Thursday, November 30, 2006
I was watching this unfold and was almost at the point of wielding the size 12s but decided that is was best I kept out of the way. You see, it was that easy to see what was going on, it was a "no brainer" what to do about it and yet all hell had broken loose. Why even bother, make a decision and stick to it (right or wrong). After you have made the decision be big enough to accept the consequences. It really is that simple, that black and white. For something so trivial as someone deciding whether or not to go in when clearly not feeling well and the row that caused in the house this morning it was hardly worth it. At the end of the day, after going in and out of the house twice, the problem was resolved - too sick to go in.
I can be downright insensitive on stuff like this. It was so blindingly obvious that the best thing to do was to stay at home. Did I really need all the nonsense and arguments going on? It was like a mad house for 15 or 20 minutes. I like the bit when they try and get me involved - that often happens and they always don't like the answer anyway. It's like work - sometimes you want to walk into the office and just yell - life is too short for this shit, sort yourselves out or I'll do it for you.
Even now - they are not sure and may or may not want to go in - give me a break. They wonder why I get angry with this stuff. Simple, I really can't stand fannying around like this. Make a decision, stick to it and get on with it.
Now that's my whole morning screwed up. I hope no one phones up in the next half an hour with some sort of problem they may get more than they bargained for :-)
Wednesday, November 29, 2006
Both were difficult to write as breaking bad news is never really easy anyway. I'll see what the reaction is. I've mentioned the blog in one of the newsletters but not the other one yet.
Good grief - I'll never look at a Bacon Butty the same way again now......
Donald L. Lamm, MD has a number of articles, both here and in the bladder cafe and on his own web site which talk about BCG and its part in fighting bladder cancer or more properly getting the body to do that for you.
Tuesday, November 28, 2006
So the title of this blog is You know you are getting better when:-
- You start to lay the law down in meetings
- You start asking really difficult questions
- You volunteer for certain tasks and projects
- You welcome a good argument about a project
- You start making executive decisions knowing you can back them up
I shall keep my eye out for more observations and jot them down when I can.
- 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.
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 :-)
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.
Monday, November 27, 2006
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
That will do for now.
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.
Sunday, November 26, 2006
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..... :-)
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.
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?"
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.
Saturday, November 25, 2006
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 :-)
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
Friday, November 24, 2006
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.
Thursday, November 23, 2006
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.
Wednesday, November 22, 2006
I will have to see how I am tomorrow.
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 :-)
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!
Tuesday, November 21, 2006
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.
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 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 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 :-)
Monday, November 20, 2006
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.
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.
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.
Sunday, November 19, 2006
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.
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.
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.
Saturday, November 18, 2006
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.
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. :-)
Friday, November 17, 2006
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!
Thursday, November 16, 2006
I'll make sure I don't do that tomorrow and see if there is any change.
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.
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.
Wednesday, November 15, 2006
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.
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?
Tuesday, November 14, 2006
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.
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 :-)
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.
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!
Monday, November 13, 2006
I'll see what I am like in the morning as I'm going to have to take myself off to bed.
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
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!
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!
"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!
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.
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.
Sunday, November 12, 2006
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.
Saturday, November 11, 2006
Operation 1 they strapped a bag to my leg after the operation (next morning) and I was able to move around quite freely. On Operation 2 I was still attached to a bag, attached to a metal frame that either hung on the bed or stood freely next to you.
These bags are to collect urine and are connected via a rather large pipe (in the circumstances) which is attached via a catheter. That Catheter is (of course) inserted up your urethra inside your Penis and there is a balloon on the end that has been pumped up to keep it in place.
Catheters are OK and you get used to them being there but you can pull them and that can clear our your tear ducts for a while :-)
So - after Operation 2 the volunteer ladies arrive with the mobile shop and it has newspapers and all that on there. I wanted a newspaper. I got up, kicked the urine bag which flew across the room toward the ladies and then (like the cartoons) realised what the pipe was connected to. The bag and frame came to a halt as the slack of the pipe was taken up and the resultant tear jerking scene I will leave you to consider and laugh or cry about as you feel fit. The ladies were most concerned about me. I manged with all my dignity ( a bit difficult in a surgical gown and pipe hanging from your Penis) to pick up the frame and bag, stare straight ahead choking back the tears and gasps of breath whilst asking, in my best BBC voice for a copy of the Telegraph!
You cannot see the actions I can do to this story but believe me - it is really funny now - at the time - well .......
No I don't - really so it was great to be out this afternoon with my mates and friends and to have a really good laugh and joke. It was a real tonic and I had a great time and bless them all, they were all concerned about me and how I was doing. I feel a bit of a fraud at times as I don't look ill and I certainly only feel a little abnormal.
Anyway, cheered up and recharged - I really hope that we can all get together before Christmas even if just for a few beers as it will really lift my spirits.
I think I said it before about with a nasty cold or some other operation, who have it and then you go back to "normal" and with this you don't really. No matter what you do it is always there and it kind of stops you doing what you want to do and stops you planning long term and at the moment short term too.
I cannot book tings too far in advance in case I have to cancel them. I don't know how I'll feel next week so I don't make appointments too far in advance and so on. I know I have to have an Operation in January but exactly when will that be and how long will I be affected for (especially given the last surprise one)? All these things reinforce that this disease is different. At some point in time I need to come to terms with it and when I do that master it and not have it master me. Not sure HOW I'll do that yet :-) Stay tuned!
Friday, November 10, 2006
I can see why given the amount of time that you have to be seen and examined and the powerful equipment that they use. I also considered how many people were involved in my operation. If you have ever had a stay in Hospital just start to count all the people you met and then consider all the people that make that happen and all the technicians and everything else behind the scenes, all the canteen staff, cleaning staff, IT people, theatre nurses - you don't see them and so on?
The treatment and regular follow ups alone must cost a fortune and if this continues for the rest of your life - it can soon add up
There are a few things outstanding including fully coming to terms with the disease, the treatment and the outlook. The Operations were successful, things have been caught early but CIS is still aggressive and needs regular management. Additionally, I have been off work (albeit working from home) for some time now and I am advised to stay local. It means that I need to plan my life differently. Anyone who knows me also knows that I am a planner by nature. Things have to be done in a certain order and project management is what I do!
There is uncertainty over my Critical Illness Insurance which I really didn't need at this time, albeit I hadn't even realised I could claim. Given the way Insurance Companies are stated in the press to find all reasons not to pay this adds a level of stress that I wasn't expecting to have to deal with.
I think once I have this treatment out of the way, the insurance settled one way or the other and the next steps known. I can then try and plan out the way ahead. I will be taking an extended Christmas break this year and that I hope will allow me time to reflect, time with the family which is important and get some idea of what I can do in the New Year. Of course that is tempered with the fact that I know I am due back in Hospital in January for a few days!
I think I said it earlier, the brain goes off on a journey about something every night. Yesterday I had been out with a few friends and one was telling the other that it was serious and not everyone we knew appreciated that I (he was referring to me) could die from this.
He is right I suppose and whilst it is an aggressive disease, it is in its early treatable stages and it is still treatable should this fail and more radical surgery is needed. However, 4000 people a year in the UK will die of this so I suppose I was a bit more sensitive to that last night.
It can be other reasons that keep you awake too. Will my employer still continue their excellent attitude to my problem? Why can't I do what I used to do? Will I be able to get back to some level of normality next year?
I can still hardly believe that it is less than 4 months ago that I was diagnosed. So much has happened to me in that short space of time. Also everything revolves around this at the moment so it is not surprising that my business, family and social lives all revolve around whether I have appointments, how I'll feel etc. It is a big problem as you cannot make long term plans. I know that I will be in Hospital in January 2007 and probably the end of the month. Given what happened last time, do I cancel the appointments that I have for 2 or perhaps 3 weeks either side of that? Again, all reasons to lie down and then to start to think of the consequences, the future, the past (perhaps I'll look at that later) and to churn over the day's goings on.
Enough, I'll not be able to sleep if I think of this lot :-)
Wednesday, November 08, 2006
I went out to meet some Friends this evening and apart from having to go to the loo a few more times than normal I had a great evening. Only the very slightest problems with minor aches. Again, really chuffed about that.
All is OK - I wonder if I will be so upbeat next week?
So - nothing to report today really.
Tuesday, November 07, 2006
I have a very slight headache and my arms and legs have slight aches at the joints.
I am taking this as a good sign that the therapy is kicking in already.
I am also feeling quite tired this afternoon but that could be work doing that.
I got up once during the night which is not surprising considering the amount of water I drank yesterday. Other than that I feel fine this morning and I am awake and up and about earlier than I normally am too.
Monday, November 06, 2006
But this time, I didn't feel half so knocked out and after a few days and the weekend I started to get back and involved in work occasionally and kept up the regime of drinking plenty of water and so on. The problem this time is more one of aches and pains, far more so than last time where a small movement would start you off bleeding again, this time that didn't always happen but I actually felt (and still do) my sides aching so that warned me not to overdo it.
I questioned my Consultant and the word is that different people react different ways and there wasn't a problem with this. The one major difference with the second operation was that they had been able to get a full look at the bladder and so had pulled me about a lot more than the first time.
This time I found driving very difficult and also my memory (both short and long term) and ability to string together coherent sentences was seriously curtailed. Other than that, the second recuperation went really well, I hardly sat down in front of the TV at all and spent more time trying to do work and picking up on things I should have done over the past couple of months.
There is not a lot more to say other than that you fall into a routine with these and you learn from the first one what to expect and adjust as you go on. Good luck to you in your recovery. Remember it is also part of the healing process, don't think you can "leap tall buildings" a few days after you are released from Hospital - it just won't happen.
The only side effects so far are a little bit of blood and a very slight stinging sensation. So all OK. I feel slightly hotter than normal but cannot say that I feel anything different on that front this evening.
So far so good then.
So I was more concerned about that than anything else but I knew it could be no worse than the flexible cystoscopy I had had earlier in the process. That used a local anaesthetic.
I have to tell you that I don't think that they used a local today. But the Nurse was ever so nice and in moments the procedure was all over.
I arrived early and checked in and had just sat down - 10 minutes early mind you, and commenced reading my book. No more than a paragraph and I was called through. The Nurse quickly reminded me of the procedure, I went to the toilet and emptied my bladder (as you do) and laid on the bench. You just need to drop your trousers and underpants so no real undressing as such.
The procedure involves inserting a catheter and being brave I didn't look :-) I have got to the point now with all these things to tell the nurse that I am not going to look but will listen and obey their instructions. Also learn to breath properly as that helps settle me down anyway. The catheter really couldn't be felt apart from one bit (the advice here was to wiggle my toes and I suppose that helped a bit). I can't say it was painful, more unexpected and almost made me open my eyes in surprise. That slight bit of discomfort was over in a second or two and that really was all that there was to it. The BCG mixture was put in, I didn't feel that go in, the catheter came out and I hardly felt that either. The Nurse did say that she had done this a number of times and I think that in itself must account for how easy it was.
So I pulled my pants and trousers back on, had the briefest of chats and that was it. My poor wife had gone off to park the car which took longer than me having the treatment. As she emerged from the car park I had already been waiting for 5 minutes to see her.
We arrived home and I had to do 15 minutes on each side (you feel like a sausage in a recipe). So 15 minutes on front, left, right and back to allow the BCG to get every where. Then wait until the two hours are up and you can go to the toilet following all the precautions you will be given. These include using bleach, ensuring you don't get any sort of splashes on yourself etc.
If anything there is a very slight minor irritation but it is so minor as not to worry about. There looks to be a little blood in the urine as well - this is normal apparently.
So 1 down and 5 more to go of these. The Side Effects should start to kick in either next week or the week after and we will monitor those.
I had some fun explaining quite how this was administered to someone the other day. I think Billy Connolly would have fun explaining that to someone like this:
"So I went to have my treatment and the nurse showed me this thing called a Catheter. Where are you going to stick that?" "OH MY GOD, SHE'S GOING TO STICK IT UP MY WILLY!"
So now you know but, please I am the most squeamish person I know and it isn't that bad. I like to think of it as what are the alternatives and let's face it they just aren't even worth contemplating.
More when I know more.
Surprisingly (for me) I slept really well and feel quite calm about the whole thing. In the past before the treatment and the tests I was a bag of nerves. The first test I needed a Valium!
Anyway, so far today so good. I'm sure I will get a little nervous at the Hospital though.
Sunday, November 05, 2006
I left with the order that the Kleenex should be ready between 14:30 and 14:45 GMT!
Alcohol, food and fireworks - just what the Doctor ordered?
I apologise to my wife a lot about it. She is great about it.
I just find that it is something that is all about me and there isn't a lot you can do about that.
Don't be surprised to be so self centred.
Operation 1 (or Scar Wars 1) we ended with me coming home and having a bit of a cry at getting home. I can't tell you whether that was relief, pent up fear of what had happened to me or what might have been - who knows - one of those things. I think that it was because of how fast things had happened. I arrived home less than a week after I had been diagnosed and less then four weeks since I had the first symptoms.
The main thing was that I was quite sore and a bit bloody still where the catheter had come out. Whenever urinating it was stinging and a strange sensation. Additionally you leak and that was quite a shock still. things start getting better straight away though. Going home makes you feel a lot better of course. The leaking and the blood go away after a few days. You have quite a bit of blood in your urine and a few clots or perhaps bits of tumour (not sure about that though) and over the next few days, the blood gets less and so do the little bits too.
I suggest that you put some old sheets under yourself at night. This stops leaks getting onto the bed. I wore old clothes and also loose clothes. I found that I was able to wear track suit (Jogger) bottoms and loose shirts and tee-shirts also I could wear loose swimming trunks as there was little pressure around my middle and hence my bladder. You must not bend or pick up heavy weights and you can't exactly run about. No driving the car for a while etc. So it should not come as a surprise that if you stretch, twist or try to move too quickly you will regret it so DON'T DO IT! As soon as you do something like this you start the bleeding off again and you are back to square 1 in a way and have to take it easy again. A stretching yawn did it for me and I had to take it easy again for a day!
Drink lots of water and fruit juice and also eat plenty of fruit - you do not need to be straining going to the loo so prunes and grapes will help a lot. The early days are the worst as you feel everything when you go the loo, try to move around the house etc. Sitting is about all you can do and daytime TV is so dire, make sure you have some DVDs and videos to watch. Books are OK if you feel up to it and I was but I tended to do most of my reading at night in bed. My sleep pattern wasn't great and I must have lost lots of sleep in the 4 weeks leading up to the Operation. I would fall asleep in the chair but could I get to sleep at night! Damn, I could fall asleep about 4 in the morning and then go through to midday but going to bed at the normal time just didn't work so I was able to read until I felt tired.
It is unlike anything else recovering from an internal operation as you can't see anything wrong with you, there are no scars, no plaster cast no stitches and you can easily forget that you have a scar or series of scars on the inside of your bladder. That is like a balloon and so it moves about and doesn't (I imagine) help the healing process especially as most of the time the wound is probably covered in urine too.
To make matters worse (and this happened both times) I started to feel very itchy on my back and my legs and after a couple of days went to the Doctor. You may remember I spent a lot of time on some of the hottest days of the year lying on beds and sitting on chairs at the Hospital. I can only attribute it to the plastic covering of the bed/chairs or the linen but the Doctor told me that I had a particularly nasty case of a type of eczema and he prescribed some cream to treat this. Thank goodness that my wife was able to put this on for me - how do single people manage. The whole of my back and the back of my legs were covered, later it moved to my front and to my upper arms. It was quite uncomfortable as I had to lie on my front whilst the cream was applied - that made me jump every time it was put on and I was lying on my stomach area so putting a little pressure on my bladder. Anyway, it is one to watch out for and I knew the second time so was able to do something about it quicker.
Overall the recovery took quite a long time, I was pretty much sedentary and could hardly do anything for long. The effort to write an e-mail was ridiculous and concentration was very poor. Someone told me that it was the General Anaesthetic that did that and it would take a while to go. I can still hardly concentrate now but at least I can work for 40 minutes or so and then need to take a break. Before it could take me 40 minutes to write a few sentences.
I managed to read all of the Harry Potter Books in the three or four weeks after the operation. Probably the silliest thing I did was to have the X-Ray so near to coming out of Hospital and I think that made me feel worse and may have knocked me back a bit too.
I also think that I hadn't realised how serious the operation was - these days you are in and out in a few days but perhaps I was trying too hard to be up and get back to work etc. I hadn't realised just how I would feel. Take your time, it is after all a tumour they have removed from you and it needs to heal properly.
I think this will do for now there are other bits to say but I'll try and cover them in another blog.
I was looking at some pictures of my children when they were quite young and - blow me - if I didn't come over all choked up. This lasted for all of about 10 seconds I suppose and for no reason at all. I can be sitting doing something and for no reason I'll get a flash of something sad just appear, almost a small sentence from my brain. Here is one that appeared a few weeks back. "you won't be there at your children's weddings" - "You may never become a grandparent". Pretty harsh stuff really, the last one doesn't worry me too much (far to young for that!). It is where do the thoughts come from? I'm now nowhere near life threatened diagnosis - all is controllable and yet somewhere the brain is making this stuff up and sticking more hurdles in my way.
Anyway, I'm not that worried about them but you really could do without these sorts of things whizzing around your head!
Saturday, November 04, 2006
A nice few days but as I left, Mum was in tears. I think that this disease and its inherent uncertainty make for this sort of reaction and for those close to you to feel as bad as well. It really isn't fair.
I am gladdened though to read the leaflet the Hospital sent me through about the treatment and what it is all about. I like this bit:
"Treatment with OncoTICE is a form of immunoterapy, which helps your body to produce a natural defence against infections or tumours. immunotherapy has been shown to be a more effective treatment for superficial bladder cancer than chemotherapy in most patients. After TUR (transrethural resection), it can eliminate the remaining tumour cells and prevents other cells of the inner lining of the bladder wall from becoming malignant.
Someone mentioned that "all this treatment must be a pain in the arse". Near, very near :-)
Thursday, November 02, 2006
I am thinking of getting the Monty Python Tee Shirt that says "I'm not dead yet!" on it so I can wear it when I meet people - or is that cruel :-)
Anyway, it will give me a few days with my folks and allow my Mum to spoil me rotten for a few days too. Also I'll see my kid brother who also lives near them. I was always the one that didn't need to be near them so they all moved out of the area a couple of hundred miles up the motorway!
Blog will be quiet for a few days
I believe that it is also an education. I knew that my Grandparents and some friends of mine died of Cancer. Before i was diagnosed that was ALL I knew. I spoke to some Friends and found that a few were Long term Cancer survivors, 25 and 15 years so far - one with Bladder Cancer. A friend's wife also had it many years ago and is now clear.
However, you must talk about these things, Cancer is a bad word but these days they can sort you out so it is important to talk about these things. I do as it is educational - it isn't big and it isn't clever it just needs to be out in the public domain exactly what it is like, what you can do about it and to educate everyone you know about what you have. It helps both parties I hope - It helps me as I can explain the whole thing and how I feel too.
Don't hide it, get it out in the open!
Wednesday, November 01, 2006
I love my friends, they are great company and funny and good buddies and all those things. One friend treats me no differently than before - or perhaps he does he is very direct and very much matter of fact about the whole thing? Now I reckon that it is now "our" way of dealing with this. Does that make sense? Each one of my Friends will deal with this in their own way and - curiously enough, I will adapt my response to their lead as it makes them happy with their approach to the problem. Mmm - going too deep again here. Maybe we can look at that later. Back to the thread then:
Each friend has a different approach to me. They aren't frightened of me, I don't think they are frightened of the disease itself particularly apart from the havoc it can wreak. I feel for them because they are straining to know what to do. I mean we have known each other for years and there they are confronted with me. I don't look ill, they know that I am seriously ill and frankly, I don't know that I am seriously ill. I don't act that way and apart from the occasional twinge or ouch - you really wouldn't know. I reckon if you just met me in a bar you wouldn't know I was ill at all.
The illness to me is secondary to a lot of the things that are going on. The sheer strain of the Critical Illness claim which really brought it home (I didn't even realise I could claim) and the way that people react to me is incredible. I mean apparently I am being "brave" but actually I am getting on with it and dealing pragmatically with the hand I am getting dealt here.
For me to cope I have to convince myself that I got the better to the Cancers you can contract - I mean how outrageous is that as a statement.
Given a choice of Cancers to contract - which one would you choose? OK Bladder Cancer has certain issues associated with it but it isn't colon cancer or pancreatic cancer. You know that this one has some issues (accurate diagnosis being one of them) but you know, caught at this early age and despite what I have been through (and I know there is a lot more to come) the long term is actually pretty good.
OK - I have written enough for today. Remember, I live in the UK, we have the NHS who, whatever you say about them, have never let me down. This Cancer is treatable, controllable and now I am in the system, it can be monitored and effectively controlled. What more can I want. Two generations ago you could die from far less serious things. It is all a matter of perspective. I firmly now believe that I am extremely lucky to have a health service looking after me, to live in a country where my treatment is part of my "citizen's package". Some of the most wonderful Friends you can imagine that care really deeply but because they are British are very bad at showing it. Look elsewhere - some people die thorough things that we take for granted so despite all this whining about having Cancer - how can I moan about my lot? I can't, that is how I rationalise it and that is how I intend to get on with it.
I think it is very personal getting Cancer but it is also something that should change you life in other ways. You should live by a totally different set of codes to those you did before you got it.
Generally, I don’t feel ill. I don’t look ill. I don’t act ill (I act a little more strangely perhaps). I take things easy and I don’t act quite like I used to I suppose and of course I can’t work as well as I used to.
However, it has never really occurred to me that this was “Serious” in that way. I was told I had Cancer, I had an operation days later and a few months after that another operation. Uncomfortable, knew something had been done etc.
I think I expected it to be like other things you get – you get cured you think no more of it and you go back to work. Wrong, not with this little beauty you don’t! It can recur and with quite alarming regularity. You can carry on having tumours taken out for quite a while and you can carry on having treatment and being seen and observed for the rest of your natural by the looks of things.
So – still do I feel ill? No.
Then the consultant explained which way “up” was to me. Untreated this is a significant threat to you – and they meant life – you can tell. “As it is, we are taking no chances with you” – yikes (as Scooby would say)! Still it hasn’t sunk in. I think I should be a lot more worried about this than I am. I wonder if that is what people’s expectations of me are. Perhaps you are meant to walk around all “doom and gloom”?
But, it was realising that things like Critical Illness cover kicks in and that possibly, I won’t be the best insurance risk in the future that has started me thinking, albeit only in the past week or so, that this really is a disease I need to take seriously or to feel more worried about or perhaps.
When do you take it seriously? Is Cancer – the word – something that you worry about? I don’t profess to know the answers just yet but it is an interesting and eventful journey. This blog alone has opened up so many ideas and opportunities from something that many people (who have experience of Cancer but only as a bystander) consider to be a terminal disease. Yet I have found out that it doesn’t need to be. I’m young (by my own standards) I can actually defeat this if I work at it. If I can’t defeat it, modern medicine can control this and strangely I will probably die from some other cause totally different to this one!
Trying to do figure work (calculations) takes me absolutely ages. Procrastination is also a big problem. I suppose I know how I’ll struggle to do something and put it off.
Writing, like this is relatively easy but business writing takes an age to get right. I find my mind wanders off after 10 or 15 minutes. I have to get up, walk around and then come back to what I was doing.
Apparently I am not alone in this. Some wag told me that it is very distressing but in the end you forget about it!
So expect some silly memory loss, loss of words and also lack of concentration. It is getting better but slowly, slowly
So, slightly out of sequence with the rest of the blog here is a view of the first operation I had. This is a bit long but I suppose the whole thing is therapeutic for me to tell it as it was. Whilst a bit on the indulgent side, I hope that if you ever have to go through this you may take some small comfort in the following things:
- Everyone is really scared of Operations - it isn't just you
- You are allowed to be really frightened and to cry and to be cross with people who don't understand you
- It is your body - only YOU know what you are feeling and what they are doing to you. Only you can tell the Doctors if you are in pain or if you don't understand something. You are not "in control" but you can ask questions and I believe you should demand answers (within reason)
- Lose sleep - I did - but make it up when you get home
- The Doctors tell you to do lots of things you don't understand but do follow their advice - the bit about drinking lots of fluids - do it - it really does help
- This is not a "Punishment from God" or anything like it. The Doctors and Nurses actually want you to get well and you should do everything in your power to make yourself well, to recover quickly and get better
- Don't overdo it. You cannot have major work like this done and think you are going to run a Marathon in 6 months IT WILL NOT HAPPEN.
Having given you the bullet points of the day. Here is the remaining missive. Not as long as War and Peace, not as interesting as Lord of the Rings but a little story of an ordinary bloke caught up in something that 4 weeks previously had not even been thought of. I had a new job - the job I had dreamt about for most of my working life. I had just got my feet under the table and this happened.......
Now read on.
Four (two working) days after the Flexible Cystoscopy I arrived on one of the hottest days of the year at the Admissions Lounge of the Hospital. I had not had any pre assessment and no X-Ray because of the preparation time that would have taken.
I had nothing to eat or drink after 5:30 a.m. and as I’d been awake all night it meant that I could easily ensure that I had my last food and drink for that day. Grapefruit segments and a coffee were my meagre breakfast in the early light of the 25th July 2006.
To say I was nervous was an understatement. There were lots of people in there, the on duty nurse could have done with a brain transplant as she was as much use as a a chocolate teapot. she didn't know who was up next and didn't know a lot at all really. People were nattering nervously (I tend to go very very quiet in my nervousness) those around me were chattering incessantly about nothing at all and the TV was busy playing daytime re runs of some cash in the attic crap or some such stuff - very annoying. My wife (bless her) came with me and I put on my CD player and listened to lots of classical music to try and calm down. One by one everyone left and I was still there 4 hours later. They let me have a mouth wash which was great and at 4 ½ hours after first arriving I was finally admitted.
The flurry of activity when I got on the ward was amazing. They had to take a blood sample (probably the one thing I hate most in all the world is needles). Having got that out of the way then it was on to weighing, measuring height and all that, getting into the Operating Gown and answering about 20 pages of questions. Then the Anaesthetist came we went over the questions and then an assistant Doctor who ran me through the procedure and what to expect.
Things had changed in the 30 years since I had last been in a Hospital and probably for the better. To calm down I kept trying to listen to music but would be interrupted quite a bit. They measured me up for DVT Stockings – I put those on and I was down to Theatre I suppose 1 ½ hours after getting onto the ward. As I said it was a very hot day, probably the hottest of the Summer and it was a relief to get into the air conditioned Theatre complex – the Wards being naturally ventilated (yea right!).
Theatre is probably the most frightening bit of the whole event. You are there on a trolley, you’d love to run away but you are surrounded by porters and Doctors. You get wheeled around watching the lights on the ceiling like some sort of ER movie. Then you go into the Prep room and you think stupid thoughts – the one I think is “Will I ever wake up or is this it” – I find that it isn’t a particularly reassuring thought but sort of reflects my thinking at that particular moment. I think you get to settling stuff with yourself and then, just as you do, you realise that actually, you don't have enough time to resolve all the things you'd like to correct in your life, to right the wrongs, to change the world and all that. Perhaps we are not meant to. Mmm - this appears to be going off at some deep and meaningful tangent so I'll stop that thought direction for now and get on with the story.
I met with the anaesthetist and the Theatre helper and then my Surgeon. They then put on some heart monitoring sticky pads and blood pressure sleeve (which ended up leaving a trail of scratches down my arm). Then it was time for inserting the cannula or canula into your wrist. Now this is the bit where you are allowed to swear but this one was better than the second or x-ray ones. It stings I suppose. I’m sure they inserted a blunt one on the second Op. So swear away and really put some venom into it - they expect it and they know far more swear words than you do so let rip!
Then there are some drugs that go in and then a cold sensation and that is it “good night Vienna”. They say you have really pleasant dreams. I don't remember anything at all certainly nothing nice. Perhaps you have to be receptive to that sort of thing?
You wake in Recovery and I was absolutely desperate on waking to go to the toilet. The Nurse told me I had a catheter in. I wasn’t convinced I HAD to go; so a shot of some sort of pain killer and the sensation passed – thank goodness it felt like I was going to burst.
At this point always ask for something to drink. You get the best tasting water in the world. Your throat may hurt as you have had a device in there during your operation. Also you haven’t had a drink for hours. Sip it slowly though - it is nectar.
After a while and I couldn’t tell you how long, you get transferred back to the ward. You then notice you have all sorts of bags hanging from your bed on poles. I had a saline drip to keep me hydrated I believe and two thumping great big saline bags which were washing out my bladder. I couldn’t see what arrangement was there but the catheter had feeds from these two bags and another collection bag attached to the bedside.
Now all was well, I felt wide awake, was chatting to my wife who had been working locally. That was fine – they had saved a sandwich for me and they made me a coffee. I was just starting to eat my sandwich and had a few bites out when they started messing around with my catheter as it wasn’t draining so they do a little trick with a sort of backwash to clear it. I said that I felt dizzy and then I said I feel feint.
When I came too – yes I passed out! I had managed to knock the coffee over the nurse who was messing about with the catheter (serves her right – fancy just diving in there and doing that whilst I was trying to eat – you get no privacy or dignity sometimes). I was jiggling around on the bed and it felt like I had cramped my legs but apparently that was because I had gone quite stiff on coming out of the feint.
The nurse reckoned that this feint was something to do with eating on an empty stomach or some such stuff. Anyway, it gave everyone in the room a shake up and wake up call. After that, I didn’t have too much to worry about but they did transfer me to another ward which was a specialist Urology one.
I’m going to say that I didn’t get any sleep that night but I think I probably did. However the 5 am blood pressure and temperature taking was a bit of a shock. Later that morning they took away the saline drip. During the night I had probably gone through 4 more large saline bags that were washing out my bladder. So they stopped all of those and removed the bags. I was transferred to a leg bag from a bedside one and moved out of bed to a nearby chair. The evening before my wife had brought in an electric fan as it was so hot and I set myself up with a fan, my music and a book.
I had a wash and changed into some hospital pyjamas. I felt a lot more comfortable. At this time, unbeknown to me, the heat, the chair and possibly the linen were about to give me a heat rash (or what I thought to be a heat rash).
The day passed very slowly and they checked the amount you drank against the amount you passed out with repetitive regularity and I didn’t feel much like doing anything. TV was an option but having to shell out money to watch TV when I would be going home the next day didn’t appeal. I managed to read half of the first Harry Potter book. In fact by the time I went back to work I had read all of the Harry Potter books and started on some history books too.
The Consultant’s do their round very early in the morning. They told me all had gone well, what they had seen and what they took away and I was to see them in a number of weeks after the X-Ray as they would have done the Pathology tests as well by then. If I behaved myself the catheter would come out in the morning and I could, if all things were functioning normally, go home. I was to rest, not bend, not lift and a whole list of things of do’s and don’ts were provided to me.
Again, I felt that that night I didn’t have much if any sleep. I had no idea what having a catheter out was going to be like (patience – I’m coming to that bit). So morning arrived and joy of joys, an injection – they gave a small shot of antibiotic to ensure there was no infection. The catheter is a complicated looking thing and I tried not too look but was sort of not in a position to do much to start with. They take a sample of urine to be checked. They then let the water out of the catheter – this has been pumped in to hold the thing in place. After that the damn thing is drawn slowly out and you have to cough a few times as it passes the sphincters but after that there is a slight pulling sensation like a vacuum I suppose and what can only be called a tear inducing feeling but not painful, just a weird sensation I suppose. The relief of having the damn thing out and being “free” of it are greater feelings than having the thing come out of your body so you feel a lot better immediately. At this point, I was also allowed to get rid of the DVT Stockings and to go for a shower.
Best shower in the world? Possibly. I remember standing in the shower for ages just letting the water run over me. It had been a really hot and sticky night. In fact I now remember having a thunderstorm that lit up the ward from about 3 in the morning – most impressive. Things are a little sore I remember and real care needed to be taken to wash all the crud and bits off. However you do feel so much better.
After I had had my shower I had to urinate into a jug so that the nurses can keep an eye on what has been drunk and what has been passed – this is to ensure that you are not retaining water. Anyway, thank goodness for Hospital pyjamas as there was some blood oozing out and I am afraid that you leak a little bit too.
A tip is to ensure you hold on a while before going as that way you don’t strain yourself trying to urinate. Second time I held back a while and found that helped and I got to go home earlier. This first time, I took ages to sort this out and they had to keep checking me with an ultrasound machine. After I calmed down a bit they finally released me in the mid afternoon. My wife came and got me. It was strange to walk all the way to the car park from the ward. John Wayne would have been proud of my walk! It took a while but we got there. I used the lifts instead of the stairs. We don’t live far from the Hospital and I was home in 5 or 10 minutes.
I remember looking at my wife and saying that I was feeling very tired and very weepy. I went in to the living room and bawled my eyes out for a few minutes and let out all the anxiety, shock, worry and everything else out. That was probably the release that was needed as I felt a lot better for that. I’ll write up the story of the recovery process in another blog entry.