Hi all just thought I’d say hello and give a brief introduction of where I am at currently.
I had a frank hematuria episode about 7 weeks ago now. Went to the doctors and had various tests done and then had a flexible cystoscopy and a tumour was found in my bladder. Thankfully no spread, lymph nodes were fine etc.
What exactly was checked
Digital rectal exam
Full blood test
Fit test
Urine test
Ultrasound
CT scan with contrast dye
All done within 2 weeks and placed on an urgent operation list.
Timeline of events.
19th June frank hematuria
27th June ultrasound and cystoscopy
19th July TURBT operation.
So I am extremely grateful for the urgency by the doctors and the NHS and aware it is possible many people have much longer waits. It was a bit of a whirlwind of a few weeks tbh.
All my tests came back fine and very normal and I have learnt that generally no news from doctors or hospital usually means it is good news.
A few weeks later and I was in hospital for my TURBT operation which went well.
i had my follow up and was diagnosed as Grade 2 (low) pTa NOMO transitional carcinoma of the bladder. I have a stent in currently as my left ureteric orifice also needed some resection.
I am 46 years old. I am also just over 3 weeks since my TURBT to remove the 10mm tumour which was fully resected. No chemo treatment instilled due to ureteric resection, and advised at this stage it would take 6 instillations to achieve the same effect so not currently advised.
So yeah that’s my introduction sorry and where I'm currently at.
I also want to make it clear that I am pretty lucky and there are a lot of people way worse off than me, and to those my heart and sympathy goes out to you. I went straight to the doctor's after the frank hematuria and it was found nice and early and for now has been removed.
I am absolutely aware of the fact that reoccurrence could well happen and am staring to take steps to help to minimise that risk.
On a sperate note my dad died in 2004 aged 54 of bowel cancer which is hereditary in his family. So I am very aware of how horrible things can be for someone dealing with cancer and also for loved ones as well.
I hope I can maybe also help others here in any way that I can.
Oh and I am very lucky as I have barely spent any time in hospital in my life, I did have croup as a young child and spent some time in hospital in oxygen tents but don't even remember any of that, I broke my ankle in 2010 so was in hospital for that as well.
So again I just want to reiterate that I have actually been very fortunate in life compared to a lot of other people. There is always someone in a way worse off position than yourself no matter how bad things are.
Thanks
Simon
Hi Simc and welcome to this friendly and supportive group. Good to hear you found a very proactive doctor and your follow up treatment has been swift. We know that is not always the case. Sorry to hear you lost your dad at such a young age. Best wishes going forward.
Hi Garviv,
Yes it was pretty rapid to be fair but that was probably down to the fact unlike my dad I explained about the hereditary bowel cancer on his side of the family.
Like I’ve said I feel very fortunate and from reading just a few posts on here I can’t imagine what some people have gone through, and as such makes me feel a bit of a fraud with my relative issues tbh.
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My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all 
Much love and hope to everyone past future and present.
I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.
Thanks Rily.
Yes things were very swift and it was a non invasive 10mm tumour. So very early days still.
But it has been removed for now and will be a waiting game to see if there is a reocurrance of course, I’m under no illusions that removal is the end if it n many cases.
But I also know that sometimes people in the most dire diseases, against all odds can also sometimes make full or almost full recoveries.
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My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all
Much love and hope to everyone past future and present.
I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.
Thanks I have been off work and this week is my last week on sick leave, work have actually been pretty good, I started off just letting managers know what was going on the just started telling a few people I work with. It has helped to just discuss things with people and not hide or bottle it up.
I'm off to Cornwall to join my friends for a week the week after for a little break they are on their way down there now for 2 weeks.
So that will be a nice break away even if fairly short.
I’ve also had a fair bit of time to process things, I was surprised after my 2 week follow up appointment at 3 weeks to be then taken into a room and asked how I was doing mentally etc and given many leaflets and lots of information. I must admit I wasn’t expecting that and not sure if the CNS nurse believe I was doing as well as said I was, but that may be me overthinking things which I do tend to do generally.
It did seem I had been missed off the follow up list as I rand the day before the 2 week deadline and was told they would try and find me an appointment before my holiday, then a call the day before saying can you make it tomorrow at 10 to 10.
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My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all
Much love and hope to everyone past future and present.
I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.
That’s what I was told when I asked why I had no results, usually no news is good news or certainly nothing too severe to be worried about.
It does stand to reason that they are dealing with so many people it would take forever and lots of resources just letting people know it is fine and nothing concerning.
Sorry to hear they couldn’t remove all of your tumour but I wish a positive outcome for you.
There is a saying no news is good news, until you have bad news try not to worry and let it eat you up.
Try to only worry when there is something concrete to worry about, be as optimistic as you can as being positive can have a big effect on your mental health.
I don’t mean burying your head in the sand and things are much easier said than done.
I remember a plaque thing my nan used to have on her mantle piece not wanting to get religious about things but ignoring the religious aspect it as a statement makes sense.
Grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Everyone is different though and what is easier for one won’t be easy for another.
I wish you the most positive outcome and your journey like mine has only just begun.
________________
My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all
Much love and hope to everyone past future and present.
I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.
