Hi again @Mary60 , I just remembered they should give you steroids for the nausea as well? did you have them? I'm not too keen on them but I know a lady with lung cancer who finds them extremely helpful. Just a thought? Another thing to ask them Cindi xx 😘   ... View more

Hi @Mary60 , Oh so sorry, the nausea is horrible isn't it, they should give you lots of anti nausea meds, tomorrow you should ring them and ask for some, tell them how your feeling, maybe sleeping pills would help in night time, I found them helpful. You need to take the anti sick pills and lots of them. They also help my appetite. I find it takes about a week for side affects to get better after chemo session. But most sides can be delt with, you need to reach out to your chemo nurse ( did they put you in touch with one?) try tomorrow maybe. So sorry you're so miserable. Sending you a big hug, Cindi xx   ... View more

Hi @Mary60    So sorry that you had such a bad reaction to chemo, I really feel for you. Try to be strong, your chemo team will work out an alternative for you. Thinking of you Cindi xx ... View more

Hi @Richard56 , I'm feeling pretty good today, think my partner & I will be going bush walking, it's nice sunny weather, I like being around nature and find that in the bush there are lots of birds you never see anymore in backyards. I DO understand about the feelings, I too do that. It's hard isn't it. I think "why me?" I had breast cancer last year though so I came to terms with that, so maybe this cancer is easier for me to accept? but still think it's unfair, as this bladder cancer is nothing to do with my breast cancer last year, which they got in time. Hope you're healing well, I think you'll find yourself healing quickly because if fit beforehand really helps I found. When you're up to it, try walking a little, doing anything that makes you happy, also when you see your Oncologist maybe ask him if he knows of any support groups down there you could go to? that may help you a lot, or like I've seen on here a lot, call the cancer council and ask them. There's nothing much up here like that, not like if you have breast cancer, seems to be a lot of support for them. Our cancer is probably more rare than BC. I'm here for you anyway, rant and rave as much as you like, I hear you and understand. Shame you're not in Sydney, we could've met up and talked it all through together. But we can talk though this forum anyway😊 Try to do something that makes you happy, I hope it's sunny in Victoria for you. 😘 xx ... View more

Hi @greg57 , I'm going ok at the moment thanks, I'm usually knocked around for the first at least week after my double chemo. Lovely sunny day today so going off walking , maybe in the bush. It's good to get out. xx ... View more

Hi @Jennifer66  Sorry I hadn't read all your messages when replying then, can you tell me please what your Onc said about it spreading through the body if it's broken through the muscle and into fat? Thanks, xx ... View more

Hi @Jennifer66 , I'm in Sydney NSW. You're in Victoria aren't you? Don't get me wrong, my chemo isn't all bad, it's only for the week after the double dose that knocks me around, I can cope and I WILL. I'm determined to stick it out. It's mainly the Carboplatin that my body doesn't like and the steroids given with it. I know a woman who had breast cancer last year who had the strongest  chemo and sailed through. So if one can handle the steroids which help stop the nausea and vomiting, it shouldn't be bad, but I can't tolerate them much as they cause me to have screaming tinnitus in my ears, and make me spin out too much. My treatment has to be tweaked. It affects everyone differently. So I hope I haven't put anyone off. I had a large aggressive tumor in the lining of the right Ureter, up near the kidney , it had broken through into the muscle and fat, but hadn't reached the lymph nodes, the chemo is to mop up any escaped microscopic bit of cancer that may have gone into the bladder . I don't know why it's called bladder cancer, but that's what they said. I'm going to ask for more details next Onc visit which will be just before my next big chemo day, in 2 weeks time.In the mean time, my side affects aren't too bad right now so I'll be making the best of it, even going back to my gym for some gentle exercise🙂 Ive also not met any females with this sort of cancer, they told me its rare and may be caused from smoking ( I smoked when I was young for about 20 years, but lightly.) Or it could be just from the pollution we all breathe in. Did they tell you why you may have got it? I have a good few questions to ask my Onc next time I see him. xx💙😘 ... View more

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