Found out on Tuesday 14th May that I have T2 Bladder Cancer. Looks like its contained to the bladder muscle so having PET scan on Monday and start 3 rounds of Chemo on Tuesday.
Feeling calm now that I know what it is and where it is. The waiting for the 1st Cystoscopy was the worst.
I have to have bladder out and was hoping to chat with some 'Bag folks' and some 'Neobladder folks' to hear their experiences.
Just touching base and wondering how your PET scan went and how you're doing with the chemo?
Have you heard about our Cancer Connect program here at Cancer Council? It's a great little program where you can chat over the phone with trained volunteers who have had the same or similar cancer or treatment you are having. We have a number of volunteers who have had bladder cancer, even one with a neobladder, that might be great for you to have a chat to. If you'd be interested, send an email to email@example.com with your contact details and I'll have someone from the team contact you
Cancer Council Online Community Manager
PET scan was good as contained to bladder. Been lucky with nausea not getting to bad. Have to lose weight for opeation so that's not a problem at the moment. I'm a week into the second round of chemo and very cloudy in the head.
Was lucky to spend some time with and talk with some people who took me through the bag option. Plus found a great forum on FB - Neobladder Nexus. Got the monkey off my back by attempting a self catheterisation and the 'unease' disappeared so scheduled for a neobladder on 31st July.
My husband was diagnosed stage 2 in the bladder cancer 7 th March ,2 days after he turned 65. Had a radical cystectomy with an I’ll conduit. We are now in October and he is advanced stage 4 bladder cancer secondary bone cancer. The cancer broke his pelvis. He had 5 sessions of radiotherapy. He has gone from 94 kgs to 66. He has had one and a half rounds of chemo and hopes to start immunotherapy next week. He has had a hard slog and still says he will beat this. There is no cure for bone cancer and at the moment his pain meds are high but will be reduced as radiation does it’s job and so to immunotherapy. Hope is all we have and I hope your journey is easier then his. Everybody has a different journey and though it seems helpless at times positivity is what gets us through. Never think the worst and make everyday count.best of luck.
so that was then and this is now. Immunotherapy didn’t work. We lost our house our future plans and now we have lost him. He passed on the 9 th Jan. he was semi conscious for 10 days on a pain pump infuser. He said he would give it a thumping and he did. Now I’m classified as homeless. I have no lease and no mortgage. I stay with my baby girl my youngest daughter. I have 3 children and they all want me to live with them. I can’t cut myself in 3 so I’m torn. They live all over Hamilton Heywood and Tatura. So were do I go.
Be thankful that they would all love you to live with them. That's a wonderful situation to be in.
Heywood sounds nice as in it is close to the coast, although I've never been there before.
Perhaps choose the family that is closer to facilities (hospital,doctors and such) that you might need in the future. Just a thought.
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