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.
Gayle and Martin, Hang on in there. It's a really difficult thing to get off the Dex. Martin may also be really stressed about losing so much weight recently, I'm sure that worries him as much as it does you. I think you just need to seek reassurance from GP, or MacMillan nurse etc that all this makes sense. I think it does, but coming off the Dex is really difficult for many people.
Things still pretty crap here, I went to see my gp today who says I am close to a breakdown, she says no tablets in the world shall help we all know this folks!! She has made a double appt for Martin for monday hopefully this will help him, he might open up to the doc and she can help him to understand the effects he has just now are that of coming off the dex and nothing else, lets hope he opens up. Well its a lovely day up here, we are going to the caravan this might cheer him up this will make me feel better, tomorrow we are going to largs in a limo with bubbly and to be honest could see it far enough, take care one and all, I think of all you lovely people at this time.
Gayle, I'm so sorry to read that Martin isn't doing well. I'm glad you have a double appointment on Monday as it sound slike he needs to see a Dr. I'm not sure coming off dex would explain weight loss?? I could be wrong though as it would change the appetite I suppose. Do they think that causes the pains too. How hard for you. Will be thinking of you this weekend ,big hugs xxx
Lorraine hope you're ok. Thinking of you & your mum xx
Hope you have a good time at the caravan Gayle the weight loss is excessive but appetite can often be suppressed after stopping steroids it can take a while to pick up. H cant have her chemo Monday as her platelets are only 27 but in one way it gives her another week off and she has her prom next week. Hope everyone else has a good weekend- maybe we should organize a big get together as there seems to be little support available locally I think it would really be helpful to speak to others who have been through or are going through what we are all experiencing. Love to all DianneJ
Feeling tiny bit more positive today, they have said the scan will still go ahead next week so long as dad doesn't get any worse, I have everything crossed. I actually spoke to him on the phone today too, couldn't believe I called and he was awake, wasn't hugely chatty but never really was. Hoping to get there at the weekend.
Dad suffered alot of weight loss on his legs, they were told it was due to the steroids destroying the muscles not sure if it comes back once you are off them though,....
Well folks I thought a fornight ago I had wrote one of the saddest posts ever about my Mum and she kinda proved me worng and rallied round a little but not now sadly she is no longer eating and she is unable to swallow her medication, we have had to get her epilim for the seizures now in liquid format the gp coming out to assess her tomorrow as she might get a driver installed,
I have made the decision tonite to give up work as physically and mentally I am not able for it, I want to spend the rest of her life with her, this is so dam hard and I just hate it they give dogs an injection to sleep why not humans as Mum won't get no better its sadder seeing her go thru this than what it will be when she is at peace.
I just love her so much folks that I am a complete mess but hopefully somehow I will get the strength like the last 2 years have given me to get thru it, as usual my husband has been amazing and he is a rock to me and my Dad.
I will keep you all posted of how things are going.
Sorry folks I don't want to start naming each of you incase I forget someone so I will just say love to you all.
to gayle hope tommorrow goes well and that you had a good time at the caravan and in the limo :) jennifer glad things are looking more positive take care everyone love christie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Dear Lorraine Thinking of you as you face the coming days. How right you are to give up work to be with your mum - i took time out to be with my husband and will never ever regret it. May you find the strength that you need. Sue x
