My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Hi Lesley Thanks for your kind words. I am glad that the funeral went well I can feel your sadness and it must be so hard.It sounds as if you have a very positive experience of the Hospice and I think the people who choose to work in this area are indeed angels xx Take care Love DianneJx
Dear Julie, I was so so sad to hear your news - thinking of you lots.
Dianne - the Lifeline appeal was great - your family came across really well. You must be so proud of H - and she looked gorgeous in her prom dress! Looking at her on that night you would never have known what she has been through!
Woody - Thankyou for posting abot your dads funeral - I'm glad that it went well.
I'm off for another 6 days camping with my children - and another mum and her children who have never camped before - yikes! What have I let myself in for. So I'll catchup again at the weekend.
thank you for welcoming me, it is sad to be here but I feel like i have already found great support and encouragement just by reading the threads on here.
Diane - I don't know you, but I have read your daughter's story on here - and I watched Lifeline and was in awe of her attitude and spirit. just in case anyone missed it: http://www.bbc.co.uk/iplayer/episode/b00lyxlw/Lifeline_Samantha_Dickson_Brain_Tumour_Trust/ I think it is only on there for a week.
Saw my mum this weekend, you'd hardly know she was ill apart from the fact she is tired.
I'm aware my mum is not fully aware of the prognosis for her illness - she knows it is serious but didn't seem to want to know when the Dr offered her more info - I think she is scared to ask from what she said to me. Is this fairly common? part of me is glad that my mum doesn't know the full horror of this illness, and part of me kind of wants her to realise how precious these last few years (I sincerely hope years, not months - she seems in good health otherwise, so I hope I am right) are, to make the most of them. I guess it doens't hurt for her to have some time not being so aware of her mortality. It also makes me feel bad to know more about her illness than she does, and scared she'll find out by mistake - any advice?
Lesley, good to know your dad's funeral went well, painful as it must have been. Hope you're able to have some time to yourself now, not easy with wee ones I know.
To I dream of Fiji, I think the not wanting to know is probably common, and is just a natural way of the mind protecting itself. If your mum was offerred the chance of more information and declined, then its best to respect that. it does make it hard when you feel you know more than she does. My husband knew the facts about prognosis but from the start and all the way through never really accepted that they applied to him, and that was his way of coping with it. We were never really able to discuss the future and what might happen, but that was the way he wanted it and I would never had tried to change that. In general the medical staff we saw were very sensitive to discussing prognosis and never offered info unsolicited, indeed when asked they will say that its just impossible to predict as there is such a big variability amongst people in how they respond to treatment. I found they would only give facts and figures when asked directly, and some were more willing to do this than others. so I wouldn't worry too much about her finding out by accident. If you are very concerned, you could maybe let any new professionals coming into contact with her know, if possible, but most of them would be guided by your mum and what she is asking at any given point, and that's as it should be I think. take care diane xx
Daisycat - hi and thanks for your reply. I do totally respect my mum's wishes and it is very much her decision, it's just tricky sometimes (I would certainly never dream of telling her). I think she has a pretty fair inckling anyway - she knows its serious, she just doesn't want to hear it as a fact if you know what I mean. like you said the prognosis can be pretty variable (within reason) so there's no need to loose all hope, we have a future together and have to make the most of that. The hospital staff have definately seemed very sensitive and respectful of her wishes. I guess sometimes I feel guilty that a few of my very close friends know and she doesn't - it makes me feel like i'm talking about her private business (as does being on here in some ways.) I have to remind myself that my mum loves me and would never hold it against me for needing to share and ask support of my friends, and those who know are helping to look after me. Thanks again for being kind enough to reply.
Hello I Dream of Fiji, I mostly write on the other thread but just wanted to say that I also felt that talking openly on this site was a betrayal. Especially at first, to cope with that I chose to see it as a purely virtual area and that kept it manageably unreal for me at first. But very soon the other real people who write here became very real to me (several became very special) because they understood when many people I know in real life (whatever that is!) didn't. Because of that sort of feeling, I withheld most information in real life so this site became a sort of reality for me. It's such a fantastic source of good information that I could also see it as educational as well! Try not to feel too guilty about writing here, it only does good.
I have to say i have to agree with CH about the betrayal, my husband and family still don't know that i use this site which i prefer because it means i can talk about alot of things that don't really get discussed with them ( his mum only hears what she wants to ) and i know if they knew i wouldn't be able to discuss things with the wonderful people on this thread freely. It as really helped me to be able to talk on here and sometimes just to have a bit of a rant so please continue to join us. Take care MollieXX
Just popped home for 2 days Martin had docs today and I have my councilling tomorrow, so we are staying at home tonight much to the disappointment of Martin and Martine who would both sell our home and move to the caravan full time, thay have had so much fun over the past 5 weeks only 2 more weeks to go then the schools go back.
Julie, I was very sorry to hear about Stephens passing, he was such a fighter he had so much determination to beat this awful illness but sadly his fight is over and he is now out of pain and in a much better place, lots of love to you thinking of you lots here for you anytime. xxx
Lesley, So glad everything went so well on friday for your dads funeral, my thoughts are with you your mum and the rest of your family, hopefully you will pop on from time to time and let us know how you are and dont forget we still got lots of wine to drink. xxxx
Lesley, glad you got home safetly, it was so nice to meet you both M & M are both asking for you both. Hopefully we will all meet up again soon enjoy the rest of Scotts holidays. xxx
Dot, my friend so nice to hear from you, sorry to hear that Rodger has not been so good, but knowing Rodger he will bounce back he is such a fighter too lots of love to you both. xxxx
Dianne, I missed the programme on sunday night, but just watched it on-line and was truly inspirational to watch Hannah is lovely girl you must be so proud of her. xxx
IDream of FIJI, welcome to the site sorry that you have found yourself here, another family being affected by this horrible illness. My husband is now 14 months from diagnosis and still does not know the prognosis and doesnt wish to know anything, as Diane says our hospital does not tell you anything unless you ask them which is very good in my opinion. xxx
Diane, hope you and the kids are well are you still swimming in Loch Lomond? xxx
CH, hope all is ok with B after his op will catch up with you on facebook. xx
Sallye, Christie, YinYang, SusanW, Susan, Carrie, Joan, Becca, Rona and everyone else thinking of you 1 and all. xxx
Well folks off to make M & M s dinner speak to you all soon.
