Peeing for England or Team GB

I reckon that I'm up for that these days if they include it in the Olympics or Commonwealth Games:

Winter Olympics: Sign your name in the snow? Extra points for crossing all "T"s and dotting all "i"s. People with long names given higher scores. People with Balkan names get extra points with all the extra dots, acutes etc.

In the main Summer games I suppose you could emulate most track and field events:

Speed - 100 metres. Make contestants drink until bursting point, line them up with just one toilet at the end of the track and set them off. False starts to be indicated by a mop?

Pole Vault - oh no - don't even go there.

Marathon, see who can take the longest to urinate continually.

The Relay, shortest time between several visits wins.

Highest, best of three using the high jump apparatus.

Longest distance, best of three attempts. Foul called if dribbling on the Plasticine.

Triple jump. Contestants filled to bursting point and the one toilet in the arena has engaged written on the lock!

Javelin. Best not to even think about that one.

Whilst many of these appear to be similar to games played on the way home from a particularly lively night down the rugby club, it would allow me to do something with my new found skills.

Strange what you think about at 3 in the morning isn't it?

End of the day

Things have gradually got better as I've gone on today and I'm just readying myself for bed. I have probably drunk 5 pints or more of water today and that has been keeping me visiting the toilet. However that is meant to help flush everything through and help things along.

I am hoping that tomorrow I'll be able to get on and do some work as today was a wash out.

Anyway, greatly improved on this time yesterday.

My Day for upsetting people

A friend of mine called today and was one of the ones I haven't told and so went through the "are you sitting down" sort of preamble before explaining where I am and so on.

Anyway, it was funny because I did get an ear hole bashing for "trivialising my condition". Well that told me I suppose :-) He felt that I wasn't paying enough attention to getting well after the latest episodes and that rushing to get back to normality were secondary to getting well in the first place.

I hope that tomorrow I don't upset too many people - I won't have any friends left at this rate :-)

Now I've Upset my Brother

Bless him, he asked me how I was and I told him and he sounded very upset. I forget that people who care about you get upset when you tell them how you feel and what is going on.

I hadn't realised that I might hurt anyone by saying how it actually is. Anyway, I hope that I managed to cheer him up after I caught the fact I'd upset him.

I will have to be careful about that. I try and be matter of fact about what is happening and try (through gritted teeth sometimes) to portray the upsides and the funny side of it. Sometimes being sincere has its downsides obviously.

My family are very good considering the havoc that I have wrought on them with this.

Ouch, Ouch and Double Ouch

That was NOT a good evening.

I got worse and worse after my last post and had to keep dashing to the toilet. Passing blood and bits is fair enough but stinging whilst you are doing so down the length of your penis, well - I don't recommend that to anyone. Gee does it ever sting - enough to swear in many different languages too.

I grabbed some Paracetamol and then followed that up with some Ibuprofen and went to bed. Now for the one they DON'T tell you in any of the books or advice letters. Be prepared to leak quite a bit. Luckily I'd thought of that and spread out some cloths like I did after the operations and I'd suggest you get ready for that. You can't tell you are doing it because you are throbbing or stinging so bad! Definitely one to be aware of.

I was bracing myself for the side effects they did publish - like "Flu like symptoms", "slight bleeding and stinging" - I feel like I've been hit by a truck - no wonder people give up this treatment if it does this to you. As for the Flu like symptoms, they were possibly overshadowed by the other symptoms.

I'm feeling a lot better this morning and able to sit down - yesterday I could stand or lie down only. I'm still going to take myself back off to bed in a minute as I still need to lie down and things are still stinging but all is much more controllable now.

The upside is that this treatment must be working. The downside is the side effects of course. The thing to look forward to is that going through this may get all of the cancer out or at least into a manageable state.

I'm sure that all the blood and bits coming out was the body throwing out the Cancerous bits - lets hope so...

More later - check with your urology nurse or doctor about the side effects - I understand some people get none at all!

Phew - Not quite what I expected

Well - I'm still rushing in and out of the toilet and still stings and still bloody. I find standing or lying down are good but sitting (unless sitting on the loo) seems to put more pressure on!

I'll see what I am like in the morning as I'm going to have to take myself off to bed.

Getting Worse

Yep, Lots of blood and bits now and stings like hell. Going approximately every 15 minutes to the toilet and still need the bleach precautions for another hour or so.

Got to keep telling yourself this is worth going through - not nice seeing all this blood again though for sure - reminds me of early days

Ouch

MMmm, here we go, blood in urine and stinging when passing it too. Also a real stinging right at the end of my Urethra - ouch :-)

It is bearable but uncomfortable. Plenty to drink and I've just grabbed a Paracetamol to see if that helps.

It is a good sign of course but - they say after 4 hours it kicks in and bang on time if not 15 minutes early!

Forgot to share this - from the X-Ray

I said in an earlier post I would share this but forgot so, sorry, and here it is a bit delayed - I bet you are glad you didn't hold your breath though......

When I was shown the X-Ray there was something unusual about it.

Instead of having one pipe between my Kidneys and Bladder on one Kidney there are two pipes.

Now this does not surprise my friends one bit - having been out drinking with me they can tell you that I can be predisposed to drink like a fish and I imagine that this extra pipe was grown with a view to cope with just this sort of eventually.

Asked whether this was Tom Jones Syndrome to have three tubes not two - the Consultant said it's not unusual - well I had to get that old joke in somewhere didn't I!

Curious

One of my friends made me laugh on Saturday.

"who" he asked "initially thought about using something like BCG for Bladder Cancer?" If you think about it, it is pretty strange that anyone would have come up with that sort of lateral thinking and then how about explaining it to the first person you gave it to, or working out how many doses to give and so on. It really is amazing that someone thought of it, developed it and makes it as effective as it is today.

"I'm just going to stick this up your Willy to make you better???"

I remember at school having the most violent reaction to the BCG test because I had already had the vaccine when I was a kid. Perhaps they realised that this reaction was just what they needed.

Anyway - I can say for certain that it is sure working this time - I can feel it!

The 2nd Treatment

Well today it was slightly different. It was a little more uncomfortable with the catheter this time. I believe that is probably because the treatment irritates the hell out of your urethra and that is what gave me the slight discomfort. However it isn't what I'd call painful as such.

I have decided to see if I can take in a stress ball next time. You have to sort of twiddle your toes to take your mind off what they are doing - I keep my eyes closed anyway. The ball would enable me to do something with my hands as well as my toes :-)

I saw the equipment they use today - the catheter looks long enough to go through your whole body and the syringe well, what can I say - if it had a needle on it I would have feinted! It is absolutely massive, it has the BCG small bottle attached to it and some other solution inside. Than goodness you don't see all that lot go in!

Anyway, I have done my 15 minutes a side regime and I am waiting for another 20 or so minutes before I can get rid of this out of my system.

I think that this week I am going to drink a lot more water and liquids to see if I can cut down the irritation for next week's appointment.

That is it for now. I can definitely feel something this week so stay tuned for ongoing reports.

Setting Goals and Targets

I realised that it is a way to get back under some control and to help that you do what I do - see blog below:

6 treatments

At treatment one you are a 1/6th of the way through
At treatment two you are 1/3rd of the way through
at treatment three you are 1/2 the Way through
at treatment four you are 2/3rds of the way through
at treatment five you are 5/6ths of the way through
At treatment 6 you are finished.

It sounds obvious but this time next week I am half way through which means that I'm on the home stretch.

2nd Treatment Looming large

Tomorrow is treatment number 2 and I feel OK about it. I have the very slightest soreness at the end of my urethra but other than that and the very very slight feelings of aching all is OK.

The appointment is a little earlier and I am hoping to again get seen quite quickly and to get back home and doing the turning and precautionary stuff I have to do. After this treatment I'll be a third of the way through and I hope a third of the way further along the way to getting all of this under control.

What it looks like

CLICK Image To enlarge.

Here is a diagram of the various stages of Bladder Cancer. I started off with a T1 which the operations got back down to CIS - Carcinoma in Situ. The Tumour was a lot larger than the ones shown and was low down.

The Flying Catheter

I realised this evening that I had not posted this little incident.

Operation 1 they strapped a bag to my leg after the operation (next morning) and I was able to move around quite freely. On Operation 2 I was still attached to a bag, attached to a metal frame that either hung on the bed or stood freely next to you.

These bags are to collect urine and are connected via a rather large pipe (in the circumstances) which is attached via a catheter. That Catheter is (of course) inserted up your urethra inside your Penis and there is a balloon on the end that has been pumped up to keep it in place.

Catheters are OK and you get used to them being there but you can pull them and that can clear our your tear ducts for a while :-)

So - after Operation 2 the volunteer ladies arrive with the mobile shop and it has newspapers and all that on there. I wanted a newspaper. I got up, kicked the urine bag which flew across the room toward the ladies and then (like the cartoons) realised what the pipe was connected to. The bag and frame came to a halt as the slack of the pipe was taken up and the resultant tear jerking scene I will leave you to consider and laugh or cry about as you feel fit. The ladies were most concerned about me. I manged with all my dignity ( a bit difficult in a surgical gown and pipe hanging from your Penis) to pick up the frame and bag, stare straight ahead choking back the tears and gasps of breath whilst asking, in my best BBC voice for a copy of the Telegraph!

You cannot see the actions I can do to this story but believe me - it is really funny now - at the time - well .......

What a GREAT evening

I don't get out much at the moment (poor old sod) :-)

No I don't - really so it was great to be out this afternoon with my mates and friends and to have a really good laugh and joke. It was a real tonic and I had a great time and bless them all, they were all concerned about me and how I was doing. I feel a bit of a fraud at times as I don't look ill and I certainly only feel a little abnormal.

Anyway, cheered up and recharged - I really hope that we can all get together before Christmas even if just for a few beers as it will really lift my spirits.

Always With You

I think this takes some getting used to? Unless they cut out the Cancer and it is no longer there, you always have to be checked. So there is a point at which you need to come to terms with the fact that this is with you for the rest of your natural. I still haven't got there yet and whilst I know about it, either I'm not comfortable with it or cannot comprehend what it means. Perhaps I am over complicating things too much as well.

I think I said it before about with a nasty cold or some other operation, who have it and then you go back to "normal" and with this you don't really. No matter what you do it is always there and it kind of stops you doing what you want to do and stops you planning long term and at the moment short term too.

I cannot book tings too far in advance in case I have to cancel them. I don't know how I'll feel next week so I don't make appointments too far in advance and so on. I know I have to have an Operation in January but exactly when will that be and how long will I be affected for (especially given the last surprise one)? All these things reinforce that this disease is different. At some point in time I need to come to terms with it and when I do that master it and not have it master me. Not sure HOW I'll do that yet :-) Stay tuned!

An Expensive Disease

I hadn't realised that bladder cancer is one of the most expensive diseases to treat because of all the follow up work that has to be done and regular cystoscopies :-(

I can see why given the amount of time that you have to be seen and examined and the powerful equipment that they use. I also considered how many people were involved in my operation. If you have ever had a stay in Hospital just start to count all the people you met and then consider all the people that make that happen and all the technicians and everything else behind the scenes, all the canteen staff, cleaning staff, IT people, theatre nurses - you don't see them and so on?

The treatment and regular follow ups alone must cost a fortune and if this continues for the rest of your life - it can soon add up

Turning the Corner

I haven't got there yet. Some people I know are really relaxed with their diagnosis, the disease, what it means and are getting on with their life. I haven't got to that level of comfort or thought yet.

There are a few things outstanding including fully coming to terms with the disease, the treatment and the outlook. The Operations were successful, things have been caught early but CIS is still aggressive and needs regular management. Additionally, I have been off work (albeit working from home) for some time now and I am advised to stay local. It means that I need to plan my life differently. Anyone who knows me also knows that I am a planner by nature. Things have to be done in a certain order and project management is what I do!

There is uncertainty over my Critical Illness Insurance which I really didn't need at this time, albeit I hadn't even realised I could claim. Given the way Insurance Companies are stated in the press to find all reasons not to pay this adds a level of stress that I wasn't expecting to have to deal with.

I think once I have this treatment out of the way, the insurance settled one way or the other and the next steps known. I can then try and plan out the way ahead. I will be taking an extended Christmas break this year and that I hope will allow me time to reflect, time with the family which is important and get some idea of what I can do in the New Year. Of course that is tempered with the fact that I know I am due back in Hospital in January for a few days!

I don't sleep well still

I was up again last night at about 2. It had taken me hours to get to sleep as well.

I think I said it earlier, the brain goes off on a journey about something every night. Yesterday I had been out with a few friends and one was telling the other that it was serious and not everyone we knew appreciated that I (he was referring to me) could die from this.

He is right I suppose and whilst it is an aggressive disease, it is in its early treatable stages and it is still treatable should this fail and more radical surgery is needed. However, 4000 people a year in the UK will die of this so I suppose I was a bit more sensitive to that last night.

It can be other reasons that keep you awake too. Will my employer still continue their excellent attitude to my problem? Why can't I do what I used to do? Will I be able to get back to some level of normality next year?

I can still hardly believe that it is less than 4 months ago that I was diagnosed. So much has happened to me in that short space of time. Also everything revolves around this at the moment so it is not surprising that my business, family and social lives all revolve around whether I have appointments, how I'll feel etc. It is a big problem as you cannot make long term plans. I know that I will be in Hospital in January 2007 and probably the end of the month. Given what happened last time, do I cancel the appointments that I have for 2 or perhaps 3 weeks either side of that? Again, all reasons to lie down and then to start to think of the consequences, the future, the past (perhaps I'll look at that later) and to churn over the day's goings on.

Enough, I'll not be able to sleep if I think of this lot :-)