My previous posts have been based upon my experience of, the diagnosis, de-bulking and after treatment, of an oligoglioma grade 2 brain tumour between that occured in 1996. The content of those previous posts, whilst true to events, were described in a almost fictionalized way; easy to read and easy to write. However, they are not quite 'real' and do not do justice, to the strength, courage and positivity of the many of people that I have been in touch with over the few years. In America they call themselves 'Brain Tumour Buddies.' As me, I'll stick to 'friends.'
I will now take a break, an interlude; a time to eat the pop-corn and suck on a popsicle, before handing you over to 'real' dialogue between the brain tumour buddies. Beware, there is nothing fictional here; it is pure fact.
Please note the Words Highlighted in Yellow are there for a purpose.
Yesterday 3.00pm
Survivor #1 :
‘Don’t know what to say to that. Yes, I try to remain positive but the thing casts a big black shadow over everything. Hate it!I wish I was there to help you. Honestly!’
Survivor #2 :
‘I wish you were here too. I am now experiencing one of the side effects of radiation - hypothyroidism…will be on medication for the rest of my life is what was told to me. But if that’s the worst of it, not a problem. You and I have experienced quite a bit with this "thing". I don't think of a re-growth however according to the ABTA conference I attended, in most cases 95% re-growth for this type of tumor- which quite honestly sucks. I have changed my thinking to always remain positive - without a hint of doubt. I just can't believe how much my life has changed or the adjustments I have made. But still glad to be here and see my kids accomplish and achieve their goals. Have a wonderful day and glad you’re doing better!’
Today 3 hours ago
Survivor #1 :
‘Yes it sucks...I want to do things to; I want to see my kids grow up and up and on and on. What personally frustrates me is that any long term plans for my writing will suddenly be scuppered and ended. So, as it always seems to be a race against time...really, hate the thought of that. What also saddens me more is that I will probably never have another relationship with anyone. The last one I had has just recently finished. She was a good and understanding person the best; but I was moody and vile at times, she said that it was an 'emotional roller coaster,' which is a very good description of what this thing does.
Anyway, have to enjoy the good days. We are having an Indian Summer here, 23 degrees, very warm. Its great and I love it.
Do you have an oligodendroglioma too, I forget?’
Survivor #2 :
‘Ditto you on a lot you mentioned. Yes I have a combined Oligo and Astro - they all are considered "mixed gliomas" from what I heard at the ABTA. You have to keep on writing that is truly your medicine and talent. The meds can cause you to mood swing - I know when my dad was dying I was quite angry at several family members and showed it - yes the meds! My long term plans were going to be taking an ex-pat position oversees with my company - can't do that now. I can no longer scuba dive or ski - concerts are now few in between - due to strobe lights - puts me in seizure mode. But I am working full time 3 days a week from home and two in the office and have been seizure free for 1.5 yr but I am heavily medicated - so the occasional glass of wine can get me high - quickly - at least that I enjoy. At one time I felt like I was in a race against time - getting my kids settled, re-arranging my life insurance - but I am learned to slow down and smell the roses so to speak. It takes time and patience. Be patient with yourself and keep writing - I look forward to reading more from you. Be positive, I am sending you the vibes from across the pond!’
