Re: Bladder cancer TCC Hi Guys', Thanks' for all your support and well wishes. I returned from my urologist with bad news. Nothing that wasn't expected. I asked my urologist how much time I had. He said 6 months without treatment or 12 months with treatment. I felt sorry for him, to be put in a position of telling someone their terminal, not a good position to be in. He looked very uncomfortable about it. I'll be more interested in my oncologist opinion on what time I have. I see him on the 30th March, about starting chemotherapy & or radiation. As you all know, cancer has a mind of it's own. I've been reading my bible, it's helping me a lot mentally. What's the first thing you do when your planning a holiday. You read the brochures on where your going. That's what I'm doing, reading the brochure on my trip. I've written on the side of my bible. "Dads' Travel Brochure". Merkel (wife) & I are handling it well. We went out dancing on Friday & Saturday night. We do a lot of dancing, swing, jive, rock'n'roll & ballroom. We won Mr & Mrs Rock'n'Roll a few years back. I play guitar & bass, music gives me a lot of pleasure. We have a son, daughter and four grandchildren. I think it's harder on the children. Our son said, when I lose my hair he's going to buy me one of those plastic Elvis Presley wigs to go dancing in. Where would we be without humour. Wazza
16 Comments
dunedigger
Contributor
Sorry to hear of your diagnosis and prognosis. Don't take the diagnosis lying down. Fight it and fight it again. Chemo will give you time. Oncologist's give you a timeline worst case, and by law must be honest, but with a change in lifestyle and diet you can prolong or even overcome it. However, recovery from cancer is a psychological battle so don't let the oncologist 'point the bone at you'. Get out there and go for it, never say . . . . . . "I give up" Dunedigger
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Merkel
Contributor
Hi Everyone, This is an update on Wazza's visit to his oncologist today. He will be starting chemotherapy in a couple of weeks. The first week, day 1 Cisplatin and Gemcitabine, second week day 8 & third week day 15 Gemcitabine only, followed by a week of no treatment. Then the cycle starts again for 6 months. There are too many lymph nodes involved to have radiation. Take care, Merkel
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Livey
Not applicable
HI Take care..you are on the prayer list at the Salvation Army, GOD BE WITH YOU.. LIVE LAUGH LOVE Best Wishes to you and Family Livey
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Wazza
Occasional Contributor
Hi Dunedigger & Livey, thanks' for your kind support. On the prayer list at the Salvation Army. WOW! How very thoughtful of you. I'll be starting my Chemo juice on the 16th April, staying overnight to have my kidneys flushed out. I've been told this juice can attack the kidneys. We had an overseas trip booked leaving on the 15th April, arriving In San Francisco on the 16th April, for a few days, then flying to Mexico for a few days, then to Los Angeles for a Hollywood tour, then on a cruise of Alaska, then back to Vancouver for a few days, then of on a different cruise of Alaska, Home on the 17 May. Instead, I'll be spending it in the chemo ward. It happens. Wazza
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Sailor
Deceased
Hi Wazza and Merkel Yep it is a good road map. One of the best bits of advice I got was to read the Psalms, particularly the Psalms of Lament - 60 % of the Psalms are laments. Sometimes we need to lament what is happening to us. Being positive is OK but the laments tell us that is is OK to howl and ask those awkward questions. Hang in their - it is a tugh journey ahead but you have a good road map. Sailor
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Not applicable
Hi all, Thanks for the updates re; wazza. I hope he is feeling okay. I also had cisplatin & it can be damamging to the kidneys so they give lots of IV fluids before and after the chemo & of course encourage you to drink lots of water. I really couldnt stomach just plain water so used to drink really cold natural sparkling mineral water with heaps of ice and some lime cordial. Really refreshing and helps to keep the fluids up. Hope all goes well for the first treatment. Butterfly
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Sailor
Deceased
G'day Wazza and Merkel Thanks for the update. It looks like a pretty standard chemotherapy routine that has been used for a lot of patients so they should know how to handle the unwanted side effects. Hope that they are not too bad. Fortunately it is not cisplatin over several weeks - that must have been brutal. Hope it all works and all goes well for both of you. Cheers Sailor
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Wazza
Occasional Contributor
Hi everyone, I'm sending you a message from Wazza & a million thank yous for your support. Wazz had his first dose of chemo on Thursday, Cisplatin & Gemcitabine. He has another dose of Gemcitabine next week & the week after, a week off, then starts the cycle all over again for six cycles. His chemo should finish at the end of September. He's feeling a little dizzy & nausea,not too bad considering what's been pumped into him. I cooked him a lovely meal last night, when he sat down to eat he had a fit of hiccups & couldn't eat. Your all in our thoughts, Merkel
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Not applicable
Hi Merkel & Wazza, Glad to hear the first one is over and done with. It seems like so much that goes through your body with the cisplatin prob because of all the fluids & magnesium. I also suffered from the dizziness & the nausea, they can play around with the anti nausea meds until they get it right so that you're not suffering from the nausea longer than a few hours. The one bit of advice I can give about the cisplatin is to make sure you do not have a warm to hot bath or shower for the first 24 hours after the chemo, I made that mistake to help with the aches & it made me extremely ill. So even though it may seem like it will make you feel better, you need to keep your temp down and keep up the fluids and of course a hot bath doesnt help with that. Hope you are starting to feel a little better today and please keep us updated. Take care, both of you.
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Merkel
Contributor
Hi All, An update on Wazza. He's not handling chemo very well, the Cisplatin & Gemcitabine is knocking him around. He hadn't eat properly for the first seven days, lost weight. At the hospital yesterday he asked for a hamburger, he said it was great & he felt good. Yesterday he only had Gemcitabine, we'll see how he goes today, next week Gemcitabine again that will be the end of his first cycle, another five to go. His blood test yesterday showed something wrong with his kidneys, he was sent for an ultrasound. I asked for a copy of the report to be sent to our GP so we can have a copy for our files. For a big strong man, chemo is really knocking him around. I think it's the cisplatin that's doing the most damage. Butterfly has been a great help to us answering a lot of our questions and putting our mind at ease. We take our hat off to you Butterfly, to have had seven rounds of cisplatin in seven week's and look at you now a picture of health. Thank you all for the support, that's what this site is all about helping one another. Merkel
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admin_one
Contributor
Hi Merkel, Thanks for the update. Glad that you are finding support in our community. Please keep on letting us know how Wazza is doing. Best wishes
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Not applicable
Hi Merkel, You're very welcome, although I havent done anything to help. I wish I could do more.... like find a CURE!! Cisplatin is so damaging to the kidneys so Im sure they will sort that out with some extra fluids to help flush them out. I understand how he feels and it is just a terrible thing to have to go through but Im sure the Doctors will find the right balance for him & maybe they might have to try something other than cisplatin. Thankyou for the update. My thoughts are with you both. Butterfly
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Merkel
Contributor
Hi Sailor, We hope your travelling OK & all's well with you. Is that your yacht in your photo. It looks very impressive. Wazza would like to thank you for your email. We appreciated the information you sent, it was a great help. I apologise for Wazza not answering you personally, he's still not up to it. He's starting to eat more which is a good sign. Take Care, Merkel & Wazza
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Merkel
Contributor
Hi Butterfly, That's a beautiful picture on your Blog. Merkel
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Merkel
Contributor
Hi All, I would like to run something past you all. When Wazza had bleeding from his neobladder, his GP sent him for an ultrasound. While having his ultrasound this was how the conversation went between Wazza & the ultrasound operator. After a few minutes of the ultrasound going over his abdomen. Wazza said to the ultrasound operator. Wazza: How does it look in there. Operator: Kidneys look good, your new bladder looks OK, your prostate looks good. Wazza: I don't have prostate. Operator: What am I looking at then. Operator calls doctor in, they probe a little more. Doctor books Wazza in for a CT scan. Wazza has a CT scan some days later. CT scan report says. 38mm x 37mm x 36mm mass in the right hemipelvis between the created bladder and the rectum is consistent with tumour recurrence of metastatic lymphadenopathy. The tumour has grown bigger since that CT scan. A CT scan he had six months earlier said, all clear. Was that because they thought he had a prostate? Do they ever read the forms you fill out before you have scans saying what operations you've had & what bits are missing. If Wazza hadn't asked the ultrasound operator how it was in there, he would have received an all clear again. By the time it was realised it was a tumour not his prostate, Wazza's tumour had penetrated through his new neobladder. Could this have been avoided if they realised he didn't have a prostate earlier? These questions & a lot more will haunt me. If his tumour had of been picked up earlier, it certainly would have given him a lot more time with treatment. Not that he would have been cured. Another one falls through the cracks. We know you can be clear of cancer one day & all over you the next. What's done is done. Moving on. Take care Merkel
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Not applicable
Hi Merkel, How is Wazza doing? Hope he is feeling a bit better. It's frightening to read your last post about his ct scan & just shows how important it is to be involved and understand what is happening with your own body. I dont really know what to say, I guess these mistakes do happen but it does make me angry to hear about it. My tumour should have been picked up during my pregnancy but was not and I dont know how they missed it. Its taken me a while to get over that thought & I guess be thankful that it was eventually found even though it was 12 months later. Try not to focus on it, I know how hard that is to do. Did you find out the results of Wazza's kidney scan? Maybe just the effects of the chemo. Its just horrible to go through for both of you. You're in my thoughts. Take care Butterfly
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