Book or Blog Titles

Lying around and making notes yesterday it occurred to me that there could be some interesting book titles about Bladder Cancer as opposed to the Scholarly ones I have seen to date - here are a few:-

• The Long and Short of it
• Extracting the Urine
• Shaken not Stirred
• Getting Bladdered
• A Sharp Intake of Breath
• Size Matters
• All Men are the Same Lying Down - a Urology Nurse's View
• Stop that leak
• Bladder Farts Don't Smell
• Light at the End of the Tunnel
• Willy's Progress
• The Catheters were not a Southern French Religious Group?

I'm sure you can think of more.

Bladder Farts

I know! I had to bring things back to basics. No matter what you say, a Fart is one of the funniest things. My children derive no end of amusement, to almost hurting themselves with laughter.

So yesterday, I was on the listen. You see last week, and the week before, I thought I had heard wind coming out when I was peeing - and not from where it traditionally does!

So this week, when voiding the BCG mixture out, there it was, two farts! Excellent! :-)

I suppose air must get instilled with the mixture of BCG as it is inserted (there must be some air in the Catheter.

So there you go, I told the children who, predictably, fell about in a heap laughing. even I thought it was funny but had to make sure I didn't laugh too hard in case I erupted another bladder fart :-)

As well as could be expected

I changed the plan yesterday to have the painkillers and anti inflammatories after the 2 hour instilled period and before the side effect kicked in. This appears to have worked really well.

I did the usual turning regime and then waited an hour and voided that. There was a slight sting and some light blood but it was manageable. I then grabbed some food (don't take Ibuprofen on an empty stomach) and so had the tablets at about 2 1/2 hours after instillation. I then went to sleep for about 2 1/2 hours and then went to the toilet. Much better than the week before and there was only one stinging moment a little later on. By 9 p.m. I had eaten, had my second lot of tablets and was asleep. I woke at 10:30 and went to the toilet then and again at 5:30 this morning - no signs this morning so far.

This seems to have worked better than last week. Most of the symptoms whilst still there are so much more manageable than week 2.

I am now 2/3 rds of the way through my treatment. The Nurse was very good yesterday. I asked about the Catheter and she told me that it was lubricated and showed me the bag it cam in. She said they could not give a local anesthetic alongside the treatment. However, I'm not sure I'd want one as the one I had with the Flexible Cystoscopy invoked a stinging sensation that made me feel that I wanted to go to the toilet and that would not do for this.

Anyway, the stress ball took a pounding as the catheter went past the Prostate but other than that - if it is at all the right thing to say - things were a lot better yesterday than they have been. I also reckon one of the worries I had yesterday was that I knew it was going to be a different nurse - but she was really good. In fact they have all been absolutely marvellous - it cannot be easy for them having to deal with what could be an embarrassing thing to have done and also what can be a sensitive thing too.

Waiting - You have to do it

I hate the waiting around. I know that I have exactly three hours left before I get the treatment. I suppose that is better than an Operation when (generally) you only know if it is morning or afternoon. There is a ritual to go through before each. Perhaps I'll look at the operations one as a separate blog. The only ting to say now is how stressful it is waiting to go down to Theatre - it fills you with fear, dread, foreboding.

The treatment doesn't do that but you naturally are going to get nervous. I don't eat well before the event. I have had no coffee today, sipping away at a glass of water doesn't help as my mouth is as dry as the Gobi Desert. I know that all this really isn't necessary as I have done it before. I can't imagine how I am going to feel again waiting for the results of this treatment. I have to wait until April. At least when I found out I had Cancer I knew as soon as I had been examined. It took about 4 or 5 weeks after the first operation to find out how serious things were.

So - whilst you have to hang around to have things done, it builds up the stress levels approaching the time to leave the house.

The sort of preparations include:

• Light breakfast
• No coffee
• small glasses of water
• Lunch an hour earlier than normal
• Water jug and glass beside bed
• Tablets ready beside bed
• Cloths over the bed
• Toilet prepared with books, glasses, CD player ad CDs
• Bleach and Bleach tablets close by
• Disposable gloves, surgical wipes in bathroom
• Cheap toilet rolls ready to use to wipe stuff up if needed
• Stress ball in pocket
• Appointment notes and booklet together by the door
• E-mail auto answer switched to unavailable for two days
• Mobile phone charged but off during treatment
• Shower 1 hour before leaving
• Clothes laid out ready for Hospital visit (easy to get into and out of, comfortable etc)
• No drinking for two hours before going

I'm sure there are more. Having a ritual like this I suppose helps. I get most things ready during the late morning (from now onwards in fact) as it fills the time between now when I start thinking about it and actually going and getting the instillation done.

That will do for now.

Treatment 4 looms large

I managed to get a reasonable amount of sleep last night. I've found that it is now a good idea to stop drinking lots of water by about 6 or 7 at night as well. I don't feel half so uncomfortable nor do I get up in the night (apart from on treatment night).

It is surprising how nervous I still feel - if not nervous then perhaps a little trepidation about going to have this done. I suppose that it is only natural to feel like that. I very much doubt that I'd look forward to it. Perhaps knowing that I'm going to live through a 4 to 6 hour wave of side effects may be the reason.

This is the 4th of 6 treatments and that in itself is an incentive to get there and have this done.

Write it Down

I find this blog very therapeutic. Also, you tend to gloss over some of the things that happen to you so writing it down here can bring you back down to what happened and also I can point to this is someone wants to know more.

If I didn't do this I would probably write this down somewhere but in a less structured, more notes type format.

Now I AM going to bed..... :-)

Preparation for the 4th Treatment

Well -here we go. Getting ready for treatment No4. This time tomorrow I'll be 2/3rds of the way through. 4 down and 2 to go.

I'm going to slightly delay taking the pain killers and the anti inflammatories until nearer the 4 hours afterwards mark to see if I can get more effective use from them.

Another thing that bugs me - when I go to the Hospital, my wife - who has been fantastic - drops me off and waits for me, even if she has to drive around for a while. The reason? No car parking spaces to be had. A brand new hospital and you can't get parked. If I had to go myself it would be a nightmare getting parked nearby, getting treated, getting back etc.

I wonder how many people miss their appointment because of that. Before you ask, yes you could get a bus or public transport but you really don't want to as the very last thing you feel like doing is waiting in the rain for a bus when you've just had a load of liquid shoved into your bladder. Luckily we don't live too far from the Hospital and so we can get back withing 10 minutes of me being instilled.

Anyway - off to bed and hopefully to sleep. I feel a lot better than I did this time last week and so I'm hopeful that the brain will "give it a rest" tonight and let me sleep.

I Just wrote my Christmas Newsletters

One for family and friends and one for colleagues and my personal work friends. I have yet to write the family history one - that will be fun as I haven't done much this year on that.

It was quite strange to write about Bladder Cancer in between all the usual stuff about life, the universe, the kids, holidays (of which we had none this year) and all that. I struggled to get it off the single subject but finally - I think I managed to get some balance into it.

I hope that most people know but I am sure as I write my Christmas cards and send those off around the world that I will realise that some people don't know at all!

Blimey - I hope it isn't too much of a shock to people.

Someone - bless them - came up to me the other day and sort of muttered "why is it always the good ones?"

Turning the corner

I am now over half way through my treatment and I can hardly believe it is less than 5 months since I first noticed the symptoms and just 4 months since the first operation. Having two operations has probably the thing that knocked me sideways although a lot of people keep telling me to "wake up" you've just had major surgery or at least serious surgery. I suppose so. It is so matter of fact to me - I reckon it is a defence mechanism.

So, back to what I was going to say. I have taken things so easily and given everything - healing, treatment and so on every chance to work that I have put on a stack of weight. I know the traditional view of someone with cancer is a sallow complexion and hair loss etc but, I look and feel well but the extra 2 inches or so on my waist have got to come off. I have also been wearing jogging or track suit bottoms for a long time (they are comfortable - they are also easy to wear when you are having treatment too). I tried on a pair of trousers last week and they were very uncomfortable. I also reckon that the muscles around my middle are probably not particularly strong either.

So as of today, I am going to start back exercising each day. Today will be a walk of some sort. Luckily I am on the border between town and country so I can be in the fields and woods in 5 minutes. With Christmas coming I suppose I will have to be careful that I don't overdo it then by over eating - so easy to do when you are relaxing or recuperating :-). I am planning to go back to work full time in January. I need to be careful not to overdo it by trying to catch up on the lack of progress I have made on certain internal projects. I'll do myself a mischief if I do that.

Walking the fine line

There but by the grace of God go I.

I have to remember that I am pretty lucky at the moment. I now don't feel unwell and I can feel my energy coming back, my demeanour is much better, I am confident that things are working out for the best and I can share a laugh and joke about it all. The dark days of July and September are gone and the treatment I am getting is the best news I could possibly have hoped for given the seriousness of the earlier investigations.

A lot of people do not have the luxury of having that outlook mentally or physically so I thought I'd highlight the difference that ,whilst I have something with the potential to do me a LOT of harm, I look on it as curable, beatable and something that should be seen as part of everyday life - even if you don't want it to be there - it is with you all the time waking or asleep. It must not - as far as possible - stop you doing what you normally do.

I in no way wish to be flippant or disrespectful. This blog is the way I see it and it may well contain stuff that those in a more serious condition would not find amusing. So apologies to them.

Anyway, on with the blog and another thing has been taken out of my brain and released into the ether :-)

What you do with the Bleach :-)

Well - as I tend to think everyone actually knows what I am talking about, I had better make it perfectly clear about the treatment and what you actually do with the Bleach.

You DO NOT wash your Willy in the Bleach! It stings bad enough without resorting to anything like, use Bleach, A Brillo pad and plenty of elbow grease :-)

The reason you use Bleach for 6 hours after the treatment is that you are disposing of a Bio Hazard because the BCG is a live vaccine of TB type stuff (Hope that was technical enough for you?). After you have "voided" or had a pee. You must sit to stop splashing BTW - a sure fire way to make sure that the man in your house keeps the lid down :-). You put the bleach into and around the pan and leave for 15 minutes before flushing. The Hospital give you bleach tablets to do this.

So - now you know - please keep the questions coming in - it made me laugh when I read it the first time, then it made my eyes water at the thought of it

Blimey - another good day

Yes, again, up early, feeling good about the world and myself - despite the post below.

I wonder what it is making me feel this good? If I find out I'll bottle it and sell it on.

At a crossroads

I think that only I feel that I am at the crossroads at the moment. Perhaps only I can see the permutations that may lie ahead and the extent or limits of each of those roads. Getting anyone else to see that time and opportunity are precious is difficult without coming straight out and saying it and frankly that is not a particularly subtle way to deal with the problem. Of course neither is trying to dress it up and see if they can get there themselves.

I think now that only those with the disease can see things this clearly and whether it frightens you or not, a glimpse at your own mortality, and an appreciation of how thin the line you are treading is an insight and a warning. I want to live life now, I want to do things I haven't or may not get the chance to do. I want to live a little on the edge and I want to do a lot of things that if it doesn't work out, I'll have at least given it a go.

Having said all that, you still have to go on working and bringing in the money, providing the steady home and all that and everyone else wants to carry on as normal. The trouble is normal isn't normal anymore, its a waste of time and that is running out (or could be).

This is not meant to be depressing, it is the new reality.

Word is getting around

I am getting a lot more messages on e-mail and a few phone calls now that the word is out. All have been supportive and offers of help but of course, generally, you don't need help as such. I suppose I ought to ask them to send emergency rations of beer around, its a win/win situation then :-)

Almost Unheard of

I was awake at 6:30, all bright eyed and bushy tailed. ready to go. Got downstairs, felt great, had a decent breakfast and I'm here at my home office desk at 7:55 after having done 30 minutes on e-mails already.

When I said I felt well, I do mean it. For a number of years, now thinking about it, I have been quite low and depressed almost, difficult to get up, procrastinating not any real energy etc. Perhaps this is a temporary glitch - I hope not. I wonder how long I have been ill?

Happy Thanksgiving to those of you who celebrate it.

Another good day

I am amazed how much I have got completed today and how well and cheerful I have been all day. Perhaps last night and meeting everyone has bolstered me, or perhaps I just am beginning to climb out of the pit of depression and not being well (albeit I never felt unwell - just beaten up).

I will have to see how I am tomorrow.

Friend from long ago called

Word gets around and I got a call out of the blue from an old friend. He phoned to see how I was and he was delighted to hear me in such good spirits and being so positive.

I have to say that I still feel very positive about the whole thing. Another friend of mine (don't count them I must have at least 3 friends!) told me after some horrible experiences at hospital that he was so pleased that he had been diagnosed with MS! What? Yes he went on, I really thought I had Leukemia!

I think that you need to look at things that positively. You've got whatever you've got and that is it, it is a fact. You can't blame anyone, you can't get rid of it, you have to live with it. Looking around you will soon find that there are lots and lots of people far worse off than yourself. Some countries you'd be left to die with what I have so count yourself lucky that you live where you do, have access to specialists, have the best treatment you can possibly get and you have the best possible chance of recovery, treatment, cure etc.

Reasons to be Cheerful - Good old Ian Dury - great record :-)

Concentration Levels begining to come back

I have been finding it quite difficult to concentrate since the Operations either because of the General Anaesthetic or because of thinking about the disease whether consciously or subconsciously which meant that I was having real difficulty concentrating for long periods of time. today I feel that I have finally come out of that, albeit in a small way. I have actually spent most of the day in a productive manner and produced tangible things. Wow!

Catch up with the Nurse

It is quite a reassuring thing to do - call in a few days after the treatment and make sure that you are OK. The main thing here is that if by now I was suffering chills or flu like symptoms or anything worse then they can do something about it.

I went through the symptoms I had on Monday/Tuesday and all is OK. I am going to slightly change the plan next week to take the tablets just prior to the onset of the side effects (say an hour or so before) and see if I can get these under more control.

I hope it is not one of those "negative" signs - like on the films or where you hear someone is doing really well before the relapse but I am feeling really well and perhaps for the first time in many months and I couldn't tell you why that is. Perhaps the therapy is working in a way to clear out everything else in my body - I just don't know. Stay tuned folks!

Be Thankful for people who listen to you

Tonight I was really pleased to meet up with some friends and colleagues. It was nice to get out of the house, even if only to my local pub. It was good to chat and catch up, better still they were good listeners.

With Cancer you do get very much "Me, Me, Me" syndrome because, well it is happening to you, you don't get out much and you don't have adult company all that often nor do you get a sympathetic ear.

So it was very kind of every one to listen to me and ooh and arr in all the right places. Also not a "sorry for you" in the whole thing so also much appreciated.

As a complete aside, my jacket absolutely stinks of smoke. Until recently, even not smoking, I wasn't quite so sensitive about it, but now, knowing that it may well have been a contributory factor in my illness, I appear to be almost hyper sensitive to the smell of smoke. However, I notice it more on my clothes than in the pub itself. We were in a non smoking area but were only in the main bar for a final drink. In the 20 minutes or so that was happening my jacket and clothes really stink.

Next year all things will have to change and I can see that it may well improve sales in places like pubs if the air is clean. I really hadn't noticed it was bad until now and funnily enough I am quite OK with people smoking around me. I used to years ago and I don't want to appear a holier than though reformed smoker even though I could yell from the rafters that bladder cancer is a smoker's disease!

It would make no difference as no one there knows me. I try not to have a dig at my friends about their smoking but I do offer them the ability to read this blog and see whether it strikes any chords with them.

Interesting Lunchtime

My friend who is a hypnotist met up with me at lunchtime. I told him that I haven't felt this well in years. No really, I know that the treatment yesterday knocked me sideways and all that but actually, I feel very well in myself, I look well, my skin and general complexion is good, I eat the right things and I have completely changed what I eat etc.

I also have a much more positive outlook in recent weeks so perhaps it all adds up to the feeling and looking well bit!

This morning

I forgot to say that drinking all this water is not only good for you but your skin feels good too. Also I drank about 4 pints of water from after the treatment to getting up this morning and a half pint of Cranberry Juice (the jury are still out on whether it is any good for urinary tract problems or not). Anyway, whether it is good or not for you, it tastes better than water alone.

This morning I still have a light stinging or aching but I feel a lot better than I did last week when I suggested that I felt I had been hit be a truck. This week I feel as if I have been hit by a wet fish.

So how was it for you?

Well Treatment 3. I was a little bit more worried about going to get the treatment this time which surprised me. The stress ball was great and it does help. If anything the catheter this time was less noticeable than last time but you still get a little gasp but it isn't painful.

So I did the turning for 15 minutes a side - this to ensure that the vaccine gets to every part of the bladder. My friend's son, who is a Doctor, stated that the reasons are quite easy to explain. Most patients prefer to do the turning regime rather than to Bungee Jump which also has the same effect :-) Well it made me smile!

So I kicked in the "Cunning and Devious" plan and after the turning and a piece of toast (you shouldn't have Ibuprofen on an empty stomach), I had 2 Paracetamol and 2 Ibuprofen. This left me 30 minutes after which I voided the BCG stuff and took the usual precautions with bleach etc. I started drinking water just before this and had a pint by the time I needed to go again. I also laid down in bed this time and slept until I woke needing to go. I had been asleep for about 2 hours.

The side effects kicked in again after about 4 1/4 hours but this time without the ferocity of the week before. As you can imagine it is pretty upsetting to see blood and clots in your urine but the treatment is meant to do that. The stinging started up again but without the intensity of the week before. At only one point did it really hurt and that was passing a rather large clot - I found a good swear was useful at this point. I was able to take some more pills four hours later and that really helped again. I didn't need to go with the frequency or the urgency of last time and so that also helped.

I set up the bathroom with a few books and magazines and a CD player as last time I seemed to be holding out squatters rights. Again this time I was able to visit and not spend a long time in there. So all in all the "Cunning and Devious" plan worked. If anything I may hold back the first lot of tablets until later so that I can get it nearer to the time when the side effects kick in.

So - perhaps a plan of action and also knowing this is about to happen can help you to work on this. It was nowhere near as bad as last weeks which came on so fast and with such ferocity I didn't know what had hit me. This morning, there is some slight stinging and a little soreness around my middle but other than that it is fine.

Finally still be prepared for a little leakage even after all of this but it was minute compared to last week and simple precautions of some cloths on your bed and some old underclothes sort it out.

So, half way in my treatment, 3 down and 3 to go. I feel so much better this morning, I am up early, have had breakfast and my first coffee since Sunday :-)

Just Quickly Then

I'll add some more tomorrow.

I was curiously a little more reticent about going to get the treatment today but there was another nurse there, I met her last week and she explained that she was a little slower than the previous nurse. So she was and no problems.

I'm able to write at this time of night as the "cunning and devious plan" has sort of worked. However, I'm off to bed now and I'll write more tomorrow about it.

The side effects were the same as last week but I was able to control it this time knowing what I went through before.

Night all!

Treatment 3

Well it wasn't so bad but I was still awake for an hour or more before finally falling asleep.

I am feeling neutral about today, I'm neither worried nor am I looking forward to it either. A certain amount of resignation about today. I have decided not to have coffee today (will I manage????). So a glass of water and an Actimel to start.

It depends on what you read about coffee. Some say nothing about it others recommend you drop it - so we will give it a try today and see if it helps. As for the Actimel - again I read that it can help you when undergoing this sort of therapy so why not give that a go too.

Isn't it strange somebody dropped me a line and asked when I'd be fully recovered? Of course, I'm not sure you ever are fully recovered from this. I might be wrong there. Since I've had this it is a term that I'd probably only use when speaking to a re-upholsterer :-)

No doubt there will be more of this stuff later.

And so to bed

It is just gone midnight and today I'll be having treatment No.3. All is lined up ready for that now and I just need to get to bed and get some sleep. Considering I didn't get to sleep until 3.30 yesterday morning I don't know quite how I'll do now. Hopefully I am not writing to this blog at some unearthly time.

Whilst I have often had the strangest sleeping patterns - it is far more pronounced these days as the body may be tired but the brain wants to carry on computing the odds and checking out all the various scenarios. The trouble is that actually what will be will be and so all this planning and thinking may be a bit premature.

Good night!

FAQs Part 2

Q: What is the difference between Immunotherapy and Chemotherapy?
A: There is no real difference to how these are administered for Bladder Cancer. The main difference is that Immunotherapy gets the body's own defence mechanisms to fight the cancer where chemotherapy actually uses the drugs to do that.

Q: Will you lose your hair during treatment?
A: No - both treatments are given directly into the bladder and so are directly in contact with the Cancer. This way it is contained wholly where it is needed. Unlike other treatments this is locally confined and you don't lose your hair.

Q: So how does it get into your bladder?
A: OK - this is a Yuk bit - The vaccine is a liquid that is given directly into the bladder through a tube (catheter). That is passed up your Urethra. I refer to this as a "Character Building" treatment.

Q: Does it hurt?
A: In my case, no it doesn't hurt. Getting the vaccine in is uncomfortable but it is quick and whilst it can be a little sore, it really isn't that bad.

Q: Are there any side effects?
A: Yes and these do hurt a bit - I have bleeding and what can only be called massive cystitis symptoms for about 4 to 6 hours, 4 hours after the treatment. This stings and hurts but it isn't enough to double you up in pain, it is uncomfortable and there is a lot of stinging etc. Some people get no symptoms at all and others get far worse with flu like symptoms on top of these ones.

Q: Is this a one off treatment?
A: I doubt it. It tends to be one off for now, followed by tests and then a series of maintenance repeats are undertaken. These happen less frequently over time as long as things are improving. At the moment the first course is 6 times (once a week for 6 weeks). I believe follow ups are 3 treatments (once a week for 3 weeks) at 6 monthly intervals for a number of years and then it goes out to 9 monthly and possibly yearly. Unfortunately we are talking many years for the maintenance to continue.

Q: Are you able to work?
A: I am but not full time at the moment and neither can I travel too far. My job involves a lot of travel which has had to be curtailed. I am able to work at home on PC and Telephone so I am lucky. The biggest problem I have with work is my concentration is not what it was either. Generally, once things have settled down you should be able to work as well. I don't know how some of the people I have read about can have this treatment and go to work the next day though.

Q: Are there any upsides?
A: Loads of upsides to being diagnosed with Cancer. Suddenly the rest of your life is important. Time means a different thing, TV gets switched off, life becomes "Too short" when you have to listen to the day to day trivia some people think is important. You can say what you like and it doesn't matter (kind of). You see things a lot clearer, you hate shallowness and you also become an expert in your own disease and don't understand why no one else is. You also understand that Cancer is treatable, recoverable and you find it difficult to keep patience with others who don't know that. You try your hardest to be nice to people who are "sorry" for you. You realise that before you were diagnosed you were as ignorant about your disease as everyone else around you is. You can bore anyone rigid who wants to hear all about what you have :-) There are lots more upsides - I'll try and think about it and post more later.

Easy Mistake to Make ------->>>>>

If you look at the Ads on the right hand side of the blog, occasionally you will see an advert for Prostrate Cancer. I think that I managed to check all my spellings because my spell checker suggest prostrate when of course the Cancer is actually Prostate without the second "r".

It amuses me that someone has paid to have their advert come up and being such specialists in their chosen field cannot spell the name of the disease properly. Well I thought it was amusing!

Like the difference between stationary and stationery - or may be not.

FAQs Part 1

FAQs (Frequently Asked Questions)

Q: When do the stitches come out?
A: There are no stitches, not even internal ones

Q: Does it hurt?
A: Surprisingly for me it only hurt for a day or so after each operation. What pain there is can be controlled using off the shelf pain killers and anti inflammatory drugs. Day to day it does not hurt. I have some aches and pains around the area which are possibly muscle pains but I have often said it is uncomfortable rather than painful and generally that is all I feel.

Q: Where is the scar?
A: There isn't one. All the work on your bladder is undertaken using tools passed into there through your Urethra.

Q: Why are you so positive about it?
A: How else could I be? The only way to combat this and to get through it is by having a positive mental attitude, humour, trust in your consultant and their team and a determination to help yourself and support any treatment by doing what you are told and ensuring you eat and drink the right things.


Note Added April 2007 - Where I say scar I mean external scar. There is of course scars and wounded areas inside the bladder itself. You just can't see those - unless you are a urologist or you get a peek down a cystoscope one day.

Squeamish - I know I am

A Ha!

I just had a one of those moments where it all became clear to me. I hate anything squeamish or unpleasant, I can't even watch an injection on TV. I was wondering why a number of people didn't like me talking about my treatment when I re-read some of the stuff I had written. OOOooppps! I don't suppose I'd like to hear some of this stuff.

It is strange though how it is all a matter of fact to me now. If it is being done to me then it is alright. When it is someone else I'd hate it.

Another note to self to be a bit more careful on the descriptive front.

The Weekend to think about it

I am trying to keep really busy this weekend. I am also going to try and remember to cut out coffee prior to my Monday treatment to see if that helps a little.

I've worked out a "cunning and devious plan" to see if I can prepare myself for the side effects by taking the pills and so on before the onset of the side effects.

Other than that, trying to occupy my time is a priority this weekend as I really don't want to think about it. Of course, every phone call asks how am I? How is the treatment going? I can't win.

I do like the phrase "Character building" when applied to my treatment. :-)

Living With The Uncertainty

That is the one thing that is taking up my grey cells these days. Uncertainty about whether or not the Insurance will pay out - my rep seems to be very nervous about it, perhaps it is me picking up the wrong vibes?

The uncertainty of the effectiveness of the treatment. In 4 weeks time I'll have finished the treatment and I'll have to wait 12 weeks (3 months) for the operation and biopsies, then perhaps 2 or 3 weeks for the pathology tests and then go and see what my future holds. It is obviously the quickest that it can be done in but, that means that from now, it is unlikely to be less than 5 months until I can really know whether this has worked, if it has, what happens next and when - then if it hasn't what we do next?

Of course I know what treatments are available and that there are combinations of these but, it is not my choice and the results will drive the next steps.

Then there is the other uncertainty side of things. I have to get back to work in the New Year. It will be particularly strange and there will be a lot to catch up with. I feel these days to be much slower than I was - my brain is not so sharp and it takes longer to do things. Will I be able to pick up long term projects or will I have to manage as if everything will be over by Easter?

I think that Cancer affects you physically (although I only feel ill in the background) and mentally because it makes you think about all the negatives first and the positives second and of course it affects those you love which in its turn affect you as well. Coming to terms with these is, of course, the difficult part of the journey.

You also have to face the facts that not everything will come out the way you want it. That will change your plans and perceptions and make you re-plan and move on.

I haven't come to terms with the fact that this is with me for the rest of my life, albeit that it may be that in 10 years time, all things working out well, I will only have to attend the Hospital once or twice a year! Mind you - do I fancy a Cystoscopy a year in the future? I may have to have one - but again it is too early to deal with that as it hasn't happened yet.

I don't think you can deal with the uncertainty in the way that you can deal with other day to day things you can plan. I reckon that as things progress the day to day existence that it is now will become week to week, month to month and year to year. When it starts to get to the point when I no longer need to blog each day, then the first step will have been taken. When the blog gets to being fortnightly or monthly you and I will know that acceptance has been reached and the new normality would have settled in.

That is enough of that sort of heavy stuff, I'll hurt my brain if I think any deeper than that for the rest of the day!

Seems OK this morning

Appears to be OK this morning, up during the night just the once, it seems to be a pattern these days. Slight an noticeable throb or slight sting right at the end of Urethra letting me know it is there. I hope that isn't around on Monday for the next treatment. Otherwise all is normal

Side Effects Part Deux

Well since late afternoon I have been peeing for Team GB. At a guess I would suggest every 15 to 25 minutes. Slight stinging too. Perhaps a bit too much coffee after lunch - I made some for a guest but they didn't have it so I drunk perhaps 4 cups of strong filter coffee.

I'll make sure I don't do that tomorrow and see if there is any change.

The Question I struggle with - How are you? No Really how are you?

It is difficult to describe to someone exactly how you feel.

How am I? I'm fine thank you. Well actually I'm not fine; neither am I well; feeling great; top of the world or any such thing but my automatic response would be to say I'm fine.

I find myself stuttering through that answer now with "I'm fine er, well, um, maybe, well no I'm not really" and off we go.

Of course saying you are well is the easiest to get things moving but hardly truthful if the next question is something along the lines of "do you fancy coming out to London for a festive beer?" where upon you have to make your excuses generally and decline and then why.

Of course, the quandary is, how do you be truthful without sounding as if you want to get the sympathy vote - there is no easy answer to this one - if there is I'll post it.

Still feel it

I can still feel the effects of the treatment even today - urinating you can feel as if there are lots of very small bumps in your Urethra. I guess this is why I was warned that each catheter gets a little more difficult. Thank goodness there are only 4 left then :-(

Despite the side effects, I feel well and quite good generally. The morbid thoughts are less frequent but they still appear when you least expect them as do the mood swings. Fortunately, in my case these are all manageable and over very quickly.

I wasn't sure what to make of the fact that the side effects are cumulative. I hope that means that they last a little longer rather than get any more pronounced than they were earlier in the week. I'll find out next week I suppose.

Well that's alright then

I just spoke to the Urology Nurse about the side effects. Yes, that is what you should expect - crikey. If it goes on longer than it did then you need to worry - they reckon no more than 24 hours. At present then, the Ibuprofen and paracetamol were a good move and the treatment is designed to remove the lining of your bladder!

I think it certainly did that for me. I'll probably not try and get up and go back to work after the turning bit next time.

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.