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 :-)