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Good and bad days

Happypin

Site Supporter
Joined
Aug 30, 2018
Messages
1,019
Location
London
Alias
Alan Adair
I know I’ve posted on here before but this is just to make people aware of a very rare Cancer, and update.

Sarcoma !!!! Have you heard of it ? Do you know someone that has or had it? well you do now, I have it.
Back in 2014 I had one grow on my spermatic chord a 1 in 7 million chance leiomyosarcoma is my version the most common one of all the sarcoma’s.
Although it had gone to my lungs, my lungs has done a pretty good job in keeping them small up until a year ago, The Royal Marsden where I’m being treated have said many times it’s very unusual to see very slow growth of sarcoma on the lungs. Sarcoma can grow anywhere on the body no place is safe, at present the ones I know about are 9 on my lungs, 2 on my left leg, 2 in my right groin, 2 on my back, 1 on my finger and one on my chin. Yes I’m very aware I shouldn’t still be here 2 - 5 years is the average.

Treatment!!!
There is no cure, all they can do is slow the disease down giving me more time, so far I’ve had 3 of the larger lumps treated with Radiotherapy all this does is put them to sleep for up to a year or two. Last year I was on chemotherapy called doxorubicin nick name the Red Devil, and when I tell you chemo is worse than the cancer, the journey to hell and back is what I went through, I was booked in for 6 doxorubicin but gave up after 5 the last one I just couldn’t face, while on Doxs I had 3 emergency C.T scans checking for blood clots on the lungs, treated for blond clot’s on both arms with thinning injections to my stomach, I had a camera down my throat after spewing large amounts of blood up, I also spent 2 nights in Lewisham hospital for further checks to see if other damage was done from the chemotherapy.

So! now I’m on Chemotherapy again this one is more bearable I’ve been told, the first one was very easy in comparison, the 2nd I had last Thursday and it’s knocked me for six, I would say I’m coming through the worst of the side effects and can now switch on a pinball or two until the next chemo.

Thank You.
So many people to thank, The Royal Marsden in trying to extend my life and making me more comfortable, I have no doubt if treated at a different hospital I would be in a much worse situation at this stage.
I’d like to thank Chris at the pinball Office, Andrew Saunders, Mark, Dave Bishop and all the private messages I’ve received from people on here, too many to name, your support drives me on through this very ****ty situation.
I‘m also very lucky to have a Brother called Alfie thats only a phone call away, he has taken me to so many appointments over the year I’ve lost count.

Lets play pinball.
Alan Adair
 
Thanks for sharing. Your journey and struggle puts into perspective what we do here, we play and enjoy pinball, often with each other. Good luck on your journey with this new chemo.
 
Good luck mate, I had abvd chemo every two weeks for 6 months (a=doxorubicin) That beeping noise from the machine still makes me feel sick if I ever here it.
Shaved my head but didn’t need to because I didn’t lose any hair when they said I would Doh. I guess I was ok because I have the devils blood but the radiotherapy was a nightmare for me. Given 50/50 chance and that was 2008 so there is always hope and some luck.

I bought a sauna to sweat that crap out of me, devil be gone!

Like you say ‘good days and bad days’, a horrible thing to be going through and a total mind f..k.

It is good to talk about it, I always felt a bit better if I did. All the best wishes for you and good luck🤞
 
Good luck mate, I had abvd chemo every two weeks for 6 months (a=doxorubicin) That beeping noise from the machine still makes me feel sick if I ever here it.
Shaved my head but didn’t need to because I didn’t lose any hair when they said I would Doh. I guess I was ok because I have the devils blood but the radiotherapy was a nightmare for me. Given 50/50 chance and that was 2008 so there is always hope and some luck.

I bought a sauna to sweat that crap out of me, devil be gone!

Like you say ‘good days and bad days’, a horrible thing to be going through and a total mind f..k.

It is good to talk about it, I always felt a bit better if I did. All the best wishes for you and good luck🤞
Maybe I should of bought a sauna instead of a NIB Cactus Canyon.
yep that bleeping noise, I know exactly what that does to your head.

How did you manage to keep your hair, head to toe bald I was lol.
 
Thanks for sharing. Your journey and struggle puts into perspective what we do here, we play and enjoy pinball, often with each other. Good luck on your journey with this new chemo.
Pinball over the last few years has really kept me focused, many new friends along the way.
Many thanks.
 
Great to get to know you and Alfie over the past year Alan, and hope that you (and all of us) can make the most of whatever time we have, and jam it full of good friends, food, and laughs. Hope to play some more pinball with you soon mate.
 
Great to get to know you and Alfie over the past year Alan, and hope that you (and all of us) can make the most of whatever time we have, and jam it full of good friends, food, and laughs. Hope to play some more pinball with you soon mate.
Cheers Davey
your always welcome at mine.
 
Maybe I should of bought a sauna instead of a NIB Cactus Canyon.
yep that bleeping noise, I know exactly what that does to your head.

How did you manage to keep your hair, head to toe bald I was lol.
They said to me you WILL lose your hair, well I didn’t lose my hair and we always joked about it. I was always joking about in the hospital, good to cheer the nurses up as they see a lot of doom and gloom. My wife was always there with me, they had to hit me up with that date rape drug to relax me to get the pic line in. There was about 4 nurses and my wife around me and I was totally out of it and I said them “come on ladies help yourselves” luckily they were all cracking up😂

Swap you your Cactus Canyon for a top end German infrared sauna, it’s in pieces here so you will have to build it back up🫣😂
 
They said to me you WILL lose your hair, well I didn’t lose my hair and we always joked about it. I was always joking about in the hospital, good to cheer the nurses up as they see a lot of doom and gloom. My wife was always there with me, they had to hit me up with that date rape drug to relax me to get the pic line in. There was about 4 nurses and my wife around me and I was totally out of it and I said them “come on ladies help yourselves” luckily they were all cracking up😂

Swap you your Cactus Canyon for a top end German infrared sauna, it’s in pieces here so you will have to build it back up🫣😂
I’m sure you told me this story before, my partner has just laughed out loud.
My port when fitted only had the area numbed, I’m gutted I never had the Rohypnole drug now after your experience lol
 
I had to go into hospital for a week after the radiotherapy because I had a bad reaction in my throat and could hardly swallow and was panicking, they put me on morphine pump so was out of it again, drifting in and out of consciousness and loving it (well it was free right😂) talking loads of rubbish with the old boy next door about socks as I was recommending Marino wool ones etc (very random) Anyway I must of been talking about naughty things with the nurses again because late one night 2 of them turned up at my bed with a metre measuring stick and said come on then let’s have a look and see how big it is😂🤣😂
 
You don’t have to thank me Alan I’ll be with you though thick and thin and always help you look for that extra ball and any multiball life throws at you.
I must thank you though for getting into this hobby and forum I/we have made some good friends because of it and will continue to do so with your enthusiasm with the hobby .
 
I really feel for you, Alan. Sadly, I can appreciate from first hand experience of cancer and chemo how hard the whole experience is. Hope the new chemo is more tolerable than before and doesn't cause you too bad side effects. It sounds like you've had a really tough time of it but respect your positive attitude and strength in coping with it all. Enjoy the pinball when you can.

Very best wishes
Greg
 
I had to go into hospital for a week after the radiotherapy because I had a bad reaction in my throat and could hardly swallow and was panicking, they put me on morphine pump so was out of it again, drifting in and out of consciousness and loving it (well it was free right😂) talking loads of rubbish with the old boy next door about socks as I was recommending Marino wool ones etc (very random) Anyway I must of been talking about naughty things with the nurses again because late one night 2 of them turned up at my bed with a metre measuring stick and said come on then let’s have a look and see how big it is😂🤣😂
My kind of humour lol
 
All the very best of luck Alan and try keep positive. It kinda puts all these expensive toys into perspective but thankfully they still put you in that happy place and that’s what’s important.

Not sure if there’s anything me and Bertha can do thats of help but just shout and ill get on it.

Col ❤️ 🤗
 
All the very best of luck Alan and try keep positive. It kinda puts all these expensive toys into perspective but thankfully they still put you in that happy place and that’s what’s important.

Not sure if there’s anything me and Bertha can do thats of help but just shout and ill get on it.

Col ❤️ 🤗

You know what Col, there is something :) I'll PM you.
 
Hi Alan, was great to meet u that day, glad the curry was nice, your a legend, best of luck with everything, keep on enjoying the pinballs, have to catch up again, take care Scott
Scott
the pleasure was all ours, your playfield you gave me is on my wall, still need to fit the lights but it looks fantastic as it is.
It gave us an evening out with a good curry to follow.

This is what I try do, keep busy, have things planned to look forward to however small. As low at times I feel I’m still making the most of every good day.
The gift of the playfield really touched me, this forum are full of guys like you, today I have been lifted out of a big hole.

thank you so much
 
Alan hope you well and stay on top of it.

Wondering though you and others who have had to deal with this. Did your employer / life insurance / critical illness cover / pension help with finances?

Neil.
 
Alan hope you well and stay on top of it.

Wondering though you and others who have had to deal with this. Did your employer / life insurance / critical illness cover / pension help with finances?

Neil.
I'm self employed, mortgage free so dont need a lot of money to live on.
There is a lot of help from the government I get, 3 benefits, no road tax on one vehicle, all medication and dental is totally free. None is means tested so my pinball collection is safe lol.
It's the perks of terminal cancer. The little savings I have, I'm doing my best to spend the lot. 2 years should do it 🍾😎 plus I have a disability badge, now that is the best perk of all, wide parking bays and yellow lines I love so much.
Cheers Neil
 
Alan hope you well and stay on top of it.

Wondering though you and others who have had to deal with this. Did your employer / life insurance / critical illness cover / pension help with finances?

Neil.
I had critical illness insurance thank god, was working for an electrical contractor at the time and travelling to Heathrow then home weekends.
Paid out enough to not work for quite a few years, told my wife to cancel the policy a few months before I was told I had cancer but she didn’t😮‍💨

I tried to get help as I didn’t know if it was going to pay out, no financial help from the government but luckily the policy paid out after a few months.

Every time I have a tax return I never forget the crap I had and no help.

I can’t imagine what would have happened with a wife and 4 kids and no money coming in, nightmare.
 
I had critical illness insurance thank god, was working for an electrical contractor at the time and travelling to Heathrow then home weekends.
Paid out enough to not work for quite a few years, told my wife to cancel the policy a few months before I was told I had cancer but she didn’t😮‍💨

I tried to get help as I didn’t know if it was going to pay out, no financial help from the government but luckily the policy paid out after a few months.

Every time I have a tax return I never forget the crap I had and no help.

I can’t imagine what would have happened with a wife and 4 kids and no money coming in, nightmare.
Luckily for me things have changed, I would definitely be 2 pins less in my collection and no mods added to the others.
 
Luckily for me things have changed, I would definitely be 2 pins less in my collection and no mods added to the others.
I’m glad they are looking after you and so they should, all those years of paying tax. Having an illness is bad enough without having to worry about finances.
I have never had any benefits or my wife and when I needed them they shut the door, the NHS are great though so got my moneys worth out of that👍

Getting that cheque in the post was a game changer for us.
 
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