I live in the Vendée, just outside Chantonnay. My husband was diagnosed with Prostate Cancer at the beginning of January 2010 but wasn't operated on until the 6th April 2010 when he underwent a radical prostectomy. After surgery he was told all the cancer was removed and we were told that further tests showed no other signs of the disease. However he has been in severe, intractable pain since December 2009 and despite different drug regimes he continues to suffer. The latest drug he's been put on is Duragesic patches which give him a small amount of relief but he's still having severe, chronic pain.
After a lot of pestering on my part the Urologist finally agreed to give him an MRI scan because he couldn't find any reason for his chronic pain. This was done at the beginning of June 2010 and it was discovered that he had a tumour on his kidney. 6 weeks later he had a biopsy done last week and said it was the most barbaric procedure he'd ever had to endure and accordingly said he would never undergo this procedure again even if his life depended upon it. We go back for the results this Thursday but despite whatever is found he was told in June when we got the results of the MRI scan that he would have to have his kidney removed.
This new diagnosis was a real 'body blow' for him. He is having enormous problems coming to terms with this devastating development after being told that after the RP he no longer had cancer and consequently I think he's becoming more and more depressed about the outcome of this new tumour which he is convinced is another cancer. The Urologist has told us not to worry about the tumour and said that even if it is Cancer we should enjoy our summer with family and friends. We haven't found this attitude very helpful and have found the long wait for treatment very stressful. All my husband wants is to get the treatment over and done with and then he can get on with planning for our future. But at the moment we don't know how long it will be before the surgeon decides to operate and in the meantime my husband is deteriorating both mentally and physically at a 'great rate of knots. My concerns are that he's never been given a bone scan or indeed a full body scan which I believe is the norm when being treated for Prostate Cancer in England.
He is being treated at the hospital in La Roche Sur Yon but apart from the District Nurse visiting him post-operatively we have never been given any other help or advice. Our local GP is very kind but doesn't speak any English. Our French is very limited and when it comes to describing how painful the situation is for my husband and we never seem to be able to make an 'impact' on anyone and get over to them how very difficult life is for him whilst living with such a great degree of pain.
The Urologist who is treating him speaks a little English but no matter how emphatic we are in trying to describe his pain he somehow doesn't seem to understand us. He just keeps saying "you shouldn't be having this pain, everything is OK, but maybe you've got Neuropathy." This is of no help to my husband to keep being told that he shouldn't have any pain when he's clearly suffering very badly.
I have only found out about your organisation via a web link from a person on another Forum I have signed up to which is the Prostate Cancer Charity in England. Please excuse my 'Epistle' but I just need to get some answers and finding this site may be a lifeline to us in the future.
Do not worry about your "epistle" we can all look and learn from each others experiences..and sometimes offer advice that is helpful.
I would like to offer a few suggestions that may help...first use the active listener section on this forum...you will be allocated someone (english) who you can bounce things off and maybe gain help there. In those dark hours in the night, it is always comforting to know you will be listened to and that you are NOT alone.
Secondly, ask on your department's section of this forum, if anyone with better French than you can come with you...Not easy for your husband to accept a stranger hearing all about his details BUT you have the right to do this under the Hospital Charter.
Thirdly please do not let your husband worry that he has another cancer suddenly appear on his kidney...I have Lymphatic cancer..found in my breast bone...THEN lumps in my neck. I had a biopsey and was worried about secondaries but my specialist explained that by doing the biopsey they found the cancer was the same as the breast bone one and was not considered as secondary. Secondaries always have a different makeup to the original.
Lastly I agree it is hard to explain pain to the French with only "doulour" to cover everything from a twinge to a heart attack! So what I do, is say "I have a pain here" (indicate where) and then I say " Its like..a needle stabbing me/knife turning/muscles after a long walk etc? It gives them an idea of what its like. Also since having chemo, I also use the Hospital standard of 1-10 for pain. So you say its like 9.
Having told me I would have chemo within the next six months, my specialist also told me to go off and enjoy myself. Does not mean its your last summer...it means try not to worry!...funny peculiar the french eh?
Good luck with medicos and always remember the forum and its contributors are always here to help..although her husband's cancer is different, you may gain comfort from reading the posts from "lottie" and how she has got on this year, since her cry for help.
Just a slight correction to goldenoldies post - you can find details of regional CSF branches in the Contacts section of the forum, or by going via the head office, the contact details of which are also in the contacts. Some regional branches do not show details in the Contacts section, but can be found through the CSF web site or by contacting head office.
(The Active Listener section of the forum cannot be viewed except by authorised Active Listeners.)
CSF Vendée now do have their details in the Regional Contacts section of the Forum and you may find it useful to get in touch with them. I understand from speaking to one of their members that they have a good relationship with the hospital at La Roche which should also mean that they can help you get some answers to your questions.
CSF local groups give support in whatever way they can, this may be by helping with language problems, finding information or by just "being there" with you when you need moral support. This Forum is also here to help with support and the sharing of information.
You and your husband are living through a very difficult time and I do so hope that we can provide the support that you need.