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.
How is Martin? Has he had some counselling? Have you been offered any? Personality changes hey! Luckily mine has regressed to childhood. Pengu is a favourite at the moment! Loves silly jokes (supplied by family via text messages) Puzzles everywhere, but does it really matter - answer No! When they have been "de bulked" - it is as though they suffer some brain damage. You have to read up yourself a bit, google is a god send! Because the professionals say its a "rare" cancer (LOL) you end up more informed than the nurses and GP's because they need to have a widespread knowledge of all diseases and we become "specialists" in our field!!! Best wishes Lin
How are you and your husband? Martin wont go to councilling as he thinks there is nothing wrong with him, he does not think he has had p personality change or suffering any memory loss. He is blaming me for everything because i try to make him see that, he is totally ignoring and our 8 year old daughter, he is now living with his daughter from a previous marriage telling everyone that i have thrown him out, he is hurting both my daughter and i very much, he is now refusing to see our 8 years old daughter, i hate this bloody disease, i have now faced up to the fact that he might never come home. I do go to councilling through Ayrshire cancer support and i find it very very helpfull. Does your husbands personality change from time to time or does he just stay the same? I feel as if Martin is just so selfish. Like you i have researshed this disease on the net and now feel as though i am an expert, hope you are ok.
Dearest Gayle I have posted you a "Private" reply..hope you receive it and can get some comfort?? Lucikly for me, my husband, of only 3 months, came with no previous "baggage". He became aggressive before they removed the tumour. Now I just have another "boy" to look after!!! He had a seizure on Sunday, which left him without bladder control. Perhaps, all things considered, it is a greater responsibility to be a carer, which Martins previous child will have to adopt the role of, in months to come. I only hope that she is prepared? Its a cruel disease that robs everyone of someone that they care for.... Take care - OK? LINDA
Hi everyone Does anyone else have any experience of their loved ones getting a metalic taste in their mouth, its something that i kept meaning to ask the consultant about, my partner was getting this for several months before being diagnosed and still from time to time. love gaylexx
I am down the line of GBM from December 2007 and my hubbie is on his last dose of temodal - very weary and bored and tired - although he was using a power saw a week ago - remembered the noise and thought oops! He was okay though. Both living out our very early retirement I reckon - him 56 and me 53. 17 year old son, with a very disabling condition but as bright as you and I - v difficult for him - he wil outlive us both I reckon!! My husband knew he was ill in the head, not my words!!, and the first neuro refused a scan. Yes,we know it wouldn't have changed diagnosis or prognosis - but he wouldn,t have suffered the fit - and maybe not caught shingles part way through radiotherapy - still suffering from neuralgia in eye area, WHAT IF will sometimes be the question. Good love to all of you
hi balaton, just wanted to say hello, and that you are not alone in your journey with this awful disease. If you read my profile you will see that our journeys have been very similar, my hubby too diagnosed dec 07. he too had the shingles, but it was after the radiotherapy. Power sawing sounds alarming! look after yourself
just to say hello to you, its such a horrible disease, its so awful to hear from new people every day knowing that more and more families are having to deal with this horrible thing, you will find plenty of help and support on these threads.
hello to all, re metal taste in mouth... whan i was pregnant dad (sufferer) thought i was going mad whan i was complaing of metal tasting in my mouth!now hopwever dad has told me that hes "mad" cause he is now having that taste...hes found that sucking a strong mint before taking his chemo tablet helps with softening the tang,but alas know known cure for getting gone compleatly.
Hi Sarah just found out that the metalic taste, is actually coming from the tumour pressing against the taste or pituritry gland, hence the taste, my partner was convinced it was fluid leaking from the tumour that was causing this awful taste, he swears he can feel the fluid running out the tumour and into his mouth. love gayle xx
Terry had a strange taste.. It used to come in waves and he said it was like herbs... I almost knew when it was going to happen and he would stop eating ,... just sit for a while, then carry on.. No explantion really but a warning it can happen.
