
Fight bunny seen in Cologne Ehrenfeld – photo by (c) howlzap Cologne
It’s my cancerversary on 13 January – it’s been seven years now “fighting” non-invasive bladdercancer with the help of a team of experts and loved ones – it can’t be done without either!
Unfortunately, it’s returned a total of 6 times usually low grade G1 or 2 but recently also with a (tiny) carcinoma in situ (cis) which is high grade.
It’s been 12 operations – so called transurethral resection of bladder tumour (TURBT) it means they operate through the urethra – (where the pee comes out).
It’s been 12 nerve racking waits for results (usually 3 days as the hospital has a lab except 2020 when it was 10 days). It’s been 12 catheters after the operations from 3 to 7 days depending.
It’s been 2 bladder perforations – this always means that the catheter stays in longer.
It’s been 1 ureter stent because a tumour was too close to the opening – that stayed in for 8 weeks.
It’s been 42 Mitomycin C bladder instillations over three and a half years.
It’s been 24 cystocopies 17 “all clear” or no evidence of disease (NED) and 6 with tumours visible on the tv screen. And the most recent ones showing red patches needing further investigation.
It’s been 7 EMDA Mitomycin C bladder instillations in 2020 and 6 in 2021.
It’s been 6 BCG installations.
It’s been 2 urographies, an MRI and 3 CT scans to examine the kidneys and the ureter, all all clear.
It’s been countless examinations, blood tests and doctors’ appointments and many, many hours waiting.
It’s been some heart wrenching phone calls and conversations with loved ones.
It’s been countless deep hugs of support both real and virtual.
It’s been some amazing messages, cards, calls, flowers, visits and smiles.
It’s been many many deep breaths and will take many many more.
It’s not only cancer we’ve been fighting I’ve also been fighting with myself. Fighting to accept the fact that this kind of cancer returns yet being active and doing as much as I can to prevent it returning. A delicate balance I’m still struggling with.
Deep breaths….I’ll keep you posted. Updated 13 January 2023
Updated 15 January 2021
I’ll be keeping the faith and continuing with EMDA Mitomycin instillations every month for 6 at least and 3 monthly check ups.
It’s good to see you found a way to vent a bit of your frustration and sadness and anger for this horrible disease. I feel so sorry for everything you have to go through. You are so brave. You don’t deserve this (nobody does off course) and it’s just not fair. I wish you all the courage and love in the world for friday and beyond, I hope things will get better from now on so you can look back on this time soon and realize how much better everything has gotten since… We’re thinking of you… Love, Leen. xx
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Thank you Leen 💜xx
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You’re my girl. Not only have you gone through this journey, you’ve gone through it with courage and bravado. Never once a peep of self-pity, never hangin your head. If you have, you covered it up well and had enough of that extra “sparkle” to shine onto the rest of us who sometimes feel helpless with your battle. You’re my goddess and heroine. We’ll all kick this to the curb once and for all. Bet your sparkly socks on it xxxxx
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Thanks Jenni-lyn 🙏 all the best to you
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Hey Jennifer I didn’t recognize you earlier and was puzzled that someone I didn’t know was soo amazing and knew about my sparkly socks! Now “alles klar” Thank you for your support and love 💗
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Send you love and courage. You must keep strong and believe. I cross my fingers and hope. XXX 🍀❤
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Thank you Joke 🙏💜
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It’s truly a nice and helpful piece of information. I’m happy that you simply
shared this useful info with us. Please stay us
up to date like this. Thank you for sharing.
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Great blog you have here but I was wondering if you knew of
any discussion boards that cover the same topics talked about
in this article? I’d really like to be a part of community
where I can get opinions from other experienced individuals that share the same interest.
If you have any suggestions, please let me know.
Many thanks!
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Hi
So glad you found it useful. For discussion borads check out https://bladdergraffiti.wordpress.com/2019/01/20/wisdom-of-others/
Thanks for reading and stay well.
Best bladder wishes
bg
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Greetings! Very useful advice within this post!
It is the little changes that will make the biggest changes.
Many thanks for sharing!
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Thank you!
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Wow that was unusual. I just wrote an very long comment but after I
clicked submit my comment didn’t appear. Grrrr…
well I’m not writing all that over again. Regardless, just wanted to say excellent blog!
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