Hi @Richard56 , So good to hear from you! I'm glad it's over and done with for you. Yeah going home is good isn't it, in your own space you feel better. I completely get where your coming from about wanting to get back to the gym, it's my happy place too, I think next week I will go back for a short period to walk with my reader,try to do some light weight resistant exercises on the maschines,  if I have enough energy, as NO chemo next week 😊 The following week on the Thursday I have more treatment then the following week I have the extra heavy stuff, which will knock me around more. But some don't get so knocked around. I know a lovely person who was on the heaviest chemo and seemed to sail through! so you never know, and your fitness will definitely help you. Yesterday I walked a bit in the sun, but on chemo you have to be careful of getting too much sun as it makes you burn more. I hope you heal quickly ( you will I think ,being so fit) Can't wait till you get results and they make up a plan for you. Hugs, Cindi xx   ... View more

Hi @Jennifer66 , Oh yes, now I understand what you mean, and I totally know the "tumble dryer" the thinking can be!!😅 I often find myself over thinking. Wow, I'm sorry about how the chemo caused you such damage, very frightening for you. Was that caused by the harshness of the chemo on your body? I presume so? My chemo, mainly the Carboplatin drug causes my tinnitus to get terribly bad, so I think they are having to adjust my chemo strength, because it can damage my hearing so much that the tinnitus can become permanently horribly loud constantly. Why do you think your specialist doesn't recommend the "heated chemo" ? surely it's better to try this before such radical surgery of removing your bladder? If it was me I'd probably go for that as it sounds like it just targets the cancer not your whole body which sounds safer than normal chemo. Obviously you can't do that again ( normal chemo) Maybe ask your professor what HE would do if it was him or a family member.( his wife?) But i can completely understand how you are hesitant, you've had a very hard time with treatments, so of course you are skeptical and need as much info as possible. You've had such a hard time, I'm really sorry. Sad we aren't in the same states or we could've met up for a coffee or something to support each other. I haven't found anyone else at chemo or anywhere actually, with the same sort of cancer as us. Glad for this forum though.🙂 xxxx         ... View more

Hi @Kate985 I'm so sorry about your breast cancer, you're so young. It must be such a shock for you. Have you decided to go ahead with the double mastectomy, or is it just one? I had a double mastectomy last year when I had breast cancer. I recovered pretty quickly, which surprised many, but i was determined to get better. I hope you can decide what to do without too much stress, it is amazing how advanced they've become in helping women with breast cancer. Sending you hugs, Cindi xx ... View more

Hi @greg57 , I'm so sorry to hear about your liver cancer, I don't have that I have bladder cancer. But I hear the SIRT is very successful which is so good. Amazing what they can do for cancer these days, "it's not a death sentence" anymore, try to say that to yourself, have trust in your doctors. Try to think that it "could" be worse. That's what I do anyway. I hope you get a wonderful result. Thinking of you and sending you a big hug Cindi x ... View more

Hi @Richard56 , How are you now? I can't stop thinking about you, I really hope you're healing well and not in too much pain. I found with the pain meds, they cause bad constipation, so maybe you need to take Movical, that helped me. Also with the pain meds, I slowly cut them down after about 5 days, slowly came off them. I'd love to hear what's happening with you, I guess you're waiting for results, which can be so hard. Please keep in touch. Sending you big hugs, Cindi xx ... View more

Hi Jennifer66, It sounds complicated, you poor thing, it's so not fair is it. How did you find out? did you have blood in your urine or what? You have big decisions to make, if it was me I think I'd try to follow what the Onc thinks is best, it's hard putting your life in another's hands, but they should know what would work best for you. If you have the bladder removed, would you need to have a bag where the urine goes? I understand what you mean about the worry of microscopic bits of the cancer escaping, I worried also about that, and maybe that's why I'm having chemo now, to "mop up" any stray cancer cells. I hope you keep in touch, I'd love to know how you're going , and I really wish you best of luck with it all. Hugs from Cindi xx❣️   ... View more

Oh @Jennifer66, You certainly have been through a lot, wow. I had my right kidney & ureter removed, can I ask why they didn't do that for you? My kidney was a bit damaged from the large size of the cancer in ureter blocking the kidney, so they thought it my best choice really. One can cope fine with one kidney. I'm so sorry for you, very difficult decision and NO you don't want just a "band aid" solution.. find out AS MUCH as you can, I like to do that too. So sorry you still have a stent in, I had one but only for a week or so. Not nice. Please keep in touch, you are the only person I've found with a Ureter cancer ( even though they call it Bladder cancer) Sending you a big hug, Cindi xx ... View more

Hi @Tiff123 , I'm so sorry, and I understand completely. Last year I had breast cancer and this year I have another cancer, bladder cancer, I have a sister but I noticed she has distanced herself from me, she will answer texts but just briefly saying something like " you can do this, just listen to your body" .... that's it. I know how you feel, would be nice to have a little more wouldn't it. I think they are scared, can't face it, I really do think it's just that. I'm lucky I have a husband who "tries" to be my brick, he's not that great at it but I realise he does his best to support me and a cousin who is a sweet heart. I don't know if anyone really knows how to approach our cancers to give support except for others going through the same thing, that's why these forums are so great I find. Your relatives still love you they just don't know how to approach the big C subject. A gentle cuddle is sometimes worth SO MUCH isn't it. Sending you a big virtual cuddle Cindi xx💖 ... View more

Hi Jennifer66, I'm also like you, diagnosed with Invasive High-Grade Urothelial carcinoma, multiple foci of lymphovascular invasion, but my Onc said they call it Bladder cancer, so I had to have the kidney and ureter removed (involving part of bladder) and I'm on the chemo to mop up any escaped microscopic cancers, as it had spread into muscle & fat. Today I'm not feeling as bad, I had a coffee this morning without the smell putting me off! so that's a plus😊 If I was you, I'd contact your chemo nurse and ask her a lot of questions, or wait to fire them at your Onc, maybe write it all down , the questions & answers so you remember. Perhaps it would be a good alternative for normal chemo treatment? I know what you mean though, I also like to get as much info as possible, it's your body so you need to know as much about the treatment as you can. I hope everything goes well for you. I go back for more chemo on Thursday but just the Gemcitabine this week, so without the Carboplatin I hope it's a little easier. I haven't lost my hair yet and hope not to, but I still don't know if I will or not. I just want to get it all over and done with and work my way back to my original fitness and life. At the moment, just walking up the road for 5 minutes makes me breathless, I used to be able to go to my gym for 2 hours most days. Can't wait to be finished and do that again ( slowly!) Please don't let me scare you, your chemo sounds very different, you may find it very tolerable.😊 Cindi x ... View more

Hi Jennifer, Thanks for explaining that, it actually sounds not too bad that type of chemo, why don't you want to go ahead with that? it sounds much better than the one through the port. No sides would be lovely. Anyway, I hope you work out a treatment suitable for you , thanks so much for talking to me, it does help . Wishing you the best, Cindi ... View more