Less than 24 hours to go

So how did we get here?

1 Visit to the Doctors
1 Flexible Cystoscopy & consultation/diagnosis
1 TURBT and biopsies
1 Intravenous Urogram (IVU) or intravenous Pyelogram (IVP)
1 Re-TURBT and Biopsies
6 BCGs
1 Rigid Cystoscopy
6 BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy

7 Consultations + visits to GPs when required.
5 Pre-assessments

Of all the procedures, in three cases I was catheterised overnight or longer - the 2 TURBT for 2 nights and the last Rigid Cystoscopy overnight.

A total of 24 BCG, Immunotherapy Treatments - all full dose and each involves the insertion of a small catheter (no local anaesthetic) to instill the BCG and between 24 and 48 hours side effects. For 6 -8 hours after the procedure, the bathroom at home is treated as a hazardous area and is subjected to bleaching and cleaning procedures after passing the BCG out of your bladder.

Of the side effects I had the first few visits to the Hospital saw me get a nasty series of "heat" rashes from the beds and also that both operations and recoveries were on some of the hottest days of the year. The BCGs varied from nothing to complete agony and searing pain to Flu like symptoms, to bones aching and cramps, fevers and chills and anything in between. However, I was told it would be worse than that so in a way I felt that I'd got away mildly as many never go the full course!!

The Silver lining is that we caught my high blood pressure and I am on treatment for that which in a way, much as I hate drugs of any kind, means that I get checked regularly for that and continue to be monitored - which is no bad thing.

Diet - that has changed a bit but I was never one for fast food or anything other than reasonable balanced diet. I now err more towards vegetables and fruit but I'm not freaky about it but did get so at one point about 18 months ago. Other changes. I try every day to have a pro-biotic and prebiotic and use one of those yoghurt drinks. It helps your immune system and there are some reports that it assists during immunotherapy treatment and hence I started then and haven't stopped.

I've cut down on cholesterol but my score on the door was 4 for that a year ago and I guess it will be less this time.

I have done more exercise but haven't for a while mainly I didn't feel great after the last lot of BCG and set myself back after the previous operation and set myself off bleeding again! I will get back to exercising regularly. When I am not laid up as I am at the moment I walk about 3 miles a day to and from the stations at both ends of my journey.

The list above has been since July 2006 - so 30 months of this. That's an Operation every 5 months. A BCG treatment almost every month (24 of them).

It feels to me to have been full on and yet between each set of treatments was a 3month gap before the operation. During Maintenance you had 3 BCGs, followed by 9 weeks in between, then another 3 then the 3 month wait for the operation. It is strange though how it feels you are never free from it and it is great when you can forget it and distract yourself from it.

The amazing thing is that it isn't painful to have bladder cancer. What IS painful are the things they do to you. Painful and uncomfortable. In addition, there's the bit that "messes with your head". That isn't painful but it does contribute towards the way you feel and respond to cancer. If you have a broken leg - you can see it, it is in plaster or some sort of cast, you hobble around on crutches, they take the cast off, you can walk and after a while you forget about it. Your mind doesn't keep wondering if the break in your leg is going to spread across your body or that it is going to get worse, or that they will have to cut your leg off or build you a new leg. In a way that is the added ingredient you don't get with common ailments that you get with cancer.

So - where is all this leading? Well just a retrospective of how I got from there to here and what tomorrow means. I'm hoping it means no more of the above although I imagine it means flexible cystoscopies for a long period to come to follow up and make sure all is OK.

But here is the rub. I should be clear. If I am, I would have been clear officially since November 2007. Yes, 14 months. Unofficially, I would have been clear for almost 18 months. In Bladder Cancer terms, the longer you are clear, the less chance of a recurrence there is. But - and here is the sobering bit - it can recur, it can recur many years later and even though statically I'm on the good side of those stats - age and effectiveness of treatment and recurrence, I did have a high grade tumour in the first place. A clear tomorrow is a major step forward but I still live with the knowledge that I'll need long term observation and follow up and may not be out of it yet!