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Hi all, I have been recently diagnosed with a grade 2/3 oligoastrocytoma. I had the bulk of it removed on the 16th April and now am awaiting radiotherapy, unfortunately my op wound has got infected so seem to live at the hospital at the moment :(
I have been trying to research this type of tumour and have to say that everything I have read so far is quite bleak, I am only 25 and am now getting pretty scared that I might die soon, I would just like to talk to people who may have the same type of tumour and get a bit of support. I have 2 very young children and am so worried that I might not get to see them grow up.
Donna - Hi
May I suggest that you try to find one or both of the following:
Forum - "We Talk Brain Tumours"
Group - "Glioblastoma Why Why Why"
Both of these are very popular and populated with a large number of people with experience and advice. There is certainly another young mum in the same position as you, although I am ashamed to say I have forgotten her name.
Best wishes - Robin
I was so sorry to learn of your recent diagnosis and subsequent infection. If you would like to talk things through with someone in confidence, please know you can call me or my colleague Roz on 0845 130 9733 or you could email us at firstname.lastname@example.org. We provide a listening ear and may be able to put you in touch with other people we support who have the same tumour type.
Not every story is bleak; you might be interested to read about Hannah Jones, who is currently raising funds for brain tumour research as well as attending school and having routine scans for her tumour. She has a page on our website (http://braintumourtrust.co.uk/helping-us/groups/hannah-louise-jones-fund/) and also a fundraising group whose stories might be of interest (http://hannahbananabraintumour.co.uk/about-us/).
With best wishes to you,
How are you doing now? I have recently received the same diagnosis as you - grade 2-3 oligoastrocytoma. I had 85% of it removed on 6th September and am now recovering at home. I have to wait till December for an MRI scan to see if/ what further treatment I might need. I am 26 years old and have just celebrated my first wedding anniversary so I can understand your feelings. If you just want to chat, rant please get in touch, I feel talking helps me and it would be good to talk to someone in a similar position to myself.
Hi Sam, thanks very much for your message! I'm doing much better now thanks, I finished my 6 weeks of radiotherapy on the 7th Sep so am just waiting to have a scan next month to see how well it's worked but I'm trying to stay positive although there's always bad days! I find talking helpful too so fell free to message me whenever you like, it's always nice to find people who know exactly how you are feeling as although everyone else tries, they can never really understand! How are you doing?
It's so good to hear you are doing well, it's too easy to hear bad stories and these seem to stick in your head! I am finding waking up with a positive mental attitude des help, although some days this is much easier said than done! A lot of people keep telling me this and I would like to see how happy they are with a similar condition, so yes it is great to find someone who has experienced the same thing. It was 4 weeks ago yesterday that I came home from hosiptal and I am doing so much now compared to then - i can cook, do the washing/ ironing and get my own tablets. This might not sound like much but I feel like it is a real achievement. I even went shopping yesterday and was out for 4 hours, whereas two weeks ago an hour was too much. Little things/ steps like that are really helping me. I think the challenge now is keeping strong mentally as no matter how hard you try the dark thoughts creep in from time to time but just hearing your story has really helped. I am nervous about my scan in December as I will know nothing till then, just wish I had a bit more control over the whole situation it's so frustrating! My medication is being reduced slowly which is helping me start to feel more like myself again and that's another boost although I do have mood swings and can be very snappy at family/ friends when all they are trying to do is help, then the guilt I feel after is unbearable. I hope you will keep in touch, would be good to share our stories!
It's great to hear that you are doing well after leaving hospital, I think I was pretty lucky in that I wasn't too badly affected so I was able to quite a lot straight away, I just got tired a bit quicker so usually needed an afternoon nap! (Although I often had one of those before anyway as I was knackered after looking after the kids!!) Have you been offered radiotherapy? My consultant said that he wanted me to have it to give me the best chance possible and my oncology consultant has also offered me chemo but I have turned that down, they've said I can have it in the future if needed and it wont make any difference if I have it now or then so I think I'd just like a break from all the treatment!! I felt great when my medication started to be reduced too, I'm off steroids now and am just taking a daily phenytoin in case of fits though I haven't had any since my initial 3 which made us discover the tumour so I'd really love to be off them too! I would definitely like to keep in touch as I haven't met anyone my age yet who is going through this, it's so nice to finally find someone! If you're on facebook feel free to add me, I'm Donna Adams, hopefully there's not too many of us on there and you can find me! My pic is of my little boy on a bob the builder ride xx
I've added you on facebook!! Your little boy is so cute! I haven't been offered any treatment as yet, my doctors want to see how things look when I go for my scan in December, fingers crossed there will be no change and I won't need any treatment. Maybe I'm worrying too much, but at the MDT meeting after my surgery and biopsy they all seemed really positive about my recovery and felt there was no immediate need for further treatment, although I do at times feel like I've been left out on a limb now :/ December seems like a long way away to get any further news on how things are and I really hope we get some good news as I would hate to ruin Christmas, I feel my family have been through enough now. I'm also still taking daily anti-seizure although not phenytoin as I developed an allergic reaction to it in hospital - it gave me a rash - and I have to stay on this until my scan. I am on steroids one every other day from today and will stop them next Wednesday which I am looking forward to :)
Speak soon xx
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