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originally posted by: woodwardjnr
I made a thread about 2 years ago about giving up treatment for my brain tumour, well I stuck with it for another 18 months spending most of /015 in hospital. I had two more brain surgeries and a course of radiotherapy. I made it long enough to see my niece born, which was the happiest day of my life, she's a little stunner and brought so much joy to my family. However in April I started to grow a large lump on the side of my head it seems the tumour I had which was a glioblastoma has mutated into a glio sarcoma. Which is like the gbm but worse in that it can metastasise around the body, hence the lump on the head. I had it removed in April and it returned in 2 weeks. So I was back in hospital last week, but my surgeon said even if he got all of the tumour out there would always be a few cells left which would grow back in a few weeks, so he wanted to pass it back to oncology. Problem is it's such a rare tumour that there is no designated chemo. They usually treat it like the gbm that I've had since 2007. Now the chemo no longer works I've had it so many times. So I'm back home now, just trying to make sure I'm as pain free as possible. I haven't given up, but realise I've been lucky to survive a grade 4 brain tumour for so long, it was only a matter of time until the inevitable. It's located in the eloquent area of the brain which controls speech and motor function. I've already noticed a significant weakness in my hand and foot, but no other recogniseable symptoms. I've been in this situation a few times now including a brain hemorrhage in 2014. I've kind of got used to the disappointment and fear. I'm just making sure I'm in as little pain as possible and as comfortable as I can get. I've found my meditation has helped a lot over the years, but there's only so much it can help with. I've had so much support from members of ats. I won't name names you know who you are. It really has been quite touching, never thought I would have developed such close relationships via ats and Facebook messenger. I don't know how long I've got, but seeing as there's no treatment availability I don't think I'll have long. The tumour is so rare that it makes up a tiny proportion of brain tumours, so not much research has been done. It's in the brain so couldn't really spread to a worse region of the brain. I'm not in pain yet and I don't wNt to go to a hospice. So am going to try and manage pain best as I can through support from local hospice and local Drs who've said they will make sure I don't suffer any pain. It's so hard talkin about it, so I don't expect any one to know what to say. I find it hard enough talking to close friends and family. No words seem to come out or sound right. I will keep fighting to the bitter end and intend to meet my death in as concious a state as possible. You only get one opportunity to experience it. Whether that will be possible who knows. I'm gonna stay on ats while I still can, so sorry if I'm a bit narky with some people or don't take your threads as seriously as you want me too, but we are all a mixed bunch on ats going through our own personal struggles.
Look after your health and make the most of your lives while you can, follow your dreams, enjoy your families they will always be there for you and have proved to be the most important thing in my life. and don't let anyone hold you back. If you can walk and talk you can achieve anything you want. I could state more cliches, but I imagine I've used up my quota for ats. No need to respond I just wanted to get it off my chest, rather than derail others threads sorry lysergic.
originally posted by: reeferman
a reply to: woodwardjnr
I have trigeminal neuralgia. Aka suicide disease. I have a tegratol prescription but cbds keep me atypical & manageable.
Your story is heartbreaking..
All I can suggest is Rick Simpson Oil.
originally posted by: woodwardjnr
a reply to: mahatche
Eat all the unhealthy food you can get your hands on.
Now that's the advice I can follow, I'm just a bit off my food at the moment