My tumour is now untreatable -- RIP our beloved friend: August 11, 2016 --

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.

Keep on truckin buddy, and don't be afraid of anything, especially your mortality. Just make the best of every day and follow your gut.
If you ever feel lonely and need someone to talk to, add me on Facebook. The name's Akadian.
Cheers, and don't be down.
Every day's a gift.

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.

OH! And might want to look into dandelion oil, cannabis oil, and oregano oil! I've heard good things about the first one in particular.

originally posted by: LAkadian

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.

OH! And might want to look into dandelion oil, cannabis oil, and oregano oil! I've heard good things about the first one in particular.

AHCC supplement also has spectacular immune boosting effects on malformed cell growth in higher doses. It cured HPV in about half the patients they gave it to, and certain HPV strains are a known cause of cervical and orophayringeal cancers. Its ability to boost regulation in cell formation may be of interest. It's a compound found in Shiitake mushrooms, and you can buy it online. Dosage info from the study can also be found online. Would recommend doubling it, if it was me anyway, and maybe eat a lot of mushrooms too on top of it.

Hi Woody! Been thinking about you and wondering how you were doing.

a reply to: Night Star

Hi Woodwardjnr

We are thinking of you and hope you are doing OK.

Shiloh

a reply to: woodwardjnr

Hiya fella, just checking in to say hope you're doing as best as could be expected. Saw you in another thread, smiled at your impartiality and thought about you.

I think of ATS like my local pub. There are regulars, noisy and quiet ones, people who pop in occasionally, strangers from out of town, pricks, decent people, people you chat at the bar with, groups which hold loud discussions, people you play the odd game of pool against, allsorts.
ATS is very similar, just digitally, and some folk are braver than if they were face to face lol.

For the record, all interactions we've had in threads we've ever had I meant what I said when I typed it. No bull# with me man, and I'm grateful for your reasoned compassionate outlook, you have influenced my perspective in many online interactions and made me think again.

On that digital communication note I have actually made a very good friend on ATS in the last few months. First internet contact I've ever allowed direct to my mobile aside from say buying a car off Gumtree or whatever lol. It was perfect timing.
A few weeks ago one of my closest south Devon 'brothers' died in sudden and tragic circumstances, and I have been broken. Not only did we party together we worked together so my sense of loss is deep. My entire social circle is grieving the same and feeling their own loss, so having someone 'out of the bubble' who feels no loss but instead basic selfless compassion and kind words has been the most amazing thing for me. I've struggled to function since he died yet my ATS friend has been there to take my thoughts elsewhere. Beautiful, and if you told me that someone unconnected thousands of miles away could be such a gift to my life last year I probably would have laughed.

I'm rambling now, but I think the point I'm trying to make is that you are like the quiet guy at the pub, we play the rare game of pool, exchange opinions stood at the bar, you are a regular I trust and like, even though we disagree with some things, I like the way you share your thoughts over a pint.

When you go I will be sad. A different kind of sadness to what I'm experiencing at the moment, but genuine sadness nonetheless, and from a digital only relationship. It will be a first for me.

Love your way man x

Cheers mate sorry to hear about your loss, I imagine the grieving process will take its time as everything does in life.im not too bad, just in a permanent state of chronic tiredness, it's impossible to do much apart from ats and watch football, so could be worse. It just reminds me of the World Cup when I was in rehab, with nurses trying to get me to sit with the other patients in the day room. I hated it, because I didn't feel the same. Most of the patients were in a much worse state and proper geriatrics and quite a few nutters in their it was a mental injuries ward, so it slightly resembled an old peoples home and mad house from one flew over the cuckoos nest. Horrible experience, so I won't dwell. Think I'm just feeling a bit tired, but didn't get my afternoon sleep today my friend was over and wanted to talk about stuff, I just wanted to go to sleep. That's why I'm not great with visitors, they want conversation. I want sleep not the best combination.

a reply to: woodwardjnr

your day room experience sounds a bit like ATS, but a bit less personal. (but no less crazy folks)
Keep smiling.

a reply to: woodwardjnr

You are the one facing this so you are in control. If we were mates in real life I'd say the same to you, if you wanna put your head down, be alone, get twatted or whatever then just tell your mates that in your usual calm, friendly, and diplomatic style.

Friends will and should accede to whatever it is you need right now.
It really is all about you now if you were a south Devon 'brother' of mine. You wanna crash, crash, I'll nip off and send me a text if you want anything from the shop lol. That's how it should be.

a reply to: woodwardjnr

Sorry to butt in.

If anything good can be said in all this, you've brought out the sentimental side of GoS.

You've also brought together a community who tend to be at each other's throats in other threads. Small potatoes and not much of a reward eh? Still, it's something and quite special too.

There's a lot of love and hope beaming in your direction from all quarters. It might not amount to much and yet it's drawn the best out of people and your friend, Alan Watts, would salute you. People wouldn't care as much if you weren't a good bloke.

originally posted by: Kandinsky
If anything good can be said in all this, you've brought out the sentimental side of GoS.

Nope, I'm still as crotchety as ever shaking my cane at the pesky kids on my lawn.

I forgot to close my laptop and someone at the party posted pretending it was me

a reply to: woodwardjnr

So good to see you Woody! When I went through chemo when I had my cancer that's all I wanted to do was sleep. As one woman described it, it was a profound tiredness. LOl I get being tired and needing rest. Next time, just tell your friend or whoever you're with, you're sorry, but need to sleep right now. They should understand.


Much love and light!

a reply to: grainofsand


I'm so sorry for your loss!

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.

I am sorry to hear all of this. The only thing I can offer by way of help is to try to gain peace of mind. When one has peace of mind, one has mental clarity and for the most part, good health. Over the years, I have come to the determination that as long as people have "faith" people have some kind of, or any kind of peace of mind. Peace of mind can also be looked at as being in a highly meditative mind state, where both mind and body can benefit. A person in a meditative state has complete control over their bodily functions, or primarily, their own "breathing"!!

My independent research has taken me down all sorts of avenues, but all of my research has concluded one primary correlation, ill health is almost always caused by a lack of proper C02/02 correlation combination. If your stressed out, you don't have peace of mind, henceforth, you are over breathing. Most, if not all types of cancer are caused by an improper balance of C02/02 combination. Too much 02 creates a "breeding ground", so to speak, for tumors or cancers of the like. Even diabetes has been coined stemming from improper C02/02 combinations. Furthermore, most people with diabetes do not eat properly, do not exercise, and do not get enough sleep. With proper breathing, this can corrects ones C02 imbalances, which then "helps" to control, or even cure" disease. Henceforth, too much 02 is to blame.

Research "buteyko breathing" and anything else of the like. What almost all research will conclude is that "over breathing" is to blame for almost all of societies diseases. If you fix your faith, you help fix your breathing. You fix your breathing, then you help your body "fix" itself, and help "reverse" the disease that it already has. Then any supplements and/or medication one may be taking will have an "X" fold difference in ones overall health. I am no doctor, but what I have noticed with my own health is that "breathing" is to blame for all my health problems. Furthermore, "tackling" incorrect breathing is no easy task, and what I have found is that the more "I want it", or the more I"will it" so to speak, the more driven I am to satisfactorily progress forward with correcting my improper breathing, and the better my own health becomes. Thank-you for listening, don't give up, and hopefully this may somehow find its way to you and can help you.

I Haven't Forgot About You....... Stopping By To Say Hi. Hi... *waves frantically... before Salute*

Since my last post.... ATSians have upped my star count. Guilty pleasure....
I Now wish I had the 650 I started with when we met.

How is today coming along.... ??? Pinocchio reporting for duty.

Get Reliv and take a bunch of it! I mean it.

a reply to: woodwardjnr

A little treat for our sweet...

a reply to: woodwardjnr

Hi woodwardjnr - just thought I'd tippytoe on in and tuck your blankets nice and comfy. I hope that there is a fresh and delightful breeze coming in the window to caress your face as you drift off tonight. Sweet dreams and I'll be sitting in the rocking chair spending time watching over you and just being quiet. Quiet time is nice, especially when you know you don't have to say anything and can just drift in and out and know that you are cherished.

Grainofsand - what a beautiful post and my condolences on your loss. You are heavy in my thoughts as well.

a reply to: ccseagull


That was so beautiful! I'd like to sit in the other rocking chair and join you.

a reply to: Night Star

Night Star, our girl of always being there for people, always uplifting, always being so giving - you are gold. I have one word for you: absolutely! xox