I am new to this having just been diagnosed with Anaplastic WHO grade 3 brain tumour (removed). I am a young 51 year old with a fantastic, supportive wife and two wonderful daughters but feeling a little lonely on entering uncharted waters with this diagnosis and prognosis.
I feel left out with my prognosis and very unsure where to look for information on what's in store. I suppose this is a normal reaction but I feel like I cant burden my immediate family too much and from what I have learnt from "Dr Google" the news to discuss with them is not too positive.
My issue/s are what, who and when to tell my family and as I haven't, I really cant talk to any friends about it less the word gets back to my kids before I have had a chance to site down and go through the probable outcome.
I guess I feel a little vulnerable and lonely and a little scared of what lies ahead. If anyone out there has or is going through this I would love to hear (and share) your stories.
It is a shitty hand you have been dealt. My family has been through your journey over the last 3 years or so. My advice to you is to be totally honest with your children, they have a hard journey to travel with you and honesty I believe is the only way to go. Feel free to read my posts if you like.
Fight the hardest you can but also enjoy every moment you have as you go.
I appreciate the response and I will talk to them soon. I think I just need to try to understand what it is I actually have as I will need to be confident in answering any questions they no doubt will have, after all I am their Dad!
I hope your own journey hasn't been lonely and has worked out the best you can hope for....
I appreciate your response, I'm obviously not the only one going through this.
I agree with Exhausted. We have been honest with our girls as they also needed to be prepared for what lays ahead, chemo-radiation, Mri's. There is no easy way to tell them dads got cancer. I hate that we had to tell them that he has brain cancer, but I can only imagine how difficult these last 19months would have been to shelter them from this. Even harder was recently telling them that new tumours are inoperable, but we could not have told them.
Our girls also have lost their dog to cancer last year and their nanie has bowel cancer. Get support for them, CanTeen are great for teens, but for younger there isn't much out there.
Our girls have a great role model in their dad, fighting hard and staing positive.
the cancer council has a booklet on talking to kids about cancer - i guess it's the hard news that's tricky, but it has has useful ideas about 'how to put it' to kids of different ages.
if you phone them they will post one out.
My dad was gbm (iv) and I needed to let my 5 year old know what was going on. She knows that when I'm having a big cry it's because I feel sad about grandpa.
sorry for your diagnosis - may you stay strong and well
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.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.