pauline
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Dear all,
I’m posting from a really cold, grey and miserable London. I hate this dull weather but then the summer will bring with it terrible sadness because Anthony was first diagnosed with PSC in July 2006, with cancer in June 2007 and died in July 2008 and so the better weather will always be filled with deep sadness.
I am still on the manic work, keep busy conveyor belt that is my life these days. I feel very tired which I find helpful as I feel I may get a good noght’s sleep one of these nights!
I am trying not to reflect too much on life at the moment but just get on with it. I know this won’t last long but I think a feeling of numbness is needed every now and again, don’t you?
I hope you are all alright and will have a pleasant weekend.
Take care
Love
PaulineDear all,
I’m sorry to hear your week has not been too good, Janet but to read your other posts, it seems you are doing really well, considering everything you have had to cope with in such a short time. I hope this week will be a better one for you with fewer problems and brighter weather!
I’m gald you enjoyed you cousin’s stay, Joyce. That must have been comforting for you. The trip to New York may be in the autumn – I’m not sure yet but will certainly let you know!
Are you settling back in the UK Sue? At least the weather isn’t bad, is it?
How are you Darla? You know I have been thinking of you as you reached the 8 month mark yesterday. I am becoming increasingly concerned about the one year anniversary of Anthony’s death. I think it’s because it is coming up to a year very soon since his pain first started and everything moved very quickly from there. I have been through everything over and over in my mind so many times in the last 9 months but even so I am still dreading and fearful of these next few months. Anyway, I suppose I’ll just have to be brave about it as we all have to be all the time.
I think you’re right, Joyce, we have come a long way in these months, haven’t we but how hard and exhausting it is!
Take care everyone
Love
PaulineDear Cyndi,
I am so sorry too to hear that you have lost your soul mate. I have lost mine too and, although it is 9 months now since Anthony died, my heart remains broken. When I read your posts it takes me back to those early terrifying days when the shock and sense of loss is so painful and traumatic and I cry with you, because those feeling are still just below the surface for me.
As the others have said the shock and trauma does ease with time, as you begin to function and remember the love you shared. I find it helps me to talk to him, I have photos of him everywhere and I always imagine he is with me. I know he will be with me always in my heart and this helps. Your husband will be with you forever in your heart too. As many people have said to me how wonderful to have loved each other so much for so many years – not many people have that.
I also hope that you have people around you to help you. I find it helps to talk to people who knew and loved Anthony too. I hope your dreams will calm and that you can get some rest.
Take care
With love
PaulineDear all,
I am back again from Italy and have been keeping busy with work since I got back.
I am so glad your holiday was such a good one, Sue. You clearly couldn’t have chosen a better scenario. How surprising that there were so many of you going through bereavement. I think that must have been helpful. It is so difficult when you don’t feel people understand but clearly they did and it must have helped you to not feel so lonley. I also think that link with local people and families is so important. You really immerse yourself in the culture that way. It sounds great.
I hope you have a lovely time with your cousin, Joyce. She must have been a real comfort to you when Butch was in his last few days and I’m sure she will be a great comfort to you now.
I hope you are alright Darla and Janet. I am thinking of you all.
Take care
Love
PaulineYes, Joyce, that’s right. We would probably really go mad if we didn’t keep busy and the thing that always keeps me going is that I don’t want to be a burden on others and I think that this is all that happens if we don’t make the effort ourselves.
I still don’t know where all the keeping busy is leading though – it seems like nowhere! I try to make sure that some of the things I keep busy with are things that may help others and that helps me a bit.
Anyway, I’m writing my list for the day! All the best to everyone!
Love
PaulineDear all,
Yes, I am having one of those down waves again. I wasn’t too bad while I was busy over the weekend but now it seems very flat again and the same sad thoughts go continually around and around in my mind. It feels a little like madness sometimes, doesn’t it?
I was walking around a supermarket this morning – yes shopping to keep busy, Darla – and there was one of these awful English pop songs that they tend to play in Italy but the words struck home. It just kept repeating “Carry on, carry on” and “I’m here, I’m here”. I imagined Anthony might be sending me a message, although he was never partial to Italian/English pop, and it helped a little. The problem I still wrestle with is that I keep busy with work, getting things done around the house here that Anthony and I planned to do etc but then I pause and don’t know why I am doing them. I think my mind is worn out with trying to work all this out and I just go round in circles.
I studied Sons and Lovers for A level, Janet and loved it so the Lawrence link is interesting. I understand the loneliness you feel even when surrounded by kids and others. As you say, Darla, the feelings are always there. I suppose they just come more sharply into focus sometimes.
What a hard life it is! I am allowing myself a little self pity today – not a good thing!
Anyway, take care everyone!
Thinking of you all.
Love
PaulineI recently attended a conference at King’s College in London about hepatobiliary cancers. One of the presentations was by Justin Ceoghegan from Dublin where they have, apparently, been doing transplantation for selected cc patients along the lines of the Mayo protocol since 2005. They have transplanted 12 patients so far with positive results.
While I don’t think this would be open to UK patients unless they go privately, it will be of interest to patients in Ireland. CC is still a contraindication for transplantation in the UK but is something that I think we should be pushing for as a right for a selected group of patients. Why should it be possible in Ireland and the USA but not in the UK?
I also found out that there are 700 cases of CC per year in the UK, 10-30% of whom also have PSC, which is a very small number really but, there is such poor planning for them and things vary so much depending on which hospital you are attached to, that we need to keep fighting for more planning, specialist centres etc.
We also had a very positive presentation on Sirspheres by Douglas Coldwell (from Dallas, I think) who mentioned that this treatment is very effective with nodular type cc tumours. 3/24 patients treated had no evidence of disease after treatment. I think King’s College Hospital are now prepared to do this treatment for appropriate cc patients, although they haven’t done it yet for cc. I don’t think it is NHS funded yet either – another battle ahead!
Please ask if you need any more info and I will try my best to get the answers.
PaulineI am thinking of you both while this waiting period continues and hoping for the very best outcomes. The waiting must be awful but try to keep positive and know that this is the very best chance of getting rid of this terrible disease.
The very best of luck to you to you Cathy and to your dad Daleymom.
PaulineDear Julygirl,
I am also very sorry to hear about your diagnosis but delighted that it is resectable. This is the most important thing. I think the waiting is terrible and it does seem as though they are keeping you waiting a bit but it is best that you are very fit for the op.
You are bound to get nervous and to be down at times but please try to focus on the positive – you have the chance of getting rid of this awful disease, which is wonderful. They seem to have found it early and you seem to be in very good hands. I am based in London and know that St James has a good reputation for liver surgery. Again, this is fortunate – not all UK cc patients get a good deal!
Of course you will have bad days. This is all very frightening and shocking for you. I hope you have a lot of support around you but do try to pull yourself back up and focus on getting through this op and giving cc a good knock on the head.
Thinking of you,
Take care
PaulineDear all,
It’s good to hear from all of you and I hope everyone has coped with the holiday weekend. I have had my family here in Italy which has been really nice. The weather turned out to be absolutely beautiful with warm spring sun shine every day so we were able to be outside a lot which was good. However, now they have gone back home it feels more empty than ever here and I am reflecting again on my loneliness and am wondering how it happened that Anthony isn’t here any more. I wonder how many times the same thoughts have gone through my mind during the last 8 months and still no resolution.
I am glad you have felt slightly better for a while, Janet. The process seems to go like this. It is pretty impossible to be at such a low point all the time and, apparently, the backwards and forwards process is a sign of strength. It is exhausting though, isn’t it? Friends have often disappointed me. I tend to think they should understand more and should say the right things but this rarely happens in my experience and it can make you very angry. I hope they will be more sensitive when they see you. Sometimes, people just find it hard to say the right things, even though they mean well, I think.
Anyway, take care all of you. Thinking of you.
Love
PaulineDear all,
Yes Janet, life is so full of sadness really isn’t it with terrible things happening all the time? I suppose we’re all so much more sensitive to the suffering of others now as we understand how they feel and know how life can change for ever in a short space of time. I hope you hear from you Italian family, Patty. Perhaps you will visit them one day and call in on me while you’re in Italy!
I am thinking of you all. I hope you are ok, Darla and that you will have a pleasant Easter with reasonable weather. I hope you have a really good time, Sue. I will be thinking of you tomorrow, Joyce when you reach that very difficult 6 month anniversary since Butch died. I hope you will find some way of marking this which is helpful to you. Take your time regarding work, Janet. Could they ease you back in some how? It can be useful to take your mind off things but it can also be very hard to concentrate as fully as you need to at first.
It seems like another life now, doesn’t it, since they were here with us? The problem is that I still want my husband and our old life back so much it hurts all the time and I still think of him and all the things that happened constantly. I still can’t believe it really and part of me is still waiting for him to come back. I dreamed that he came walking towards me the other night and we sat on the sofa together. I was trying to change the channel on the tv and couldn’t do it so Anthony suggested I stand up and try changing it from the set. I replied that I didn’t want to do that in case he left me again once I stood up. It was a lovely dream – so normal- that it made me feel happy when I woke up.
I seem pretty normal to people now, I think, but what they don’t know is that I feel no better inside and still feel so desperately lonely without my Anthony.
Well, there is no answer to this and we all know how it feels so I will stop depressing you and go to bed and try to read. I have a book about someone who lost her husband and, because of the topic, I find it is possible to read it. Other than this, I still can’t concentrate on novels.
Take care everyone!
Love
Pauline xxDear Patty,
I’m sorry for the delay in replying but the internet crshed over here and I have only just got the connection again. I have looked on the tv for any mention of the area around Sulmona and have also asked my neighbours here. The earthquake seems to have affected quite a small area of about 6 km around L’Alquila and your family’s area looks like it’s further south than this so, hopefully, they are not affected.
I hope this is of some use. Sorry I can’t be more specific.
Take care
PaulineDear Patty,
Do let me know the name of the town if you have it. News of the earthquake is on all the time here so I may be able to find out something for you. It all looks pretty dreadful with lots of lives lost, more injured and many houses destroyed. Life is just very sad, isn’t it?
Take care
Love
PaulineDear all,
Yes, I am here again in Italy and there is a lot of sadness because there has been an earthquake in Abruzzo, a few hundred kilometres south of here. People have been killed and injured while sleeping and lots have lost their homes – very frightening and very sad.
I am glad to hear from you all and to find that you are all carrying on and getting through the challenges that life throws at us constantly. I am just here for a holiday this time and my step daughter, son in law and grandchildren are joining me on Thursday for 5 days which should be really nice, although tinged with sadness as well, because it is the first time we’ve all been here together without Anthony. I’m sure there will be some tears! The world is so quiet and empty without him. I have been dreaming about him a few times lately, which has been lovely and helps me a lot, especially when I see his face so clearly, as though he is really here.
The weather here is beautiful spring weather and I am hoping it will stay like this for the Easter weekend so that we can enjoy the outdoors a little. Walking is so beautiful around here! I hope you will have a lovely holiday, Sue. I hope you will meet some interesting people and see some beautiful places, as well as making some lovely food.
Take care all of you. Thinking of you,
PaulineDear all,
Sorry I haven’t been in touch for a while. I have been working really hard, keeping very busy and when I did try to post the web site crashed!
I wanted to say to Janet that you must do what feels right for you and not worry about others. They will or should understand and there are no right or wrong answers regarding what to attend and what not to attend etc. I will be thinking of you tomorrow on Joel’s birthday and hope you will find the right thing to do that suits you.
Darla, you know I will be thinking of you too tomorrow as you reach 7 months since Jim died.
Sue, I am so pleased about the bracelet and the phone call. I completely understand how much these sorts of things mean to us. I am so pleased abou the the ring as well Joyce. I know how much you will treasure it.
Take care all of you. I am off to Italy again on Saturday and will be in touch from there.
Love
Pauline
