Cancer Buddies

I thought that THIS was interesting in today's BBC News.

A quote "People say they know how you feel, but they don't" from Ray Bryant kind of summed it up. No matter how you imagine it to be, it isn't anything like you thought it would be.

I still go back to the frequent catheterizations and explain that it isn't like you think it was going to be. In fact a number of the experiences just aren't in your every run of the mill day experience.

The buddy scheme and to some extent I hope recording what goes on in this blog - even the dull and boring - gets us away from the stigma and prejudice attached to cancer. Life goes on for more of us these days. Also, how you cope with treatments and what you do may be useful to someone else. No one told me at the hospital and tricks to combat the side effects. I devised that myself. That is the sort of thing that needs to be recorded so that others don't have to go through the same problems.

Combating tiredness

I still find it surprising quite how much energy has been sapped out of me these past 31 months. I struggle to do a full days work at full speed unless I am really into it and excited by it. In the latter case, there is every possibility that I will pay for that with a day off work at some point in time. I get home so tired that I just about get a chance to eat and if I sit down, I sleep.

I have been trying to work out some sort of habit to get into that would involve some serious exercise to see if I can combat the tiredness with physical activity, losing weight, generally getting fitter, lowering blood pressure and so on. All the good things that exercise, added to my careful (but not Hermit like) diet already do. I had worked out that getting home from work would be a good time to do this. First thing in the morning should be avoided - it does more harm than good I am told. Anyway, it seems only logical that as I leave for work early that when I get home is the right time.

Why don't I? Because I am tired and listless and yawning and ready to fall asleep straight away. Before, when I was exercising every day (in the morning) I was actually working from home which made a big difference to me. Of course I wasn't doing myself any favours :-) I used to get up and then go do my exercise before Breakfast and then had a Shower. Then I could crack on with work, do my BP measurements and stats etc.

Working like I do now doesn't give me the personal time I had back then and I am often out - I was out three nights this week! That is irregular and so schedules aren't really going to work even though I need them for getting the habit of exercising.

I need to come up with something creative. One of the guys at work goes to the Gym, three times a week and in the nicer months, also goes running at lunch time. I don't fancy that at all as it would break my day up too much.

I'm sure I will come up with something.

Still not a word

I suddenly thought that I haven't received anything from the Hospital. I think I'd better drop an e-mail over to them if I haven't heard later this week. It seems strange that there isn't anything and it will be 5 weeks since I was told to go back onto maintenance.

A quick e-mail halfway through the week should suffice I hope.

Nice to have my old laptop back and with a new hard drive it has a new lease of life. It is actually my favourite machine as it has a big screen and is wide screen which I bought because I was away and could watch DVDs on it.

I have re-built it this afternoon - no great issues - lots of updates and patches to add and miracle or miracles, the man in the shop managed to save my files from the hard disk - which is great and so I don't need to try and do three years work again :-)

Mind you - let that be a warning - the hard drive is dead and yet he managed to pull off all my old files. Impressive stuff indeed.

To have or not to have that is the question

I re-read some of my posts and also noticed that Steve talks about having Bladder Cancer.

I wonder whether either of us actually do? I suppose it is pedantic semantics but they cut mine out and it hasn't come back for 18 months. Sure I'm still suffering from the after shocks and still being treated to keep it away but do I have it? I suppose it is as easy to say to people that you are "suffering from Bladder Cancer" as that is what is actually happening?

I still think that I AM suffering from Bladder Cancer even though the Cancer itself isn't there anymore. Of course, we all have the possibility of it coming back though, that really is the fear factor on this one.

I'm a little less buzzy today thank goodness. I am getting pretty excited about this business venture I have been working on for some time and it is all coming together and taking shape and finally we realise that there is a real leap forward and we can go and do something now - as we are, off the drawing board now.

Still - exciting times are ahead on that.

Friday - A Good Day

You know Andy P's news was great and it encourages all of us who have this funny old disease called cancer to look towards that day when we can say goodbye to the Hospital and the Doc for good.

Until that day - triumphs, like Andy's, makes it all more bearable.

Today I have been on a buzzzzzzzzzzzzzzzzzzzzzz. Yee Gods, have I ever been on a high caused through a meeting of minds on our business proposition and I was centre stage for a half an hour.

Tonight the curry club crew went out - 7 strong we were - and the most marvellous curry and good company was enjoyed by us all.

I was a little bit lively to start with but managed to suppress my adrenalin fueled buzz from the previous meeting thank goodness.

We had a great day business wise.

Just a good day - I am now home - very, very tired. Off to bed in a minute - I doubt I will need a nightcap to sleep!!

Time to Celebrate

Just had an e-mail from Andy P. It is great news - the best. He woke up without all the usual paraphernalia, and was told that all looks clear and he didn't need the biopsies, he has to go for a flexi in 6 months.

So:

WELL DONE ANDY - WAY TO GO (whatever that means?)

That is the best news possible and I suggest choosing numbers on the Lottery immediately he is able.

Blogging mid afternoon - on a work day?

Yes, I finally had to give in and leave at 2 pm. I went for a walk and still kept falling asleep at my desk. That's dangerous for me but also other people so I decided to come home. It took all my concentration to stay awake on the express train as I might have ended up 60 miles away in Hastings if I'd have fallen asleep. I played loud music but still managed partial snoozing!

I am home and had a call just as I got here so I am in this sort of half life at the moment. I have that "stuffy head" which is screaming for sleep but not right this minute. I actually plan to wander downstairs and hit my favourite chair and have a snooze there after writing this. I am yawning away.

Andy P has hopefully had whatever it is by now and is drinking that nice cup of clear fresh water and fingers crossed all is working out well for him.

Me - that is it - I HAVE to go and get some rest - I have a big day tomorrow and must be ready for that.

Dog tired - again

4pm and I was nodding off again at my desk, I had a double espresso - it did nothing! So I stood at my desk - making the place look untidy. I got my train, promptly slept all the way home (hope I didn't snore) missed a few phone calls too - I don't think my phone went off it may have gone to answer in one of the tunnels.

I see Steve K in the US is also suffering from tiredness. It is the one thing that I noticed either post BCG or Post operative. Strangely enough last year I was having massive fatigue and wasn't even able to get out of bed. I used to have to have the day off as I could sleep for hours.

I put it down to Post Cancer Fatigue and also that you whole body after BCG is out repairing cells, kicking out old ones and I think that the analogy to having post traumatic stress disorder is also - in a way - true too.

I think the only way out of this is to exercise, continue to eat properly and to ensure that you don't try and do too much. I certainly noticed that a few late nights and the payback is a few days afterwards as I can hardly keep my eyes open.

Andy P is due in to Hospital tomorrow and I have dropped him a line. He has had his TURBT and is going in for the 3 month check up. Lets' all wish him well and hope for a good outcome. Andy's staging is a lighter grade of cancer (can there be such a thing?) and he had a TURBT to get rid of it. Tomorrow he will find out the initial visual details and perhaps in a few weeks time hear what the next steps are.

For us all it means long term care, review etc. Which also begs the question - what on earth is happening to my treatment. I went to the Hospital on the 22nd January and it will be 4 weeks tomorrow and I haven't heard anything??

Tuesday - are you SURE it isn't Friday?

By 4 pm I was nodding off at my desk. I managed to hold off until 5 when I met my friend and went for a few beers and had my first Burger for what must be a year or more - Good Old Burger King!! We had a few beers and a burger, and got the 9 O' Clock train hence I am writing this at 9:45. My friend's wife also dropped me off home which was very nice indeed.

We had a long and interesting chat tonight and it was nice to get home at civilised hour. We often only just make the last train home! I suggested that we must be getting old if we were home by 10!

I cannot believe it is only Tuesday - so tired am I. I hope I manage the rest of the week :-)

A first

This year - I actually drove my car for the first time in 2 months I guess. Was a bit surprised how fast it was and managed to out score the traction control at one point. Ooops. Nice to be back in the Cat though even if on a local journey.

Dear oh dear though I have been yawning all the way through the evening and the tinnitus is driving me mad today. I got to my destination in time for my ears to switch into "muffled in a tunnel" mode! Great - it made conversation very difficult indeed.

I can see that by the end of this week I will be having to have another rest as I am also out tomorrow night now too.

There is an underlying fatigue to just about everything I do these days. The utter fatigue can just switch on and you hardly know it is coming as you tend to feel tired all the time. Tonight - I just kept going and I am through it but there will be pay back somewhere and it will turn up when I least expect it.

I've started to have mild cold symptoms again today but so far it is just a runny nose - I want it to stay that way if possible. Not sure if I could cope with a second cold this year.

Still nothing in the post

It is getting to be a bit of a waiting game. They haven't done this to me before and I am a bit surprised but perhaps it is that there isn't too much urgency and they will fit me in when they can. The later it gets now the nearer the operation will be to holiday time though so not sure about that.

I can only guess they are also catching up after the backlog caused by the weather too.

Whatever they are doing it is leaving me a bit in "no mans land" and I'm not a great lover of being hung out like this as I can't get on and plan things.

Work was a bit flat today - I couldn't get into my normal wit and repartee - I have been told to try harder tomorrow, so I will!

I wonder what the hold up is?

I heard from Andy P and he will be having his procedure on Thursday, in the morning and I'm glad that his BP has returned to normal.

Steve K has finished his BCG instillations on the day that this was published. It describes a "danger receptor" that may kick-start an immune reaction to cancer in the body has been uncovered by UK researchers.

Well Steve and I can tell you all about that with out BCG treatments because that is just what it does. Perhaps this will help us in the future and treatments will become more effective? Let's hope so for future sufferers. It would be nice if the could prevent it in the first place of course but the ongoing research certainly seems to be getting somewhere.

A bust week ahead for me - not sure if I will feel quite so keen come tomorrow though! I feel I could do with a break and I've only worked 4 days!!

Sleep

I again find myself sleeping in and although feeling the better for it - I find losing those hours annoying. I suppose it is just the body doing a repair job and I'll probably be grateful for the rest. I have a full week ahead of me and there are lots of things to be achieved.

Friday will be good as I have a meeting with my colleagues in my venture company and then I am going off for a curry evening which I intend to fully enjoy.

Working

It was a strange day as I was working most of it. I have been running some figures for a business I am involved with and needed to get some more details and my friend and I spent a lot of time going into the figures which I have just completed. Of course, I've done it again. I have been working all evening with figures and my head is doing mathematical calculations a plenty so I hope that I will actually get to sleep without too much trouble.

Everyone who sees me says I look well - which is good - at least the outside looks OK then! From the inside I still feel somewhat worn out. My ears are still giving me problems but again are getting better but ever so gradually.

As for the rest of me - I think all is OK but the wait to hear when treatment begins is unusual. Perhaps they are considering something else? Who knows - it will come soon enough but I'd like to know so I can plan things out.

It is half term week so Mrs. F. and the girls are off - I hadn't realised that until perhaps a day or so ago! I am at work next week and so will have to plan for time off together next time.

A full on day today

I am running another bit of work with a friend and we are meeting up today to go through some of the details. It is a strange thing working on a Saturday and back to my old days doing a bit of work at the weekends and evenings to catch up on things. This is a business plan and so it needs quite a bit of work to ensure that we have entered the figures correctly and also that they are realistic.

At least it will keep me out of the office for the day but not stop me working.

I've not heard back from the Hospital and so assume that I can go to work on Monday and be OK for going out Monday evening too. Perhaps I'll gt the letter next week?

On a sad note, the celebrity who had Cervical Cancer got the bad news yesterday after it having spread that there isn't a great deal to do and time is limited. Not sure quite how I'd feel about being given an 8 week diagnosis? Puts my problems into perspective.

Blat

Well

I got the PC booked in, got some Valentines goodies. Then had a Bacon Sandwich and a cup of tea and hit the local pub. Called a friend of mine and ended up getting home - by taxi at 8 this evening. Ouch - I went out at 11 this morning.

However, I have had a very nice day out. I ensured I had plenty to eat as well as drink.

Slightly disappointed to find that my eldest is off to see her boyfriend tonight and that no one actually thought to let me know. I'm pretty sore about that - how difficult can it be to say that???

Dysfunctional can easily be applied sometimes to life here. I don't mind the fact that it happened but to tell me afterwards isn't exactly useful.

A day off

I think I deserve a day off - a lie in this morning was nice until some numpty started phoning. However it was a good two or three hours longer than normal and so was still a good start.

I am just catching up on e-mails and everything else that has happened this week. Steve in the US has had his last BCG of this set without issues so that is good and he can relax for 2 or 3 months now. Not much on my case at all really. I still haven't heard back about their deliberations on Monday. I wonder whether there is a quandary brewing up as I have already had 1 year's maintenance and they want to do a second one. I suppose it must be a borderline case?

I am aiming to go down to the Computer Shop in a little while to see if they can save any of the data on my hard drive. If they can it will be a bonus - if not then a new hard drive can be fitted and I can reload the OS, drivers etc.

If they cannot find the two or three files I was working on then I am sort of screwed up and will have to work out quite how I present the accounts that I had actually completed and balanced for the last two years :-)!!

A nice slow day is required and sitting here blogging is not in today's list of relaxing activities.

A very long day

It is 11 pm now. I left at 6:10 am. I had a very good journey to work, caught the connection - don't tell Mrs F but I then found a Greasy Spoon Cafe and had a full English Breakfast and two large mugs of tea before arriving at the venue.

The presentation went OK and the only problem was that I overloaded it with cases studies so I overran slightly :-) Anyway, I can repair that. We came back to London and got to the office in an hour and then went off to a Lodge meeting and a very nice meal at the Radisson in Covent Garden - Seven Dials. I had been invited out to another meeting on Wednesday night but I was worried I may have been post treatment and also that I would have today straight afterwards. A good move considering how tired I am.

Fast train home and when I got here a 1 1/2 mile walk home in the snow and sleet and slush. Remarkably one side of the road was covered and the other wasn't so it wasn't too bad a walk.

I am having tomorrow off - I need a rest. As for the remainder of my body - well my ears are ringing still but I feel a lot better I think for having gone back to work.

It was interesting as someone who is not in my office told me that the whole office has perked up which is a nice compliment - I hope I can live up to my hype!

One of those days tomorrow

It will be an interesting day as I am giving one of my first presentations to people who may use our services rather than talking to people whom I am trying to get to part with their money!

Then back to the Office and out for the evening. Interestingly they say there may be a little snow - Hope not too much. I decided to take Friday off as I would probably be too knackered to get up after this week and wrapping that up with a late night.

At least that gives me an opportunity to get he laptop sorted and to prepare for some work I am doing over the weekend.

I've heard nothing from the Hospital - I know they were looking at my case on Monday - I wonder what they decided to do???

Suppose I'll find out soon enough.

Bitter Pill

Bitter Pill, Biting the bullet and other such cliches spring to mind.

I thought it was quite funny how I can sagely give out advice:

"You should calm down a bit" "Get a job with less hours", "Take it easy now" etc

And yet ask myself to do it...

That is a TOTALLY different thing. I'm not absolutely sure I know what I am fighting against here. Consider what exactly would I be doing if I were back fire fighting on some of the jobs I used to be on. Away for a week at a time, working long hours, Hotel food day and night, too many beers and not enough good food. Things wouldn't be sustainable given treatment, fatigue and other such things.

I am being a real stick in the mud and resisting this change and I really would feel a fraud just "doing the minimum" and taking the cash and yet it is what a great deal of people do. I've had huge responsibility and real pressure and stress and targets to meet and all that stuff which I thrive on but taking it easy is probably the hardest, most stressful and difficult thing I have ever had to face in my career. It just never happens.

Funny old world isn't it?