Hi Cindi54 so good you went through chemo a lot better I hope this week goes well for you Im not really sure how lymphovasular is bladder cancer I haven’t seen or heard that anywhere but as bladder cancer predominantly a male cancer good to talk with a female  who also has bladder cancer  I spoke with my professor today and he is sending me some info on mitomycin hot chemo.  I understand hot chemo is very expensive and as only a few places in Australia  do it, therefore not that common. I don’t want to go through it as a bandaid solution as the chemo has to reach and go into my ureter and there  is no guarantee this will happen, as my professor has told me gold standard would be a total Cystectomy and I  do realise this is what I should be going with as a Highgrade T1G3 and as I have been told multiple times my case has been very complex and complicated. I have a stent in my ureter which I have changed every very months, I have gone through 8 surgeries since December 2022 of TURBT uterscopy biopsies Cystoscopy. 12 rounds of BCG and 3 of intravesical chemo, which is how bladder cancer is treated with chemo and if I ever thought I was going to die it was when two days after my third chemo I came down with pneumonia when I was so sick  we are going away so in a couple of weeks and when we are back I  will need to make a decision as if I go with hot chemo I need to have another TURBT surgery to remove the tumours, to see if I’m even suitable to go with the hot chemo  I wish you good thoughts your treatments have you feeling a lot better  ... View more

Hi Cindi54 I did do 3 rounds of intravesical gemcitanine with docetaxel chemo last November with no side affects, the hot chemo is not common and only a few places do it in Australia, although not a problem for me as Royal Melbourne is one of them, there is not much information on hot chemo and I need to know more, I had 12 treatments of BCG immunotherapy with lots of information on this. I have bladder cancer along with rare ureter cancer and as I’m only on two options now I need to know more  ... View more

Hi Cindi54 intravesical is directly into bladder via a catheter and drained out again after two hours, as not in your body a reason for no side affects, hot chemo same way and then heated up, but I’m not so sure I will go ahead with this.  I'm so sorry you are having such terrible side affects, certainly doesn’t make treatments easy to go through  I do give you my kind thoughts and wish you well Jennifer      ... View more

Hi Cindi54 I had Gemcitainine and Docetaxel  used together intravesical for bladder cancel  3 treatments and had no side affects what so ever,  as this is only in bladder it does not affect any other part of your body. Don’t know if this helpful at all    ... View more

Hi BadWolf73 absolutely family and friends come along for the free ride, unfortunately many soon jump  off !!! ... View more

Hi Julia  so sorry that you will not receive any benefits, nothing seems to be ever designed to help people who could do with  some cost savings , and I know exactly what you mean about this , journey, it does  go on and on with expenses, maybe we could get a smile without the expenses of the flight and the hassles that it can even bring  ... View more

Hi Deadalready88 my thoughts with you, and I feel with you, friends and family will never really understand what we are going through, no matter what they say, they are are all doing there best and I do acknowledge that. I had decided I would go through major surgery for my bladder and rare ureter cancer, and after I got the details and cost of my surgery on Friday, all has changed. My body is going to be mutilated as far as I’m concerned and I will not be going through this, so have decided I will not be having surgery. Have decided to go with a third opinion and my GP is now doing a report for referral to public system at Peter MacCallum, as I’m not sick have little pain I’m simply going to try to go on with life, I have a stent in my ureter which I know will have to be changed again in a matter of a month or two, I feel I have been very let down and I’m at a stage of no more, so will wait to hear from public system as I do know the major system with what has been put in writing will never happen  ... View more

Hi Cleomary    you have to disclose all medical conditions for travel insurance, I have just traveled and could not get travel insurance to cover my cancer, you get insurance to cover everything else but of course if anything happens regardless the  insurance company will always say it is cancer related, and if you do get insurance to cover cancer the premium is so expensive as it is an extra cost, you can try Medibank Private they do travel insurance  ... View more

So very true, how do we cope with our cancer diagnosis, it is hard and twelve months on emotionally I am a wreck, I am well , have gone through all my treatments and six overnight hospital  procedures with only needing Panadol for pain relief  No matter how you feel that cancer word  is always running wild in your head, it haunts us non stop and like you jigsaw puzzles are a great distraction and I would say my best distraction  ... View more