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Post by Jon the Stripe on May 4, 2017 17:54:33 GMT
A long serving loyal Gashead Jools Pirog needs an operation which the NHS won't fund. Also known by many as Kingswood Polak on the forums, Jools has been an FFS Club member since we started and many of us have met him at our Sponsored Matches. So, if you can spare a little i'm sure it would be appreciated. Here's the link: linkThanks for reading. UTG
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Post by kellyoreed on May 4, 2017 18:45:01 GMT
I've donated and will also share on twitter and Facebook. Hope he can reach his goal.
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Post by Colyton Gas. on May 4, 2017 19:07:53 GMT
Sent a bit.
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 4, 2017 20:38:34 GMT
A long serving loyal Gashead Jools Pirog needs an operation which the NHS won't fund. Also known by many as Kingswood Polak on the forums, Jools has been an FFS Club member since we started and many of us have met him at our Sponsored Matches. So, if you can spare a little i'm sure it would be appreciated. Here's the link: linkThanks for reading. UTG Thank you John. It's not an op but a biological drug that gives me the best chance of treatment without the high percentage of bladder cancer & many lymphomas that the chemo produces in its scattergun approach. In the U.K. The national institute of clinical excellence ( oh the irony) say it's too expensive to use so the protocol demands having the cyclophosphamide chemo drug for at least 6 months prior to even being considered. The other drug is called RITUXIMAB & has the best chances of working with minimal side effects. To be clear, there is no cure but it can greatly improve life quality and stop the lung bleeds, joint agony, blindness, deafness and so much more. Live been overwhelmed by the response. I made the page 3 weeks ago but was too embarrassed to post it. Sometimes it really is time to hold out a hand to ask for help. Thank you for posting and to those who donated so far and shared the page. Bless you all
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 4, 2017 20:39:18 GMT
Just like my gorgeous Millia. I am the cat man afterall. As the supermarket ad says, every little helps. I know ppl are feeling the pinch so I honestly have been shocked but also had some life affirming experience from this. Thank you friend
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Deleted
Joined: January 1970
Posts: 0
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Post by Deleted on May 4, 2017 23:40:57 GMT
A long serving loyal Gashead Jools Pirog needs an operation which the NHS won't fund. Also known by many as Kingswood Polak on the forums, Jools has been an FFS Club member since we started and many of us have met him at our Sponsored Matches. So, if you can spare a little i'm sure it would be appreciated. Here's the link: linkThanks for reading. UTG Great shout JTS, we are spreading the word far and wide via the Gashead Network in business, and over a grand in about 24 hours isn't to be sniffed at, lot's more work needed to get this to work for KP though, cash donations may be difficult for some, but a simple Facebook share or re-tweet costs nothing and takes seconds to get more awareness out there, if 49 of us can do our own sponsored event and raise a grand each then Jules can get the treatment to get his quality of life back, in the words of Delia, let's be having you! I'm in, and if 48 others can do an event and raise a grand each then we can wave Jules off to the states for revolutionary treatment. Any takers for a get together?
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Post by alloutofgas on May 5, 2017 7:04:05 GMT
Donated £30 last night. Jools is a top bloke so please chip in.
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Deleted
Joined: January 1970
Posts: 0
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Post by Deleted on May 5, 2017 12:06:37 GMT
Just added my support. Good luck Jules.
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cavallo
Joined: August 2014
Posts: 3
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Post by cavallo on May 6, 2017 20:00:54 GMT
This City fan has just donated. I wish KP all the very best
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Post by scotsgas on May 8, 2017 6:09:45 GMT
I don't know if this has been publicised on other forums but I'm sure if we can reach a wider audience then the target becomes far more achievable.
It needs bringing to the arrention of the media i.e. The Post and maybe Geoff Twentyman at Radio Bristol.
So we need a volunteer with a good insight into KPs situation to make a few calls and get the ball rolling.
Just a suggestion.
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Post by badbloodash on May 8, 2017 10:37:51 GMT
A long serving loyal Gashead Jools Pirog needs an operation which the NHS won't fund. Also known by many as Kingswood Polak on the forums, Jools has been an FFS Club member since we started and many of us have met him at our Sponsored Matches. So, if you can spare a little i'm sure it would be appreciated. Here's the link: linkThanks for reading. UTG Thank you John. It's not an op but a biological drug that gives me the best chance of treatment without the high percentage of bladder cancer & many lymphomas that the chemo produces in its scattergun approach. In the U.K. The national institute of clinical excellence ( oh the irony) say it's too expensive to use so the protocol demands having the cyclophosphamide chemo drug for at least 6 months prior to even being considered. The other drug is called RITUXIMAB & has the best chances of working with minimal side effects. To be clear, there is no cure but it can greatly improve life quality and stop the lung bleeds, joint agony, blindness, deafness and so much more. Live been overwhelmed by the response. I made the page 3 weeks ago but was too embarrassed to post it. Sometimes it really is time to hold out a hand to ask for help. Thank you for posting and to those who donated so far and shared the page. Bless you all Jools I know we spoke before the millwall game about a few things but do you know you can appeal the discision regarding rituximab they refused me when I had my last lot of chemo but I appealed and it was overturned must say it's a life saving drug but it ain't no fun the first drip lasts twelve hours and afterwards you feel s**t for a few days still it's better than being a s**thead stay strong mate we are lucky in that when the chips are down the gas family steps up and looks after there own ☠️☠️☠️
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Swedish Gas
Bob Lee
BRFC in exile, IK Sirius Fotboll som andra lag, heja Sirius!
Joined: June 2014
Posts: 167
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Post by Swedish Gas on May 9, 2017 16:12:31 GMT
Justgiving link retweeted by Keith Brookman, should boost the signal a little. I don't know if this has been publicised on other forums but I'm sure if we can reach a wider audience then the target becomes far more achievable. It needs bringing to the arrention of the media i.e. The Post and maybe Geoff Twentyman at Radio Bristol. So we need a volunteer with a good insight into KPs situation to make a few calls and get the ball rolling. Just a suggestion.
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 9, 2017 23:58:57 GMT
Thank you John. It's not an op but a biological drug that gives me the best chance of treatment without the high percentage of bladder cancer & many lymphomas that the chemo produces in its scattergun approach. In the U.K. The national institute of clinical excellence ( oh the irony) say it's too expensive to use so the protocol demands having the cyclophosphamide chemo drug for at least 6 months prior to even being considered. The other drug is called RITUXIMAB & has the best chances of working with minimal side effects. To be clear, there is no cure but it can greatly improve life quality and stop the lung bleeds, joint agony, blindness, deafness and so much more. Live been overwhelmed by the response. I made the page 3 weeks ago but was too embarrassed to post it. Sometimes it really is time to hold out a hand to ask for help. Thank you for posting and to those who donated so far and shared the page. Bless you all Jools I know we spoke before the millwall game about a few things but do you know you can appeal the discision regarding rituximab they refused me when I had my last lot of chemo but I appealed and it was overturned must say it's a life saving drug but it ain't no fun the first drip lasts twelve hours and afterwards you feel s*** for a few days still it's better than being a s***head stay strong mate we are lucky in that when the chips are down the gas family steps up and looks after there own ☠️☠️☠️ Thanks for the input Dave. I have had Dr Jayne from Addenbrookes fight my corner and have still been refused but I hope that this could maybe shame them into it ? I won't be giving up but in the meantime I'm trying to get the funds to not have to battle the N.I.C.E protocols. I feel so fatigued that I can't verbalise it. Some days I shake so much I can't even hold a drink of water. I've really been fighting with all i have got. I'm on increasingly higher doses of azathioprine, methotrexate and prednisone right now. I really am so tired of this mate
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Post by billyocean on May 12, 2017 12:16:51 GMT
Just donated and shared. Best of luck KP
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 13, 2017 14:22:07 GMT
Just a quick update. The fund cracked the 2K barrier last night and although not close to the 50K, it still can make a big difference as I've been weighing up my options. I think that I habe to be realistic and understand that many are feeling the pinch and austerity has affect many. Then there is sheer charity fatigue as it seems we are all being asked to fund things that the government could do but don't. I feel bad about this, make no bones about it. I am a proud guy and hate begging like this but we each habe a responsibility to ourselves and to fight our own battles in any decent manner possible. I made the page weeks before but wouldn't put it live due to male ego and pride. I also have been putting on a front for so long that I guess many won't or can't believe how sick I am but it's been kind of a liberating experience in opening up and telling the truth, at long last. I have worked it out that if I can get 5K then I can maybe max out credit cards and sell ALL possessions that are worth selling, let go of the past in selling too. I don't know how I will pay back the cards but that is something I will deal with when or if it comes into play. I just wanted to thank everyone who has read, shared and donated. I DO understand that many are just unable to donate and who live hand to mouth. It's also given me a lift in just how many habe donated this and in updating the page, thanking those who have helped. I've had messages from financial folk who are offering help in advice and property matters. Thank you one and ALL. You have given me some fight back and I was ready to end it just a short time ago. The worst part of this is not being able to plan anything. I don't blame nor have any truck with those who stopped calling or knocking my door, it must be galling when you keep hearing I'm sorry but I'm just not up to it today.
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 15, 2017 16:50:27 GMT
Just a quick update. My next door neighbour has asked me if I would sell him the patch of land to the rear of the house. All that's on it is a prefabricated garage but it's big enough for 3-4 like it and he has recently spent 90K on an extension but the back lane runs in such a way that him having a rear situated garage would not work, due to the wall opposite and reversing in. It is just dumb luck that he's asked as he doesn't know of the severity of illness but has seen the ambulances, I guess anyway I have been to the estate agents today and hope to be able to give him a price. Of course it will devalue the property but who cares if it can help me live longer and with a better quality of life ? Not this kiddy. Really 5h1t day today & doesn't help when people tell you that you look ill. Anyway, I will update of the price quoted when it happens. I did have a call from Steve Hamer & a message from Nick Day but it seems the campaign has hit the buffers. badbloodash did you ever have period where you would just drop ? I've had a few now & didn't know if it's something I should be telling doctors or just trying to carry on ? Thanks to @castinstone billyocean scotsgas cavallo alloutofgas @1986gas Colyton Gas. kellyoreed and last but not least Jon the Stripe & all others who have been so kind to donate and share the appeal. It's also made me a bit of an emotional wreck so forgive me if I sometimes may sound beaten one day then top of the world the next. I've never experienced such a rollercoaster of emotions & it makes it difficult to even be around people on somedays. Thanks again. I REALLY DO appreciate all of the help, I truly expected this to bomb.
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Post by badbloodash on May 16, 2017 6:16:55 GMT
Just a quick update. My next door neighbour has asked me if I would sell him the patch of land to the rear of the house. All that's on it is a prefabricated garage but it's big enough for 3-4 like it and he has recently spent 90K on an extension but the back lane runs in such a way that him having a rear situated garage would not work, due to the wall opposite and reversing in. It is just dumb luck that he's asked as he doesn't know of the severity of illness but has seen the ambulances, I guess anyway I have been to the estate agents today and hope to be able to give him a price. Of course it will devalue the property but who cares if it can help me live longer and with a better quality of life ? Not this kiddy. Really 5h1t day today & doesn't help when people tell you that you look ill. Anyway, I will update of the price quoted when it happens. I did have a call from Steve Hamer & a message from Nick Day but it seems the campaign has hit the buffers. badbloodash did you ever have period where you would just drop ? I've had a few now & didn't know if it's something I should be telling doctors or just trying to carry on ? Thanks to @castinstone billyocean scotsgas cavallo alloutofgas @1986gas Colyton Gas. kellyoreed and last but not least Jon the Stripe & all others who have been so kind to donate and share the appeal. It's also made me a bit of an emotional wreck so forgive me if I sometimes may sound beaten one day then top of the world the next. I've never experienced such a rollercoaster of emotions & it makes it difficult to even be around people on somedays. Thanks again. I REALLY DO appreciate all of the help, I truly expected this to bomb. Mate I know you don't want to hear this but you need to keep strong there have been times when I have been so low I felt is it ever worth all the effort but I'm surround by the most fantastic family who will not let me stay there for long . every day I wake up thinking one day longer in this fight that I will lose eventually but I'll never give up and nor should you in August 2006 my wife was told I had 24 hours to live in may 2007 I had my shirt off at Wembley. In regards the land look into it a bit more is it just for him or does it release more gardens that could be developed these piece of land are known as ransome strips and could potentially be worth a lot more than you think hope it all goes well for you mate I know your poles are tough f**kers and fight to the end ☠️☠️
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 16, 2017 19:00:49 GMT
Just a quick update. My next door neighbour has asked me if I would sell him the patch of land to the rear of the house. All that's on it is a prefabricated garage but it's big enough for 3-4 like it and he has recently spent 90K on an extension but the back lane runs in such a way that him having a rear situated garage would not work, due to the wall opposite and reversing in. It is just dumb luck that he's asked as he doesn't know of the severity of illness but has seen the ambulances, I guess anyway I have been to the estate agents today and hope to be able to give him a price. Of course it will devalue the property but who cares if it can help me live longer and with a better quality of life ? Not this kiddy. Really 5h1t day today & doesn't help when people tell you that you look ill. Anyway, I will update of the price quoted when it happens. I did have a call from Steve Hamer & a message from Nick Day but it seems the campaign has hit the buffers. badbloodash did you ever have period where you would just drop ? I've had a few now & didn't know if it's something I should be telling doctors or just trying to carry on ? Thanks to @castinstone billyocean scotsgas cavallo alloutofgas @1986gas Colyton Gas. kellyoreed and last but not least Jon the Stripe & all others who have been so kind to donate and share the appeal. It's also made me a bit of an emotional wreck so forgive me if I sometimes may sound beaten one day then top of the world the next. I've never experienced such a rollercoaster of emotions & it makes it difficult to even be around people on somedays. Thanks again. I REALLY DO appreciate all of the help, I truly expected this to bomb. Mate I know you don't want to hear this but you need to keep strong there have been times when I have been so low I felt is it ever worth all the effort but I'm surround by the most fantastic family who will not let me stay there for long . every day I wake up thinking one day longer in this fight that I will lose eventually but I'll never give up and nor should you in August 2006 my wife was told I had 24 hours to live in may 2007 I had my shirt off at Wembley. In regards the land look into it a bit more is it just for him or does it release more gardens that could be developed these piece of land are known as ransome strips and could potentially be worth a lot more than you think hope it all goes well for you mate I know your poles are tough fers and fight to the end ☠️☠️ Thanks Dave, this means a lot to me. I am having one of those days today but I will get to bed early then tomorrow's another day. Thanks or the tip on the land. I guess I am clutching at straws and could be easy prey to some. The fatigue is kin horrible. It's all I can do just to lay on the sofa today. Very much appreciate you taking time to post this.
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 23, 2017 15:36:05 GMT
Just a quick update. The total is £2290. I know many are feeling charity fatigue so fully understand those who can't donate. I hate it that I've come to this but it is what it is. 15 days left and we are trying our best to continue to badger the national institute of clinical excellence, to try to appeal their decision but they won't budge to this point I would ask that people could share the page if tired of it/unable to donate. A share helps and is greatly appreciated Thank you
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kingswood Polak
Without music life would be a mistake
Joined: May 2014
Posts: 10,263
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Post by kingswood Polak on May 25, 2017 11:00:27 GMT
Admin. Could you please maybe unpin this for these last 10-12 days ? I think it's just easy to by pass and I don't blame those who would do that. Times are hard and most of my own people are feeling the pinch, charity fatigue and then those who have their own problems, please believe me when I say I've been there. When able to work I had a long list of direct debits to charities and it used to make me more able to face the world, somehow thinking I could buy a clear conscience but that's another story I had donations from @swissgass and from @gregorystephens so wanted to say a big thank you and to those who have donated anonymously. I just wanted to say that please do not feel any embarrassment even if you donated a single penny. No one is lesser or better. I thank you all from the bottom of my heart. It doesn't look like I will get close BUT contingencies are being looked into and I've found a place which will do the treatment in London so that will cut down on cost big time as no need to arrange flights, worry about burglary and staying there. We now think we can get it done for 30K or, if being down with the latest lingo, 30 bags. ANY donation is greatly appreciated and means just paying back that much less. It's nuts but I'm being kind of punished for not being older as I'd be able to do equity release. For those interested, I had my specialist see me yesterday and they are concerned with high BP causing the TIA's or trans ischemic attacks, that make me go blind for periods. My bloods are showing high ANCA titre but because I now have the Crohn's become very active, that needs addressing prior to commencing treatment as it would more than likely kill me. I'm just being straight up , balls out honest. Anyway, if you could unpin then I can bump with updates or it can go away. I'm happy with either. Thank you all once again
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