funnyfut:
Hi Steve what great news I will keep my fingers crossed for you, it goes to show you can beat it and if anyone was going to it’s got to be you. Have you gone on the Macmillan site? a lot of others on there would welcome your news as it would give them hope and show them there is hope… http://www.macmillan.org.uk/ I know you are going to be ok. Thinking of you mate.
regards
George
thanks george i hope you’re keeping well as can be expected,
i’ve got to admit i’ve had nothing at all to do with macmillan, i’ve always done my own thing and if i’m using one of their helpers i’m keeping him/her from someone who needs it more than me.
i went on the macmillan site and i’ve got to say its frightened me,
i knew what i had was dangerous but have always treated it with contempt,
i’d never gone online to find out about it and all the publications they gave me when i first went in remain unread.
my consultant and the nurses tried to explain what i’d got and how they were going to treat it, stage by stage.
i stoppped my consultant there and then, and told her to tell me what was happening when it was happening and we’ve done it this way since day one.
each stage and it consequences was explained when we got to it, once told i had a little think, pushed it to the back of my mind and then let them get on with it.
i think my defiance of what i had went in my favour and looking on that site only makes me realise how lucky i am, all the ones that match my story are dead.
i’ve registered on the site and i’ll try and have another read later,
i’ve got tears in my eyes for the frightened people on there, and thank my late dad for teaching me to fear nothing
It helps to talk to others who are in whatever way involved in this terrible illness and when someone like you Steve has such a positive side of beating this tells it on the site it gives so much hope to others. You will probably recocnise my name on there so please join in you can support so many with advice or just be friendly. We all need someone other than the closest to us to bear our fears to and this site lets us do it and the great news like yours makes a world of difference.
Steve I wish every success and hope it long continues keep fighting
George
i promise i will go on there again george, but after reading some of them i dont see how i can help, they know what drugs they’re on, what type of chemo, etc etc.
the only identification i had of my treatment was
day 1, big needle 2 small needles in the evening,
day 2, 2 small in the morning 2 small at night
day 3 big needle 2 small in the morning, 2 small at night
day 4 as day 2
day 5 as day 3
day 6 to 10 as day 2
i don’t know what the chemo was called, how much i had i just knew which size needle was coming
i will go back on though, if i can keep my eyes from misting up
I know what you are saying Steve, I am the same all I know is get up take 2 of the pink pills, 1 of the white, 1 of the capsules then mix the sachet of white stuff repeat four times a day. Then its the hospital on Tuesday and Thursday for needles, but as you will see on the site we all just talk and help with ways in which each of us have found to help the pain and discomfort. I suffer with my bones aching and the morphin helps but I still just ache, some told me about a special heat pad and it helped me. These are the sort of things that we all do on the site so its not about your treatment as such more about lifting and helping people.
I hope you carry on looking and recovering
All the best
George
Its a difficult one, if you feel that it compromises the way you feel about your own recovery Steve then leave it well alone. I understand where Funnyfut is coming from because I am involved in another disease related site and find it a great comfort (though the seriousness is nothing compared to what you gentlemen have handled and are handling.) While you are getting stronger Steve you need to avoid anything that could make you look again at the way you have faced cancer because your way is working.
Steve I apologise if I came across to strong and in no way am I trying to get you to do anything you do not want to. Your recovery comes first and foremost so do not do anything that might hinder that. I just tend to get on my soapbox now about cancer so look after your self and speed up the recovery.
Take care and keep us informed
Best Regards
George
theres no need for any apologies george, it’s just that it shocked me looking on there and realising most of the people talking about my illness are relatives of people who’ve died, not the people themselves
like i said i never knew anything about my illness other than i had acute myaloid leukemia, the only thing i discussed with my consultant was my odds for survival, she told me and i left it at that and told her to get on with it.
i knew there were two types acute and chronic, i thought chronic sounded worse so just assumed i had the nicer of the two
it was only when i came out of intensive care and back onto the cancer ward, they put me in a bed next to a guy with chronic, who had been going since 1998 with it, and i said to him if you can do it with chronic it should be a doddle for me with my acute.
after he had finished laughing, he explained to me how acute is as bad as it gets
i’m still fairly flippant about it, like i’ve said before i’ve always lived my life with a que sera sera attitude, if it wants me it knows where i am, i’m not hiding from it.
i will come back on the site and introduce myself, see you there soon.
lyndsey, you’ve met me a few times and know how laid back i am, i’m still the same person, same attitude.
i’ve spent my first 50 years not taking anything too seriously
i’m still the same person and whats going to happen is going to happen
i’m not going to start worrying about things now
biggusdickusgb:
lyndsey, you’ve met me a few times and know how laid back i am, i’m still the same person, same attitude.
i’ve spent my first 50 years not taking anything too seriously
i’m still the same person and whats going to happen is going to happen
i’m not going to start worrying about things now
hiya,
i don’t know you personally Biggus but iv’e been through the horrible c thingy i was found to have stomach cancer 18 months ago had all the checks bloods cameras chemo, surgery,regular check ups, i’m 72 and still going i honestly never gave it a thought and just let them do what was needed and it does get better anyway friend get well soon i enjoy reading your stuff thanks harry long retired
cheers for that harry, i was beginning to think there was something wrong with me.
its hard to explain to someone how i really do not fear it, and look upon it as just an inconvenience
i know what it is and i don’t want to die, but its not going to rule my life
i hope you’re recovery continues harry, and you’ve got another few years left in you.
if i get to 72 i’ll have had what i wanted to live for and would’ve seen my grandkids grow up, but then i’ll probably get greedy and want to see any great grandkids grow
these are my reason for living and on monday was the first of many reasons to fight on
leo’s first day at school, 21 years after his mam posed in the same spot on her first day at the same school
can’t show you the original, that went to australia with the ex
hiya,
hows things biggus?, nice bairns my youngest grandchildren look to be about the same age iv’e got loads of them all ages all shapes and sizes the only run i do these days is the school run. go for another check-up the end of this month i’m hoping to get the all clear i feel well enough,i just hope things are good for you and you are responding to the treatment anyway mate keep your chin up believe me it does get better, thanks harry long retired.
cheers harry,
i’ll let you know after the 26th when i see the lung man
everyone from the consultant to the cleaner reckon the cancer has gone,
i’m having no treatment for that so as far as i’m concerned it has.
the only treatment i’m on now is 4 pills a day to make sure i can’t get an infection on my lungs just in case there’s still some of the fungal infection hiding in the deep scores in my lungs.
i’m going to see the supposedly number 1 guy in the world for whats wrong with my lungs, because as i keep getting told “whats happening can’t happen” concerning the fact that although they’re deep scored they are regenerating and repairing themselves, it’s only supposed to be able to happen when lightly scarred
i’ve even been invited onto a two year long research program by the man himself, i’ll let you know more when i’ve spoke to him in person.
keep up the good work yourself, steve.
I said I wouldn’t post on here again until I had seen the expert in Manchester and got the low down off him.
Well I’ve been to see him and now I’ve had a lot of questions answered, so here goes.
My cancer treatment wasn’t bodged as I was led to believe in the first place; I was too weak when I first went in, coupled to the fact I had acute myeloid leukaemia, one of the nastiest, aggressive forms of leukaemia
As chemotherapy attacks everything not just the cancer, my body couldn’t defend itself against the attack, I developed emphysema, my lungs filled with fluid (pneumonia), preventing my lungs from absorbing oxygen, and septicaemia (blood poisoning) and as far as the doctors were concerned the fat lady had already sung.
What I now had was acute pulmonary aspergillosis, to cut a long story short, it’s a killer with no prognosis, in other words people don’t wake up from it.
We are now at the stage of delving into fantasy, I had been comatose for three weeks and not getting better but not dying either.
We’ve got a choice of three reasons for recovery now, and I’ll leave it up to you to decide which did it.
1, an untried mixture of drugs the consultants decided to try out because I was (in their words) dead already.
2, a spiritualist did hands over body on me, and as described on here previously told the nurses and my girlfriend not only that I would wake up but when I would wake up, and to prove it was no freak did it on another patient whose family had seen what she did to me and asked her to do it for him, it was a different outcome for him but she was as accurate on him as she was with me.
3, my daughter brought a camcorder recording my grandkids playing, saying hello and get better etc, etc.
When this was played to me I squeezed her hand and a tear rolled down my cheek, the first response to anything for two weeks, this was done the following day with the same response, my daughter left the camcorder with the nurses and it was played every day with the same response, apparently it was the only thing that brought a response until the day I woke up.
I’m already on record as believing it was the consultants (cancer and lung) bravery in trying something untested, although the nurses reckon an iron will to live helped.
Whatever the reason, the doctors now have a problem, they have no one to compare me to as regards my future treatment, I now have chronic pulmonary aspergillosis which is not that uncommon but they have no one who’s survived the acute and gone into chronic, for those who don’t know acute is rapid onset, chronic is long term.
As jokingly said before I’m a benchmark through the combination of drugs working for me, so it’ll be used for anyone else in the same boat until something better comes along, according to my consultant they haven’t lost one since.
Because my lungs are still improving, I’m now a research guinea pig for aspergillosis.
I’ve signed up to a two year research program, I’ve given blood and DNA, and agreed to them being used from now until eternity, apparently most people don’t mind giving blood to be tested for what ails them, but absolutely refuse to let the blood keep being tested maybe in twenty years time or even after they’re dead.
WHY? Once it’s out of your body it’s no good to you.
I have to go to Manchester every couple of months to keep being tested, so they can have live samples, the only other samples they have are off dead people.
There’s not much I can add except what the expert in Manchester said,
It’s not possible for me to still be alive, but I am.
It’s not possible for my lungs to improve, they are doing
Who said truckers aren’t a special breed?
Steve you are the special breed and lets hope they can improve thier knowledge by using the samples you are providing.
Well done mate and long may it last
Stay well
All the very best
George
I’m glad to hear it too. 
