We Talk Brain Tumours

Hello to you all.

I have posted on here a couple of times back when my Dad was taken ill very suddenly and got some great advice and support.  I confess that I tend to be more of a "lurker" than a poster as I feel that I would be intruding.

That aside, you do seem to be really helpful and supportive, so I do have a question to ask.

My Dad has 2 grade 4 multiforme gliomas, diagnosed last June, surgery, r/t and chemo all completed.  He hit a really bad patch last September when he was taken into a hospice and we were advised that he probably only had 2 weeks left to live.  However, it seems that he "just" had a really bad reaction to the r/t and probably a bleed of some sort.

He was in a hospice/palliative care unit from Sept to Jan 2010 and is now mobile again but has speech difficulties and can't read or write any longer.

My mother is his carer and what I was wondering was whether anybody knew of any type of buddying system where she could talk to others who are in similar situations.  Due to eyesight problems she cannot use a PC, otherwise this would be a great forum for her - so was thinking more of a phone buddying approach.

She is currently finding it really difficult as he is such a changed man who is very angry with the world (but who could blame him!) and not terribly rational.  Although she is having some counselling, I think that she would really benefit from just being able to talk to someone who really understands the situation - she is in Middlesex if that makes any material difference!!

Thanks for your time for reading and any suggestions gratefully received.

Samantha

Hi Samantha,
It's a very hard situation you are in. I'm sure you are a great support for your Mother.I'm pleased you find this forum helpful.

I Googled a bit and found:
http://www.btbuddies.org.uk/support/117-telephone-helplines.html
one, Andrea'a Gift, for example, has some telephone support.

I know there are also some meetings that some people on here attend but I can't remember the name of the group - but someone will be along soon who knows what those groups are called.

You might also ask at the neurology department of the local hospital and a local hospice as they often have volunteers or groups who will offer someone to talk to.

Sorry, not sure if this will help much but it may be a start. I'm sure some of the others will have more suggestions.

Best wishes,
CHxx

CH,

Thank you so much for your reply and for the good information - I have emailed Andrea's Gift so will see where that gets us.

I have already spoken to the family support team at Charing X where Dad is having his treatment, but the challenge is that my parents live just outside Harrow and most of their activities are targetted within London itself.

I think that Mum is just getting so down and exhausted that she can't see the wood for the trees, so to speak.  She also had cancer 3 years ago (boy, are we a lucky family!!) and although in good health now, it has left her quite an introverted person who is not very good at asking for help.

Kind regards

Samantha

Dear Martyn - Susan - Fee - Caroline - Yin&Yang - Mandy - Jenny - Sue - Dimmy - Turkishgirl - Jean - Ann - Bina - Debs - Martin - Sally - Peabs - Ali - DianneJ - Nicky - Mummaggie - Sharon & IdreamofFiji

Thank you all so much for your kind messages greatly appreciated.

Bank holidays and absent vicars do not make for speedy proceedings but have now managed to make arrangements for Friday 11th June. Jan will be cremated early in the morning and her ashes placed in the local churhces "Labyrinth" after a rememberance service late afternoon. James and Emily have both approved the Labyrinth, which has a beautiful setting with a lit engraved glass sculpture in the middle - much better than "compost corner" where the sun doesn't shine. We all think that Jan would have approved too.

Love and best wishes to all, with hopes for an easy weekend - Robin

Good to hear you have things organised Robin.
Don't know what Labyrinth you mean but it sounds beautiful.

When I was very young and rather thoughtless I didn't realise the importance of ceremonies and rituals but now, I'm not so young (but still sometimes thoughtless) I now know that it's so important to do what the people closest feel is right.
I'm sure the day will be a great tribute and celebration of Jan's life.

Hope you are managing to get some quiet time to yourself as well as looking after the monsters.
xx

Hello  Samantha

I'm a bit of a lurker rather than poster....however had to reply to your post. My MIL is being treated at Charing Cross and they have 'the magpie centre' next to it which is for support and help for patients and carers, however like yourself we  live in MIddlesex (Brent) so its too far to travel. 'Luckily' for us the local hospice - St. Lukes  in Kenton is fab, and they have so far provided invaluable support. My MIL goes there once a week to the day care and I think they are very good supporting carers too. I'm going to meet the 'team' on Monday to go through what help and services are available to my MIL and family. So far if we've had questions or just want to talk to someone they have been very good.

Not sure which hospice your dad went to - but maybe they may be able to help your mum, as carers week is coming up they have organised a day for families to visit - if your local hospice does this then it may be good for your mum to go if she can as she'd hopefully meet other carers and professionals.

HTH and I've not misunderstood your post.

Bina

pm me if you'd like any more info.

Bina,

Thanks for your reply.

Dad went into the Michael Sobell hospice at Mount Vernon when he was really ill last year and has now (just this week) returned for the "men only" day that they do once a week.  He has signed up to see the counsellor next week which hopefully will start to help him - he has never really talked to anyone about how he feels about his illness so he is angry/depressed a lot of the time which is obviously affecting how he is at home and how easy it is for my mum to help him.

I have now received quite a positive email from the telephone buddy system that Crazy Horse referred me to so will be pursuing that for my mum.

Maybe we should compare notes on Charing X - does your Mum have the mad, but wonderful, Dr Glaser as her oncologist?  They have talked to us about Maggies as a source of help, but Dad's mobility is limited and my Mum doesn't drive so it is not really an option at the moment.

Not sure how to "pm" - so if we want to swap notes, you might have to point me in the right direction!

Samantha

Hi Samantha

Hopefully you're dad chatting to someone will help him. It must be so difficult for our loved ones - for my mum to be totally independant, then now needing help doing basic tasks. Mum is stubborn and will want to do things - which I can understand, however I'm quite protective and don't want to see her get hurt. Being the daughter-in-law things I say are not always taken the way it would be if her daughters said it, but I'd do anything to make sure she is safe and as well as possible.

Hope the phone buddy system helps your mum, it must be so lonely for her, esp if she doesn't have someone to talk to about things...at least we can come on her and I have other sites which I 'chat' on and I've found that they've helped me a lot, even if it is just to say things and get them out rather than worry or let things get out of hand.

Mum has Dr Glaser to - I've not met him (not been able to go to apt as I've 3 children youngest 16months to look after aswell), but from what I hear he seems approachable and polite and straightforward.

St. Lukes are good, I'm going on Monday to see what we can get sorted for mum and I'm also doing the 9mile midnight walk for them to help with fundraising next Friday....looking forward to the walk - hope I can stay awake for it...lol probably sleep walk it!

Will attempt to pm you lol should be a laugh...prob end up doing something to wipe my details off the site!

Take care

 Bina

Hi all. Not sure how many of you may have seen this on the news yesterday..but this new treatment seems quite promising

http://itn.co.uk/cd7d54c038ed7512327d99de0df4cd40.html

Thinking of you always.

Love PEABS XXXX

I have seen this before. Here is a list of places that are accepting new trial patients, and eligibility - basically between 4 and 7 weeks post radiotherapy ending. Unfortunately none in the UK, but 3 in France.

http://clinicaltrials.gov/ct2/show/study/NCT00916409?show_locs=Y#locn