GIST TUMOUR

Hello, at last, I didn't there was anyone out there, only me. so I popped in and out a few times and looked at zero response, I didn't realise it

was  seven months ago. Well, I am still vertical. how are you ?????

Hello again, I missed out the word "think" .at least my brain still notices 

things !!!!!

Hello  I just thought I would pop in to my loney  Gist forum, on the off

chance anyone had joined in, as we are a bit of a rarity,and here you

are.I am an owner of a tumour, don't know how long I have had it,and

neither do the medicals, who on discovering it ,decided I should have my entire stomch removed, to which I said no. Iwas then passed to another dept, as they were no longer interested. The "new" dept

decided that I would be given drugs ,again I refused, having read

the horrendous side effects these drugs caused So ,I have a C.T 

scan every six months, when they remember to ask me .

I strongly believe that ASPIRIN caused this tumour (20 yrs of this

drug) so, I stopped taking it, about four years now.

My lump has stayed quiet ever since and I just regard it as a non

paying squatter, and seldom think about it.

There is a support group of sorts, which consists of  a meeting

with a non Gist  speaker ,a cup of tea ,then they chat ,this is 

when I become invisible (ignored ) so I didn't see the point in

going to a three monthly meeting

You are obviously in THE best  place for lots of attention ,I am not

Nice to hear from you ,don't disappear.

Jacqueline    

Hello again,, looooooooooong time since we had words. My 

squatter (GIST ) and I are still together. I think, Silent and no

tweaks .It's over a year since I have been summonsed for a scan,,,chat,,,, not even a note, so ,I think that I have been

discarded.or shredded..  

Hope you are VERY well, and coping with those god awful side

effects .  I made another choice about prescription drugs,,,,

I don't take any at all,, I started browsing the herbal stores, to find alternatives, and a sense of curiousity. 

Do ,reply to this ,if only to say hello   

Hi Jaqueline,

I randomly found myself on this site and had forgotten that I had posted before and came accross your reply, it has been a long time since I last visited and your 'unpaying guest' made me smile. I don't often feel the need to chat, however, sometimes it is nice to reconnect and to realise that although we have a very rare and compicated cancer, none of us are alone. Sending you a BIG Hug and sincerely hoping that you are coping as well as you can.

Michael

Hello you ...It's eleven months since I told you NOT to disappear,

However, as you have sent a hug,,, I forgive you.

My squatter is , I think in residence, but I it is relaxing big time.

It might even have gone . It gets nothing to keep it going now.

namely Aspirin. So, there is nothing to cope with.  are you still on the 

god awful drugs ???? 

I did join the Gist Support group in Sheffield, most boring bunch

of people I have ever met,  so,, I unjoined . I also wrote to the 

group in the USA.  if you can, look them up, if nothing else

you will be awash with Gisters ,mailing you. and wanting to know all about your ""lump"" 

Now ,Tell me that you are coping ---- bad word---- I work on the

principle that if I am vertical, I am O.K

Jacqueline

Hi Jacqueline

I am still on the drugs on a daily basis and have 11 months left on the daily chemo, side effects are nasty a lot of the time but manageable. I am not a 'why me' kind of chaps it simply is what it is, I joined the McMillan Gist group online of course and don't feel the need to go to 'group meetings' at all, it is simply nicer to touch base with friends who have a positive outlook on life online instead. Do you still have 6 monthly scans?? the little rascals - was going to say B*st*rds- but was feeling too polite - maybe keeping quite but it is good housekeeping to keep a scanning eye on them. Life is pretty good on the whole, fatique gets me often BUT life goes on for as long as it can. My oncologist has given me a 16% chance of suvival when a stop taking my 'Glivec' so it is not all bad.

What is the address of the Gisters in the States, going overthere to visit with my Daughter who lives in Houston TX sometime soon.

Saying of the day 'If things don't change soon, they will stay the way they are' 

Michael

Morning, I see the Moderator is on the prowl again. Did you spell 

something incorrectly, ??? whatever!!!!

Wanted to ask you if your life is not as happy as it could be, and does

it revolve around your tiresome lumps. You said they had been removed ??

IThey wanted to remove my stomach,,my whole stomach..but I said

No way,Main reason being that the hopital in question is a teaching

hospital. full of learners,eager to get their sticky fingers inside

bodies. I had two  bad experiences with them, and will not have

any more tampering with my body. 

I followed my "GUT" feeling about it's removal. and, my decision was 

right. Do you belong to a Support group ?? The one here benefitted the guy who ran it, he was constantly going off to gatherings of Gisters

all over the country. The rest of us had to do with a 2 monthly meeting,

where a person ,came and gave a talk about nothing remotely

connected with lumps ,a cup of tea, and a chat, in which I was 

totally ignored  .so as I said, I told the organiser I didn't see much 

point in the meetings. 

Ihave a couple of other untreatable conditions ,but they get the 

same treatment as the squatter ,,, I ignore them ,and take no

prescription drugs ,prefering to use herbals.  NO side effects at all.

So life chugs on  

Are you on Glivec fo r ever,? I did read about the side effects, and the

 American gisters are very prolific about the effects of the drugs

they take

Now, as the moderator has shredded your last mail.. do another 

one, and,,,, answer the questions , PLEASE

Got a lot of gardening to do today ,I pay to have the "Green bin 

emptied, at the moment ,it is empty.and next Monday is the day

suppose you are still snoring ,I'm on my first coffee ,in bed of course

Jacqueline

Hello. Iv'e just  been gardening until I turned  Puce, not my favourite colour !!!! Just checking to see if my appt for some physio was O.K

and ,there you were. Can't understand what made the Moderator put you on hold. I

I haven't been scanned for my squatter for 18 months as I said, every one I had ,the message was the same . ""It's not moving "" so. we

are all happy . I have just had a course of B12 injections, seemingly

I was a bit short of it. Bouncing all over the place now. 

Did feel a bit ""Can't be bothered "" before the shots.  

Can't remember the address of the USof A .I shredded everything to do with any of them .will trawl through obselete addresses, but I tend not to keep things no longer interesting .. This is not to be an excuse

for you to delete me //!!!!

Why are they stopping your treatment ??

When you go to TEXAS ( how long for)?? ask your daughter to look on the  internet for Gist  whatever .I seem to recall a member lived in Texas who mailed me. in fact ,they came from all over.

You will receive a huge bag of  lettere and info. and a nice purple 

wrist band 

What do you do for fun ??? I go riding (horses ) and I have a rather 

fast sports car ,that I drive anywhere and everywhere ,love driving.

As I am on the edge of Derbyshire I roam all over it. Not so much at the moment, . TOURISTS get in the way.  

i really am glad you tuned in,        colour of my face at the 

moment. I love these faces 

Jacqueline

Hi, try this.

on google      gist support groups in America,,

Morning Michael..did you find anything interesting ??

Looks as though you have done another runner !!

Ah Well,,,,, I did my best.

Jacqueline

Hello Houdini...found a really informative site ,thought you might like  

to look at ,as your dislike of forums does hamper one slightly

site is called

ASCO Cancer Net

 J

JHi, your time is up,,,, time to tell me how you are,, and did you find the

American group ?? Of course you did, and are totally engrossed, answering all their mail. Just nod  your head if you are O.K

 

Hello you,, here goes ,,are you there??? ARE you  still giving hugs ??? My squatter and I send you one each, as we are on speaking terms. I have just had a C.T scan ,first for two years,  squatter is still in residence ,but comatose,,, must be the herbals and vitamins  keep sending down... Please don't ignore 

this "note" . HOW ARE YOU ?? A reply is compulsory . that's the fierce one,, this is the "Bet he doesn't reply" This is the look of amazement ,,in case you do reply.

Jacqueline

Hello Mikey, just wondered if you are still breathing ..Three months is quite a long time to be ignored !!!!

Jacqueline