I feel a little selfish posting this when I read so many stories of people going through terrible amounts of suffering but I need someone to unload onto and this seems to be the only place I can find to do it. My story is that my eldest daughter was diagnosed with a stage three brain tumor last July. She had been suffering from headaches for about 9 months to a year before and I, being me (the you'll be right kind) kept just saying to her "take some panadol". Of course this didn't help. She had a CT scan done in March which came back normal (it was done in b/w, not contrast and the tumor was missed) then she had a fit on a Sunday morning in July and was unconscious. The ambulance took her to hospital where she came to about 30 minutes later. A CT in the emergency ward showed the tumor. Since then she has had surgery, radiotherapy and chemo. She has two more weeks of follow up chemo to go and then we start the wait to see if it returns. She has been amazing, she suffers from varying amounts of anxiety and depression at times which is to be expected but no matter how bad she is feeling she won't let her friends and family (except me, thank goodness) know how bad it is for her because she doesn't want to upset them. She has told me that she doesn't want the chemo to end because while she is having it the cancer really can't grow back. My problem is that I can't appear to be in any way not positive to her for her sake but I am terrified of losing her. Looking up her prognosis on the internet is only depressing (but who can trust the internet I say) and her doctors won't give us anything except "the longer you go without anything showing up on the MRI the better", which from what I have read here is pretty standard. She is also a member of this site so she may just read this. I have already lost a child seven years ago (he drowned in a dam at my parents house on fathers day when he was 18 months old) and now we have to deal with this, I want to say "ITS NOT FAIR!!" but after reading other peoples stories, life hasn't been fair to any of us! I know that I will cope, lets face it, you have too but really sometimes I wonder where that strength will come from. Anyway, enough! Like I said at the start, I needed to unload and don't have anyone to talk to. My family have been wonderful but my dad is a worrier to point of anxiety attacks so I can't talk to parents, friends are great too but all have there own problems too deal with (real, not imagined) so I don't want to burden them. That leaves me you guys, you lucky things! I just want to finish with - I love my three girls so much and can't imagine life without any of them. I lost my boy, surely thats enough! Thanks for listening.
5 Comments
Mrs_Elton
Contributor
Hi Andrea, I am sorry to read of your story, both that of your daughter's condition and the loss of your precious son. Life certainly hasn't been fair for you. I am glad that you chose to 'unload' by posting on the site, I have found it always makes a difference to me as soon as I 'share' my feelings with the very caring and understanding people who contribute here. Use the site as often as you need to, it really does make a difference in taking away the isolation that you may be feeling. My husband has a secondary tumour on the brain, his tumour is inoperable, he has just had 10 sessions of full brain radiation treatment, completed on xmas eve. I wish you and your daughter, (and the rest of the family) strength and courage to face each challenge. Kind regards, Jill.
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Merkel
Contributor
Hi Andrea, We all need to unload, that's what this site is all about. Support from others who have been there. I'm sorry for loss of your son, & what your going through with your daughter. Were here to support you and your daughter. Take care, Merkel
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WishingStar
Contributor
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
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Jules2
Super Contributor
Hi Andrea Glad you have found somewhere to unload. I also am sorry to read of your loss and also your daughters diagnosis. It really doesnt matter whether you are a cancer sufferer or a relative or friend, everyone is affected - although just a little differently. The Cancer Council does have people that you can talk to if you ever feel the need. I know for my mothr to see me once again go through this ordeal has been terribly hard on her. She has said that she feels so helpless this time as she is a lot older than when i was first diagnosed. This site is great for being able to read about others experiences and know that we are not alone in our thoughts and then also providing us with an avenue to put our thoughts down and out of our heads. It certainly helps me and i hope it has helped you. Take care Julie
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Andrea
Occasional Contributor
Thanks ladies, your right, I did feel much better after writing last night and slept alot better too. We will get through this together, one step at a time, its what we all have to do isn't it. I'm very glad I have found this site, I've been a member for a while (but didn't think I had anything worth putting forward) and just reading various peoples stories and advice has at times made me cry but the thing is, it makes me realise that we are not the only ones going through this (I know, its been said thousands of times before, but I think that until you say it yourself you don't really believe it) and many, many of the things I have read must be far harder to deal with than what we have but the common thread is that we are all fighting a disgusting disease and we all need each other in order to do it. Jill, I was very sad to read about your husbands plight, hopefully the radiation will make a difference. My fingers are crossed. Thank you all for your support, my very best wishes go to all of you in your various battles. Andrea
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