Being in Limbo sucks!
Romanino Discesa-Limbo PisogneBeing in Limbo truly sucks. I don't know how other folk cope with it but I seem to be having a pretty hard time of it right now. It all started two nights ago. I had a night sweat. I've never had one before but it is a common 'B' symptom of The Hodge so my first thought for someone of my pessimistic nature is that the auto SCT has failed and that the disease is back and progressing. I've been fighting a head cold for the last five days and the night sweat was probably the last throws of that infection (and it was a warm night in Scottish standards AND I'm temperature sensitive after the SCT) but all the confidence I had has evaporated into the ether.
I get a CT scan in a couple of weeks but that is really just to get a base line for the future. In all honesty it'll be another four or five months before I know what is going on; that's when I'll get another scan. I don't know how I'm going to last that long. The CT scan I'm about to get won't really tell me much unless the mass in my chest has grown... that'll tell me a lot!!
The ironic thing is that I'm not looking for there to be any change in mass size. My onc says if the mass is the same size then it is 100% scar tissue. If it has shrunk back a small amount it is probably scar tissue that has just naturally shrunk back. If it has shrunk back loads it means I wasn't in remission going into SCT after all and that the BEAM chemo has killed of more (hopefully all) disease. We then need to wait for the future comparative scan. Follow all that??
Please God, don't let it have grown.
6 comments:
Stay strong, you.........xx
Wullie - I can hear your apprehension in the words you write...I can't imagine the fears that run through your mind. Remember, it's okay to be down in the dumps...as long as you pull yourself up and don't stay down there for long. You've been through hell...but now you are back. You've got to think positively and be encouraged that your SCT has done the job it was intended to do. I know easier said than done I'm sure. Hang in there and stay strong. Big (((HUGS)))
Susan
Yes, Wullie, Susan is right: don't stay down. You deserve to be happy and enjoy yourself with your three beautiful girls. Keep your pecker up! =)
Love, TOG
Wullie,
I know what you mean about limbo, recovery is a hard battle, but unlike chemo it's a battle without a battle plan! I get worried everytime I get a little pain in my chest or sweat a little bit at night but not every night sweat or pain is a relapse!! You've got to make the best of the time you've got NOW and not worry too much about what tomorrow brings. You've done everything you can to ensure your remission, believe in the action you've taken and put your fears aside. Maybe not the easiest words to hear, but I feel they are very true and at this point you don't need any BS. My new found love for Scotch is moving me want to come visit you!
All the best,
Darrel
Darrel,
Thanks for the kind words. Just what I needed to hear from someone that's experienced it. Veronica has been saying the same for days now but it seems different coming from a SCT brother.
We have four distilleries within 10 miles from our house and you would be an honoured guest in Scotland anytime you choose to come. You'll always get céad míle fáilte from this house! As would everyone who has been so kind to me and mine over this tricky 16 months!
How did I miss commenting on this?! Wullie, you hang in there! Post cancer sucks, eh? Don't worry, we'll all be here to cheer you on and pull you up from feeling crummy - why? Because you're awesome!!! Hang in there buddy! How's the candy and twinkies? - all gone yet? :)
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