I feel like this most days - two weeks until my next MRI - I had two breakthrough seizures last week ....is my mind playing tricks on me? GOOD LUCK - CYBER HUGS, I hope all will be well, Nicole ... View more

Hi Joanna, Sending you a cyber hug - hang in there! Nicole ... View more

Hi Jill, I took a while to reply to your post - it really struck a chord with me. I think you are an amazing partner to your husband and I am sure that in his moments of clarity he would be so grateful that he knows that he is being taken care of right now and that he knows that his boys are being taken care of now and I am sure he has no doubt that you will be strong and courageous and bring them up to be fine young men. I know that this doesnt give you much peace right now, or help your grieving process for the changes that you already see in him for the man that he was and the man that he still is. I agree with Sangreeta - enjoy this time, if possible. My dad (who is still alive at 60, but has suffered two major strokes in the last 11 years) has absolutely no ability to self censor and my mother and myself and my siblings have all gone through (albeit a very long) grieving process for the man that he was and went through and exahustive process of monitoring his behaviour to 'save face' with family /friends/random people on the street - after 11 years we are all just over it and realise that it is other people's problem and just leave him to it - leaving the apologies and explainations on;y if they are truly warranted - does make for some truly wicked stories though :D Given my situation, and I in no means wish to compare my own situation to your situation, in that I have more time up my sleeve right now (depending on which dr I talk to - although I do plan to stick round until at least my 2yr olds 21st - I saw it in a dream the other night), I only could wish that I had such a supportive partner as yourself if the worst was to happen - because right now I am absolutely terrified that I would be dropped off at a nursing home and my daughter's upbringing? I cant even begin to think about it. Last night I had a mild seizure at work and began to slur words etc and my 6ft 6 (unemployed) husband was rung to come and get me - refused to get out of the car to help me - it was my fault for working so much, and then started mimicking my speech on the way home....... You should be so proud of what you are doing for your husband and your boys, Nicole ... View more

Congratulations on the new additions and welome distraction to the family - there is something fantastic about a newborn in the family - and an excuse to buy baby pressies for!!! Nicole ... View more

Hi Robert, I think you have already been through so much with your heart, you may already be prepared for what is ahead - I remember being in intensive care after brain surgery with all the heart patients thinking that the poor people seemed to be in so much pain! You obviously have great strength. I suppose I have learnt from this site not to buy into the whole - must stay positive all the time scenario - and if things arent going well its because I am not positive enough' -everyone has good days and bad days - I suppose, this site helps us through the bad days, and gives us strength to take one day at a time - we are all human after all. I certainly agree with Jill in taking a notepad and pen and a support person, especially for the initial consultations and have your questions you wanted answered written down before you go in, so you dont forget and make sure that you fully understand everything before leaving the room. Good luck for the upcoming week, Nicole ... View more

Hi Emily, Sorry for the late reply, I only just found your blog today - I think it is a common theme - not matter your age. I am 33 (I have a brain tumour like you), and I have found except for maybe one or two friends (but then again, they are mostly those people who are overseas or a live a long way away (so not a day to day friend) people who I thought were friends have deserted me - probably wouldnt come near me with a forty foot barge pole! LOL!!! I think 18 is a tough age - you tend to move in different directions from your old friends at that age - people go to uni or work, and you have probably had to grow up really quickly and face things that most people wouldnt even dream about for the next 50 years or so - this frightens people - makes them face their own mortality - dont take it on board! This is their problem - not yours! The people that do stick round are your true friends - it sounds like your mum is really there for you! It may sound really condescending, but have you tried Canteen - I had a flatmate who at 25 (she had cancer as a teenager), was still doing really cool stuff with them - and met her future husband through them. Now that your treatment has finished you will feel strong enough in the coming months to get out there - dont put too much pressure on yourself though - If you are on similar epilepsy type drugs to me etc I couldnt imagine walking into a bar or a club with all the flashing lights and doof doof music (OMG THAT SOUNDS SOOOO OLD!!) - I would be having my own little rave (without any none precription drug type help) LOL !!! Nicole ... View more

Hope you take time out and feel better soon. Nicole ... View more

Hi Jill, Sorry, it is me with the patients and the business (sorry for the trivial blog at a time like this!) My thoughts are with you. I hope you can find some time to 'just be' at the moment. I know my mother when I was having surgery and treatment (and her own business, my business and two year old and all the load I placed on her ) as well as my dad who has had a couple of strokes, ended up dumping me and the two year old for a few days and taking a little break in a motel in the same town with some sleeping tablets for a few days and felt a lot better for it and more able to cope. I know this may not be possible with two small boys, or not even what you want to do with your husband - but maybe a facial or just a small break. I have found the Queensland cancer council relaxation technique cd helpful at the 2am-3am anxiety attacks/insomnia episodes - it all sounds a bit trite I know, and probably doesnt help much at all right now, but worth a try. I am sure you little boy still had a great Birthday - no matter what. I feel so bad for posting a really trivial blog right now, about stuff that doesnt really matter in the long run. Nicole ... View more

Hi Andrea, I hope you find this site offers you a place to offload and share - it certainly has helped me to do this. Encourage your daughter to do the same. I also have a stage two/three brain tumour with epilepsy and have found very little support out there (besides the cancer council) for brain tumours in particular and then the whole epilepsy loss of independance issues to boot. Cancer can be a horribly isolating disease, despite so many people suffering from it and very difficult to talk about to those closest to you - I feel so guilty myself for what I have put my own family through in the last 12 months and what the future may hold. A forum like this helps to get those feelings out and may help to open the gateway for discussion between you and your daughter. It is just not fair!! After what you and your family have already suffered. Don't blame yourself - I also had severe pneumonia only three months before diagnosis and was missed on CT (also for an aggressive but benign facial and sinus tumour as well as the brain tumour) and I myself thought I was having a nervous breakdown and was just stressed leading up to diagnosis - Itook lots of neurofen and panadol - from what I have read and from talking to others - this is very common with brain tumour diagnosis - especially Grade 3/4. Please keep blogging and talking - it is a great release valve! Nicole ... View more

Thanks Jo, Don't Apologise, actually when I read your blog, I felt like crying and thought well, at least I am not the only one!! I just feel like a punching bag, that everyone continues on with their own little lives and they are of the opinion that I should owe them something because they of offered me a sympathetic poor you glance or thought 12 months ago - stuff em, onwards and upwards I say!' Good luck to you and Rob for 2010, I am personally pushing the delete button on 2009, Nicole ... View more