We Talk Brain Tumours

Morning all, bit nippy out there today but blue skies & winter sun, so can't complain about the weather!  My memory has been shockingly bad the last week or so, Thursday I took my camera to the karate club and found I had left the memory card in my computer.  Sunday morning we had a karate grading, managed to take the memory card this time.....but left the battery at home on charge.  Thank goodness my husband keeps a pocket camera in his sports bag!  Trouble is I am a keen photographer and use a DSLR, I am used to clicking shoot and the camera works instantly, but these pocket thingies (even 12 megapixel ones) have a lot of shutter lag, which is not good when you are taking action shots of people doing karate.  At least the final ones of the newly graded students and sensei's are not too bad.  I was very cross with myself even though I laughed along with everyone else about it.  Today I wrote my shopping list for Tesco's and gawd knows how, I managed to lose it halfway round the store!

Just finding it very frustrating, I was so organised before Buttercup joined my life and even though she is hibernating (or at least I hope she is, will find out in February) she has left a lasting legacy on my day to day life.  

Denise, I can understand your relief that husband had just set himself on fire and not had a recurrence ..... I guess only us with a tumour or caring for someone or known someone with one, would truly understand that feeling.

Martyn, I usually get email alerts to private messages and there is a clickable link to the message, that's how I get to them cos they are bloomin hard to find on here I know that for sure!!!!!!!!!

I have written half of my Christmas Cards out, Lara & I put the tree up yesterday and today I put a window garland up (yes I stood on a chair while I was home alone, Mr B my brain surgeon would tell me off but hey rules are made to be broken - come to think of it, my hubby will probably go mad at me when he gets home), the house is beginning to look a lot like Christmas!!!!!!

Hope everyone else is as good as they can be considering their circumstances.  Love & Strength to all who want or need it xxx

Debs

Whilst I can understand you blaming buttercup for forgetfullness I am afraid to say that as a non sufferer, I do all of the above solely because I am a busy mum and rarely find the shopping list I wrote, remember the batteries for the camera, remember to pick my son up from school..... dont be too hard on yourself you are doing great x

I was really pleased that your wife is doing great and is witnessing so many milestones. This gives hope to me as my partner was diagnosed with the same in mid September. He had the tumour in both sides and had surgery on the right side only and today he had his 1st of 6 radiotherapy sessions. Im told to take one day at a time which isn't easy as im a planner. Im hoping that his strength will get him through and he will exceed his prognosis of 6 - 12 months. I wish I could help to lift his strength and motivation but he's not talking much and so now I feel 'ive no choice but to let him deal with it in his own way. I don't know whether I should be trying to be force a positive attitude (although I feel im setting myself up for a fall) or just carry on as though things are normal.

People keep telling me im amazing at how im coping and that im doing really well - Don't know what that means really as I'm a mum of 2 young children and have to carry on. I'd just like my partner to get to a point where he can take the attitude that we need to enjoy whatever time we have as a family.

May you, your wife and family have the best Christmas ever and many more happy years together.

Regards.

Aquarius.  All you can do is your best, but that will be good enough.  You'll be given the offer of help, so take as much of it as you can.

With Ali, we didn't discuss the prognosis, but just concentrated on getting over each hurdle at a time and lived each day as it came.  We just tried to carry on as normally as we could, and moved around her disability.  We made no attempt to make her live live to the fullest, but concentrated on making it as comfortable and loving as possible.

I feel as though we succeeded in most cases.

I can only say that my wife said she was going to fight the beast in her head, no ops due to position of tumour, and as i said she is now without any treatments since May 2010. She does religios;y take a glass of tart cherry juice every day (look it up on google) even if its got a placebo effect its doing brilliantly.

Thank you Hil26 for sharing this with us. Your post has given me some hope and comfort.

My son's consultant wasn't as exact in his prognosis, just said he could have anything from a couple of weeks to a very optimistic couple of years (That was mid oct) I think we should ignore the prognosis. Dan will live as long as this damn thing allows him too and he's certainly not ready to depart this world for quite some time yet.

Anne

I've started easing my way back into work again today.  It's going ok, but I'll be taking some holiday leave toward the end of the month and get back into things properly at the start of the new year.

I spoke with the HR director regarding the income protection insurance that I'd claimed for a few months ago.  It turns out that after sitting on the claim for a couple of months, they refused the claim on the grounds that they felt I was fit to be able to work, even though my GP had signed me off on grounds of stress & distress of caring for my terminally ill wife.  After a "going ballistic" phone call from the HR director and getting the backup of the broker, they finally relented and awarded six months payment as a "gesture of goodwill" and refusing to admit they made the wrong decision.

The firm in question, is UNUM

You might remember this advert on the TV from a while ago.

http://www.youtube.com/watch?v=v8zPl6rHRJw

Needless to say, they'll no longer be supplying insurance for our company.

Pete - Happy to hear that you have managed a return a work witha reasonably happing ending on the income protection.

My wife has had her ups and downs but at the moment is doing brilliantly - please see earlier posts. Earlier this year (maytime) a chest infection nearly did for her which is when I finished work - couldn't promise them that I would be available and was ringing them on the morning to say I couldn't work. The company (small business) was abolutely fantastic and caring.

Now she is back on her feet and I am doing some part time work - won't be going full time anytime soon - but that's my decision - I actually like the not working full time.

regards

Dave

Hello everyone

I joined the community a few weeks ago and have been reading what you are all going through, I joined the journey on the 31st Oct when my dear dad (62) had a scan and was told that he had a tumour on the brain. For the three weeks prior to this dad was slightly forgetful but that was it no weakness no speech problems just forgetful and the fact that he ran his own restaurant business with mum for 33 years and he was always on the ball or even ahead of it worried mum. she kept taking him every week to our gp but they thought it may have been the fact he hadnt taken his diabetes or blood pressure medication for a few weeks (as he forgot to pick up his prescription). His sister was also diagnosed with terminal cancer a few weeks prior so the dr also thought it could be slight depression. With mums persistance another gp advised mum to take dad to a&e for a scan and it was here that our journey began.

1 week later a biopsy was arranged and it was confirmed that dad had a GBM IV in the thalamus incurable and inoperable. Ever since hearing the news dad has just deteriorated, all we have been offtered is 2 weeks of radiotherapy hopefully to start on friday so he is done by christmas. After the biopsy was taken off the steroids as his blood sugars were sky high - 5 days later we were back at a&e there was swelling around the brain and really thought we were going to loose him the but he hung in there and after a week in hospital is back home a little weaker but hes still with us.

All dad wants to do is sleep he doesnt take part in conversations would rather just sit and listen he very rarely smiles let alone laughs, to look at dad you'd never think anything was wrong he looks to well but its not dad looking back, he was so social always laughing joking or telling someone off in the retaurant. I just want him back.

My mum is caring for him she is so amazing being so positive for him and for us but can see she is breaking inside, I want to be there with her all the time but have 2 little boys at home feel so torn.

Thinking of you all.

at last can post from my notepad - welcome to all new passengers giving this post a try so a virtual vino and if accepted will post in mo Julie xx