This is a diary of events surrounding the discovery that I have haematuria, blood in the pee, first noted sometime towards the end of February, 2008. (See Archive)

Initially, having undergone all ’standard’ non-invasive procedures, bladder cancer was not be ruled out as I did not submit to a cystoscopy examination.

My efforts since have largely been on discovering any bladder anomalies and minimising the symptoms. A cytology examination that discovered a small group of epithelial cells in a urine test is the now the focal point. The results were described as highly suspicious of ‘Transitional Cell Carcinoma’

31st August
Definitely signs of infection, so I will test for the next two weeks and note the tingling feeling. As I’ve had this for a few weeks there is no indication that it will go away.
Today I noticed my pee came out ‘faster’ after a while, indicative of a blockage. As previously there were no signs of prostate enlargement, the possibility may be stones that cause bleeding and thereby an infection occurs, or other debris possibly from cysts or polyps that cause blockage and there is some decay in them resulting in infection. However the tingling implies the infection is in the walls of the urinary tract as infection in debris remains would be washed out easier and not necessarily be a continuous tingling sensation to the tract.

29th August
The new sticks arrived today and I used one to see if i had an infection. The Leukocytes may just have shown a small colouring but the nitrite was zero.

23rd to 27th August
Have bought 25 sticks that measure Leukocytes and Nitrites to check for infection. For the last few weeks I’ve had a more of a tingling sensation that twinges and it often seems in the urinary tract through the penis. It doesn’t approach stinging.

Must call Derriford for the cytology samples and then call Shelly.

21st and 22nd August
Used Uritest sticks not Mission. They may show up more haem??

7th Aug 18:11 Well I’ve quite a lot to write up sometime.

• About the cytology update, especially the offer of help from Shelly
• The twinges have eased off and
• I didn’t do a urine test yesterday so did an estimate
• Today was the first day with no marker for a while

Well the above points are more cheery

7th Aug 18:11 Sadly a haem marker I’m sure, very slight discolour ation on some edges. Had I had more been up and about earlier and had drunk more it may not have been noticed

Sadly there is a slight haem marker on my first day. Do bang goes this month being exempt. However it does mean I don’t have to worry about being perfect, and I did do some strenuous work yesterday evening and am about to do so for some days. Oh well!

1st Aug
Also noteworthy is that I have had some light twinges for maybe a couple of weeks since.

I will test again later as the graph shows daily average

Update :- 28th Aug
Spoke to Legal Laura and have received an email with preparation details etc. Must find out what the technical issues are.

Update :- 27th Aug
I have called Legal Laura (Derriford) and have been they will provide a microscope so I can view the slides at the Legal Dept. Si I will see if a) I can get Shelly to come and b) if I can get a camera shot of the slides. For the second option I will email Laura to find out the make and model of the microscope. I will also ask for the parameters that were use in preparing the slides. -:- 20:30 Spoke to Shelly and will see her Saturday maybe.

9th July
It becoming difficult to write up what is happening as the larger part of my investigations reveal a complete lack of understanding or support of my being.
Most of the health professionals either blatantly bully me into trying to accept their advice or exaggerate their views so much that they are in essence lying to maintain their status of authority and try to undermine my efforts to understand what is happening with my body by claiming they are the experts and I couldn’t understand.

A few examples are:
Bullying: Using the word ‘we’ or ‘us’ to persuade me that I should do what ‘we’ want or that which is good for ‘us’. They try to maintain their position of authority at any cost. So someone who questions them is given short shrift. I am advised to do want is conventional and there is little room to consider other options. What other options there are, are either not used, not available or unknown to the ‘professionals’

It has taken me 3 months to get a cytology test, that wasn’t offered, even though they knew I didn’t want cystoscopy. Although I told my GP I didn’t want cystoscopy, it’s likely she didn’t transfer that to the urologist so I was expected to conform. When I didn’t ‘they’ twist what was said to focus on that I didn’t accept their offering: when I shouldn’t have been put in the position to reject something I had already said I didn’t want. - No further action was their summary.

So three months later I have the cystoscopy results which indicate transition cell carcinoma. That it may have been more evident or worse three months ago we will never know, but I would like to continue my investigations and have another cystoscopy in 10 weeks, for example.

I am aware that they may refuse as I am not playing ball. So I have investigated the possibility of doing it myself.

I also want to see the slides myself and in doing so will learn about what I am looking at, and thence could analyse my own samples.

To this end I have contacted the Legal Dept. to access the slide and the Cytology Dept. for some explanation.

I now know that the Cytology dept. only prepared the slides which were then passed to a consultant.

On questioning the cytology dept. about doing my own analysis I was told I would be wasting thousands of pounds on a good microscope as I wouldn’t know what I was looking at. Once I found a suitable source for the scope I spoke again to cytology and to the consultant and received much the same response. However the consultant neil.roberston@phnt.swets.nhs.uk 01752 792359 was helpful in explaining a bit.

Neil Robertson explained that cells and blood were dislodged on passing urine due to trauma and that the cancer cells were groups as they were parts of an intrusion in the flow, whereas normal debris were single cells from the smoother inner layer of transitional cells.

On further queries made at the Cytolgy dept., during a visit I was told that another reason I could not do it myself is that the urine would have to centrifuged and that the minimal cost of that would be £6000.

Those who were reluctant to sell me a microscope thinking I wouldn’t be able to suss things also said I couldn’t source a centrifuge as the vendors wouldn’t sell to an individual. However I have since sourced one for under £200.

So my next step is to Dr M and ask for information on

1. Access to my slides
2. A proper description of what was actually seen
3. Another cytology test in 10 weeks
4. How the centrifuge is done, what G force ( 0.000001118 x r x s² )
   Where r is the radius in millimetres and s is the rotational speed in rpm
   instructables.com
5. How is the sample extracted etc
6. Can the urine just be filtered?
7. Find other visual examples of TCC

Exageration:

I’m getting more used to the idea that if I have twinges then I will see blood in urine soon after.

Depth of tinge per depth of twinge is a query?

The very red wine at Derriford last wasn’t signaled by any memorable twinge, but then I was walking and that seems to assuage twinging as I feel my body moving. Sitting is a twinge spotting place.

1. Why wasn’t the U-scan bladder results in the report to the urologist Dr Hammonds.

2. Did Dr H see the U-scans or X-ray

3. Who actually decided on the wording of the report as I wasn’t told that I might have cancer, only that the cystoscopy was used to look for polyps, which I was told can be benign anyway.

4. Why wasn’t I offered a cytology test, especially as I said I didn’t want the discomfort of a cystoscopy.

A cytology test would seem to as useful in the early stages of expected cancer, but then their was no expectation. The cystoscopy was to look around, to see if their was anything visible.

A cytology will examine expelled cells and not only note any cancerous cells but will tell where the blood is coming from. Clearly a better job than a cystoscopy.

If cancer cells are found and blood cells from the bladder then it would give cause to consider using a cystoscopy to see if there was anything visible, but not as a prime investigation device.

Will call Dr M and see if she wants to se the scans, an can explain some of it to me and discuss the issues.

5. Why was the renal exam not carried out when I was told there would be one.

6. On a slightly different issue, that of the IT dept. Why provide the images in an unrecognisable format and be forced to use the provide viewer when better views can be obtained by making the file recognisable and using common image viewers available to all PC’s

7. How can a small hernia be ruled out?

8. What can the mental and physical weaknesses relate to just before and after I pee blood.

9. On the x-ray which is not a negative using a digital receiver, what are the light patches that let the light through??

10. How long dose it take for the cancerous growths to establish themselves to a point where they are not easily destroyed by the immune system.

11. Does the size of the polyps give an indication how old they are and thereby a start date and thereby an period of weak immune system.

12. If I have polyps how are they removed?

13. What after treatment is then envisioned?

Although there are many reasons why testicles may ache, a hernia is the one I’m considering. For information on a range of reasons see Testicle pain.

I have thought about this before and mentioned it in my ignorance. Dr Hammonds explained it is swelling in the intestines. Well I have looked it up and it seems a bit more worrying than that. It more where a piece of it breaks through the surrounding bag, often to to careless exertion. Well that’s me.

It can cause pain in the left testicle, mostly and the abdomen, which is what I have. If it is an ‘Inguinal hernia’ I can see how that puts pressure on the bladder and explains why the ache is worse after I eat and feel bloated in my lower abdomen.

This is a picture of this type of strain Yuk!

Inguinal hernia