Monday, October 30, 2006

Behaviour be on your guard

The one thing that Cancer is, is personal. Sure your family go through it with you, your Friends sympathise and all that but who has the treatment, who communicates it and frills it or down plays it to everyone? You do.

You also can get pretty short with people. I'm pretty much one for having a sharp mouth anyway but I can get quite nasty and be quite verbal at moments when your guard is down.

Today - I have just come off the phone and discussed my treatment with the Urology Nurse - who sounds great and knows her stuff etc. But I now realise that a week today to this very hour I will have my first treatment. I put the phone down and when my wife said something I was quite rough and rude back. Of course it is regrettable but it does happen - be quick enough and big enough to apologise as soon as you can. I think that people understand that you are anxious and upset but probably don't understand quite how stressful it is living with this all the time.

As a by the by I was upset to hear that people gave up on the Immunotherapy treatment later on after they had done all the hard work. I suppose time will tell for me on that.

How am I going to feel?

I have probably had every emotion possible in the past 4 months. I've been in pieces, depressed, extremely happy, humorous and extrovert, quiet and introvert, bloody minded, annoying, swearing too much, don't give a damn, thoughtful, remorseful and everything else in between.

Physically I've felt not a lot apart from after the Operations which do, and lets not make any bones about it, leave you bruised and slightly battered. However the wording I've been using to people is that I have generally felt uncomfortable, rather than in pain. Sure, I've had some minor pain and Ibuprofen and Paracetamol will sort that out for you and I know that my Bladder and surrounding innards have been "stirred about" as I can feel the whole area twinging and so on.

Other stuff includes some stinging for a short while urinating and some stinging occasionally but I don't think it has ever doubled me over in pain.

No doubt I'll have some more views on this in the coming weeks. However, so far, I have been anxious about what I was about to have done but afterwards quite stoical about it and I think you have to look at it as a matter of fact type arrangement. These things are needed to be done to make you better after all.

Sunday, October 29, 2006

I'd Rather you use the word Cancer

I was at a do yesterday and it was announced (in front of 100 people) that I had "undergone some tests and would start treatment next week".

That elicited a round of applause (a bit embarrassing) and then - of course - lots of people coming up - why are people always "sorry" - I suppose that there isn't another easier word to use. Trouble is each time you have to recount your story and that can be a little tedious. Of course it was good to know all these people were with you and all that but I would much rather the chap say.

"A number of Operations and tests for Bladder Cancer. Good progress and Immunotherapy treatment starts on Monday week".

Would people have still come up for more detail?

Who knows. Perhaps I can add more about the reactions you get when you say you have Cancer?

It really doesn't worry me but a friend has let no one know why he went into Hospital or what he was doing there. Each to our own and people should respect that.

Friday, October 27, 2006

A Friend worse off than me

I spoke to a friend who has undergone Prostate removal and he had his operation when I had My first one. He has just started driving again! He is in great form and we are going to meet up next week for a few beers and a laugh.

On a serious note though - as he said to me, a lot of your treatment is a "No Brainer" in the Cancer world - things have to be done radically and as long as they are they can do something for you. Both of us have approached it in almost an "it's not me being operated on" way to try and get it out of our minds. Some of the procedures are not pleasant but the alternative really isn't either.

Today I get confirmation of the next steps

My Immunotherapy starts on the 6th November - a bit quicker than I thought it would. I understand that it isn't going to be pleasant but given the work they have done on me to date to get me to this stage, 6 weeks of discomfort seems a small price to pay to be well again.

Stay tuned for the treatment blogs.

I spoke to the boss today and he was very supportive. Basically they aren't going to see me back until after the New Year. We worked out what I could do over the next 6 weeks or so and luckily for me I can work at home, be on the phone and on the PC.

Words of Wisdom

Not a lot I can say as I'm not a Doctor but I have found that I changed a lot of my lifestyle choices once I knew I had this.

I drink lots of water every day now - I feel better and it helps apparently
I eat a lot of dried fruit now and try and get 5 servings of fruit and veg a day again I feel better for that
I tend now to watch carefully the intake of salt and fat, I make sure I have oily fish at least once a week
I have also gone back to eating porridge for breakfast and actually like it

A number of these things just make sense - they actually appear to make me feel well too. Curiously if it wasn't for the fact that I've had all these Operations I'd swear that I have never felt quite as well as this. Perhaps that is also because I have hardly had any alcohol either :-) Who knows.

Oh yes - I haven't touched a cigar since the diagnosis episode.

Mind you - I was out the other day and I couldn't believe it - after all of this operations, examinations and so on, I almost fancied a smoke. After all this time and all that I had just gone through (and still have to go through) how on earth could my brain have even thought that it would like a smoke - it just goes to show how habit forming it is.

Scar Wars Episode III - The Sting in the Tale (or Tail)

A Long time ago in a Galaxy far far away.

Having escaped twice from the Operating Table
Once each from the X-Rays & the dreaded Cystoscopy
Our Hero returns to meet Darth Urologist one more time.
Can he win out or has he really gone over to the Dark Side?
No he hasn’t, he’s just turned the light on!

What can I say GOOD NEWS! Albeit with a sting in the tail (or as near to the tail as makes no difference)

Good news is:

Cancer is downgraded to CIS – Carcinoma in Situ meaning that it is now in the top layer of the Bladder and the surgery appears to have worked well and the biopsies show that it is no longer in the second layer. This is really good news and they went back over the biopsies and made absolutely certain – hence the extra two weeks waiting around. Time for a Yippee I think - YIPPEE

Sting in the Tail is:

Now for the Immunotherapy which is a 6 week course of BCG (yes the stuff they give you for a TB jab - well almost) – but it isn’t injected into you but delivered directly (yep I thought that too – makes ‘yer eyes water doesn’t it). I asked about the side effects (as opposed to the special effects – how do those light sabres work?) – frankly, wished I hadn’t asked! It is pretty much a case of I’m gong to feel pretty grotty while they do this. It isn’t chemotherapy as this actually gets the body’s own defences to fight the CIS – so no hair loss (alright I know but don’t feel you have to write in and tell me about the lack of hair anyway!).

It looks like I might have to wait a few weeks before they start on me – it will go on for 6 weeks and then 6 weeks after that back into hospital for another test under general anaesthetic (remember what happened last time!!). They then check to see if it has done its job. There are two outcomes – if it has worked then great albeit that they then do preventative maintenance using the BCG for 3 months then 6 months etc. It can go on for years but they do fewer treatments and regular checks. If it is not successful then things take an altogether more interesting and radical route. We don’t want to go there for the moment – that really isn’t pleasant.

How am I?

I’m alright – it is a bit better than I expected or hoped for so that is good. Judge for yourself whether I should be looking forward to the treatment :-). Whilst it is a nuisance, this is at least a move in the right direction and within 3 or 4 months from now it will be a clear point to work from. This also marks a sort of planned set of treatment which is a bit more settling than the stuff that has happened to date.

Wishing you all the best – thanks for the support (I’ll wash it and send it back to you).

Scar Wars Episode II - Revenge of the NHS

A Long time ago in a Galaxy far far away…..

(cue music)




Our Hero, keen to get sorted out has returned to the scene.

Gullible as ever he believes he is just going in for a few tests.

Darth Urologist has other ideas

- read on if you dare!!!!

The best laid plans…

I have to say - it didn’t feel right when I came to – it definitely didn’t feel like the last time, it was far worse and they were discussing whether or not to give me Morphine! OOOppps :-) They decided against it and stuck me back on Oxygen and left me squirming for a couple of hours with bladder muscle spasms – no one warned my wife so when she turned up I was jigging about, in and out of consciousness, white as a sheet and still attached to the Oxygen mask. They told me things had diverted off the planned course when I woke up but told me the full story next day:

Instead of a set of biopsies and a retest they ended up taking away two small re-growths of the original tumour (quite normal apparently). They found another “suspicious area” and biopsied or more like it resectioned the whole of that, took the 6 original planned biopsies, did the planned retest and then decided to re-resection the original area of the tumour so they basically re-resected the scar! Ouch. No wonder I felt worse than last time – they had indicated that I might have gone home the same day before I went down to Theatre (Operating not Stage).

Needless to say none of that was in the script – so instead of a return to work on Monday – I’ve got to go through the “being careful” routine again – no lifting, bending etc for two weeks, no driving for three weeks etc.

I definitely know they have done something this time as I am particularly well beaten up, bruised and tender where before I didn’t feel this bad. I should know the next course of action in two or three weeks time.

As last time, all is OK - I am being looked after really well here.

Hope to be up and about in a few weeks time.

So now you know :-)

An Intro to Scar Wars

Like George Lucas, this homage is an ongoing series of episodes with me as the Hero (of course). I also reserve the right, as did George, to write the prequel in 20 years time when I have fully recovered :-)

BTW - I am not that old :-) just in case you were thinking that

Next few posts

So anyone who knows me - don't publish who I am yet will you? Thanks

I'm not sure if I want to tell everyone who I am at the moment. Some people don't even know I've got Bladder Cancer and some do, some reckon I should publish this stuff and others don't!

Anyway - I'd appreciate it if you know who I am to leave it like that - thanks

You also need a Intravenous Urogram (IVU or IVP) - whatever that may be!

"This test is also known as an intravenous pyelogram (IVP). It is done in the hospital x-ray department and takes about an hour.

A dye is injected into a vein, usually in the arm, and goes through the bloodstream to the kidneys. The doctor can watch the passage of the dye on an x-ray screen and see any abnormalities in the kidneys, bladder and the rest of the urinary system.

The dye will probably make you feel hot and flushed for a few minutes, but this feeling gradually disappears. You may feel some discomfort in your abdomen, but this will only be for a short time. You should be able to go home as soon as the test is over."'

Well I was meant to make an appointment on the day of the cystoscopy but I was hopping around trying to find a toilet :-) My wife sorted it out whilst I was doing that. Eventually the X-ray could not be performed before the operation as you have to clear yourself out before you have it.

I had the X-Ray after my operation and if I'd have known how rotten I was going to feel before and during it, I'm not sure I would have gone through with it. I have never had to take laxatives before. So a few days after my operation (sorry this is slightly out of sequence) was crazy to do this so we moved it to a few weeks afterwards. For two days I had to almost starve and also take these laxatives which really were horrible. The tests take about an hour which is fine but they have to put a cannula in your arm (so much for an injection) and the dye was as stated warm and a slight sting. The X-Rays comprise a series of shots as the iodine works its way through your kidneys and to your bladder. That was OK but I really did feel rough perhaps because I was post operative and there is perhaps a bit more to understand around that too. I was also hardly recovered from all the prodding and jabs and everything else so perhaps that didn't help.

Don't let me put you off though. It is absolutely necessary to check that the cancer isn't in your Kidneys and the tubes connecting to your bladder. There was an interesting result too which I will share with you later!!

Thursday, October 26, 2006

The Flexible Cystoscopy- a Wonder of Medical Science I'm Sure!

I had expected a letter to see a consultant, talk to them and then undergo the test(s). As it happens we got some good news (I thought) that the Urine test had blood in it! but there was no infection.

The letter from the Hospital told me to go to a day clinic for a Flexible Cystoscopy under local anaesthetic in a few days time - no consultation - nothing of the sort.

Frankly, I nearly passed out when I read it, got very upset as I do know what it is like to have local anaesthetic albeit some 30 or more years ago when I had a VERY bad experience with it.

My wife phoned up the Hospital and explained the issue but they were adamant that this was the way they do this - no general anaesthetic and we then tried to get me something to calm me down, like Valium but no one would make a decision.

I was annoyed because the Doctor has said one thing and there was I presented with something quite different. I had no real choice of course but my drinking and smoking went up and I met up with some Friends in the pub for a short session which made me feel a lot better.

The day before the investigation I finally got a call and I got some Valium. Thank the lord for that. I threw away the cigars, I had got to the point of acceptance. There is absolutely nothing you can do about this - you have to go and find out what is wrong with you.

The night before I got no sleep at all and then on the morning of the examination I had a tab but otherwise had calmed down a lot before that and probably didn't really need it.

Arriving at the day centre, I was one of the first to be examined and got into Hospital gowns. I met the Consultant and after a brief chat had the flexible cystoscopy. I'm not sure if I should say much about it here. However, it wasn't as bad as I thought it was going to be. I didn't look. The only discomfort was afterwards when the local began to wear off and all I wanted to do was go to the toilet - but that stung like hell. The trouble was it felt like you wanted to do that all the time.

After the examination the Consultant told me straight - You have Bladder Cancer and I can see a moderate size tumour but it is very messy in your bladder. So I think I looked at the floor and said "Oh" - I think I had guessed this. In fact I have a feeling I knew that I had something wrong with me even earlier in the year but perhaps that is just hindsight.

They got me into the Hospital for an operation 2 working days later. Who says the NHS cannot move when they have to?

So to end this bit of the blog. The Cystoscopy is an amazing bit of kit, I wouldn't say I'd want to do it every week but they diagnosed the Cancer and it wasn't as bad as I'd imagined. The annoying thing was that we then discussed smoking habits. Being a child of the 60s I grew up with smoking as a way of life at home and at work, I used to work in an office where everyone smoked. As things went on and smoking became something anti social I backed off and slowly gave up cigarettes and then cigars and stopped altogether. The trouble is that the damage had been done ages ago. It is good that I have given up but how ironic that for the weeks between finding this and going to the test I smoked again after all this time.

Getting to see the Doctor

I haven't been ill for 30 years. I saw my Doctor when I signed up to his surgery in 1981 and in 1998 for an insurance check up! Other than that - we don't meet.

I don't like Doctors or Hospitals at all - I have a sort of White Coat syndrome - my blood pressure goes through the roof and I get very very nervous. So it was on the day I had to see the Doctor that I walked down the hill from my house across the main road and arrived far too early for my appointment.

I didn't particularly want to sit in reception and so I did a stupid thing - I Went in to the newsagents next door to the surgery and instead of buying some mints or some other such distraction bought a packet of cigars and a box of matches! Later you'll see why this was pretty ironic!

Having given up ages and ages ago, I lit up and nearly passed out on the first cigar, wandered around and managed to smoke a couple more before getting the nerve to go to the Doctors.

He immediately noted down that I was a smoker even though I told him I'd just bought the packet to get me through the door! I can't say that it was a good experience - I took a urine sample which was duly processed, he told me what he thought it could be - a Tumour at worst and maybe something else, then told me that I'd have to have a cystoscopy (under general anaesthetic) to check it out.

I'm afraid that all he did was to upset me a lot. I was in pieces by the time I got home and locked myself in my office and cried and moped around and then went up the pub, bought some more cigars and generally did a lot of negative thinking.

So - Doctor didn't really put me at ease, marked me down as as a smoker even though I'd only had a few that morning, nigh on told me I had a tumour and that he would get the Hospital to get me an appointment.

At this point I was pretty low I have to say. I didn't know what I had, I was bleeding all the time, I was drinking water as if it was going out of fashion and I knew I'd have to have a pipe rammed up my Penis to check out my bladder. Yep, I felt bad.

My wife was very good and I managed to have a reasonably good week. Work were brilliant as I had only just started there. I had to work from home which - thank goodness is practical with a phone and a PC. Let me never knock IT again as I have managed to work during this time. On occassions I'd just have to go and have a blurt in my office with my door locked behind me.

After a week a few days I got the letter from the Hospital - see the next blog for that!!

First Signs

My first signs were back in June 2006. I noticed some blood in my urine and thought it was something to do with the fact that I'd carried a big awkward and heavy machine up the stairs (and down again) at home.

I drank loads of water and after a few hours it went away.

Later - only a few weeks later, I drove to my Office a couple of hundred miles away and arrived at my Hotel in early July. As you do after a long journey I dashed to the loo and was horrified to find a stream of red urine far worse than anything before. I started to drink water as before and started going to the toilet far more often as a result. Over the next few days it didn't get any better so I rang my wife who rang the Doctor and I had an appointment set for the end of the week.

The journey home wasn't great, you have to find a closed toilet not an open urinal for obvious reasons.

So one of the symptoms is blood in urine and get straight in to see your Doctor.


My friends told me I should post up some of the e-mails I sent out to them to keep them up to date with my Bladder Cancer diagnosis, treatment and (let's hope) recovery :-)

I haven't been ill for 30 years before this happened so it was all a "bit of a shock" and it is quite worrying and depressing but I hope I can share some of the ups and downs as well as some of my particular humour with you.

Talking of which, whilst I have has some pretty bad days, having a laugh with my mates (even one who sent me through a near the knuckle Prostate test animation) was some of the best medicine you can get