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.
did any one watch that programme last night on channel 4 ' the operation' of removing the bt . the surgeon was the one who did my op, i was quite impressed lol.
Lorraine, sorry to here your mum is not doing so well love, lets keep praying for an improvement, the fact that she is fighting off that chest infection is a good sign it does same some time as I said. love to you and your mum and dad and Scott. xxx
Becca, love to you and all your family, hopefully your wee break in Italy shall help you, love to you all. xxx
Diane, hope you and the kids enjoy your break in Malasia, it will be be good for the kids to see their grandparents. Hope you are all ok and getting by and enjoy your wee days out to cowel etc in the meantime. xxx
Lesley, hope all is well with you all in Edinburgh, speak soon I have used all my free allownace on my mobile and have a £50 bill on top lol xxx
Sallye, my husband sailed through the RT/chemo it was a few weeks after it finished when it hit him extreme fatigue he slept round the clock, then when the 6 months tmz came around he also became very tired, now he is amazing 1 year on since diagnosis to look at him you would not know there was anything wrong with him, he never stops up at 5am thats him till midnight and does lots all day long and loves his saturday nights out including dancing all night and karaoke master, long may it continue. xx
Christie, I watched the op last night and found it fascinating. xxx
Hi Christie, Yes we saw the programme on Channel 4. Mr. Grundy also did my husbands op for his GBM. He is such a lovely man. It was strange to see him on telly x x x
hi Sallye, yes, my hubby was Malaysian chinese, but lived in Scotland all his adult life, so an honorary scot with a scottish accent! we love the country, having been a few times now, esp the food, satay, seafood, everything at the pasar malam etc. have never been to Sabah/sarawak but maybe one of these days we'll get there, we tend to just see the grandparents when we go as we can't go every year.
I have a friend request from "Mo" but can't recall who that is or if he or she posts here or elsewhere on the site. sorry Mo, I will happily accept your request if you can open your profile or post here or the WTBT thread and tell me a bit about yourself! thanks
Hi Diane, I hope you don't mind me popping in? I had a similar request from Mo, a month or so ago. Likewise I asked her to open up her profile, but there was no response to that. I did manage to find a couple of posts and decided to accept her as a friend. I have heard nothing from her since. MartynXXXX
I feel like ive not posted for ages but just wanted to come on and say a quick hello (i promise lorraine!).
Lorraine, so sorry to hear of your mum's decline pal...that must be truly heartbreaking for you just now, you'll know when the time is right to take leave from your work. Im back at work 3 days now and rightly or wrongly i must admit to enjoying it...just even to get a bit space and normality for a few days, like you, i feel it helps to give me a wee bit sanity right now. Let me know what time the group is, defo going to try and be there...the Western is only a 5 minute drive from my house actually. hopefully see you soon.
Becca - nice to see you posting love, good to hear your all getting away this weekend...hope you all manage to relax a little and spend time together. The last months will have taken its toll on you all and the space will do you all good. much love to you all x ps hopefully we can all still have that meet up sometime in July or so...
Diane - nice to hear your family are going away too - as you say, will no doubt be a very emotional time. love to you x
Gayle - hope you behaved at the caravan this weekend! love to you and M&M. x
Christie - hope your headaches have improved my wee friend. you sound like you doing so well. x
Susan - yipeeee you managed your balloon trip at last...sounded great! Happy bday to you too!x
Things still on a daily rollercoaster here, my dad is now up to 10mgs of dex. He is still hugely floored, its a big effort to even go to the kitchen just now. I took him to the diabetic clinic last thurs (first time in a wheelchair) and he now has to have two injections of insulin a day by a nurse (they come in morning and night to administer blood thinning agents anyway). We managed to get him out for tea to a wee fish restaurant on sunday and it was a nightmare..after which he said he'll never go out again. His hands were shaking, he could hardly walk as he was so tired, his nose was bleeding too, and he really finds it difficult to understand what people say nowadays, never mind have a conversation. All in all, not the best, a big deterioration...keep hoping for an improvment ...but it never comes.
Love to all - Julie, Carrie, Emma, Eileen, Rona, Jo EVERYONE out there, i cant go further back to read all the names again or il lose all my writing, which is extremely annoying!!!. xx
Becca sounds like a great idea to get away and Italy a great choice.
Lorraine & Lesley sorry to hear things not going well.
Gayle I love hearing how great Martin is doing! Long may it continue : )
Diane thinking of you.
Christie nice to hear from you. How are you feeling? Still very tired?? Sounds like an interesting program, maybe I can catch it on the internet....
Sallye sounds like you're all having a hard time too. When you're mum hallucinated etc with dex was it a much higher dose? My dad too had terrible problems on the high dose dex in hospital but now on the 2mg is fine (from a hallucination point of view that is). I hope she starts to pick up soon. Like I've said before we didn't have any dramatic improvements post radiotherapy as the effects seem to last for a bit and the continuing temodal seems to wipe dad out too.
Dad has finally agreed that some kind of home help would be a good idea, so he is now awaiting an assessment from the social worker & Occupational therapist. I'm relieved about this. He's struggling to cope on his own. We have decided to move back to the UK sooner than we initially planned, so hope to be back at the end of July. I'm very happy about this decision.
hellooo yes thanks my headaches have basically gone again, must of been a dex thing and the tiredness is gettin better, ive gone in the opposit direction and cant sleep properly lol so thats making the days a bit more of a struggle only having a few hours a night. Going in tomo to have blood test and to get the 380 tzm, hope this round goes ok too :) xxxxxxx looooooove to everyone
Lorraine, hope things are looking a little better for your mum, love to you all. xx
Lesley, sorry to read about your dad, this is a nightmare of a disease, one hell of a rollercoaster ride with so many ups and downs, I hope things are better today, me misbehave, think you must have me mixed up with someone else lol. xxx
Rona, glad that your coming home sooner I bet you are very much relieved about this and also that your dad is accepting help too what a weight off your mind. xxx
Christie, good luck for the next round of tmz. xx
Diane, you are making me hungry with all that talk of lovely food, love to you and the kids. xx
Emma, hope you and the girls are doing well speak soon. xxx
Becca, love to you and the family. xxx
Carrie, hope you are doing well with the new car and enjoying it. xx
Jay, hope florida is treating you good!! xx
Julie, hope Stephen is better. xx
Joan, how are things not heard from you in a while. xx
Izzy, Eileen and everyone else love to you all, I am off now to make our dinner then off to bed I am finally making up for all the sleepless nights and I could win a sleepathon without any trouble.
Porbably one of the saddest posts I have ever had to make but my darling Mum is no longer eating as she can't swallow now, she will be kept at home beside us, I am really struggling today to keep it all together but I must try.
Mum my angel I love you with all my heart and thanks for the last 33 years even though they have not been enough!
