I have registered on this site in the hope that you may be able to help me. My boyfriend lives in France and has been suffering with Lymphoma for the last 2 years. Although he has coped well so far with a splenectomy and 3 lots of chemotherapy, he is now undergoing a 4th chemotherapy and is suffering quite badly. I live in the UK with my son and although my boyfriend and I speak at least twice a day, I feel unable to give him the care that he needs at the moment. Unfortunately he does not have any family to look after him and so I was wondering if I could get some advice for him? He is in bed most of the day at the moment and is very despondent, he can't really eat anything and just wants to sleep all the time. Is there anyone available to offer some support with this organisation please? I'm afraid my boyfriend doesn't have the energy to find this out for himself and finds it difficult to ask for help even when he needs it. Please can someone give me some advice? I would really appreciate it.....x
As Francis says, there are many CSF associations dotted around France and it may well be that your boyfriend is in an area of one of these. If so, then we can possibly provide practical and emotional support. If not, then we do have both telephone and e-mail helplines to enable people to share their problems and seek information.
Please post again or send me a PM so we can see what support we can give.
I can tell you now though that the huge tiredness -or fatique as they call it over here - IS normal. Personally I think its because Lyphoma is an "all over" cancer so the whole body reacts more. I stayed in bed most of the day and only did what I could maanage. BUT...he should try to aim for a little progress...maybe getting dressed and sitting in a chair for part of the day. It will whack him out but a tiny triumph mentally.
On the food side, tell him to eat whatever he can....I existed on tinned peaches and grapes (without the skins) for several weeks. Better to eat something than nothing..
Don't worry about the contacting people..you just cannot even think enough let alone talk.
As the other have said wheels can be set in motion once you have replied....so glad you did
Your boyfriend lives in the area of CSF Bretagne Ouest - I have sent you a PM with the phone and e-mail details or you can pick those up from the Contact section of the Forum. I don't know what level of practical support will be available as it will depend on where the membership is in that area, however, there will definitely be someone at the end of the phone!
It may also be that your boyfriend is entitled to home help as he lives alone, there is a good support system in France if you know to ask for it. The best place to start is usually the local Mairie who can tell you what services are available in your commune, also the hospital with have an assistant sociale to whom your boyfriend can talk about such things. Again, he would need to ask and CSF may be able to help here by contacting these people for him if he is too weak.
On the chemo, I have no medical knowledge but I do know that normally chemo is only given when the patient is at a minimum level of fitness and it would NOT be given if the patient had a temperature indicating a possible infection. A CSF member may be able to go with your boyfriend to his appointment to give support and maybe find out more about what is happening. Again, your boyfriend would need to ask for help from CSF as we do not impose on people without their consent!
Do keep posting and we will try to give you what support we can through this Forum too
My first reaction to his lump and temperature is that he has an infection -maybe "only" a mozzy bite for instance but with weakened immunity they come up like boils! Been there and done it. The sweating ditto, probably caused by the infection and I also had it bigtime, changing the sheets every day. Help can be got if he (or someone acting on his behalf, asks for it...it never seems to be handed out...but at least you can usually get it if you ask)
Not sure if he was given a "livret de chemotherapy" when he started his treatment or maybe a piece of paper, but if he was, please get him to read it. It is too easy to catch infections that "healthy" people brush off and I always wore a mask when meeting people at the door or even in the shops. and most important is rest..tell him not to fight it, it gives his body chance to recuperate in it's own way.
hope things improve for him but keep in touch G.
What happened when the last chemo was put back? Has Paul got a new date for it now? I feel he needs to see his oncologist and explain all the problems that he is having. He can ask to talk to him at his next session or, if that date isn't fixed, he should have a phone number he can call. Although, as Goldenoldie said, the side effects of treatment can lead to Paul's type of problems, it is better to be sure.
And don't forget, if you or Paul can talk to the assistante sociale at the hospital (again you need to ask to see this person) they may well be able to help put in place help for Paul at home. That would stop him from being quite so isolated and make sure that he has food and water/drinks available.