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, sorry to hear about your dog. We had a retreiver when I was younger, they are lovley dogs. We have a wee cat who is now 20years old, and has all sorts of ailments, she was supposed to die 2 years ago according to the vet, and I know we'll all be really sad when she does go. take care diane x
Did you happen to see the documentary about Avastin last night on STV, they referred to it being a bowel cancer drug, but am i right in saying that Avastin is used in the states and also down south as BT treatment? The NHS are trying negotiate a price with the Pharmacutrical company to possibly have it available on the NHS. At the moment they are saying that it is too expensive, clinical trials have shown that it can give up to an extra 6 months.
HI Gayle, Sunny Holland? Hmm? That must be another provence - I seem to live in the damp grey bit!
B just started taking the pills today but generally he is very well. He has difficulty swallowing tmz because of the taste of them. He can't now drink tap water without nausea beacuse it reminds him too strongly of the taste- but he is going to take the pills with bubbly water in future to try to hide taste. Not a big complaint in the scheme of thingsI know but days are made up of these small things aren't they?
Holland much the same as Scotland grey wet and windy and very cold, Martin really feels the cold just now our central heating is never off. When he goes outside into the cold he develops sore heads but when we get back indoors they disappear spoke to prof Rampling he said its because of the surgery its known as "icecream head" the area that had surgery when affected by extreme cold can get very sore, Martin wears 2 hats when he goes out but he still gets it, not that he goes out very much anymore he is still very sleepy, he sleeps around 18 - 20 hours a day does B do that? Take care hope your both well.
Help help help my hubby has been so sick the last two days he never stops being sick is this the norm he has been given anti sickness tablets they dont work well at all what can i do???? I read about "icecream head" is that some kind of joke who told you that the man from the icecream shop????
Izzy, It might be an idea to see if you can change the type of nausea pills your hubby is taking. There are different types so another type may suit him better. Many people on the other thread swear by Ondansetron.Â
By the way. it's generally helpful if you fill in your profile with your details and make it visible to everyone, then people can see more easily the background without having to sort through and read your previous mails. Do you have a nurse you can contact about his nausea. It can normally be kept under control I think. Good luck.
Hi Gayle, I read recently that sometimes a metal plate is replaced rather than the original bone. I didn't know that. B certainly feels the cold all over but he always has done so I don't think it's related in his case. He certainly found the operation site sore at first but as his hair grew back around it (He is a long haired guitarist!) it got better over 4-5 months. Right from initial diagnosis, I read in We Talk Brain Tumours, advice from Martyn (I think it was) that what he knew to helped brains heal was sleep and water. I took that advice to heart and from the start B has had 1-2 hours nap almost every day in the afternoon and we have tea a lot! Typically B. gets up about 10 and goes to bed about 23.30 with the 1-2 nap or just rest on the bed in the afternoon. But that's now, 18 months on, during RT he slept much more but gradually it has lessened. But I (thankfully) know that he is very lucky to be feeling so well. I'm waiting to see how his new treatment will effect him.Â
hi Izzy, yes , I think ondansetron seems to be one of the better drugs for nausea. best to call the doc or mac nurse to see if you can get a change of anti sickness drugs, as CH said. hi gayle, no I didn't see the documentary but I have read a bit about avastin - they say there is still no definite proof that it helps in BT but there are trials going on right now, certainly in America I think. we asked about it at the start but were told here was no evidence it worked and it was too expensive anyway! Yes, I have read that in some centres on America it is becoming one of the drugs they offer but it is not widely available here, though I know of one person on the thread a while back whose husband has been given it. It works by stopping the growth of the blood vessels the supply the tumour, I suppose that's why its used in other tumours too apart from brain. Like everything else it is not a cure and has some pretty toxic side effects too. Diane xx
It is great the way your hubby is, glad to hear that he is doing so well, its good t hear someone is doing so well, another friend who i speak to her hubby is also doing so well diagnosed 2 years ago 1 year without any treatment and he may get his driving license back around christmas this is fantastic and gives us all hope.
Hi Diane
Do you get any help from the mac nurses?, as i said during the week we got some bathroom equipt and we were offered some help to take of Martin, but i refused and said id manage myself we only needed the bath equipment, i have been off work longterm sick since Martins diagnosis and i dont want to leave him, but i know i will have to go back to work eventually. I also go the Ayrshire Cancer Support for councillling and lots of other help and they too have said there is other help available ie mac and marie curie nurses but i just want to be with Martin all the time and do it all myself.
hi, still up I see! yes we have a mac nurse, he is very nice and visits occasionally just to get to know us as we really don't need any of his services right now. we were offered help with personal care when hubby got home from hospital but htey didn't turn up the first day. we managed fine with the bath aid anyway so I cancelled them, and things have been fine, - don't get me wrong, if it gets too much for one person to manage later on I will get it restarted. goodnight diane xx
I have been a bit of an imsomniac this week, i think it must be down to worrying about the scan results we get them on tuesday i am so worried Martin is sleeping at least 20 hours a day and is so confused i am just hoping and praying that it is down to the treatment and his exesive energy when he was going to the night clubs everynight, but it is so worrying, maybe i should speak to the mac nurses about the future. goodnight love gayle xx
