Anthony died on 30th July in a London Hospice
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Dear Sue,
I just want you to know that I am thinking of you & that you can contact me directly at any time through my email by clicking email on the left side of the page if you want. I console myself with the thought that Jim also would not have wanted to go on for months in pain so his passing quickly was a blessing as he is no longer suffering from this terrible disease. I am glad there are people there to support you during this time. I feel so badly for you & your family as I know how painful this is for all of you. Please keep in touch. You are in my thoughts & prayers. Both Pauline & I will be here for you whenever you need us.
Love & Hugs,
Darla
Dear Darla,
I have just sent you an e mail but it hasn’t shown up in my out box so I am not sure if you have received it. Please let me know!
Best wishes
PaulineDear Darla,
Ray is in hospital and the doctors have told us he is in the final stages of multiple organ failure. He is not in any pain just very sleepy. I have sent for his sister in Spain and have told all his relations they can come and see him for half an hour but to tell him jokes and not cry. I am sure Ray knows that he wont come out but he wont want to hear it from anyone it is much easier on everyone to maintain the pretence. I am OK my Mum is with me bless her, Sam has also come home. We are very sad obvoiuosly but Ray wasreally scared that he would be in pain for months and waste away and lose his hair etc and he has done none of these things.
I will keep you informed how things go.
Thanks for being there for me,
All my love,
Sue
xDear Sue,
I am also so sorry to hear that Ray has gone back into hospital and that things seem to be getting worse for him. I am sorry I have been out of touch for a little while. I had problems getting logged in but I have been following your posts.
As Darla says the main thing now is for Ray to be as comfortable and pain free as possible. Believe me, if you can achieve this it is such a huge thing. I also know that you will always remember these days and I hope there will be some tender memories among such sad ones. Do ask for help from those around you, for example, in getting some rest yourself. You will need it to keep caring for Ray. I too am thinking of you and am remembering what Anthony and I went through 10 weeks ago. I hope that things will be peaceful for you both. I too will be here for you throughout these terrible days. Please keep us informed of how Ray is and how you are. Please also ask for any advice you may need. If I can help I will.
With love and support,
PaulineDear Sue,
I am so sorry to hear that Ray is not doing well. As you know, I was where you are now just a little over a month ago. I know how frightening this all is for you. All I can tell you is to try to be strong. Have you contacted the rest of your family yet? You will need each other for support. All you can do for Ray at this point is to make sure that he is kept comfortable & is not in pain. I can truly say that I know how you are feeling at this time. All the emotions of pain, sadness & also being afraid of what the future holds. Please know that I am here for you. I will keep you & yor family in my thoughts & prayers. Please stay in touch & let me know how things are going. If I could I would give you a big hug, but you will have to settle for a cyberhug!
Sending My Love To All Of You,
Darla
Dear Darla,
It isnt good news the consultant has jsut phoned and he is taking Ray back into hospital I think his kidneys are also failing now as well as his liver – my daughter says it is something called Type 11 HRS (Hepatorenal Syndrome) which is brought on by liver failure – in other words he is shuttinjg down. At the moment he is in no pain, just sleeps a lot. I am frightened he will not come hope again. You are the first I have told of this – I am trying to compose myself to phone my daughters and his sisters and brothers.
SuePauline,
I also am wondering how you are doing as we haven’t heard from you for a few days. Let us know things are going for you.
Sue,
Have you gotten Ray’s blood results yet? I do have family to help me through. I have a son who lives in the same town & my other son & daughter-in-law are only 1 hour away. I also have 2 sisters & my parents who are still doing well at 82! They have all been very helpful. Trying to keep me going & they are also dealing with ther own grief. However, they all have someone to go home to & at the end of the day, I am still alone. I guess I’m just feeling sorry for myself. I know that this life is what I have been given & I will just have to learn to deal with it. Hope the news about Ray is good news.
Darla
Pauline are you OK? We seem to have taken over your posting. Let us know how you are going on.
Darla, we are just waiting for Rays blood results, the consultant will be phoning us to let us know if there is anything more he can do. Ray has ascites and odema and spend much of his time sleeping. His three daughters are all coming round to try to keep his spirits up – they can bully him without him shouting at them – so they are a real blessing. I hope you have close family to help you through the bad times.
Thinking of you, Sue.Hi Sue,
I know that everyone has to make there own decisions on how they want to cope with this disease. Jim had a tube for drainage down his nose & he keep trying to take it out. Towards the end he was sucessful in removing it & they felt it was better to leave it go if he did not want it. I think he too was just tired of all the needles & things. I like you would have rather know exactly what to expect to be better prepared, if that is even possible in these situations, but I guess in the end it is what it is. Jim & I were semi retired & have an antique shop. We live above it. I did reopen the shop, & there are days it is a real comfort to have something to do that we both loved & enjoyed & people to talk to. On other days, I am so sad & lonley that I am not sure if I want to continue to do this alone. It is still hard for me to believe that he is not here & will not be coming back. I sometimes think he is just upstairs or in the other room working on something. There are also days that I just don’t want to be around anyone!!!!! I am sure that the holidays are not going to be easy. At first we were given 6 months, so we thought he would still be here. However, I would not have wanted him to be here in the pain & suffering that he would be enduring. For him this is better & for me the pain & suffering of losing him has just begun. Hopefully with time I will learn how to deal with all of this in a better way. I just keep hanging on to the thought that no matter what, he will be in my heart forever. Enjoy every moment you have together. Take care of yourself & try to be strong for Ray.
Keep in touch.
Darla
Hi Darla,
Ray has come home from the hospital and they say the Stent is working, but he has odema and water retentiion in his abdomen which my daughter explains is ascites due to the cancer. They have given him water tablets which dont do a thing so we are going back to the doctors today. Reading this website they he probably should have the fluid drained but he is so fed up of hospitals and needles that he doesnt want to know and just says to give the water tablets a chance. Our daughter and my two stepdaughters constantly phone me and tell me to push him to the doctors, but I am trying not to push him too much I have to accept if this is they way he wants to handle things.
I think it depends upon your nature whther it is best to know what to expect. Sam and I would rather know, but Ray wishes he has nver been diagnosed and would rather put his head in the sand and pretend he is not getting any worse.
Do you work, Darla? I have a small business which I run from home, I cant spend much time on it at the moment, but I am wondering what it will be like living alone and working alone here too. I think it would probably be better to mix work with other people.
Are things getting any easier for you? I am told that the first Christmas is hard when you have last someone. I hope to still have Ray by then but I dont know whether I will.
I Thank you for your advise of “One day at a time” – you are right, I will try not to look too far into the future and just deal with every day as it comes.
Many thanks,
SueHi Sue,
Thanks for your kind thoughts & concern. It is amazing that even though we are all going through this at different stages & in different ways we are still able to help & support each other. I am glad that they were able to place the stent for Ray. From now on in all you can do is take it One Day At A Time. Atleast I was fortunate that here I was able to stay with Jim at the hospital when ever I wanted or needed to. I am not sure if it is better or worse to know what to expect. I didn’t learn much about this disease until Jim passed & I felt I would like to have know more so we could have known what to expect. Interesting that the most informative information I got was from a 2nd year med student. Now hearing that your daugther is a med student & you both are aware of what to expect, I am not sure which is better or worse. Good luck today. I will be thinking of all of you & praying that things will have improved. Please keep on posting & let us know how you are doing & how things are going with Ray. We are all here for you. Take Care.
Love to all of you,
DarlaDear Paulina and Darla,
Thank you so much for your replies. The good news is that at the second attempt they managed to put a stent in for Ray. I dont know much more than that at the moment as I didn’t get to talk to the surgeon as I had to go at 8pm and he hadn’t been to see Ray as he only came out of surgery at 7pm. I am hoping that over the next few days he will start to feel a little better. He is in St James hospital in Leeds, they have a fantastic reputation and I know he is in good hands. I will have more news when I go today.
I hope he will be well enough to come home soon.
This episode has really shaken me though, I thought we would loose him in the next few days, I suppose we might still, but there is a chance we may have him a bit longer.
My daughter is taking it quite hard, she is a final year medical student and she knows exactly what happen when his liver fails, it is really hard for her trying to do her work in the hospital, studying and coming home from Hull where she is based several times a week to see her Dad.
It sounds so lonely you both taking walks alone on opposite sides of the world, but I suppose you need time on your own to let it all out. Someone once told me that you should not expect too much from yourself for a year after a death of a close one, I dont know how true it is but the physical and mental effort of looking after someone must take a long time to get over.
Sending you both my love,
SueHi Pauline,
I find that taking walks is helpful, too. It helps me to think & I also talk to Jim. I seem to have short bouts of crying from time to time. It was in the 90’s the day Jim passed away a month ago. Now it is only in the 50’s. Today it was cold, overcast & drizzly all day. I also wonder how we will be weeks & months from now. It is hard to even imagine years! I feel like the sadness, grief & anger are getting worse not better. I wonder when & if that will ever change. I am thinking of you too & hope you are doing OK. Take Care & please keep in touch. If you want you can email me directly by clicking on email on the left side of this post.
Darla
Sue,
Please keep chatting to us – I also find it really helps. Which hospital is Ray in? I hope they manage to get a stent in because that could well make him feel a lot better. If you think you might need another doctor to have a go at the stent, let me know because there is one of the best in the world at King’s. He really helped Anthony where others had failed.
Ray is obviously feeling very weak and low at the moment. Has he lost his appetite? I am so pleased he is not in pain though and I hope he carries on like that. I hope the doctors will be able to tell you exactly what they think his situation is and how they can help him. I think this will help you to prepare yourself for what is ahead so that you can in turn support Ray through this.
I feel so sorry for you having to also deal with being on your own in the house at this time. I suppose in a way I was lucky that I had got very used to this as Anthony had spent many weeks in hospital over the 2 years with cholangitis, having stents replaced etc. I remember how this felt at first and it was very difficult.
I don’t know whether they will suggest hospice care for Ray at some point but one of the positive things about this as opposed to hospital care is that you can stay there 24 hours a day. They used to give me a “put you up bed” in Anthony’s room and so I was with him all the time. I found visiting hours very frustrating in hospital – and pretty inflexible.
Anyway, I am thinking of you both and hope there is better news about the stent today. Take care!
Pauline
Darla,
I am still thinking of you. It has been a little sunny, if cold, here in the last few days and I have been going out for walks on the common near where I live. I find it helps me to think. I have a place where I sit and talk to Anthony and do the silent crying that I seem to be doing a lot at the moment. I have been thinking about you on these walks as well and wondering how we will be in the coming weeks and months. Take care!
PaulineSue,
Sometimes you just need to talk it out. I also did some stupid things like you. The filling up the car thing was one of them! After Jim passed away, the first night I went home was not quite as bad as I thought because I also had been alone a lot of the time the last few weeks. It has only been a month & I still don’t know that I truly believe he is never coming back. I keep trying to tell myself that atleast he is has now gone on to a better place & is no longer in pain, but it is not easy. The help & support of everyone on this site has really meant a lot to me. Please remember that you & Ray are in my thoughts & prayers. Keep on posting & let us know how things are going. Take care & try to stay strong for Ray.
Darla
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