jules

thankyou everyone who has replied to me and passed on some v useful info, marianne i am delighted to hear that mark’s tumor is shrinking, i can’t begin to imagine how difficult it must be to have a new baby to care for in the middle of all this, i think that this disease is the pits, however i think that sites like this can help so much to keep us all informed and help in the sense that you don’t feel so alone.

hi marianne, thankyou, first hand experience of this drugs is helpful, i am sorry that the cisplatin made mark sick – has the chemo been effective in shrinking the tumor? I hope we can still go on holiday too – we are fed up with this dreadful illness dominating our lives. Kind regards, Jules

i was sorry to learn that your husband has been admitted to hospital, however maybe it will help to push along his treatment, i can empathise with him over the hospital food, over cooked stodge is not very appetizing…would your husband not be more comfortable with stents? – my dad had great relief from the symptoms of shivering/itching/rigors after a metal stent was fitted, metal stents have a longer life and are less prone to blockage, the NHS are not keen on them as they are v expensive. From what you have said though PDT will do the same job. I hope it goes smoothly for you both and it is good that your husband will not have to stay in hospital too long. He will soon be home, hopefully alot more comfortable.

My Dad is doing well, his weight is stable, he is still waiting for prof cunninghams verdict re the chemo.

Jules

Patricia,

thankyou for your message. I think that you have such a positive attitude and I admire your approach to this. I agree that to have a support network is so important. Unfortuantly my dad does not have such a network, he took early retirement when he was 53 and his passion since then has been sailing, now that he is not fit enough to sail he is very depressed. He would never be willing to do anything other then be skipper and in charge!
I am 35, have 2 brothers who I never hear from and my parents only get the occaisional phone call from them. My dad has refused visits from friends as he feels they are coming ‘out of curiosity’ – my dad is a very private man and is unable to discuss how he is feeling, it makes perfect sense to me that the whole body and mind needs to be treated and it must help to be able to talk openly about how you are feeling, however i keep reminding myself that i can’t really appreciate how my dad feels. My dad was really poorly before he would agree to any treatment. His faith was in the NHS, he had health screening privately about 3 yrs ago which picked up abnormal liver function, he then was seen by a liver consultant on the NHS for 3 yrs who put his liver problems down to ‘alcohol damage’ despite the fact that he’d never drunk to more then the occ glass of wine – even when he was admitted to the local hospital in Jan 05 with abdominal pain they failed to spot the fact that he had a tumor covering about 60% of his liver, they discharged him saying they didn’t know what was wrong with him, my dad then progressively got worse – he became jaundiced, was in pain, could hardly move, could not eat and was in agony with the itching and fevers. He went back to his GP who claimed that he didn’t know what could be wrong with him, but would try to get him a scan on the NHS, eventually i persuaded my Dad to have a scan done privately and it was not until july last yr that this was picked up. My Dad does not have health insurance and has had to use his life savings to pay for scans, treatment, operations as we have been told that he cannot wait for NHS treatment. I think that you are wise to go to France – I believe that in theory you should be able to claim back cost for treatment from the NHS when you return – a case recently went before the European Court of Justice concerning a lady who had a hip replacement in France as she could not wait forever on a NHS list. I think the NHS just cannot cope with the pace of modern medicine and that the system is crumbling, I would pursue these alternatives if i were you..

I appreciate our exchanges on this board and thank you for your kind words and encouragement, i don’t feel quite so alone. I hope that i can be of some comfort and help to you too. I am thinking of you, your husband and your family every day. Take care,

Jules

Patricia,

thanks for the info. I think this drug looks hopeful. How is your husband? It must be a worry for you when you are at work.. do you have any support at home? – my mum feels very isolated – some people avoid you, i think they feel embarressed and don’t know what to say – the best thing they can do is just listen. My dad just seems to want to talk over the illness, the operation etc..over and over, i can understand that this is helping him to make sense of it all. My Dad is finding it hard to live with the uncertainty and is depressed, i find this hard to deal with sometimes as i just want to make the most of the time we have, however i can’t really imagine how it must feel for him. He still gets really tired and is troubled by a persistant cough which drains him other then that physically i think he is doing okay.

kind regards

Jules