Postby Bev G » Thu Aug 04, 2011 3:35 pm
HI Susan:
I'm sorry you had to find your way to our board, but am so glad you got here, because we will be happy to help you as much as we can each step of the way. Of course you are overwhelmed right now. You'd be nuts not to be. I spent the first three months after my diagnosis in a fog, kept waiting to wake up because I was positive it was all a very surreal nightmare. Well, obviously I never woke up to find out it was all a big mistake.
Anything you feel right now is surely normal,but please avoid getting ahead of yourself. Don't give up before you get started or it will be very hard to re-capture the energy you're going to need to deal with this. I DO NOT want to discourage you, but this is one thing I wish I'd known. The first year after your diagnosis will likely be like the biggest pile of sh*t you can imagine. You will have to cope with lots of stuff...the rest of your diagnostic tests, plans, likely changes of plans, chemo, possibly (if you're lucky) surgery, lots of fatigue, many tears, etc. ect.
The good news is, in about a year, you will look back on this time, finding that you are, in fact, a much, much stronger woman than you ever knew you were. You will be encouraging and advising new folks here on the board. You will be looking forward at the plan that will hopefully keep your cancer in check for a long, long time. Once you've been off chemo for a few months, you will remember that it sucked, but you won't remember exactly how much and in what way (I promise). You will be told, and told again, that this is a MARATHON, not a sprint. You would be helped by working on ways you can take this one day at a time, and not looking too far in the future. There will be light at the end of the tunnel, which is not a train, but if you focus on every single thing you will have to get through in the next 10-12 months, you will find it overwhelming.
Try to stay away from Googling stats. You won't like what you see. It is terrifying, and your individual course and likely outcome will be YOURS, not everyone else's with stage III and IV disease. if you feel compelled to ask your oncologist what your prognosis is, make sure you really want to know. Until you have gotten some treatment under your belt, he/she will not be able to accurately assess how things are likely to go for you, and you will likely just hear the group statistics, which will not encourage you. As you read through posts on this board, make sure to read everyone's info under their signatures. This will give you a quick and good idea of where we all have been and how we're doing now. In general, I think this will be encouraging to you.
Could you let us know your age, approximately where you live and if you are getting care at a major (NCI) cancer center. We'll be able to help you more having this info.
In the meantime, try to find something to laugh about each day, build up your strength as much as you can (nutritionally and exercise wise) so you will be very strong when you start chemo. Ask us anything you want (we're not docs...at least most of us) but our group experience with cancer has got to be close to 1,000 years (maybe many more) and we'll help you all we can. I'm sure most of us know just how you're feeling right now. I promise you that as you gain information and begin to feel more in control you will feel better. In the meantime, remember to B-R-E-A-T-H-E.
Sending you virtual hugs,
Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now