Alomst Missed it - FIVE YEARS TODAY

Five years ago today - around about 3 pm was when I had the first TURBT and had the tumour removed from my bladder. It was a Monday and I had spent the weekend in a state of heightened anxiety knowing that they were going to operate. Other than that I knew very little of my condition - I took a peek at some online stuff but didn't like the look of it and then realised that most of the people who wrote these things were in a far worse state than I was. A lot were dying or thought they were and it was not a great place to be.

Luckily - I'm not one of them and I survived that episode.

I have no particular plans to do anything - it was only that I wrote today's date on a piece of paper that I remembered.

To anyone tuning in at the beginning of their journey with bladder cancer - things do get better and time and experience change your perception.

Spoke to my Dad

This morning and it was one of those very rare times that I've heard him actually feel sorry for himself or say that he wasn't particularly well. He sounded weak and he sounded frail. He's sleeping a lot at the moment and is due in on Wednesday for his endoscope which we hope will sort out his jaundice if nothing else and take a biopsy. Now he's not hurting or in pain, not shaking or anything else and so in a way that's pretty good news - but we will have to wait and see.

He has some more scopes and things to go through and he's had a number of scans - he's had the dye in the veins one so I imagine he is feeling pretty awful - as I did when I had that. For a guy who hates the doctor and hospitals he's managing OK. He needs to get over the YUK factor and realise that everything happens at their own speed.

I said yesterday that I can't go with him on this - I can't live his pain for him because it hurts me just thinking about it. I feel like I've just had some of this stuff done to me, I feel the back of my hand hurting and knots in my stomach just thinking about it in passing and even now writing this. I really don't need to be giving myself this level of grief and thinking about that dye in the veins thing really gave me a turn - I hadn't realised he had had that. Then again - they didn't know about all the times I had my stuff - some but not all.

Anyway - Wednesday is the big day and with some luck we will know more towards the end of the week.

So here's Some Good News

I've been following a blog called the Assertive Cancer Patient for a couple of years on and off but in recent times have tried to follow it more often. Today there was some great news. How about after 10 years of having metastatic cancer - fighting all sorts of battles you wouldn't believe and having huge highs and lows, Jeanne is in remission HERE is the news.

There's something worth celebrating...

PS: I forgot to say - that last year she was given a year to live and then refused to do so - she has been on a clinical trial which appears to have assisted. Surely a lesson for us all not to give in lightly and to persevere even in the hardest of times.

Holding back

On calling too often at the moment and will have 'normal' phone call with my Mum tomorrow morning. Will see what they've been up to and see what I can or cannot do at this time. I think that keeping things like they normally are is probably better than calling every day etc.

It's a bit strange dealing with someone in my family being ill - the last major illness before mine was my nephew and niece who both got Diabetes but hers was pretty serious as she almost died. That's got to be about 15 years ago now I suppose. Anyway, what I mean is my immediate family because I'm the sick one really. 11 Operations when I was a kid, rushed in sometime ago with possible heart attack (which proved not to be), a couple of A&Es when I got my nose broken in a cricket match (not by the ball but when the idiot let go of the bat!), once when I fell down some stairs and once when I got my lip split. And of course the 30 odd times I've been in and out in the past 5 years. So dealing with someone else being ill should be easy for me :-)

I doubt it will be. I'm 110 miles away and at least a 2 1/2 hour journey from them which makes for an interesting problem about going up to see them and when etc. So whatever happens in the next however long it is going to be isn't going to be particularly easy to sort out logistics wise - I just need to wait and see.

I also realise that I know a lot about my particular subject matter and I'm also not certain that I will actually be of any "help" at this time, time when they need to work out for themselves what they want to do and also time to get their thinking right about it too. I've got to tread a careful path between their needs and mine. No one got involved in my illness and so I need to make sure that I don't get involved in theirs. That's sounds a bit awful but all I mean is that as well intentioned as I may feel my help may be, it's not my place to do that uninvited and unwanted. I also have to be very careful about my own health in getting that involved.

On a happier note L arrived home after being away for a week and she had a good time away. She is growing up really fast - it's most strange that suddenly she isn't a school girl any more and she will soon go to University, she just appears to have grown from one to the other in a few weeks.

Impressed

With the level of professional results the three artists put on tonight and the evening shot past. Thanks to Flocky Bicep for turning up and supporting the evening. I think it was a great success and it's great to see young artists displaying challenging work. I was most impressed to see some of As larger photographic work and also some of her original life work in charcoal - I'd never seen these before.

It's a shame that we don't value art as much as we should. We came back home and ended up having a curry which went down very well. We also have a few bags worth of food and drink to use up over the weekend :-)

The Exhibition

I've just dropped A off with a boot (trunk) full of food for the private viewing. I've sponsored the food and drink although they haven't told me how much it is yet :-) I'm looking forward to wandering down there in a couple of hours and seeing what they have done - I haven't seen her work in the new frames or how they've laid it out and so that will be interesting.

At least she will have some intern work in her portfolio and this exhibition. She has another exhibition in the central library later on this year too so that all adds to her experience. You can see some of her work here and the gallery information is here. You may glance some of her painted furniture work on this site.

It looks a hard life being an artist but that's what the intern-ship is all about - she can reflect on this experience. We hope to get her some work experience with one of the major newspapers (not the News of the World obviously) later in the summer so she can experience a week of being a journeyman photographer for the newspapers.

I'm really looking forward to seeing how they've worked out how they are going to present their work and run the exhibition.

Your Thought Process

I remember going through the thoughts - wild as they were between "I'm going to die" and "hang on - they haven't even staged it yet!" It was a horrible time I recall and in a way I just had a couple of days to think about things. I was diagnosed on the Friday and I was in the operating theatre on the Monday! Now that's fast. I had, of course, a relatively high grade cancer and the tumour was of moderate size (whatever that may be). So I can understand what Dad and my Mum are going through.

I can actually feel a heightened level of anxiety in my body - I'm feeling for them - I'm going through the process - reliving my own experiences. I can't make decisions for them and in a way, I'm a bit loathe to get involved unless asked. Dad's got to work through the ups and downs and decide what to do. I mean the crazy thing is we don't actually know that it IS cancer. The signs are reasonably good - very small tumour, could be a cyst but they need to do the investigative work and his first reaction was no. Then again, he's never had surgery etc in his whole life so the shock of all of this must be far worse and at 80 years old he isn't thinking clearly about it. He has the weekend to think things over and they have the phone call on Monday.

I've said to them that until you actually get the results, you'll not know where you stand. If it isn't then there'll be some sort of action to take. if it is, then they'll have something to say about it and a way forward. It isn't great - of course it isn't but inaction is not an acceptable strategy. I'm sure he will come around to a decision based on some logic over the weekend. It is all very raw to him I expect and I doubt his head is "in a good place" at the moment.

Late

Or early as it is really Friday morning. I'm sort of sitting around in a state of light shock I suppose. Poor old dad is probably having a pretty torrid time and will do of course as he comes to terms with what he's been presented with this week. I see a lot of me in him but I'm not entirely like him but in some of the stubborn areas and needing a certain amount of order about things I'm exactly like him and getting more so each time I see him.

I'm not going to second guess what is going on and will wait it out until I hear what the results may be. I'll just have to deal with it the way I normally do I suppose - I've always been the rock steady non emotional one in the family and I suppose I've some experience in these things.

I felt that maybe I should drive up and see Dad but it's A's opening night of her first exhibition tomorrow and I really want to be there. A lot of her mates who've known this is going on have decided to go elsewhere for the weekend and I want to make sure she gets my full support. I'm not sure what I can actually do going to my parent's place this weekend and perhaps it may be better suited a little later on when we know what is happening and when I can do some good.

I was only whinging last week or the week before about how no one ever came and saw me when I was ill. In fact not once in 5 years has anyone bothered but I'll arrange to see them when they need me up there.

Irony, it's ironic isn't it?

5 years ago this very day I was diagnosed with Cancer and today my dad goes home after them having discovered a tumour on his Pancreas. It's very small, you can hardly see it on the scan and so he is home now. He's obviously not feeling good about stuff at the moment and neither is my mum really but they'll hopefully be able to come to terms with this in the next day or two. I'm a good example of what they can do these days but dad sounded a bit defeatist but then I remember being very much like that until good old Mrs. F. told me to "Pull myself together!" :-)

They have a pow wow on Monday and he goes back in Wednesday (even though he says he isn't) for them to do an endescopy and to unblock things so he can get rid of the Jaundice (probably a stent). They also want a scan of his chest as well. I'm leaving him to rest and hope to speak to him over the weekend.

I hope he gets a bit of rest and has some time to think things over. I don't like tone I heard tonight but he's only just been told the news so I imagine it's like I was - hit by a truck!

Dignosed 5 years ago today

I knew by this time of day 5 years ago that I had Cancer and it was and wasn't a shock all at the same time. I knew that I'd need an operation and fast and I remember the stinging following the flexible cystoscopy which I realise now was due to the blood in my urine more than anything else and I guess that I'd never been scoped before. These days I'm an old hand at it having had in excess of 37 of these things shoved up my urethra.

So another milestone reached and in a way it's quite a bizarre coincidence that my father may be diagnosed today after his scan. I hope he hasn't to deal with the sort of shock I did those 5 years ago.

He has had a further scan or XRay this morning and so we hope to hear something today about what is wrong with him.

Something Else that Afffects Your Bladder

I never really got drugs - alcohol and cigarettes and cigars - yes but I never ever liked or even fancied a go at anything else.

Here is a sobering story - I hope you can catch the video here.

"A review into the horse tranquillizer ketamine by the Independent Scientific Committee on Drugs is to say that recreational use of the drug appears to be a growing problem.

Although it is not calling for ketamine to be reclassified, the committee is suggesting that the drug is wrongly classified as being less harmful than ecstasy and cannabis.

Ketamine is now the fourth most popular recreational drug in the UK and in extreme cases, use of it can lead to severe bladder damage.

The lad in the story/video had his bladder removed at 18 years old and replaced by a bag for around a year. The worse the symptoms got, the more he took the drug.

Goodness knows what problems will come along after that - if it hit your bladder it's bound to have an affect on kidneys and elsewhere.

Phew - yuk, ohhh, turned me over just listening to it. The stuff some people shove into themselves is just bizarre.

Christopher Francis is currently serving time in Ford Open Prison. Here he explains how his use of ketamine led to his bladder having to be removed."

All about Dad at the moment

The scan was inconclusive (it that's a real word) and apart from a possibly enlarged gall bladder - they cannot see anything. It looks as if the want to do another scan tomorrow and check the back of that area, no endoscope (for now) which I imagine will please him :-)

Doing well as are my mum and my brother and sister-in-law have stepped up to the plate too which is good. Spoke to mum and she is sort of OK about it and even Dad seems resigned to it now - he is a "little confused" but then he is 80 and has never been in a hospital before (as far as we know) and so it's all a little new and a little bit uncomfortable for him. I know I hate it and he is far more sensitive to this stuff than I am.

I'm a bit more relaxed about things now having had a very bad night on Monday I've managed to sort things out. Tonight my Nephew came along and took me out for a beer which was really nice. I haven't seen him for ages - he's been jetting between here, New York and Tampa for months but looks as if things have settled and he is back here for a while now.

A good chat with him and my business partner about dad has also helped me sort myself out. I feel a bit sorry that I may have burdened them but then again, they've both done that to me in the past and a year ago you may recollect I was pouring said nephew out of a bar in London and into a cab after a night on the town that I'd really like to forget.

Oh well - all is well and it's time for bed - dad is OK and tomorrow we may find out what's wrong with him. I pray it isn't what I worry that it is and that it is something a lot simpler to sort out. Let's hope so.

Good Spirits

Well - dad's in good spirits - laughing and joking with nurses and mum so that's good. I just spoke to her and she is all OK at the moment - or sounds it and they'll go off and see him. I've done the hospital check list for them and all is OK there. He awaits his scan later today.

He's not in pain and seems to be and feel fine which is good, not been losing weight or appetite. Mum says in 57 years she's known him this is the first time she's seen him give blood or been in a hospital. I'd say that's a result as I said to my kid brother - having been in 10 times in 5 years and perhaps more than 20 times in my life, I'd say he was overdue for a trip in.

Also found out that he's been looking a "bit yellow" for more than a week - typical bloke - don't go and speak to the Doc until he looks like a human banana!

I'm sort of feeling stressed for him as I know what he is like - hopefully though, as long as they aren't pulling him about too much he'll be OK - I doubt he will like the blood draws and he wasn't amused that he'd probably be in for 3 days (at least).

Well - let's see how he gets on and what they find - no good second guessing them.

Good Sleep

Unfortunately - my brother was trying to get me at midnight but I wasn't answering emails or text messages. Dad was taken in overnight to hospital on the Doctor's orders after they got the blood tests back and he had to wait until 11 pm to get a bed and sit around in A&E none of which I imagine would have helped his state of mind - he hates hospitals and doctors more than I do and if you felt reading my blog that I have high anxiety sometimes, spare a thought for him as he really does have the most awful time and gets very stressed out - bless him.

So the thing that kept me up on Monday night has happened and he is in hospital and I just know how much he hates it. He wants to go home but, frankly, he needs to have these tests run and they need to find out what it is. I have my own theory but I'll keep that to myself.

I might as well be a million miles away for all the help I can give - I suppose I'd better prepare myself to be able to drop into the car at a moment's notice and get up there. Luckily my brother lives locally and his wife is predisposed to running the folks about as mum no longer drives and the hospital is a fair old way away from them.

Will have to see what challenges are coming his way later on today or tomorrow I guess. I just know how much he will be stressed our by all of this and so I'm really beginning to feel for him.

See how tonight is

I feel dog tired right now and after writing this I'm going to see if I can get to bed early and catch up on all the sleep I deprived myself of yesterday.

I can't do anything about what is going to happen and neither can I second guess it either! To bed :-)

Bloods Done

No problems - they took a whole armful by the sounds of it - 5 phials worth and results on Friday - he feels fine so that's good I suppose. Obviously not knowing what's wrong is a problem but he will find out on Friday and I imagine they'll scan him soon after that. It depends what the X-Rays and Blood tests show I guess.

I feel a bit better myself hearing that he's OK and actually managed to have a blood test. No use worrying I tell myself and we won't know until Friday and neither will he so - no use pre-empting things. I hope not to be worrying about it tonight and get some sleep and no doubt I'll be tired from being awake half of last night.

Mind you - it is my Dad I'm talking about - and I've only got one....

Horrible Night's Sleep

I was worried about my dad and his blood test today - my kid brother reckons it's the first time he's ever had his blood taken but I somehow doubt that very much - I think I remember him having it done about 9 or 10 years ago. However Jaundice in old age isn't a great sign and of course all it did for me was remind me of the terrible time I had and just brought back my memories.

I don't think I'd ever want anyone to go through what I did least of all my folks. I'm young enough to have gone through a lot of it but at 80 I'm not sure I'd be quite so resilient.

So first of all I couldn't get to sleep and then as I was dropping off I was having visions of hospital beds, drips, end of life scenes, funeral - it was awful. Sometimes I wish I could turn my head off - it launches into huge leaps of fantasy and into places I don't want it to go. I tried to think of other things and all it did was bring back the terror (I use that word on reflection) of some of the early days I had when I was ill and facing the unknown and potentially the thought that goes through every cancer diagnosis (I guess) - I'm going to die. I'm going to die horribly and all the baggage that goes with that sort of mentality. Luckily Mrs. F. told me to "get a grip" early on and I did. So I was haunted by all that and have had a couple of hours sleep. I feel reasonably OK actually - I thought I'd feel worse. I can't do anything about it and it will be what it will be.

My poor old dad though hates hospitals and doctors more than I do and I can just imagine his stress levels going through the roof. I suppose I'll just have to wait and hear what is happening and I have my scheduled call with my mum tomorrow so no doubt she'll update me some more.

Not Good

Had an email from kid brother. Apparently Dad isn't well and looks a bit jaundiced. Has been for X-Ray today, Bloods tomorrow (that will please him NOT - he hates all of that). Then I believe he will have to go for a scan.

I'll find out a bit more tomorrow or Wednesday I guess. I have to say that I felt dread as soon as I saw that. I guess I'm always on edge about these things knowing what I know. Of course it can be a number of things. Let's hope that it isn't what I'm thinking it might be.

Weekend Off Blogging

And good job too. Not much to say other than the dreams of the last few days have been amazing - I can't remember any of them except crashing my car which looked great in full technicolour complete with Mrs. F. in full stereo surround sound saying "I told you so" :-)

I'm still into my FOCC diet but I've changed it slightly. I now use 4 Tablespoons of Cottage Cheese to 2 of Flax Seed Oil and 1.5 of ground Flax Seeds. I then add a probiotic yoghurt into it to give it some fruity sweetness and then pour that over crushed weet-a-bix or over Cheerios. I toned it down as it is quite filling and quite fattening and I wanted to give myself a regular shot of this without sticking the pounds on. I've lost half a stone in the past 3 weeks or so which is encouraging and I'm beginning to be able to stick to a diet without interruptions like a few weeks ago when I vistied my local curry house 3 times in one week and the pub 3 times too! Doh! I also decided against using the soft cheese quark as it was quite a tart flavour. Whilst the cottage cheese does have salt in it, it is about the only thing that I eat that does and the falling off a cliff that my blood pressure measurements kind of tell me that salt, which I gave up years ago, isn't having the blood pressure issues I felt it might do. Long may that continue.

Work is getting a real pace on now - a few difficult days this week will see us on the home stretch - we have some serious figure work to resolve and some of the calculations aren't making sense to us. Once they are done the cork is out of the bottle because we've done most of the work.

What a Week it has been

I've worked pretty hard and I'm pleased with this week's work. Had a funny old evening on Tuesday and a bit of a wobble what with the chap with terminal bladder cancer all because he didn't go when he first got the symptoms. Then the anger when it came out in conversation that none of my immediate family had actually ventured down to see me in the 5 years I've been ill. I've made the pilgrimage to them when I can.

I'm sort of over that now but realised that there's a number of "demons" that I need to exorcise now that the 5 years are here. Not like "getting my own back" that isn't what I mean - it's more a case of getting angry about them and then moving on. I'm not planning to dwell on anything too long either as it's happened and it's in the past. What I need to do is get the monkey off my back and move on - I don't actually think I need to understand it or why it happened.

Looking forward, I'm pretty much happy that we have gone as far as we can with the business for now and that it needs to be tidied up and thrown out to see if anyone else believes what we do. This is not going to be easy - great idea that it is, it requires a sack load of cash to achieve it. If we go ahead it will be another huge change in my life but one that I will relish. The trouble would be how much time and commitment it will take to build the business but, then again, whilst I'm doing that I can't dwell on other stuff :-)