I am trying hard to praise the NHS on this one but even the Consultant is stumped on treatment.

I have a rare bladder condition that I really need to talk about back in 2011 I was diagnosed with  Keratinizing Squamous Metaplasia of the bladder it is a rare I was told and leads to Squamous cell carcinoma which is invasive.

So I have had a tumour since April 2018 and quiet some weeks past treatment I have had cystoscopy, biopsy, CT Scans one might think yes plenty of imaging but whilst they confirm a tumour they cannot grade it or at least not willing to tell me

Today I went for what I thought was an MDT Meeting to discuss treatment but was told because I am now doing if not a better term gassing via my penis so they need another CT scan

All the while I am in pain with no adequate painkillers that work I need ‎opioid drugs and not paracetamol based ones that only work for a couple of hours I also need antibiotics again as the urine is strong cloudy and smelly but despite asking they where not forthcoming.

I lost a lot of weight which the specialist nurse picked up on bless her and tired fatigued coping with urinary retention of which the UTI is not helping hence the antibiotics needed.

Is getting cancer treatment really this hard? because from what I have read and believe me put in a lot of research on this since 2011 is a radical cystectomy and urine diversion via Stoma.

Why is it taking so long and why are targets being missed something does not add up

Looks like I will now have to go back to my GP so he can get the lowdown on what is going on but that should not need to be the case .

Sorry after today am feeling pretty low and my wife is in pieces over this, she has been a gem throughout juggling work with my appointments of which their has been many since end of April.

So as it stands another CT Scan on Monday and back to the consultant on Thursday were I hope the MDT discussion and some firm answers will be forthcoming but will refer to GP tomorrow hopefully he can phone them to see what is what

Regards

 

 

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