pauline
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Dear all,
Darla
It sounds very bleak where you are with all that snow. Is it always like this at this time of year or is it worse than usual? Do you have neighbours nearby? I hope you are not too isolated. It all sounds so different from where I live on a typical London row of edwardian houses! The weather has been milder here in the last few days but is very grey and depressing, reflecting the way I feel.
Sue,
I think you’re being very positive with your decorating ideas. It also makes sense to me to do the things that you and Ray planned. Doing some of the things that Anthony and I planned is one of the few ideas that makes sense to me. Maybe I’ll be able to make more effort in the new year. What do you think,Darla? I also think it’s good that your mother really understands how you feel because she has been through the same experience quite recently. All my mum keeps saying is to keep busy!
Yes Sue, I am going to relax about the memories and see if they come back in time and as you say, Darla, maybe it will be the same with the dreams and they will gradually happen. I hope so!
How are you Joyce? Is it still snowy there as well? I am thinking of you all and I reckon we’re being pretty brave, aren’t we? At least we are managing to keep going, despite how we feel inside!
Take care all of you!
Love
PaulineI am thinking of you also, Mary Anne and family and understand what you are going through. Take care,
PaulineDear friends,
I am so glad we have each other at this time of year. I find I am getting sadder and sadder as each day goes by in this approach to Christmas. I have tried my best to ignore it all but it clearly hasn’t worked because I just find myself crying and crying every day when I am alone.
I decided to focus on some good memories of our Christmases together. I started with last year and was disturbed to find that I can’t remember a single thing about it. We always spent the day on our own and always enjoyed it very much so I know what we did last year, I just have no memory of it. I will keep trying because it was our last Christmas together and the memories would be very precious to me.
It never occurred to me in the last year that this could be our last Christmas, birthday, anniversary, new year etc. We were always so positive in our determination to fight this awful disease and I truly believed that my strong, brave and brilliant husband would stay in this world for a lot longer, despite having cc. He was so full of life, ideas and vitality that I couldn’t imagine that this disease would take him so quickly and so suddenly. I suppose the shock has taken some of my memories away. I hope they come back!
When Anthony died I imagined that I would dream about him all the time but I don’t or at least I don’t remember the dreams. I really want to do this because on the two occasions when I have it has been beautiful. Do any of you have the same problem?
Anyway, I hope you are all surviving this pre Christmas Sunday!
Thinking of you
PaulineDear Charlene,
I am glad you have made contact again. I understand exactly how you feel. Missing some one you loved so much and not understanding why they’re not here with us is unbearable. I am still desperate and cry a lot of the time for my Anthony. Other people can be very strange. How on earth do they think we can get over this so quickly? It makes me very angry and I feel that we live in two different worlds
I try to hold on to our love because I can’t let it go and never will. I too feel empty inside even though I can function well on the outside. I am so sad that we have been robbed of our retirement years and all those wonderful plans we had.
You are not alone, Charlene. We undestand how you feel and are just a little further down the road in our grief. There are a few people I can talk to who understand how I feel and it does help me to talk to them. The rest I have learn’t don’t really want to know how awful this is. I tried counselling and was a real cynic but it has been helpful and is perhaps something you could think about. My counsellor had tears in her eyes when I finished telling her the story of Anthony’s last few weeks – it took me 3 sessions. At the end she said it was a beautiful love story and that helped me. Instead of seeing only pain and trauma I looked at it in a different light.
I find some of my better moments are the beautifully sad ones that can be triggered by memories from photos etc. On Christmas Eve I am going to have a glass of wine on my own at home and talk to Anthony. I know it will be terribly sad but I hope it will help me to feel close to him as well.
Please keep in touch and tell us how you are, Charlene.
Love
PaulineAlex,
I don’t think you can worry too much about the 2 week gap between base line ct and start of chemo. Yes, it would be ideal to start chemo immediately after the scan but you have done really well in getting a second opinion as well. I would suggest you give the combination treatment a chance while getting prepared for the next treatment. Anthony had the same combination chemo and, although it didn’t shrink the tumour, it also didn’t progress much at all during his 6 months on this. Of course, it is impossible to know if the chemo held it stable or whether the disease was just very indolent at this point.
Best wishes
PaulineDear Sue, Joyce and Darla,
I am sitting here feeling so lonely and thinking of you all going through this unbearable time of year. I have been trying to keep busy with my work but I find that every time I stop I get terribly upset and start crying very easily. There are just too many memories at this time of year, aren’t there?
Anyway, I intend to be brave for my family’s sake too. I try to keep the tears to my private moments. As you say, Christmas is going to be hard for all of our children and grandchildren as well and having to support them may actually help us to cope. I think it must be very hard for your daughters to be working in the health profession, caring for very ill people and it must have been very difficult for your daughter, Sue, when she saw the cancer patient who reminded her of her dad. These sorts of reminders are really heartbreaking. I have broken down several times lately when I have seen cancer patients and their carers on television. It reminds me so much of everything we went through and how absolutely nothing prepared me for the devastation that lay ahead. I am crying again now while writing this. Sometimes I feel I have made no progress at all in over 4 months and I just want Anthony back so desperately. I still can’t really believe that I will never see him again.
Anyway, I am going to take your lead, Joyce, and have a hot chocolate. I shall take it up to bed and try to sleep.
Take care, Darla and Joyce in all that snow. I think trying to remember the good times is important, Sue. Let’s all try that!
Keep in touch! With love,
PaulineDear Alex,
Here is my advice based on months of research into the latest treatments on offer in the UK when my husband, Anthony was diagnosed with the disease in June 2007.
1. They don’t tend to offer surgery when the cancer has spread but will keep the option under review in case a treatment proves effective in reducing the tumours.
2. You have done the right thing in getting your mum on treatment while looking around for other options.
3. Don’t allow any delays between treatments.
4. Make sure she gets regular ct scans – at least every 3 months and insist on the results within a few days.
5. Trust the advice of Dr Wasan at Hammersmith.
6. Contact Dr Spicer at Guys. He does very interesting Phase 1 trials. Anthony was offered one involving Avastin, Taxol and a new drug called BIBW2992. It takes about 4-6 weeks from the initial phone call and referral from your doctor to get started on the trial. Unfortunately, for my darling husband, his cancer became very aggressive during this wait ( he wasn’t having any other treatment at the time) and he never did get on the trial.
I wish you and your mum all the luck in the world. Anthony and I were never lucky at any point in this awful disease but others fare much better.
Best wishes,
PaulineDear Lisa,
Please just remember that your life and health must take priority so don’t over do it at work. Please try to pace yourself! You are number 1, work is lower in the pecking order!!
Look after yourself and give yourself a break!
Best wishes,
PaulineHello everyone,
It’s good to hear from you all and to find that we’re all trying to deal with Christmas as best we can. There is obviously no easy way to cope with this season and I think it’s good that we are each choosing to do what seems best for us, rather than getting pushed into things that we don’t want to do.
My way of coping with it is to try to avoid it as far as possible and, especially to avoid the things that Anthony and I always did together e.g. shopping, getting and putting up a tree etc etc. I do find though that it is very difficult to completely avoid because, as you say Sue, it is everywhere on the television and radio, in the shops, in the newspapers. It upsets me a lot when certain pieces of music come on the radio and I find myself crying as I’m driving along sometimes. I’m going to make a real effort for the grandchildren on Christmas Day though because they obviously come first and I want them to have a great time.
I’m really pleased that you had a good break in Spain, Sue. It must have been nice just to get away from this very cold winter. I know how awful the birthdays and all those monthly anniversaries are Joyce and I understand completely that feeling of trying to pick yourself up afterwards. It is very hard and I sometimes wonder where the strength to carry on comes from. I suppose it’s that the alternative is worse and leads to dependency on others.
I think what you’re doing in looking back at items that are full of memories of past Christmases sounds lovely, Patty. I hope it will help all the family. Thank you for the reference, Marion. I think it’s something we could look into. Finding links with people who understand is certainly very important, isn’t it?
I also think you are both making a really good effort for Christmas, Sue and Joyce – much better than me and I know how hard it must be for you to get out those old decorations etc. I can’t even consider opening the basket where we keep ours! Christmas Eve was also another lovely time for us. I think I’m going to have a glass or two of wine on my own, talk to Anthony and try to remember some former Christmases.
How are you Darla? I hope you’re ok. I know you’re finding things really hard at the moment too! Also, Charlene, I’m thinking of you too. Are you back home now? Do get in touch when you are ready. We will all support you as best we can.
Take care everyone! With love,
PaulineDear Carol,
I am thinking of you too and hope Charlie will pick up and that you manage to get the sir-spheres. This can take a while to sort out, even if there is no funding problem, because they have to get everything exactly right for the procedure, so it may be worth getting Charlie on some other treatment e.g chemo while you’re sorting things out.
I wish you all the best in your fight with the insurance company. We are so lucky in the UK that we don’t have to think about these things – even though we all have criticisms of the NHS, because it could be much better funded- it is still definitely the fairest system in the world!
With very best wishes,
PaulineI took the brochures to a meeting I had at King’s College Hospital in London about my husband’s treatment as a cholangiocarcinoma patient. They have agreed to give these to all cc patients, of whom they have about 24 currently, and to list the cholangiocarcinoma foundation in their own booklet for cc patients.
I will also be contacting Hammersmith Hospital and Barts to ask them to do the same.
PaulineDear all,
I know it is 2 months now since you lost your husbands Joyce and Sue and I know how hard these events are. I am thinking of you both. Time goes by but it is still so hard, isn’t it?
The school is in New York City, Joyce, but if I do come over in the spring I will certainly try to find time to travel and meet you. That would be really good.
I hope you and Darla aren’t suffering too much from the cold and snow. None of this helps us, does it?
I hope you are ok Sue. Let us know how Spain was.
Anyway, love to you all. Take care!
PaulineDear Carolyn,
I am so sorry to hear about your sister, Anita. She was so young and this is such a terrible illness. At least she died peacefully and I hope this will be of some comfort to you at this sad time.
Thinking of you
PaulineDear all,
I saw the photo of you and Jim, Darla. It is really lovely. I must post one soon of myself and Anthony. I have so many around the house so I just need to select one.
I hope you are all ok. This pre Christmas period is hard isn’t it with everyone around us apparently so busily engaged in preparations. I feel very marginalised from it all.
I still find the weekends the most difficult time when others seem to be enjoying themselves and it just emphasises the lonliness.
By the way, Darla, I heard the other day that self blame – something that troubles us greatly – is apparently a very common aspect of grief. Although knowing this doesn’t resolve it , at least we can feel that it’s normal!
Well, I’m off for my Saturday early night! Take care everyone!
Love
PaulineDear Charlene,
I know exactly how you feel. I lost Anthony 4 months ago and I have told everyone that I am avoiding Christmas this year. We also loved this time of year and used to go shopping together for presents, the tree etc. This year I am not sending cards, not having a tree or any decorations, not buying any presents (except over the internet for my step daughter and grand children). I am asking people not to buy me presents but to give me donations for this foundation in Anthony’s memory instead. Christmas is simply too difficult with our grief, isn’t it? I cried uncontrollably when “In the bleak mid winter” played on the radio the other day so how can we possibly join in the celebrations when our hearts have been broken and for you it is so close to losing John – less than 2 weeks! May be next year we can try a bit harder.
Having said all this, I’m sure your daughter has the best of intentions. People try to bring us out of our grief. They just don’t don’t see that they can’t and that their attempts seem very insensitive to us. She is probably very worried about you. Try to explain to her how you feel. After all she loves you very much, I’m sure.
I also understand how you feel about wanting to get home. I was the same. I went away after Anthony’s funeral with my family and, although I was very grateful to them for taking me with them, I couldn’t wait to get back home to be with my Anthony again and all our things. It helps us to feel closer to our loved ones when we are at home, doesn’t it?
Your anger is very normal as well. I have been so angry with some people, especially in those early days, for example, if they spoke to me about their lives and what a lovely time they had had somewhere or if they didn’t phone or didn’t come round or, still now, if they don’t mention Anthony when I see them. We just have to realise that only those who are, either extremely sensitive or have been through a loss such as ours, undestand us and can relate to us. I still get shocked at some peoples’ insensitivity now but I do know that, even those who get it all wrong, still care and so I try to calm my anger.
Of course you need more time, Charlene. Give yourself time to talk to John, to cry, to think about him and to remember and to talk about how you feel to those who are prepared to just sit and listen and to understand.
I am thinking of you right now even though I am many miles away in London UK. I care and I feel that terrible pain too. Sometimes, when I am remembering or talking about Anthony to my stepdaughter or to a good friend, I can feel a beautiful sadness and sometimes we laugh together at a good memory of Anthony. These are my best times.
So Charlene, take care of yourself and keep in touch.
Love
Pauline
