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Everything posted by Grecian

  1. I would like to post a victory for the little man against the mighty French bureaucratic system. I had two appointments at Bordeaux on the 27th May and 12th June, for which I booked a taxi for each journey. I obtained a demande d'entente préalable for each journey and sent them off to CPAM at Noirt, they responded quite quickly, and informed me that they would only pay for a journey to Poitiers, as Bordeaux is outside the 150 kms limit. I told my doctor of this and he composed a very good letter for me explaining that I had not asked for the operation to be performed at Bordeaux, it was the surgeon at Bressuire hospital that sent me to Bordeaux. Also I had had two emergency operations performed at Bordeaux so it was imperative that I have my follow up appointments there. We sent the appeal off nearly two months ago, and waited and waited and waited, for a reply. The taxi firm were getting a bit jumpy for their money as the combined bills came to nearly a 1000 euros. Yesterday I received a letter from CPAM, they was a lot of legal gobbly gook on the first page, but the one line that mattered said, after considering the new evidence provided the panel has agreed to pay for the two journeys in full, or something like that in French! Yippee result obtained, I really do not know what will happen when I have my next appointment in October at Bordeaux, and will worry about that in October for the moment though: Grecian 1 CPAM 0 [:D]
  2. Grecian


    Hello Norman, just popping in to see how you are progressing. Whilst I am sure it sounds nice to be recuperating by the sea, and to have nice weather at the moment, if your room is not air conditioned I am guessing things could be a little uncomfortable heat wise at the moment. Have you been given any indication when you are likely to be able to go home? Or are you already at home, I hope so. Wishing you all the best for your continued recovery.
  3. Hello smiler and welcome to the forum. Just a few comments on being a type 1 diabetic in France. If your husband is injecting either pork or beef insulin, then I am afraid that is not available in France, only human insulin. This created my wife awful problems for quite a while having to switch from beef insulin to human insulin, she lost all her control for quite a while. Happily now that she is used to the human insulin, her control is better than when she was on beef insulin. She has her long-term blood test carried out every 3 months, you will need to obtain a prescription for the blood test from your own doctor. Retinopathy eye test once a year, you must book your own appointment at a specialist optician yourself, in our area there is about a 2 to 3 month waiting list to see him/her, so it will need to be organized in advanced. Coming over as non-actives you will be running the risk of not being accepted into the health system, if CPAM through a wobbly when you apply to join. Each case is now treated on its merits, so you may come across a nasty official who may try to block you from joining the system, it could be a lottery as to whether you are accepted or not. As you have said it is nigh impossible to obtain full health insurance with a pre-existing condition.. Good luck with whatever you decide to do.
  4. Grecian


    That's great news Norman, so pleased for you, you really do deserve a break after all you have been through. Yes I guess we are both on the way back up, to be cancer free is all that we can ask for at this moment in time, will just have to see what the future brings. Rabbie thanks for your good wishes, glad to of been of assistance in cheering you up! gardengirl glad to hear you have been clear for a year now, long may it continue. Quite happy to join in with the toast, here's to 'better health', cheers. Yes we are all very lucky.
  5. Grecian


    Hello Norman, my complications, well, I had a CT scan 2 weeks ago and saw my surgeon again at Bordeaux last week. The inflammation on my pancreas has reduced to 50% of what it was, the surgeon didn't seem to be concerned and said I can eat and drink normally again. The CT scan included my first 3 month check-up which thankfully turned out to be clear, no secondary spread, really good news. Unfortunately on the pooping front things are still really bad, probably going between 15-20 times a day still, it is really dragging me down at the moment. The surgeon told me it will take at least 6 months for any improvement, and in my case it could be nearer 12 months after what my body had been through. Something to look forward to. So really good news that CT scan was clear, better news on the pancreas, but pooping wise still horrendous. Hope you are getting stronger each day now, and will be able to return home sometime soon in the future. Hope you enjoyed your ice cream!
  6. Grecian


    Well I am almost jealous Norman, seaside, sun and ice cream, I had to make do with compotes and a 10 foot square room with no outlook at Bordeaux. Glad to see  you are able to get out and about, I am guessing your recuperation must be going to plan. Hope you can manage more than just ice cream at the moment, but it is a slow process this post-op recovery lark. I had my first alcohol for 3 months last week, just to see if I still like it of course.[;-)]
  7. Grecian


    Gosh you really are going through it Norman, it's a good job that they picked up the embolism and have operated to remove it. I will have my last blood thinning injection tomorrow. I have been injected everyday for 11 weeks now, I thought it to be a bit OTT, but I think I will review my opinion if it has prevented an embolism. Enjoy you stay by the sea side.
  8. Grecian


    Sorry that you had to have a second emergency operation Norman, I know all too well that it can set you back again. Hope the procedure was carried out via keyhole and not open surgery, my 8 inch scar is healing nicely but it has left a dent in my tummy! Are you back on solids yet, or is it just water or those pesky compotes? Really wishing you a speedy recovery Norman and hope you return home as soon as possible, although I must admit to being slightly jealous about the sea view, I had to look across at another block of wards at Bordeaux.
  9. I really hope you are do not need a second operation Norman, you have been through enough already in your life. The last thing you want after your operation is a blockage at this stage, hopefully that fact that they are now feeding you those delicious compotes is a good sign. I have been wearing the pads since my stoma reversal over 6 weeks ago, and have purchased some from UK Amazon, the cheapest I could find actually, which are really good quite thin and fairly comfortable. Thankfully I do not have diarrhoea just constant small stools sneaking out. The trip to Bordeaux will be daunting but as you suggested I will mention it to the taxi driver, I know all of them quite well now, and ask him to pull over if too big a mishap should happen.
  10. Bertiebe I am afraid I cannot report any improvement unfortunately, the daily toilet use is really dragging me down at the moment, somewhere between 15-20 times a day, not exaggerating unfortunately. What makes it worse is that I have no control when the little buggers want to slip out, they just evacuate when they are ready. I saw my own doctor yesterday but he refused to give me a prescription for any Loperamide, saying that I must not cause a blockage, really 20 times a day and he is worried about a blockage! I have an appointment to see one of the surgeons who 'had a go at me' on Wednesday at Bordeaux, hopefully to have my pancreas drain and bag removed, to make matters worse the nurse pulled the drain out yesterday when changing my bag. I had to telephone Bordeaux to seek their advice, the doctor told me to continue to wear a bag without the drain in place, he has faxed a prescription to my local laboratory at Bressuire for a blood test on Tuesday to check the pancreas before I see the surgeon again on Wednesday. This is the second time that a nurse has pulled the drain out, the first time it happened I spend 4 hours in A&E at Bressuire hospital for a surgeon to put the drain back in again. I really do not know how I am going to cope with the 500 Km journey on Wednesday, I hope mind over matter will prevail and I don't have any mishaps on the journey. I hope you are coping with your 150 Km journey each week, the hassle just seems to go on and on, I guess one day tings will return to some sort of normal, I certainly hope so.
  11. Very glad to hear things went well Norman, I hope the setback isn't too serious, I know all about setbacks! Have you progressed to the tasteless soup and compote yet?[:D] I hope that your hospital stay will be a lot shorter than last time, not the place you want to spend too much time by choice.
  12. Blimey Norman, there you have been giving me so much help and support, and now this has happened to you. Really sorry to hear you have to go through the operation, and recovery period, with all that entails. Thank goodness they have caught it early, always best to have that on your side. Wishing you all the very best of luck, and a speedy recovery, although I know only too well, that the recovery bit takes a long, long time. Really hope your stay in hospital is not as long as the last operation. Richard
  13. Thank you all for your kind wishes. Must admit it is really nice to be home again, although it is quite scary as to how weak I still am, my wife is telling me I am expecting too much too soon, which she is probably right. I did manage to have a reasonably long walk yesterday so must be healing, need to put some weight back on as I lost 17 Kgs whilst in hospital, quite a scary amount, my wife was really shocked when she saw me on Thursday. It pains me to see my garden in such a mess, but really cannot do much about it at the moment, I will have to pay somebody to come in and cut the grass, and do some strimming, I certainly will not be up to very much for the foreseeable future that's for sure. Norman so sorry to hear you will be back on the compotes again on Monday, I really hope your hospital stay is nothing too serious. Best of luck for Monday.
  14. Since my last update just over two weeks ago, it has been a real roller coaster. My transfer to Bressuire was blocked because I still have a drain bag for my pancreas, and they refused to accept me, thanks a lot. Our French neighbours have finally rallied around my wife, who has been offered lots of support from them. I probably hit my lowest point in the last two weeks, only to have hit my highest point today. Briefly, about two weeks ago they removed the awful tube from up my nose, which was in place for 10 days, no food for the next day, but then I was started back on solids. They gave me chicken for lunch, and ham for tea, quite stupidly on my part I eat all of it, having not eaten meat for 6 weeks previously. Unfortunately my body was unable to digest the second meal, and rampant sickness with plenty of green gloop pouring down the sink during the night and early morning. Food stopped again, low point, started back on my favourite tasteless soup for a day, then back on solids. Last Thursday at about 5.30am the runs started, I then spent most of Thursday morning and early afternoon visiting the toilet, not kidding over 20 times! Really low, it would seem every time I tried to eat solids the body was reacting to the food very badly. I did manage 2 biscottes and cheese on Thursday night. Friday only two yogurts all day, Saturday back on solids again, no problem from either end, and I managed to pass a stool[:D], the first for over 6 weeks! I have been managing to eat solids since last Saturday, and was informed by the surgeon two days ago that today I can go home[:D][:D][:D], I still have the problem with the pancreas but they are prepared to discharge me, but I will be under the care of a nurse at home. I must also come back to bordeaux in 2 weeks time for the drain to be removed. So after 7 and a half weeks in hospital I will finally get to see chez moi and my wife again today, to top it all today is my birthday, the best present I could have been given. I know I never want to see another biscottes or compotes for the rest of my life, bloody awful things!
  15. Following on to my last post, I have agreed with the doctors this morning that I will spend another week here in Bordeaux, and then reassess the situation. If things haven't improved and it is going to be a long haul, then I will request a move back to Bressuire. As much as I want to see my wife again, we both feel for the time being I am better off in Bordeaux.
  16. Thank you all for your replies today, it really has helped a lot. In a low spot at the moment but I am determined not to be spending anymore time here than I need to, so back to being positive. Physically I am in reasonable shape, obviously still pretty sore from the open surgery, but I am managing two quite long walks each day now. As regards to moving back to a hospital nearer home, I asked the surgeon last Friday, after he delivered his bombshell, if I could be moved to Bressuire hospital, to which he replied, no problem, I will organise it for next week. Having now thought it through and talked it through with my wife we think maybe to stay at Bordeaux 2 more weeks, and see where I am health wise then. At the moment I have a single room with toilet and basin, the hospital offers wi-fi, telephone and television. Bressuire hospital does have single rooms, but also double rooms as well, it would really do my head in if I were to lose the privacy of a single room, and have somebody else in the room with me. It may be too late to stop the transfer but I will try tomorrow. Norman I think you could be right about the stoma causing the problems, the surgeon did say it wasn't working properly before the 3rd operation, so it could be why the complications have occurred. Like that Norman I used the 'c' word!
  17. I can confirm that CSF in our area offers no practical help, only help with translation and telephone calls. The woman aiding us is fully aware of my wife's plight, but has not offered or arranged any practical help. I have mentioned earlier in this thread that I have not been too impressed by CSF in our area. She did assist us with trying to sort out our taxi problem, but we have since been turned down, so a hefty bill awaits to be paid. The areas in which my wife really needs help are nighttime monitoring, and help with her shopping. Other things such as cleaning etc would be helpful, but she is managing to get by. It is really a case of the fact we have not seen each other for 5 weeks that is upsetting her, and with the latest possible setback it doesn't look like things are going to improve anytime soon.
  18. Thanks for the concern Theiere, much appreciated. Unfortunately things have taken another turn for the worse, ten days ago I needed a third operation, this time to separate my pancreas from my colon, they also reversed the stoma at the same time. The operation had to be performed via open surgery, so still very sore at the moment. Really have had enough now, especially after being told yesterday that my pancreas is inflammed and I may need to stay in hospital upto 3 months! I don't know what you want to call it Norman, but with so much going wrong I am sticking to botched. I haven't seen my wife for 5 weeks, she is really struggling and desperately needs me home. I wish I had gone for the option of an operation for a permanent stoma at Bressuire now, this whole episode has now turned into a complete nightmare. I guess I will be told to be grateful, buck up and stop whinging, but I defy anybody to have 3 operations in 3 weeks and still try to remain upbeat. I have decided that this thing is not going to beat me after yesterdays news, and I will try and get out of hospital at quickly as possibe.
  19. Not sure about prunes and custard Theiere, I am going to slip out for a vindaloo tonight, that should sort matters out! Still in hospital I am afraid, really despondent now. They started feeding me totally tasteless soup on Wednesday, along with pots of apple puree, unfortunately the apple was too acid for a tummy that had not eaten for over two weeks. Yesterday I asked the child doctor who is looking after me if I could have an alternative to the apple, to which he replied no, he got quite stroppy and has now put me back on liquids only. Really angry now and feeling I have been let down badly with a botched operation, and now seemingly heartless aftercare. I must add that the nurses have been brilliant, no complaints on that front, really first class care. My wife is getting distressed at being left alone for so long, and has had a few problems, I am going to ask if I can be transferred back to Bressuire hospital, as I think this is going to be a very long haul. Thanks very much for all your kind wishes.
  20. Still in hospital unfortunately. They have found a blockage in the bowel preventing things to pass normally. Monday they injected a bottle of glupe in via the tube up my nose to try and clear the blockage. An x-ray showed things were moving a little better, but unfortunately not enough to allow me to eat, another operation has been muted, but they seem confident that it will cleat itself, I bloody hope so. The tube up my nose has been removed thank goodness, and I have not been sick again since the week-end. That really has cheered me up. The best piece of news I have received is that the biopsy result came back negative, showing no spread into the lymph nodes, so no further chemo needed.[:D][:D][:D] Overall a lot happier, but bloody starving, no food for a fortnight! I rather they wait and get things right than try to rush things, so will just have to stay for as long as it takes.
  21. thanks for the replies. It wasn't until today that i went for a walk, have asked several times, but today they allowed, will try and keep them going now.
  22. Unfortunately still in hospital, it has turned into a complete nightmare. Had my op on Tuesday 17th, it was carried out via keyhole surgery, was told there were no problems, great I thought. By midday Wednesday was having severe abdominal pains, by 3am Thursday morning I had to insist to see a doctor, one showed up about 15 mins later and declared I had internal bleeding. Was rushed down for an emergency op at 4am. Have spent 5 days in intensive care, now back on ordinary ward. Had no food since coming in, they tried feeding me Thursday, only for it to make me puke it all up again yesterday. Now had a tube down my throat, with no immediate prospect of it being removed. Lowest I have ever been in my life. Sorry keying is a bit disjointed, very weak.
  23. Just to say I will be leaving home Monday morning at 5.30am for a 8.30am appointment at Bordeaux for a day of scans, tests, appointments with various people and I think a shave of the nether regions[:-))]. I do not think that there is any wi-fi at the hospital so I will be offline for at least a week, hopefully I will still be around to update you on my operation sometime after that. Not sure what time the operation is booked for on Tuesday, I have not asked as I am not sure if I really want to know, just wait for them to come and wheel me away. I have come a long way since I started this thread on the 20th October last year, a very large part of that has been down to you very kind people out there with all the support, advice and best wishes you have given me, it has really helped me get through this nightmare scenario I find myself in. When I started this thread I did not really intend to turn it into a blog type situation, I was only seeking help as to how the whole system worked in France when it came to treating cancer, and I am really glad that I started the thread as I really do not think I could have coped with all the stress, hassle and bureaucracy I have faced to get this far. If this thread only helps one other person out there who may be facing a similar situation at the moment or some time in the future, but does not wish to post their personal life for the whole world to read, then it will have all been worth it. So folks I hope to be reporting back at a latter date, for now I just want to say a big thank you.
  24. Thanks Bertiebe, I know now that if you don't ask you don't get in France, as you say I am sure the help is out there but I have found it never forthcoming, very frustrating. My own situation took another twist today, we received a letter from Bordeaux this morning expecting to find our transport papers inside, unfortunately it was only the extra appointment that they have tagged onto my visit tomorrow to see the stoma nurse. Maybe the magic pieces of paper we are expecting will come in another letter. However my CSF lady has been in action this morning, she telephoned CPAM at Niort for me asking if they had received my Demande d'entente préalable form, to which they replied 'non', and asked if my doctor had marked the form urgent, which unfortunately he did not. My CSF lady then telephoned my own doctor for me and explained the situation, my doctor told her that he would fax the form to them today, and told her to advise me not to pay for my taxi tomorrow, as he said he would sort it. He also told the CSF lady that there is no way that I should be driving there tomorrow. She then telephoned the VSL office and explained the situation, and they seemed to have accepted the situation as it stands for now. Obviously if nothing transpires from CPAM then I will face the bill myself. This situation has now been dragging on for about 2 weeks, and since last Thursday has totally consumed our time in trying to sort the problem out, something quite honestly at the moment I do not need. So I hope your aide social is able to sort your own situation, as like mine yours has been dragging on for a long time as well.
  25. Well, the plot thickens... I asked the lady from CSF if she would telephone Niort this afternoon to see if they had received my Demande d'accord préalable, but she was informed that the post is not processed until 4pm, so no joy there. However my wife plucked up the courage to telephone the secretary at Bordeaux, as we should have received a letter containing paperwork from the hospital that she told my wife last Thursday we would receive, in between shouting at my wife and telling her to drive down for my appointment. Well the letter has not shown up, but we noticed that the barcode sheet that was generated has the wrong name of our route on it, everything is fine, we were concerned that there may have been some prescriptions in the letter that I needed to get made up. The secretary told my wife that the letter had been sent, and there would be no prescriptions in it, but there are two bon de transport for my forthcoming appointments. I give up, one minute she is saying no you can't have them, now supposedly they are winging their way to us. Just got to hope now that the letter shows up, or I guess we will have to ask for duplicates on Thursday, that should go down well! Norman and Idun, will ask to see the aide social when I am in hospital, many thanks for that.
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