Help Needed..

Practical information to support and help people cope

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Ginojeanetti
Posts: 6
Joined: Sat Aug 24, 2013 4:35 pm

Help Needed..

Postby Ginojeanetti » Sat Aug 24, 2013 4:55 pm

Hi there,
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

francis
Posts: 48
Joined: Sun Jan 24, 2010 8:34 pm

Re: Help Needed..

Postby francis » Sat Aug 24, 2013 10:52 pm

Hello

Can you please tell us where in France your boyfriend lives?

There are English speaking groups all over France, and there will certainly be some help forthcoming!

Bon courage!

pennycsf
Site Admin
Posts: 607
Joined: Sun Jan 24, 2010 7:19 pm

Re: Help Needed..

Postby pennycsf » Sat Aug 24, 2013 11:14 pm

Hello Ginojeanetti
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.

Penny

goldenoldie
Posts: 193
Joined: Thu Feb 11, 2010 3:11 pm

Re: Help Needed..

Postby goldenoldie » Sun Aug 25, 2013 6:30 pm

Hi there..sorry to read about your boyfriend. I have Lymphoma and have gone through the chemo process (and more), so know the after effects only too well. If I can help in anyway please post a message and I will get back straight away.
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 :)

Ginojeanetti
Posts: 6
Joined: Sat Aug 24, 2013 4:35 pm

Re: Help Needed..

Postby Ginojeanetti » Thu Aug 29, 2013 6:54 pm

Oh thankyou so much......you can't believe what a relief it was when I signed on and saw your messages....I felt quite overwhelmed. My boyfriend lives in Les Champs Geraux which is near Dinan, Brittany. He has been to the hospital today for another lot of chemo but was refused......apparently it would be too dangerous to give it to him at the moment (although I'm not sure why and nor is he really) ......we are guessing it's because he has a lump on his neck causing a problem and his temperature is all over the place. They have given him several different types of tablets to take and now he is home again.....I spoke to him half an hour ago and he sounded awful.....apparently he is drenching his bed clothes with sweat every couple of hours.....I was wondering if there would be people that could come round and help him change a bed etc? Thankyou again for your replies......it is really appreciated x

pennycsf
Site Admin
Posts: 607
Joined: Sun Jan 24, 2010 7:19 pm

Re: Help Needed..

Postby pennycsf » Fri Aug 30, 2013 7:41 am

Hello Ginojjeanetti,

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 :)

Penny

goldenoldie
Posts: 193
Joined: Thu Feb 11, 2010 3:11 pm

Re: Help Needed..

Postby goldenoldie » Fri Aug 30, 2013 8:41 am

Hi there again SO pleased you have come back to us. I agree with everything Penny has said in her email...taking someone with you is so helpful as -in your weakened state - you do miss odd important bits of the conversation. I took Penny with me a couple of times.
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.

Ginojeanetti
Posts: 6
Joined: Sat Aug 24, 2013 4:35 pm

Re: Help Needed..

Postby Ginojeanetti » Fri Aug 30, 2013 9:24 am

Thankyou so much.........your messages are REALLY appreciated.....I have relayed everything to him and just the realization that he is not on his own with this has helped already. Thanks again and speak to you soon :) x

Ginojeanetti
Posts: 6
Joined: Sat Aug 24, 2013 4:35 pm

Re: Help Needed..

Postby Ginojeanetti » Wed Sep 04, 2013 10:22 am

Hi again.......just in need of some more support........Paul is feeling so bad at the moment.....he sounds terrible on the phone.........constantly in bed with pain in belly, possibly constipation as hasn't 'been' for ages and freezing cold when out of bed.....temperature more or less normal though.....just feel really bad for him............am going to see him for the weekend in 9 days and hoping to cheer him up a bit......any advice as to what I can say/do would be great and any advice for him at present would be good too...........x

pennycsf
Site Admin
Posts: 607
Joined: Sun Jan 24, 2010 7:19 pm

Re: Help Needed..

Postby pennycsf » Wed Sep 04, 2013 6:39 pm

Oh dear, I am sorry, you must feel very stressed being so far away, but good that you can talk regularly.

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.

Penny


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