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
A little update, I still have my stent in as they booked it removal on Mon 19th of August the week I was going to Cornwall on the sat before.
I rang up and spoke to someone who said no problem I will email the team and cancel the appointment. And request it to be rescheduled.
I went to Watergate Bay and had a lovely week away even though the weather wasn't the greatest.
I got home to post including a letter for the 19th August appointment and also a letter for my first Camera bladder investigation. No rebook of the stent removal.
I also had a letter from my doctors introducing my Cancer champion who would contact me regarding making an appointment to speak to a doctor or clinician of my choice, that letter was son the NHS app before I went away so I was supposed to be getting a call last week. I haven't had any missed calls last week. It did say I do not need to contact them they will contact me but so far only the letter. It says they are there at all times to help me navigate my journey and to talk about any help available etc.
I've had some pain which I assume is to do with the stent still when urinating but not that bad to worry too much or get a doctor's appointment on the meantime. If I don't drink enough or do any anything even slightly strenuous I still get bloody urine, but the consultant and CNS both said blood is normal up to 6 to 8 weeks so hoping that goes away soon.
So I need to contact the hospital and see if they will remove the stent at the same time as the bladder investigation or if that means another trip and appointment to Habe that out finally, and tbh I can't wait to get the damn thing out.
I'm back at work now and struggling a little bit as the stent seems to cause me pain, climbing in and out the truck and hooking up and dropping trailers, work are being fairly decent and accommodating me where possible but not giving me jobs that are too strenuous at the moment or trying to avoid me being given multiple trailer drop and swaps where possible.
So that's where i'm at currently and hoping to be back to normal soon and hope the investigation goes well.
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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.
Oh and this is week 6 after my TURBT, Operation.
And I have just been woken by Linda the Cancer champion from the doctors and have an appoitment on the 6th Sept to speak to Craig and discuss my Cancer care review.
Linda also said to speak to her if I need anything as sometimes it's often a quicker way to get things done at the doctor's.
________________
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.
