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 - Thinking of you and keeping my fingers, toes and everything else crossed for you all tomorrow.
Izzy - Hope you hubby continues feeling better and without the sickness. B takes domperidone. He was taking ondanstron, but swapped as it made him constipated.
We saw the consultant today for our reguar weekly meeting. She thought B looked well, but she doesn't see him in the evenings when he gets tired and finds walking really difficult. After he had his RT today the radiographer said that when B comes in for future appointments we should ask the St John's ambulance crew to bring him in on their stretcher (rather than in a wheelchair) to make it easier for them to get him on the table!! I'm not convinced that that means that he is not getting worse.
I'd love to chat to the rest of you, but when I try to go back to earlier pages I loose what I've already written. It's ok when I write this on our PC as I write my post in word, but I'm using B's laptop and he hasn't got word on it yet.
hi Gayle, just wanted to wish you good luck for tomorrow, will be thinking of you and Martin. try not to imagine the worst, we should have all learnt by now not to try to second guess this tmour, but its so hard isn't it. hope you manage to get some sleep.
lesley, infections of any kind can cause or worsen confusion in older people so I guess our men are more prone to this given they already have depleted brain reserves so to speak. I have seen this in patients with dementia many times. but it would be a bit unusual for dysphasia as a symptom on its own to be caused by infection I think - though if the nurse thinks its possible then it must be! As above, you can never predict this thing, can you?
Thanks again for all your good wishes for tomorrow, this is terrible as you all know cant take much more I think I am actually making Martin nervous, I think he can sense the tension in me I cant sit at peace for 10 minutes, think I will try to lie down and see if that helps. Hi Emma did you and your family have a nice holiday at eurodisney how is your husband doing? Hi Diane nice to hear from you hope you and your husband and the kids are all doing well. Hi Carrie the radio/chemo combination can do strange things, Martin still gets a bit tired during the tmz cycles and he also finds walking very strenuous and he gets dizzy at times. Lesley hope your dad is better tomorrow.
Radio was the best course of action for my hubbie it disappeared for months - no chemo has touched the damn thing and we are now at the trial stages. He was shattered when having radio but couldnt sleep so was on sleeping pills - but he managed the chemo as if he was taking vitamin pills - perhaps that showed that it wasnt doing anything? Who knows - everyone i speak to on hear has different stories to tell.
Well we're back from Euro Disney and had a fantastic but freezing time it was -12 over there. Matthews hands kept going numb so lots of trips to the loos to warm them up under the dryers! We all loved it and we were upgraded in the hotel too! so lots of happy memories to keep forever.
Back to reality and at the Marsden today so some goodish news for a change - the trial has reopened the oncologist feels matthew is fit enough for the trial - so we see the trials team again on friday for loads of tests to make sure he is otherwise fit enough to be accepted so keeping everything crossed this is last chance saloon here.
He is good at the moment - I had to up his dex a couple of days before we went as he had bad morning headaches and vomiting so now on 8mg a day - but amazingly still working - although I think his boss would rahter not - apparently its inconvienent for him to be in 1 day and not the next! --- cant type what my response was to that! they are mucking about with his pay too he had 6 days off sick in Dec and they shut down for 2 weeks and they paid him sick pay for the month - not the 1st time its happened so have contacted a soilicitor. Watch this space - am angry enough so will take them on!
A couple of questions for anyone who may be able to help! has anyone experience of hair loss on legs and arms (no I havent waxed them!) his hair is falling out and no one can tell us why???? - he finished tmz about 3 months ago and is only on dex 8mg a day and epilim? also does anyone know about this new trial where is stops the blood supply to the tumour and stops the cancer signals getting to it??? 4 out of 20 people have had a good response to it so anything is worth a try.
Anyway thats all for now -
off to finish bottle of wine - have been signed of work for the next 3 months so i can stay here and keep an eye on everything - dont think i could cope with 30 kids in school at the moment!
take care all
Emma x p.s everything crossed for tomorrow Gayle - let me know how it goes
glad to hear that you had a great holiday shame about the weather, but at least you made lots of nice memories. Also good news about the trial, yeah I was on a teleconference to the state a few weeks ago and the professor leading it was talking of 2 new drugs they are trialing that cuts of blood supply to the tumour Avastin and Zacheema it sounds very promising, let me know how you get on with that I am researching for new drugs and centres that are offering trials at the moment. Mathew is amazing still managing to work fantastic! Enjoy your wine.
Good news tumour is stable possibly even a little shrinkage unsure about that part because of some swelling, what a relief, thank god I think I'll be in bed at 8pm tonight to make up for lost sleep hope you are all doing well too.
Hi Gayle That is fantastic news! really pleased to hear some good news for a change - I'm not suprised your exhausted - its so stressful waiting for results - but really pleased for you both.
Thanks Emma its so nice to breath a sigh of relief, yeah you are right it is stressful waiting on the results, but on this occasion worth the wait. What drug are they using in the trial that Mathew will be in ?
so pleased you and Martin have had good news - what a fantastic relief ! The 'not knowing ' is the worst thing about this business as you end up dreading every little symptom and change thinking it means deterioration - Some days I feel like a nervous wreck just because D develops a twinge - My late mum used to say "Fear brings more pain than the pain it fears" - there's a lot of truth in that
Hope you'll both relax tonight and have a good family evening with your girl - have some fun and sleep well ...!
