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.
Just been reading all your news, so sorry so many of you are having such a difficult time thinking of you all, dont have time to reply to all individually but thinking of you one and all, special thoughts to you today Jay, hope you managed to get through the day ok.
Just been reading all your news, so sorry so many of you are having such a difficult time thinking of you all, dont have time to reply to all individually but thinking of you one and all, special thoughts to you today Jay, hope you managed to get through the day ok.
Just been reading all your news, so sorry so many of you are having such a difficult time thinking of you all, dont have time to reply to all individually but thinking of you one and all, special thoughts to you today Jay, hope you managed to get through the day ok.
Ola Gayle - nice to see a quick post from the Med! Emma - Jilly Cooper sending you to sleep - ooer, i thought the saucy Jilly Cooper books mightve had the opposite effect and kept you up!! goodnight all x
Morning all Quick one from me!!! ha ha we all seem to say that!
Lesley - we are already in touch with our local hospice - i did think the same as you in the beginning and panicked like mad - I expected it to be like an old peoples home! BUT its not like that people go in for respite care - for rehab for lots of things - ours is a lovely hospice - bright and cheery - they have a day centre where they hold different events - trinny and suzannah were there a couple of weeks ago! Yes of course people do go there at the end too but Matthew has a nurse from the hospice come out occassionaly to check on him and I go there once a week for a massage, we also have the social worker from there come out and talk to me and will talk to the kids in time too. They are a huge stregnth to me. i spoke to Julie yesterday & I'm sure she wont mind me telling you that I advised her to get in touch with her hospice as every time they have a problem and call the hospital they get an answer phone and no response so she contacted the hospice and hopefully they will be able to help. So dont panic yet!
Anyway need to get kids dressed for school - atmposphere in this house is horrible no matter how hard you try these damn scans always seem to wreck the few days around them! hey ho - speak to you all later xxx
B has been in our local hospice twice now. They assessed him, looked at his medication, he was seen by their physio and they also have welfare officers who can give you all sorts of information about aids, benefits etc.
As Emma said, there's a day centre too. We had hoped that B would go there for one day a week, but I think that would be too much for him now. They run all sorts of activities and if your dad were to go to the centre, the hospice staff could keep and eye on him medically too. It would also give your mum a break and they are also at the end of the phone day or night if you have any questions.
We also have access to counsellors, ministers, an aromatherapist an probably there are other things too that we haven't come across.
As has been said already, the word hospice makes you think of somewhere where once you enter, you never leave! Not so in my experience.
been reading all your posts, looks like we are all having a bad time just now?? I can't get Rob out of bed his morning, think him having seizures everyday since Friday is finally taking it's toll. Sent and e-mail to his oncology nurse yesterday asking for some advice but as yet no reply!
I saw your comments on Hospices and I must say that our Macmillan clinic is like that, open 24hrs, keep a check on medication, alternative therapies for patient and carer and best of all someone to talk to if in trouble, they're a real life line to us.
Better go and see if I can get lazy bones to stir,
I haven't been on here for a long time. Thankfully, life isn't too bad as my husband (GBM 4 diag July 08) is doing well. He has started a rather intensive fitness regime which involves him running then swimming and running again. Its hard to keep track of his whereabouts. I wouldn't say he was exactly "normal" but he is active which is great. I do have a question though. He is about to start his 5th month of chemo. I was wondering what the next step is. What are everyone's experiences? Will be get offered anything? Should we push for something eg, scans, more tmz, a change of chemo or Avastin... There doesn't seem to be any clear road map for this stage so I just wanted to get as much info together so I can start pushing at my next meeting.
I hope that life is not too bad for all of you who are living with this disease. I wish you all well, and I will try and post more regularly. To be honest, I find it all exhausting and often just feel like closing the doors to it all so I don;t have to face reality. I guess this means that I am not around to offer anyone else the support that I am now asking. So I apologise for this and hope you don't hold it against me!
