a regime of pain relief that won’t have too many side effects but know that this is very difficult as he can’t take any of the opiate family due to hallucinations, confusion etc.
Take care
PaulineThank you for your replies Marions and G. We found out today that Anthony’s mets are on the peritoneum as well as the omentum. I wonder, G, how long ago your metastases were found and what treatments you have had for them? Have they remained stable or reduced or grown at all? Did they cause you pain or were they linked to a loss of appetite in your case? I do apologise for” giving you the third degree” but we are completely in the dark at the moment and would be very grateful to get some feed back from some one who has experience of these same mets.
I feel that at each stage in this awful disease we are devastated by things worsening but then want to try to pick our selves up and make the best of the situation and get the best treatments, don’t we?
Thank you again
PaulineHI Jeff and Alison,
I think we’re all thinking along the same lines about what specialist centres would entail. We’re not thinking of anything that would take a long time to set up, are we? Basically, what I have in mind is the naming of a few specialist hospitals for cc. These would most likely already be major liver centres that do everything in terms of liver surgery, including transplant and that already do ERCP for stent placement and already have medical (and, hopefully clinical) oncologists in their multi disciplinary team and that already deal with a number of cc patients. They may already offer several of the possible cc treatments e.g. P.D.T. and so it would not be a major shift for them to expand, take on more cc patients and develop the expertise etc we have already discussed. Do you agree?
PaulineTeresa,
My husband, Anthony and I were very saddened by your son’s story. It brings home in the starkest form what can happen when there is a terrible, rare disease that the NHS hasn’t got to grips with in any kind of planned, coordinated way. The plan for these centres seems to be the first signs of something strategic happening, doesn’t it?
No one should have to go through what you and your son experienced and I for one will be with you all the way in trying to make sure that this kind of patient experience becomes a thing of the past. After all isn’t the NHS supposed to be there for us all in our time of need? I realise that this is all to late for you but really respect you for carrying on with your involvement.
I hope we hear some news soon about the outcome of the meeting that was apparently taking place this week.
Very best wishes,
Pauline RobertsAlison,
I’m glad you agree re the national centres. The experiences of cc patients to date is pretty poor here isn’t it and so dependent upon where you live . We live in London as well and almost travelled to the Mayo Clinic (despite the costs) because of the frustration of trying to find anything other than chemo here.
A year later and we have managed to access different treatments and have built up, with a lot of hard work, a fair bit of information about where different things are done but it really was a struggle for many months – a struggle we could have well done without – and still no one seems to have a complete over view of this disease.
I think this news that the Dept of Health is looking into the establishment of centres is a potential big step forward and we should try to keep the pressure on to ensure that it happens and quickly. I think it would be really good if all the UK patients on this site added their thoughts and experiences – there seem to be quite a lot of us and this seems to be the only place that we get to communicate,doesn’t it? Another advantage of centres, it occurs to me, is that patients and their families could meet each other and share experiences if they so wish. It can seem a very lonely disease,can’t it?
Pauline
