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, that was very much the pattern B had I think. We thought that the resaon was the cumulative and long lasting rt effects. At first with rt B was absolutely fine then later on with it he got more and more tired and that went on all during the tmz only time.Â
In that second phase, B used to sleep whenever he fancied it, typically getting up maybe 12-1 after taking the pills and Kytril on an empty stomach and then leaving an hour before eating.
Then a 1-2 hour nap 4-5/6 ish then to bed at 9-10 sometimes later if he felt up to it. We found that it worked better if he slept whenever he felt like it (as long as it didn't affect sleping at night) for that week + a few days then in the last two weeks of the month he had more energy than when he tried to fight the tiredness. Then when he was up he was quite lively.
B also found it made him feel better generally to use the exercise machine we have when he was sleeping so much - just for about 10-15 mins or so and not strenuously, maybe about 4 times a week, but it seemed to get him properly physically tired rather than that chemotherapy tiredness and helped with digestion and that sort of thing.
Everyone's experience is different of course. B could be quite energetic at times during that time but got tired very quickly.
On the subject of not knowing what is going to happen, we heard today that B's GP had died suddenly and unexpectedly. He was under 60 and seemed to be fit as a fidddle. Really you just never know what is going to happen do you?
I hope Martin feels better soon with the antibiotics.Â
Yeah thats good it must just be the tmz thats making Martin so sleepy and reducing his apetite, sleep is good for healing, when he is awake he gets a bit confused about the time and memory not great but apart from that he is relatively well and still has good mobility not great but good and we spend lots of quality time together.
Shame about B's GP it is a good job we dont know whats round the corner, hope you and B are bothe well take care.
Its a cold and frosty morning up here today snow is defo coming later i can feel it in the air. My hubby loves the snow and this time of the year think we might go get our Christmas tree and decorate it today, my hubby just loves that we also still have an open fire backed up with oil heating, but probably get the tree today and some logs and light our open fire tonight just with our tree lights absolute bliss, hopefully the snow will follow on.
Hubby is still eating alot of sweet stuff does that ever stop, he could wear a santa suit with his new found midrift lol, oh well at least he is eating i read from some of your posts that your hubbys are not eating so good try something sweet it certainly works for my hubby.
Gayle i love your picture it just sums up how we are all feeling, hi CH Diane Lesley & Emma hope your loved ones are all doing well.
Izzy - what a lovely picture you paint with open fires and logs - my central heating doesnt quite have the same effect! Hope you got your snow just to complete it all.
Gayle - Love the hugs for hope - how true. Hope Martyn has picked up now.
hope you are having a nice time with your log fire and christmas tree, did your snow come? we have lots of frost and fog but no snow, we too put our christmas decorations up today Martine has been asking all week lots of her friends were doing theres this weekend so i thought why not she has had a hard time lately give her something nice to do, it was hard work all our christmas decorations were in the loft usually Martin gets them but it was my job this year as well as decorating the tree, he loves to do it i am hopeless with the fairy lights but i managed, enloy the rest of your weekend.
Hi Lesley
How is your dad doing hopefully well and also you and the rest of your family, how is the weather in the Capital, its very cold down in Ayrshire, take care.
My husband was diagnoised with a grade 4 glioblastoma on the 5th of November aged 29 and we are both trying to come to terms with this life changing news. This is the first time I have found the courage to visit the website as I have been so worried about what I might read. I have to say reading all your messages has really helped. Having a tough night tonight as it is now two weeks my hubby has been in hospital. I have just got home and being here without him is tough. He is feeling really low and finding it hard and frightening being there. If only I could make it all better!
It has been lovely reading about Christmas trees, decorations and log fires. Something to really look forward to.
I know how you are feeling it is one of the ost difficult things that you have and ever will face, my husband was admitted on monday to a&e and was told that night there was a shadow/tumour but it took him a week to tell us (the night before the bi-opsy). But now we have got to this stage Martin went through a bi-opsy then a debulk the six weeks radio & chemo therapy, now the next stage of chemo 5 days out of 28.
for you its all so fresh and unreal not that things get much easier but you will learn more about this horrible thing through this site and you will meet lots of lovely people who will help you through this awfull situation, here for you any time day or night.
I'm sorry you find yourself here - but you'll find people on these threads very experienced with GBM.
You are bound to feel shocked and disorientated so soon after diagnosis. I certainly remember that as a period of tears, and being on autopilot and being afraid of what doctors might say to us next.
This thread is quite quiet compared to another thread, We Talk Brain Tumours. A lot of people writing on that thread have experience with GBM, you might also want to read or post there. By the way, it’s can also be helpful to others talking to you if you fill in your profile and make it available to everyone so people who reply to you don’t have to page back through to your first mails.Â
Thank you so much for your reply. As this is all so new it is really good to have someone point you in the right direction. I will fill in my profile later today when I get back from the hospital. Once I work out how to do it.
