Defence Mechanisms and Coming to Terms with the Big C

I still firmly believe that once I had got over the first few months of disbelief, horror, terror, revulsion and upset that I went into a very interesting state. That included understanding all I could about my disease, its treatment, its various outcomes and my chances of getting out of it.

Frankly, my chances were pretty good once I had spent time understanding where it was all going and even if things had gotten worse, there was still a way forward that would have given me 5 or many more years.

The defense mechanism is to be brutally honest about what I had, tell anyone if they asked, tell people how I felt (even if I felt s**t) and to be confident, have a sense of humour about it and to approach it in that way. I've never looked at this seriously until now, afterwards as I have been taking it as it comes knowing I was on the roller coaster and that it would stop when it wanted to rather than when I wanted it to.

The end is in sight, the roller coaster is slowing down. Whether I am dizzy from the ride or from the expectation that it will soon be over I haven't thought yet but it just seems to me now, after having gone through most of the treatments and operations and tests that now I am slowly coming to terms with just how ill I was and just how much this has taken out of me. Clearly I am a lot better than I was a year ago and certainly 2 years ago. In fact I am probably healthier than I have been in 5 years in reality.

However, I look at myself now and I realise how much it has taken out of me these past few years. Putting up a fight and battling mentally and physically I think have really taken it out of me. As you can probably guess, the battle is constant, you don't get a weekend off and you keep your guard up and you work at many levels. Certainly one of the most peculiar things you have to do is to keep the spirits of your own family up and reassure friends and family that you are OK and that you are doing well and that you will improve and so on.

Once you get past all that life changes yet again and this weariness takes over. No doubt, it will pass, as all of these trials and tribulations have done these past few years. If anything, putting up a fight, putting up a defence mechanism are all parts of the beating of this disease. Coming to terms with it - well that is a different thing.

These days, you are more likely to survive Cancer. The advances are phenomenal and these are noticeable even in the past two years with bladder cancer and treatment regimes and also some of the cytology testing. It is becoming more like a serious disease that you can live with. Sure, it "ain't for sissies" thanks to an American cousin for that one :-) but it is treatable, you can continue to work (although I was lucky not to have to do too much travel etc). I actually think that had I been working full time, I may have been able to work my way through this a little better in a way as I would have had a different routine but - that wasn't my choice. I think what I am trying to get at is that is can be lived with these days and is just as treatable as some other serious diseases (heart attacks, liver or kidney problems etc).

So finally, coming to terms with the Big C. I haven't come to terms with it at all yet. It still hasn't really sunk in. Recent events tell me that I know I have had something seriously wrong with me and I know "what" it is. It just hasn't hit me in any strong way what that actually means or quite how I should react to it. I had all the emotional responses right at the beginning - I know that I am completely changed as a person now but the defence mechanism is still working and protecting me from the possibility that I may not have got the favourable diagnosis, operation results, effective treatment and recovery. Maybe because I did get everything favourable - I don't need to look at something that didn't or hasn't happened?

Back to the insomnia

So awake am I at almost 1 in the morning I thought I'd come into the office (at home) and type it up in the blog. This LINK is pretty good at summing up the fatigue problems. Now, I have the insomnia back. I'm now running through my head that I should have gone to work and done certain bits of work last week. I'm on some guilt trip about being ill again.

I'm not too serious about that last statement. I just mean that I am the sort of person who is concerned that I shouldn't be having days off and I don't normally - whatever "normal" may be these days. I remember writing a heart felt apology letter to the company I was working with when I was diagnosed as I hadn't long started with them and didn't want them to think that I joined knowing I had something like this. I'm like that - a strange sense of honour/duty I suppose.

Anyway, the holiday cannot come too soon I think. I need a break and to just give myself a couple of weeks without anything to worry or hinder me. This year, I won't have the same pressures as the past two years. Well in year one I was recovering from the operation and we had no holiday at all. Last year we were on the Cruise but I wasn't anywhere near as well as I am now and I was also under some pressure about reaching my targets. Not that, on reflection, it did any good reaching them anyway :-)

I really don't need this swinging between tiredness and wide wake. I really could do with getting back to normal again. I probably, more likely, need to perhaps now reflect on just how seriously ill I have been and realise that after fighting this for two years, I am bound to be tired or insomniatic sometimes :-)

Was OK I suppose

I had my blood pressure and it wasn't great but it was way down on last year and if you took 10 off it would have been fine which sort of sits with my normal reaction to going into a Doctors surgery. Then went and got my blood done - took 45 minutes waiting but got it done OK, so happy about that.

Got my hair cut - I told the hairdresser that I had been stopped by the health and safety people and my hair was a "trip hazard" She wasn't amused. Anyway - I did that and to celebrate - as I hadn't eaten, I went into the local pub and had a Black and Blue Burger (Burger, Bacon and Stilton cheese). Very nice too.

Back home and reasonably pleased with today. Did some more research on the fatigue problems and understand more about it now. I am hoping to sort something out about that.

Now looking forward to 2 weeks time when we fly off to the Azores for a Holiday - in fact I am almost getting excited about this as I can live out some of my childhood books on these small Islands and imagine Long John Silver and Robinson Crusoe :-) Anyway, at least I'll get a rest.

Tests Day

Blood Pressure followed by Blood itself. I have had to fast for a minimum of 10 hours - not difficult, just do that overnight. I'll be a little hungry by the time I get my test down but at least the queue will have gotten smaller by then, it is normally absolutely crazy first thing. This way I should only have to wait about 30 minutes or so.

These are tests for whether or not my blood pressure and cholesterol tablets are working (not that I needed thee latter - they just give Statins as a precaution these days). You can't tell whether things are better as so much else has gone on. My own blood readings tend to bear out the fact that overall my readings are lower although I'd like to see them lower than they are now they are still acceptable. I need to get back to being a lot fitter than I was though to do that. Spookily I haven't felt this well for years even after these recent fatigue bouts. I have a general feeling of "being better" and getting better as time goes on.

I feel fine this morning - slight fatigue but nowhere near as bad as yesterday's lethargy. I have today and the weekend to get myself back to normal and hopefully, I can get to work on Monday and do a full day without feeling tired.

Another day wiped out

I didn't get home until late on Wednesday evening and so much for cutting out the beer a friend of mine turned up and we had a few beers. However I wasn't really prepared for Thursday morning and in fact for the whole of Thursday as I was totally wiped out again. This fatigue thing is really getting concerning now as it is unlike me. I suppose I ought to be thinking about taking things easier and perhaps, I will just approach things differently after tomorrows tests - well today's actually.

I must have slept for about 15 hours today! I'm wide awake now of course when I should be asleep. i shall try and get back to a level of equilibrium.

I can't really explain quite how these periods of exhaustion are but I just didn't want to, and actually probably couldn't have done anything other than sit. Getting up to get a drink was almost too much. It was the height of laziness almost but every part of my body felt limp and tired and my brain couldn't fix on anything to do.

I hope that this goes away soon though as it is affecting the work I was planning on doing.

On the Wagon

That may be a UK colloqiualism but - it means no more alcohol until after Friday. I have my Blood Pressure and Blood Fasting tests on Friday morning and I'll be making sure I don't do a silly like last time :-)

I still don't fancy having my blood taken but needs must I suppose and I will have to get used to having a couple of these a year. I used to have one a decade before these troubles and even then not an armful! Thanks to Tony Hancock for that one :-)

Had a good evening out with my Nephew and an old school friend. A good evening and now to get ready for work tomorrow and see if I can stay the course this time :-) Poor old fella!

A Royal Day

I couldn't say much but we have been leading up to the Grand Opening today and I got into work in time to see some more of my pictures go up in the Exhibition area. I had been working with a small committee for the day but - of course, you can't say anything and most of the staff only knew yesterday.

It was very nice as HRH Duke of Kent - who is our Grand President came and opened the offices. we thought he would only shake hands with a few people but he shook hands with us all and had a chat to quite a few too. Luckily we managed to get back to work pretty quickly afterwards. A lot of preparation for about a 40 minute visit.

Back on the hot flushes again

I remember these and had the occasional one last week and the week before. Back now and it feels like I am sitting in a sauna.

This getting better malarkey is no joke, you get all the seasons in one day here, hot, cold, awake, sleepy. If I could think of a few more I could get to seven and make them sound like the Seven Dwarfs, but I can feel the headache coming on again together with the flush so I'm not going to bother.

This is just the most bizarre set of sensations. Don't do drugs, have Bladder Cancer! :-)

And then the Truck Reversed over me :-)

I got up at my normal 5:30 this morning and immediately felt that I wasn't right. I was so tired and this from someone who slept a lot on Saturday afternoon and slept in on Sunday and fell asleep a number of times yesterday.

It must be the aftershocks of the treatment and I imagine I had these before but as I wasn't working flat out, travelling everyday and able to work flexible hours, that I didn't notice them.

I feel OK now that I have had a further 5 hours rest but it is very noticeable how my mind and body just shuts down and when the episode is over I am back up and running again. Very strange.

I wouldn't mind but it was going to be a good day today at work and I've missed that. Oh well there is always tomorrow. The important thing is that getting well is more important than missing work for a day and anyway, I'll do some work this afternoon anyway at home as I can. Some people don't have that advantage.

Strange Day

Listless, felt very strange all day long and now I feel a lot better. I have no idea what all that was about at all.

We had an interesting day the British GP was won by Lewis Hamilton which was good, Wimbledon was a thriller and we were trying to sort out our holiday which may finally be settled as long as the Travel Agent answers the questions we have correctly.

Trouble is that two of us like sun and lying around doing nothing, the other two fry in anything much over the mid 20 degrees Centigrade (about 70 F in old money). So the Mediterranean is out and no matter how hard I try getting them over to the US is not an option - I may have tried Canada but not for just two weeks. A real pain as we have to be back for results and youngest doesn't finish school until late and so we have a three week window to fit two weeks holiday in!

So we may well end up in the Azores - I fancied Cape Verde but with only a few weeks notice we cant quote get the package that I wanted.

I have to miss out later this year on going to Spa in Belgium for the Belgian Grand Prix as I wouldn't get back in time to have my 2nd BCG of the last round of treatment. I know where I'd rather have been :-)

Anyway, I'm a lot better and ready to go to work tomorrow which at one time I was contemplating not going in. I'll see how I am in the morning but I should be OK.

Writing this I have just broken out into a sweat again, which happens occasionally after BCG treatments and so perhaps it is ongoing reactions to that.

Getting hit by a truck

Well - I haven't been ill for two years (colds, flu, not even much of a sniffle). Yesterday I got progressively more tired and listless and struggled to stay awake much and kept dropping off in my chair. I didn't eat last night and took myself off to bed.

I think that it is exhaustion - I slept for 12 hours and I still don't feel "right". I couldn't say what it is, just a general malaise.

I am pretty much convinced that it is the increase in my activity and my body not really being fit enough to cope with it. I will have a lazy day today and then see how I get on. I must eat something even though I don't feel like I want to.

Another good site to help us Bladder Cancer Warriors

Try this site which has some great pictures and a lovely "off the wall" sense of humour (or should that be humor) to cheer up and chase away those cancer blues.

http://gotbladdercancer.blogspot.com/

The journey has its ups and downs but you need to see the funny side in it as well and to keep your spirits up.

Someone asked me at work why I was always happy and that they have never seen me moody or upset or angry. The answer is easy - I'm alive! I'm getting better! I didn't think I was going to be here 2 years ago! The answer is that everything has a positive and adding that to the previous three statements makes for being happy and communicating that to everyone you meet.

Having a job that I thoroughly enjoy, people who are a joy to work with, whose idea of a deadline and pressure are far removed from my experience of what those particular words mean also makes it interesting and for me to be happy too.

My Birthday

I was out last night with some friends. Oysters and a nice Lebanese Red Wine to wash them down, a Turkish restaurant and then home. I could have done with out the Turkish Chili sauce.

A nice evening, I'm up early but not sure if I will feel able to continue to work a whole day. I managed that (and a bit more) yesterday. It was a long old day and a committee meeting in the afternoon dragged on far too long.

So after 2 years? I'm alright now and having turned the corner don't think much about BC apart from this blog and some of the times I get tired or have to have some tests, treatments or other stuff done.

I think that setting some targets to achieve has got to be the way forward now as I'd hate to get over this, do nothing and letting my guard down somehow get a recurrence. Moving on is what is needed and I fully intend to do that.

And yet

When I want to get to bed I am wide awake - it is like some crazy reverse jet lag. I know in the morning I will feel rubbish and yet now, when I should be asleep, I am wide awake.

Doh!

Fatigue

I can understand how combat soldiers coming back from battle could sleep for days. I can really feel for anyone who has chronic fatigue syndrome as I am really struggling. I have hours when I work like a demon and the times when I just can't get going. If I have to hit a deadline tat is OK. Immediately afterwards, I am wiped out, half falling asleep.

I get on the train and I am out like a light and at home I can sit in my chair and almost pass out, so sudden is the descent into sleep.

It is quite common in Chemo, Radio and Immunotherapy. I also think that it is the "general relief" after having spent close to 2 years "combating" this, I suppose you let your guard down a bit and take your foot of the gas and then the relief is this utter fatigue.

I spent most of the time, last treatments, at home and so worked around these by getting up late or cat napping or working when it suited me. Having a more 9 to 5 job really knocks it out of me.

2 Years to the day (and almost the hour!)

Since I got the first real and massively visible signs that something was far from right.

I remember thinking to myself that it had to be more than having strained myself or "done myself a mischief!"

I'd arrived at a Hotel after a 4 hour drive and went early as it was the World Cup football and as we were playing I managed to drive on almost empty roads. I had stopped and there hadn't been a problem at the roadside services.

I got into my bedroom and went to the toilet and urinated what can only be called Red Wine. It didn't stop there either and for the rest of the day I carried on and the day after - I decided enough was enough and phoned home and got a Doctor's appointment. In hindsight, walking into town and buying a pack of cigars and smoking wasn't the best idea I have ever had but it calmed things down considerably.

Of course, once I knew what it was and that it was smoking related - you can bet that I haven't touched a cigar since. Although the other day I looked at one in the pub and thought, do you know what? But I know a LOT better than that.

So two years. Amazing - it does and doesn't seem that long. I can calculate that it is though.

Like flicking a switch

I've noticed that I am having some really good days and then some very poor ones in terms of fatigue. Today - I was falling asleep at the desk and came home early. Yesterday, I was going like a train all day long and well in to the evening - a long story but had to hang around waiting to get home...

I feel wiped out today. I shall get to bed early and see what tomorrow brings.

The deed is done

I signed up for the Degree course. Whether I'll get in or not depends. If I do I'll start foundation in October towards a BA (Hons) History. I've always fancied doing this and it will give me something to work towards over the next few years.

Wat is great is that where I work are some of the galleries and museums that I will need to visit and they are all withing 15 minutes walk of my office - cool!

I see this setting a target as part of my recovery and part of working on long term things again and getting away from having to set quite short term goals and achievements. It is good to get yourself along with little victories and little steps in the progress to getting well again and whilst I can't say I am out of the woods yet, I can at least see the light above and around me. The dark days are receding quite fast and the brighter days are ahead of me, I find it hard to believe that on Tuesday I would have been at work for 3 months! Where did that go? It feels like 3 weeks!

I'm also beginning to see the results of my labour and so things like the Annual review has been published and the diaries (yes we do do diaries at this time of year - 18 month ones which run from August this year.... These mirror the Masonic season and allow forward planning into the next season too.

I am working on a couple of new things which are keeping me busy including a new brochure for us and one for a Province as well as completing the Exhibition area.

I feel really well and I am beginning to be optimistic about life again. There is always a doubt and how often do you hear that so and so recovered and then it came back again but the 2nd time it killed them? Well I don't want that to happen to me (who does?) and that little black cloud of doubt will probably always be there but, it is controllable now and I am pleased to say that the Black Dog hasn't been around for quite a while too.

What a difference a couple of months make.

Tiredness - Update

If anything, knowing about tiredness and fatigue has helped a bit this week as I have been making sure that I move around a bit more and if I am feeling tired that I actually get up from my desk and move around and have a short walk or do something active. That seems to help.

I'm not doing much else different but also having a long chat on Thursday night helped too. My Hypnotherapist friend has a way of explaining stuff that puts this into context.

Next week to look forward too and I imagine not having the prospect of having a catheter inserted in me tomorrow and being sore for the remainder of the week are also something to look forward to and make me feel a lot better.

Come on Cousin

Starts Chemo on Monday and certainly hope that it does the trick and gets things in a position where they can control and sort it out.

Not a nice thing at all. As usual, young, fit and non smoker! Actually in this particular cancer it isn't smoking related.

Positive Mental Attitude, can do approach are the best tools to get through this.