pauline
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Hello everyone,
Once again a lot of us seem to be going through similar phases at the same time. I have found this weekend very hard. A year ago Anthony came home from hospital for the day but was so ill and tired he wasn’t able to go back. He said to me “If I go back now I will never come home again”. So, we stayed at home and I called the hospital. They said he was going to be discharged on Monday anyway so I could come in and get his medication etc. I did this and by the time I got back home Anthony was very distressed, worrying about where I was. We both cried together when I saw how upset he was. We still had no idea that he was in his final stage. No one had realised this and so we pulled ourselves together and tried to keep going. We slept downstairs on the sofas from this point onwards because Anthony couldn’t get up the stairs. I can hardly believe what we went through in these last weeks and it all suddenly seems so real (and yet unfathomable) again.
I am sorry to be so distressed and wish I could offer more positive words of support to all of you who are living with terrible memories. I know that all we can do is also remember the beautiful things, which I do. Here is a poem by ee Cummings for Anthony and all of our loved ones –I carry your heart with me (I carry it in
my heart) i am never without it (anywhere
I go you go , my dear, and whatever is done
by only me is your doing, my darling).
I fear
no fate (for you are my fate, my sweet) i want
no world ( for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun has always sung is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart.
I carry your heart (I carry it in my heart).
Thinking of all of us
With love
PaulineHello everyone,
Well, I’ve been keeping very busy since the Barcelona conference. It is July, a hard month for me. Anthony was in his last month a year ago and all the pain and trauma was happening. Every day there is another sad memory and I remember it all so clearly. Today a year ago Anthony had an ERCP to replace a stent and was really unwell afterwards. It is almost unbelievable that all this was a year ago and it makes me feel that I have been in a kind of daze all this time. I still just keep busy with work and try not to stop too much.
I hope you are all ok. I hope you enjoyed your holiday and Sam’s graduation, Sue. I hope you have a lovely time on your trip too, Joyce. How are you, Darla? Do you have any trips planned? I know this is such a hard time for you too. I hope things are ok with you too, Janet. That sounds exciting, Patty and, in any case, 40 is very young!
I am thinking of you all. I suppose we just have to keep on going, don’t we?
Take care everyone
With love
PaulineDear Pam,
I am so sorry to hear your sad news as well. This is an awful cancer that has left so many of us reeling from losing our loved ones in ways that are very difficult to rationalise. I still think about everything that happened to Anthony constantly. Darla lost her husband, Jim , very suddenly like you. Anthony had been diagnosed for over a year but it all happened so suddenly in the end that it was very hard to comprehend.
We have all found it helpful to keep in touch with each other on this site, so please join us. We support each other and it helps to know we are not alone. I hope we can help you too.
Thinking of you
PaulineDear everyone,
I hope you are all ok. I have been keeping very busy with work and am going to Barcelona this evening for the conference with Marion. I just hope I am able to be of some use and that some delegates will listen to us and realise that so much more should be done for patients with cc. I’ll let you know how we get on.
I am still going through all the one year ago memories. It is very hard and I don’t know where the year has gone. Last Friday was a year since we had been to see the hepatologist at out patients and she had commented on how well Anthony looked and how well he was doing – no problems on his bloods etc. It’s so hard to believe that he died only 6 weeks later. We were still so positive about things and were making plans to spend a few months in Italy after Anthony’s next round of treatment. I still wonder about what went wrong and what might have been, even though I know it gets me nowhere.
I am planning a memorial for Anthony for 19th August and will think about organising that over the next few weeks. It will be so sad but I need to do it.
How are you, Sue? It was really good to meet up! I hope you are ok Darla. I know it is a difficult time for you too as you come up to the point where Jim started to get ill. I am thinking of you all as always. Take care all of you!
Love
PaulineDear Cyndi,
I too am very sorry to hear of your suffering. It is important for you to know that you are not alone. Everything you have said is normal and we have all gone through similar emotions and experiences since we lost our husbands last year.
It is very early days for you and I think you are still in a terrible state of shock where nothing makes sense and you feel desperate. I felt the same in those early months. You aren’t crazy but I know it feels like it. You are full of grief and others find it hard to give comfort. I can only suggest that you talk to Larry as though he is there, that you don’t dread the memorial and that you don’t say goodbye to him ever. Say what you want to say, not what you feel is expected of you. Tell him how much you love him and miss him and cry whenever you need to. I am not religious but I keep my Anthony in my heart and in my thoughts at all times and I imagine he is around to take care of me. This helps to keep me going, even though I feel that the best part of me died with Anthony nearly a year ago.
The other thing I found helpful was to write myself lists of things to do every day and to make sure I did them. These might just be small practical things but they can help. Why not think of how you want the memorial to be and then invite your family round to talk to them about what you would like. I am sure they will support you with this if you ask them. People often need to be given guidance on what you need or would like.
Please keep coming here to talk to us. We feel your sadness and we understand it. Take care!
With love
PaulineDear Charlene,
It is so good to hear from you again but I am sorry that life is so hard for you at the moment. I have been through a lot of the same emotions and experiences as you and I understand how you feel. I am still grieving badly and get very depressed but, despite this, I have learnt a few things along the way which may be of some help to you.
First of all, shockingly, the people closest to us who we expect to be our main support, can turn out to be a great disappointment. This is not at all unusual and I think it is partly because they cannot conceptualise the depth of our sadness and they are afraid of us, don’t know how to help and so avoid us or avoid talking to us about the only subject we are interested in, i.e. our husbands and our grief. This tends to make us feel very angry because we need them so much and we feel desperately let down. I have sometimes wanted to shout at people and at other times I have wanted to never see them again but after many months I have calmed down and stopped worrying about them. I can now see them when I want to and find they respond better to me when I take a more pro active approach to what I want from them. I also find support from one or two other people who I would not have expected it from and you may need to work out who these people might be for you. Sometimes they are people who have lost someone very close and understand how we feel.
I think it must be awful to have money problems as well and don’t know what to suggest for this. All I can say is that work has been a life saver for me. I didn’t expect to cope but actually I have and it keeps me busy which, at a certain point becomes very useful. You say you are back at work. How are you finding this? Are you full time or part time? Is there any one you could go to for advice about the financial side of things because this is an additional strain on you and havng to sell things must be very hard.
I do agree with the others about talking to your children, thinking about what you want to say and opening up to each other. It is hard when you all need to give and get support and you do have to try to get a balance between the two. Your children are perhaps missing the mum they had before and this must be hard for them and I think talking it through calmly could help. Sometimes people can really surprise you with their responses. In our situation we tend to feel unloved in the whole world but I am sure they do love you and just don’t know how to help you.
My final suggestion is that you come onto this site regularly and talk to us. We try to support each other and sometimes it just helps to know that what you are going through is normal and that you aren’t alone in your sadness.
Please take care and keep in touch.
With love
PaulineHello everyone,
How are you? I have been pretty low, verging on the explosive and now calmer again and all this in the space of a week or so. All these one year ago memories are taking their toll, I think.
I’m back in London and working hard. I’m looking forward to meeting Sue on Sunday as she is passing close to London on her way back up north.
I have another meeting with the hospital tomorrow to find out about progress on their work for cc patients, so I am hoping for some positive news although I find this all very hard as well with all the memories and short comings in Anthony’s case. At the same time I feel I have to keep trying to ensure things are improved for other patients. I’ll let you know how it goes.
I hope you are all ok and keeping busy as usual.
Take care everyone and keep in touch!
With love
PaulineDear Everyone,
I am still here in Italy and it’s very hot, beautiful and sad. I don’t think I’ll ever be able to experience the hot weather without feeling so sad for the memories it brings. I am keeping busy, though, as family have come for a few days to be with me. Sometimes, I need to be left on my own to think and it’s hard with people staying. You’re right, Joyce, we have to have time to grieve.
The builders came and did the damp work that Anthony was trying to do when he first got pain this time last year. That was hard for me and, of course, I had to make sure they did it absolutely right. It’s not finished yet so fingers crossed it will turn out ok or I’m going to be very upset!
I am thinking of you all and hope you are ok. Let’s all make sure we give ourselves the time we need when we need it. Congratulations to Sam. That’s wonderful, Sue, and what better profession than a doctor to help others in need! I would love you to come over when you’re in London and will send you an email later in the week when I get back home.
Take care, Darla, Sue, Janet and Joyce and everyone else!
With love
PaulineDear Wendy,
I am based in London and am trying to help patients with cc by getting information for them about treatments available etc and posting it on this web site. You have done the best thing by coming onto this site.
Have a look on the hospitals section where I have posted some information to see if it’s of any use. I have nothing to add on jaundice and stenting as Marion has explained it well. I don’t think they do microwave ablation for cc but you might want to look into Sir- speres, which is a form of radiotherapy which is proving positive for cc patients. I f you would like to e mail me directly, please do. Let me know where in the UK you are based.
Very best wishes
PaulineDear all,
Well at least there’s comfort in knowing that we’re all feeling pretty much the same. That always helps me to think I’m normal rather than crazy! In Italy the weather is hot and sunny and I have been putting all the geraniums in their pots. Last year Anthony was here when I did them. He was tired but I remember him looking out of the bedroom window while I was doing them and saying “they look lovely love”. He was always so kind and gentle and said lovely things to me like how nice I looked even when I know I was looking pretty rough! How I miss him!
I have been going out to the shops to get the flowers and things and every time I drive through the beautiful countryside I cry. It’s a good job it’s sun glasses weather or the people in the shops would wonder what is going on.
I have been going to bed really early, even before sunset some days, just so I can think I’ve got through another day. I am reading a book by Sheila Hancock about the death from cancer of her husband, John Thaw (Inspector Morse to those who know it). Of course, this makes me cry even more but I can’t concentrate on any other genres.
Well it’s 8.45 and it’s actually getting dark and so I’m off to bed slightly later today!
Take care all of you. Let’s keep going anyway! Going where? You may well ask! More shopping to do tomorrow!
Thinking of you and hoping you’re feeling a bit better than I am!
Love
PaulineDear friends,
It’s good to hear from you Sue. I think this onset of better weather is hard, isn’t it? I suppose it’s because it normally signals happy times and long relaxing days and yet all we have are sad memories of those days. I try to keep up with everything too and make sure the garden is looking nice. I’m not really sure why but it seems like the right thing to do.
I hope all goes well with Sam’s exams. You will have something to celebrate but I know it will be hard for both of you without Ray. You will have to raise a few glasses to him!
I like the idea of a permanent memorial. I hope you can get it done. I also understand about finding it hard to explain to people how you are feeling. As time goes on there are fewer we can open up to. I spend most of the time pretending to be ok. Yesterday someone asked me if I was enjoying myself in Italy and I realised that they have absolutely no idea of how I feel. I don’t even have the concept of enjoyment any more! I don’t know if it’s better to be honest and try to explain how I feel or just to say I’m ok. Sometimes I get frustrated and am honest but mainly I pretend. I find that if I’m too honest they tend to “run a mile” anyway so it’s counter productive. I had so much more support when Anthony was ill and I was coping well. It’s a strange life, isn’t it?
Anyway, I’ve had a good moan too now. Does anyone else want to join in? Back to trying to keep busy! Must write another list!
Take care everyone
Love
PaulineDear Everyone,
It’s good to hear from you as always. I understand your feelings about the change of season, Janet. I actually found in autumn a sense of beautiful sadness. I did a lot of walking on the common near our home in London as well as in the Tuscan hills when I came over to Italy. It really helped me to reflect. I wanted rid of summer and all those awful memories linked to those long, warm days but, like you I didn’t like the idea of a season Anthony hadn’t seen. Winter was quite hard for me too as the others have said. I think it’s all the hours of darkness. I hope your winter won’t be so bad!
I understand how you are drawn to those programmes about cancer, Joyce. I am too. They are so sad but I find that sense of common experience makes them unavoidable. I also know that you can be left feeling very low because of the hoplessness of it. I hope getting busy again this weekend has helped you.
I am in one of my low moods after a few weeks of keeping very busy and I think this is my pattern at present. I am trying to pull myself back up a bit and am giving myself some goals this week. I am thinking of a memorial I am going to hold at home in London in July for Anthony and what I would like it to contain. I am also trying to get some of the books he was working on before he died published. There is one on linguistics and another on French poetry which was his great love.
I also need to get the damp work in the hall here done. This is so important to me because Anthony was working on it exactly a year ago when he first got the leg pain that was the beginning of his final stage. At the moment, I tend to come in by the side door to avoid looking at it.
Anyway, the weekend is nearly over, which I always find a relief. I still find these long Saturday evenings and Sundays the worst days, don’t you?
I am thinking of you all. I hope your weekends have been ok, Darla, Joyce, Janet and Sue.
Take care!
Love
PaulineThank you everyone for you kind words about my attending the conference in Barcelona. I will be so pleased to meet Marion who contributes so amazingly to this forum and I just hope I can be of some use in furthering the work of the foundation and highlighting the plight of cholangiocarcinoma patients in the UK and around the world.
Very best wishes
PaulineLike Darla I am living through these very painful first year memories of my darling husband, Anthony. I have come to Italy again today and have spent some time remembering a year ago when we came here together. It was lovely spring weather and we were alive!
One day while we were here Anthony was bending down to look at some damp that had got worse in the entrance hall over the winter. He started to work on it and when he stood up he told me he had some pain in his leg. I told him to stop and that we would get someone to sort out the damp. He agreed.
Only after his death did the doctors realise that this pain was the first sign of the tumours having spread outside the liver to the peritoneum and the tumour was touching a nerve. At the time we thought it was sciatica or hoped it was!
I have cried a lot today. Tomorrow will be the anniversary of the last time we went out for a meal with friends. Tony was ok but couldn’t eat all of his meal and struggled to walk to the car. How I miss him now! He was the light in my life, the love, the intellect and the fun and now it’s all gone. He had only 2 months left to live but of course we didn’t know that. Ahead of us was only terror but we didn’t know that. I know the next 2 months are going to be very hard for me. I can’t say about the future.
I can only hope that things don’t get worse after the first year. I have promised Tony that I will make my best efforts and for him I will.
Thinking of you all
Paulline
