How did it all pan out?? ... View more

Hi Raech,   Sorry for the delay, I haven't been on here for a while.   I had my operation in June 2013 and went through 6 weeks of radiotheray followed by 6 months of chemo'. The radio was a breeze with no side affects and the chemo was relatively easy bar one or two rough nights each round. Toward the end my blood count dropped like a stone and I had to have a couple of transfusions (top ups) to get me through.   I lost a bit of weight but only 5 - 6 kgs over the course of treatment (have since found this!).   I was offered all sorts of alternative and additional herbal remedies but at the end of the day, I think our Doctors know whats best and I hve been well since. I did have a seizure whilst driving in May last year but this has been treated with anti-seizure meds and I havent had any other problems.   Importantly, I am here, well and I don;t think too much about it anymore. I started my own business in March last year and I put myself under a fair bit (lot) of daily stress working 12 hour plus 7 days a week....   My prognosis has gone from an initial 5 years to 12 years plus now which is way over the horizon for me.   I think the key to it all is keep busy, positive and stay happy!   I hope this has helped you in your journey.           ... View more

Thanks for the feedback, we have decided to have a little chat with our girls on the weekend and armed with this information, we (my wife and I) feel better prepared and armed from what we have read over the past few days and reading your replies. Thank you all again. ... View more

Hi there! While my husband did not have gbm, he had a rare cancer of the peritoneum......and you describe our lives exactly. I wanted him to be able to run around with our kids, work, surf, play guitar REALLY LOUD, but cancer robbed him and us of all of these things. Be kind to yourself. Have you looked in to in home family day care? In the last six months of my husband's disease, we had an amazing lady who came and looked after the kids for me two afternoons a week so I could have a break, cook dinner without constant interruption, bath the kids, ride my bike.......and we qualified for special child care benefit, as my husband was unable to care for the children. It is so worth it. Also, the local Palliative support team at the hospital have been so helpful and supportive too. Helpful with medication, treatment options, explaining stuff, a shoulder to cry on that is not the family........ My husband's suffering ended in February this year, and our five year old and seven year old are really hurting.....but we will absolutely get through this....stronger than before and closer than before. Some days are ally hard, and it is five minutes at a time......but other days life runs almost to plan and you have to cherish those moments. Good luck on your journey......I've been there and know where you are at! PA ... View more

So sorry for your loss, it is a cruel way for them to go and for family to watch, 6 months after Gary has gone and it doesn't get any easier, take it slow in the grieving process, do it in your own time, hugs Lorraine. ... View more

Hi Therese, In reading your blog I feel a huge lump in my stomach and fear that inhales me. I can't imagine your pain and desperation. And, I know I have this all ahead of me. People say, "be strong". I say, cry if you need to, vent, scream, just let it! I'm thinking of you and your husband I hope it doesn't take too long. GBM is the cruelest cancer, even though my husband is 3.5 years in this journey, I still find it hard to believe it's happening to us. Take care Jo ... View more

Oh Emma, I don't know you, but am so sorry for your loss. I too believe in the power of signs - how beautiful that your husband reached out to you in that way. Best wishes for you. ... View more

Hi Jan, Don't know your number to send a txt, or have I been really absent minded which wouldn't surprise. xx ... View more

Interesting what crops up from time to time. Am I right in recalling a conversation about these metaphors earlier? i too, also hope that when my time comes (as it inevitably will)it will be while I still hvae some control over what is happening to me. Yes, Sailor, we won't hvae succombed to losing the battle, just to the inevitable perhaps. S ... View more

Hi to my cc friends, this roller-coaster ride is really doing my head in. Firstly before I forget..Terese you do have the right phone number but I often unplug it from the wall when hubby is sleeping then forget to put it back in so on your end it just rings but we don't hear...sorry would love to chat, will try and keep it plugged in as he is sleeping less anyway atm. He is home from hospital after the burns incident and I truly believed he would not make it home. Wow the amazement of IV Dex...his wounds are dressed 3 daily and healing. He can carry out a conversation pretty well where on the day he went to hospital he could only mutter a couple of words which made no sense. We have a highset house so have made a bed downstairs for him to make life easier but feel like I have to sleep with one eye open. After taking his symptoms to a new level...leaving the house, getting burnt, etc etc it has scared the hell out of me and I freak out everytime he goes outside. I honestly thought we were in our last weeks with him , now apart from the very poor short term memory he is getting around himself etc. Can't keep up with the food intake (probs due to the increase in dex) and he gets quite aggressive if he does have a good meal all the time. I hate cooking and as the kids are now on holidays, they graze all day and then when I go to cook dinner, no one is hungry but him. They did an MRI whilst in hospital...same old story, radiation effects but the area the said is much larger than usual. The docs have decided to recommence his chemo as we had only had the first 2 months of it this time around, so that will begin next wednesday and we have another MRI in January. I am so weary of it all I just don't want to get out of bed. Things are going wrong around the house and he used to be the best handy man on earth. Now I am having to try and deal with all these chores, the car is way overdue being serviced and on and on it goes....this has been a long GBM struggle and it is all consuming and my patience is paper thin. I am jumping down the kids throats for everything, and every year for the past 3 I have said next christmas will be a good one, and something goes down just before hand to make me want it over..I should be grateful he is still alive, but then it is not him anymore and this lingering life is pure shit. Who knows what tomorrow will bring, can't make any elaborate plans. If you hadn't I am HATING life at present. At least the kids are home now and if I have to duck out someone can stay to keep watch, but not really rair on them. He did want to come to the shops the other day but an absolute nightmare, however, if I go out and not let him come he accuses me of keeping him hostage..have to remind him it is far better than hospital which is his other option. Still haven't found his car keys and his car is not in an optimal place...he will never remember what he did with them..all these little things don't seem like a big deal, but add them up and they become very frustrating. You cannot put a padlock on everything but occasionally when he is up to helping out, will put washing away. Kids have been looking for clothes etc..all found stuffed in the corner of his cupboard...aaarrghhhh..cancer is never nice but when it eats away at your loved ones brain...life begins to be a living hell and as everyone on here has said, all GBM sufferers seem to have quite different journeys and how long they go on for is the crystal ball I would love to look into. Everyone out there , take care and if anyone wants to come to Brissy and kick in some walls, I would be just great at it right now I know . xx ... View more