Hi Landon & GMan
Tough times for you both. It's really hard to come to terms with this, especially at your age.
After 5 years of treatment for TaGd1, I am now 2 1/2 years clear. On first diagnosis, it hit me like a sledgehammer. Cancer is a big scary word. And the treatment was worse than the disease. You don't know what's going to happen next and that's distressing- suddenly you are not in control. It's easy for me to say, in my position, but that treatment is worth it- even though it makes you feel grim- and you are being cared for. From an initial large one, mine seeded into 7 new ones, then 2, then 2 more etc. but now I have none. You have to keep on top of it for yourself, too, and be responsible for making sure everything happens when it should- I had to chase my uro several times.
Some food for thought
- as someone else said, no-one ever died from non-invasive superficial bladder TCC
- 7% of cases of non-invasive superficial TCC, which you and me have/ had, change into invasive
- my Uro calls it nuisance cancer
- it's also referred to as bladder warts- never had a wart anywhere else, but could you compare it to a wart on your finger?
- they have to make sure that they keep you clean, although that's a nuisance, just in case you are in the 7%
- my doctor told me how lucky I was to have this- if you are going to get cancer non-invasive superficial bladder TCC at Ta Gd1 is the best you can get- for 93% of people, it doesn't change, it's enclosed in your bladder, it's easy to get out and the chemo is intravesical, not systematic where it's put into your bloodstream. Your hair may thin, but you won't lose it!
- life is for the living, so live it to the full. Research this thoroughly, so you know what's going on, look after yourself properly, and then try and forget it until your next treatment/ cysto- it really doesn't deserve to take over your life
As I said, easy for me to say, and I really suffered for the first year or so, but then the light dawned, I realised it was just a blooming nuisance, celebrated when it was clear, and gritted my teeth for the treatment when it wasn't, made some changes to my lifestyle and began to appreciate my life, my family and friends more than I ever did before.
You have to get there yourself- no-one can tell you this and you just accept it, and you will do this in your own time. It's scary and you worry- you'd be weird if you didn't, but don't let it take over the real you, or prevent you from doing what you want to do, just in case. Be proud of yourself for managing this difficult time. People say to me- Anne, I don't know how you say all this pragmatically, I don't know how you cope, but you will, and you do, just like we all do when a curve ball is thrown at us.
If you want a reality check, check out the Invasive area of this site. These are the people I admire- we've got it easy by comparison! You may not have to deal with this for the rest of your lives. People who have recovered from this and have 10 years clear are not on this website, but they are out there!
I hope that everything goes well for you, GMan and I'll be thinking of you, as I'm sure we all will be. Landon, I didn't catch what happened at your cysto?
Sorry if I've gone on a bit- just my thoughts- hope it helps!
Anne
