Hi everyone and sorry you are reading this as you will have cancer like myself, I have had Bladder Cancer for over a year now and after the initial diagnosis and removal of tumor plus lots of other high grade cancer C.I.S spots plus Imunatheropy treatment (BCG) I have been Cancer free for the last two Cystoscopies(test) so my "Journey" consists of maintenance BCG and Cystoscopies. Well as you will all know and it's my belief that it's not having Cancer that is the worst part of Cancer but it's waiting for Doctors & hospital appointments that has been my biggest worry this last twelve months, I know when I should be having tests or procedures as they are clearly defined in my case but as I live in Hervey Bay QLD I need to go to Brisbane for Cystoscopy(test) and BCG treatment in the Bay which is great but the letters to confirm the appointments don't arrive till two weeks prior which is a gap of three months without any contact and I need some other tests done prior to going for a Cystoscopy in Brisbane. I must admit I am still happy to be walking the planet and the teams at the two hospitals do a great job but it's very frustrating, I hope all is well with you all and don't get to dispondent but it is great to get these things off your chest. The forum is a great way of talking to people with similar cancers who can pass on their ways of dealing with individual cancers. My own advise to all is ask loads of questions and write the answers down, we get very used to medical terms and google is great for finding out whats wrong.
Love to all
Hi @Paul_D and welcome back to the community!
Good to hear your last two cystoscopies have shown cancer free results, that must be a relief. I can understand how frustrating it is for you waiting for the letters to confirm your appointments, is there any way you can maintain contact with them, even if it's just a quick phone call during that 3 month period?
You are right though, this forum is a fantastic way for unloading and being amongst people who have been through similar experiences to your own. This is a peer support community, which means we all help out each other, even if it's just a quick how are you going or a suggestion as to something someone can try.
I do hope that this means we will see more of you?
Thanks Kate and yes I will try and get online a bit more, I have made use of the Bladder Cancer Canada forum a lot in the last 12 months before this forum was upgraded. It's a very good way of Bladder Cancer sufferers swapping stories for our own particular cancer, also one of the ladies in Galgery who is writing a book about Bladder Cancer (BC) has made use of some of my experiences in Australia as BC is treated in a slightly different way in North America and Canada. I do have a Urology Liaison nurse in both hospitals I attend but I think they confuse me and each other most of the time, one I see face to face once a month as well. One piece of advise to all cancer sufferers is join a cancer support group like we have at Hervey Bay Cancer Clinic so you can meet fellow patients, it can be a very humbling experience. Some of our group have thankfully lived through so much and have a positive outlook on life that keeps them going whatever. Thats it for now Kate and thanks for replying and I will join in the fun more often.
Love & Best Wishes to all.
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