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!