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
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