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.
Thanks for your reply Gayle. You're right, I don't know what I feel. I tend to be a person who deals with practicalities initially and then gets hit hard with emotions later. As there is really only mum and myself, I feel I have to keep going for her at this moment. Chemo hasn't been mentioned but I suppose we'll know more after we've met and discussed things with her consultant. I've read your profile and looked at your lovely pics and I'll keep you all in my thoughts.
Things do get a little better emotionally after you get time to digest this horrible news, you will find the strength to deal with this god only knows where we get it but we do, you will get lots of help and support from all the lovely people on here, thinking and praying for you and your mother tonight.
so sorry you and your Mum find yourselves in this situation - she sounds a brave woman who's already had to fight battles - It's so unfair -
Can only echo Gayle and her advice - the initial shock and deep distress you feel at diagnosis is awful and I remember just not knowing what to do with myself - I remember David just sitting there so brave and steady and myself falling to pieces - It takes a while to come to terms with it - in fact I don't think you always do, it's not that you go into denial, it's just your whole system can't stay in misery and so you start trying to be positive and look for hope - Really Jampix, everyone is different and the statistics only reflect the average. I think I had to try and learn to accept that 'cure' was impossible but 'survival' wasn't - We all hold up the hope that our loved one might just buck the trend. It does seem like a bad dream, doesn't it and you'll find your mum will have good days and bad and your feelings and hopes will reflect that - Use this site to rant and rail if needs be because everyone here will understand - but you'll also find lots of humour and warm friendship too -
You sound like you and your mum are very precious to each other - try and spend good time together and keep smiling for her - Honestly laughter has helped David and i so much - so have all the moments we've shared since knowing this horrible thing has happened - get all the advice you need for both of you from folks on here - I often think there's a lot more info to be found here than you ever get from the medicos!
I wish, I wish, I wish I could make magic and take this thing out of all our lives - Isn't it funny how you can feel like a child again and make silly wishes ?! Whether it's wishing or praying or whatever, keep your chin up, ask lots of questions and try and stay strong
Thanks for all your kind wishes - it does help doesn't it, to feel others really understand
Emma - been thinking of you and hoping that you and your man are alright - it is difficult to keep battling when you hear news like that - Sometimes we feel so strong but then pow- the fear that we hold back so well just comes flooding out and floors us - You've had to be strong for so long, sometimes you're going to be fragile and your man too, keeping working against the odds - he's very strong but again it's like a long term fatigue, holding it all together I'm sorry he feels so down too - He must have a remarkable will to keep going and that MUST be a good sign for the trial - He's tough and so are you - Keep your peckers up.... Wishing you both so much love and 'grit' for this next stage xxx
Izzy - hope you and your fella are ok - sickness sorted and some sunshine coming out again xxx
Gayle - great to hear you all had a good day out - whooppee! This is a big improvement from Martin just wanting to stay in and watch the box, isn't it? A sign of things improving? Do hope Martin's felt the benefit and he's feeling more settled and you and Martine are getting some calm!! (and Vimto in your case..) xxx (ps is he on the echinacea now?)
Leslie - thanks for you kind words too - yep, it's the mirror thing again - when David's fine, so am I but boy, did i sink like a stone when things started going wrong - Memo to self - Do not cry, be strong etc etc! How's your dad? Hope all is going as well as it can for him xxx
Carrie L - Hope that B's radiotherapy is going ok - you could try some immune boosters to get his blood count up - A good Aloe vera gel, Cat's claw or some Astragalus - could be a help- Anyway hope you're ok xxx
thanks for all your kind thoughts ladies, think we've got a scan this week a month earlier than expected so am full of trepidation but we've just got to get on with it, haven't we??
still sitting having a nice vimto at this late time shall regret it tomorrow, what the heck had a rough week martin and martine sound asleep this is my time! You sound much more like your self hope David feels better. Scans are scary things I cant prtend otherwise I fear the build up, the scan and the result but I will keep you and David and the family in my prayers.........Also Martin is on Echinacea and also manuka honey, any more good advice these have obviousley worked wonders.
I HATE THIS BLOODY DISEASE, sorry not e not been online this past few days hubby has bean to well chemo took its toll again hubby very sick HELP Joan sorryto hear your hubby is unwell he must be bad you never complain things will get bettrer and you know it emma sorry to hear about your hubbys tumour but magic will happen because your hubby is magic gayle glad you had a good day with your family well deserved lesley hope your cold is better for you and your family Jampix sorry you find yourself here I hope you and and your mum are comfortabble any help just ask
Izzy, Hi – I thought I would set out my Jan’s TMZ and tablet routine for you, hope it helps.
· Day before TMZ starts:
o Evening – 1 x Ondansetron
· Each day of TMZ
o Breakfast - 2 x Domperidone; 1 x Dex; 1 x Epilim
o Lunch – 2 x Domperidone
o 3:30 – No food or water for two hours
o 5:30 – 350mg (TMZ dose is arrived at by a BMI calculation) of TMZ + 8floz water; 2 x Domperidone
o 6:30 onwards – Allowed to eat
o Later 1 x Epilim
This routine was arrived at in collusion with the oncologist ad pharmacist. Took until round three of TMZ to get it right though.
On Jan’s first two rounds of TMZ she was sick only for the first night. 1st round she had Domp’ with the TMZ; 2nd round she had Domp’ am, noon and with the TMZ; 3rd round it was the pharmacist who suggested the Ondansetron the night before just to “kick start” the resistance – haven’t looked back since.
Feeling a little under the weather today, had a very late night with my "vimtos" however no regrets as it helped me to relax, luckily Martin and Martine had a nice long lie today as I needed that today, I dont know the last time I slept past 7am well today it was past 10am lol, hope everyone is feeling ok, Jampix hopefully your feeling a little better today.
Thank you to everyone for the empathy. Today really hasn't been a good day for either of us, as I'm sure you know, it's difficult to keep your chin up. Mum & I don't live together (we're about 10 miles apart) so I do tend to worry about her when I'm not there. I called her earlier and I know she'd been crying although she'd never tell me. She did tell me that she's had a headache today but she's taken some paracetamol and it was getting better when I called her later. It's difficult to know whether is the tumour or stress at the moment. l'm back to work tomorrow and although my employers and colleagues are sympathetic, they can't really understand what I'm feeling so I'll just put on brave face and hope that I don't make too many mistakes! Gayle, I might even partake of the odd 'vimto' myself tonight!
Jampix, sorry you find yourself here and to read of your poor mum...GBM is such an un unfair and upredictable disease but this site will truley help along the way, the people on here are a remarkable bunch with advice and chat even though everyone is going through their own difficulties. My dad was diagnosed last august, his is unoperable and also on the parietal lobe, he's not been offered chemo yet. I remember only too well the horror and devastation of the first few months, an absolute roller coaster of emotions (still is but somehow you find a coping mechanism). xx
Gayle - sounds like you had a well-deserved lie in - think you need a few more nights like those!
Joan - Glad to hear your ok again - had me worried!! Let us know how the scan goes. Also, its GOOD to cry sometimes - we went to meet the accountant at my dad's clinic last week, its been lying empty since August, its the one place I hate going near as he loved his job so much and it really was his pride and joy. Everything was exactly the same, towels in the same place, his coffee mug lying - it was so eerie, felt like the marie celeste (not that i was ever on there), anyway, I was trying to be the brave one for my mum and sister and it was me who bloody broke down, just hit home how so very devastating it all is. Felt better, so damn good greet (as we say in scotland was in order!)
Izzy - I see Robin gave you good advice on the tablets...hope it works.
Emma - Good luck for this week too if your at the hospital again.
