An Attitude To Life

As I mentioned a few days ago I have received Good News about my cancer. I don't fool myself that it's gone. I've been here before and cancer never actually goes completely. But it looks as though I'll be blogging for a year or two yet. If I don't do something silly like get hit by a bus or fall out of a plane at 30,000 feet or .... well, you get the picture.

So how do I feel? I feel strange, is the answer.  I had come to terms some years ago with the cancer and its seemingly relentless decision to inhabit my body.  The fact that I've never ever been able to feel it nor been affected by it (apart, of course, when I had the operation and the radiotherapy) has made the fact of its existence rather unreal.  But mentally I had completely come to terms with it and, having seen Andy die such a horrible death, had taken the decision not to go for quantity over quality of life.  I had come to terms with the likelyhood of death coming rather earlier than the family norm of the nineties.  I accepted it as a probablilty.  After all I'd been told that the implants had limited efficacy and when it returned more vigorously last year I'd been told that radiotherapy wasn't an option.  But things change.  And nowhere more rapidly than in the field of cancer treatment.  Five months ago I was told I could have radiotherapy but that it only had a 20% chance of targetting the right area. And bingo!  They hit the 20% and I got the jackpot.

So, I ask myself again, "How do I feel?".  What is 'strange'?  The answer is that I don't feel the joy and elation that I might have expected.  I feel pretty much as I did before I had the news.  However there is a big BUT in all this.  And that is how did I really feel before I got the latest good news?  What effect has the knowledge of a life-threatening disease really had?

As I said in the last posting it has been an incredibly positive experience.  It still is an incredibly positive experience.  I have learned more though this than ever I could have hope to learn through any other experience. I shall not go into too much detail 'cos that would be boring but I can say that I am sure that my outlook on life has altered for the better.

When I first went to New Zealand it was for a long holiday.  The cancer was becomming troublesome again.  I decided that I was going to do everything and anything that I wanted to do.  Carpe diem was my motto.  I was determined to seize the day.  I decided that I might, realistically, not have another such wonderful opportunity to do the things I had never tried before for a myriad of reasons.  I paraglided off a hilltop and soared above the birds. I white-water rafted over the highest commercially run drop in the Southern hemisphere. I helehiked up a glacier.  I did lots of things.  For the record I did not bungee jump and have no intention of so doing!

And I've lived my life like that ever since. 

That's just one aspect of how I feel and how I've been affected.  It was a very positive experience.

I've learned not to sweat the small stuff.  And it's almost all small stuff!

Oh.  I could go on.  I've learned so much.  But I will confine myself to one more thing.  Possibly the most important thing I've learned:  to play The Glad Game.  The game consists of finding something to be glad about in every situation. It originated in an incident one Christmas when the fictional character Pollyanna, who was hoping for a doll in the missionary barrel, found only a pair of crutches inside. Making the game up on the spot, Pollyanna's father taught her to look at the good side of things—in this case, to be glad about the crutches because "we don't need 'em!".  Sometimes it's a bit hard but I've yet to find a situation where I've not been able to play the game  for myself.  Having said that it's sometimes very hard to play it for others; very hard.

There is one more feeling and that is Guilt.  I'll blog about it separately. 

A Good Day And Some

I mentioned a few posts ago that I was going to the Beatson Centre during the summer for radiotherapy treatment for the recurring cancer resulting from the escape of cancerous cells after my operation for prostate cancer in 1998. Well I had the treatment and I met some wonderful people whilst I was having the treatment.  See The Last Day at Eagleton Notes.  Since then life's been pretty hectic.

A few weeks ago I had my bloods done for my PSA reading.  PSA is an indicator of the prostate specific antigens in the body which in turn are a general indicator of prostate cancer.  My reading was 0.03.  That is almost as low as it's been since I was operated on but still indicates the presence of potentially cancerous cells, however minute in quantity.

On Friday morning I was due to have my follow-up consultation with the oncologist to review the treatment's effect.  So on Friday I was in Ayr.

Friday was a Really Good Day. In the morning I rang my Doc's and the receptionist gave me my latest PSA results which were down to 0.01. So when I got in to see the oncologist the consultation took 30 seconds. He asked if I had any lasting ill effects from the radiotherapy (I have not) and then said "Well the PSA count is about as good as it gets. I'll see you in 6 months when you get back from New Zealand." All this way for 30 seconds! I had a longer chat with the nurses afterwards because one of their number (who was at lunch) is shortly off to live in New Zealand. The others didn't know where though. By coincidence I have a theatre nurse and her husband living in The Cottage at the moment. They love it so much they don't want to leave! I can see me ending up in my own spare bedroom when I get back!

All the travelling on Friday (from 1015 until 1630) enabled me to do some reading and I managed the Times 2 Crossword (not cryptic!), the Codeword and the Polygon. I only failed on 1 clue in the crossword: Picasso painting inspired by a bombed town. Even with half the letters I just didn't know. Otherwise I was quite proud of myself.

So I bought a bottle of Champagne on the way back to Anna's (the friend with whom I was staying as Gaz had gone off on Thursday to kite surf in Egypt).

All in all it was, as I said, a Very Good Day.

It's made me think too and it's also been tinged with the sadness that at least one of the Three Musketeers has not so far had such good news.  I'm just hoping that all my positive thoughts will help him through the devastation he's feeling at this moment.

A newly found friend in Blogland made the point that she didn't know how she would cope living with the presence of cancer hanging over her.  It's funny but I've never consciously seen it like that.  To me cancer has been the worst things in my life - particularly watching Andy die such a horrible death through cancer - and one of the best.  My own cancer has taught me so much.  It has been, and continues to be, a completely positive experience.

And that is where I will leave it tonight.  But I will continue my thoughts on it soon.

A Beguilling Service

I went to a funeral yesterday. Actually it was billed as "A Celebration of the Life of Audrey Clare". Audrey lived in the township (village). I first met her many years ago (probably about 35 when I came to Lewis). I went to the same Church as she did: St Peter's Episcopal Church in Stornoway. I was, for a while, an active member of that Church. In fact when I came to Lewis I went to the Episcopal Church on a Sunday morning and the Church of Scotland in the evening. After all I'd been a churchgoer from the age of 4 until I fell out with organised religion when I was 16. I returned to the Church when I was about 25 until some years after I came to Lewis when the behaviour of the Minister at the time became intolerable. Although I have never professed loyalty to any particular Church I had always called myself a Christian. It was only in 2006 that I lost my faith and became atheist.

St Peter's Church in Stornoway brought back many memories and the ambiance, the fellowship and the beauty of the service were beguiling. I can see how I believed in God; just as many before me have believed in many Gods. But for the time being reason provides a different answer.

Anniversaries

I am writing this before the 4 June because I know that, on that day, I may not find the words.

On this day back in the mists of time I was born. I'm not sure how I felt about it at the time but I'm pretty pleased now because it's been an ok life and I'm at a stage in my life when so many things could not be better. I count my blessings every day: I have food, shelter and friends and that's just the important things. I have a lifestyle many would wish for. I have a life relatively free of illness and pain.

For those things I give thanks every day. But whom do I thank? At one time the answer would have been obvious.

But.

On this day in 2006 at 10.30 in the morning our first son, Andrew (who preferred to be called Andy) died of cancer in the Royal Marsden Hospital; London's premier cancer hospital.

My phone rang around 0930. It was Andy's number. I greeted him with the usual happiness that a Dad greets a Son on a Birthday. But it wasn't Andy. It was his Mum, Carol. She was staying in the flat all the time by then and I was just going down week on/week off when Andy was in hospital. Andy had been taken into hospital late the previous night. Carol had just had a call from the hospital to suggest she went in. I booked a flight (thank goodness there were Sunday flights from Stornoway in 2006) and made arrangements to meet our other Son, Gaz, in Glasgow. We would both then fly to London. I rang the hospital to ask them to tell Andy we'd be down by mid afternoon. Ten minutes after the call Andy died.

This year I have felt his death more acutely than I did at the time. This year the 4th of June will be hard.

For just over a year before his death Andy kept a Blog. I didn't know about it until after he had died. I think I'm glad. I read parts of it not long after his death. I am just getting the courage to read it again. It makes harrowing reading. His cancer was more unpleasant than some but reading his words makes me aware of what so many people suffer. It makes me desperately sad.

I miss Andy. And I know I'm not alone in that.

Which brings me back to whom I should thank for the life I have and Andy doesn't. When Andy died I lost my faith in God. Faith is not something one can convince onesself of. You either have it or you don't. I'd had faith all my life. Now I do not.

So every morning when I wake I am grateful that I do wake. And every morning I am thankful that my Doctor at the time (who now lives in New Zealand!) ignored the rules and took my concerns seriously and that the Consultant (who still looks after me) did the same. Without them my life would probably have ended before 1997 became 1998.

As Andy always said 'It's a funny old world, Dad.'.

Where The Sun Don't Shine

I start radiotherapy (in case you didn't know that!) in a couple of weeks' time. Am I apprehensive? I would have said absolutely not. But who knows what goes on in the human mind? Certainly the actual process doesn't concern me in the least. However I have been warned that there can be side effects. These seem to be classified as possible and more possible. Most of the side effects that I could have were side effects of the original operation and I've dealt with those. But there is one that could be a whole new experience. Now if you embarrass easily or are squeamish. Stop now. Not that's it's you who should be embarrassed. It's me. The fact that I'm telling you this demonstrates that my embarassment threshold is very high.

The likely side effect? A burnt rectal passage. Now you'd think that would be exceptionally unpleasant wouldn't you? But the oncologist assured me that it would just be like a baddish dose of sunburn. Now I don't know about you but the one place so far as I am concerned that the sun don't shine is up my bum!

Gives a whole new slant on a word I use rather a lot: bummer.

I've Been Tattood

I've never really been one for tattoos. OK, so other people have tattoos. Of course in New Zealand it's the norm and I just accept it but it's taken me a while to get used to just how many girls and ladies in the UK now have tattoos: more than men it seems. But I never thought that I'd get to this age and have tatoos myself. Well today I went to Glasgow and came home with three. And guess where they are? One on each thigh and one in a place where very few people outside the medical profession are ever going to see it!

Actually it's been a very odd sort of a day. I've mentioned how it all panned out on Eagleton Notes. But I didn't mention why I was in Glasgow. I was at The Beatson which is Scotland's centre of excellence for cancer treatment. It is there that I will be having my radiotherapy and it is there I went today for my positioning scans ie to determine exactly where they are going to point the guns which fire whatever it is they fire at one's innards to kill off the cancer cells. Well they'll hopefully kill them if they are where they think that they might be. After all they are only talking about a 20% chance of them being around the site of the original operation which is where the guns will aim. But, hey, 20% is better than 0%.

But although I've had a really Good Day one thing struck home. How very lucky I am. When I saw just how many patients at The Beatson were at Outpatients and how many were wandering round and obviously in-patients (why does one have a hyphen and the other not?) and how ill they looked I realised just how lucky I am. I'm not ill! I was by far the fittest person I saw who wasn't wearing an identity badge. Yes. I'm lucky. I'm very lucky. I don't have to play the Glad Game because I ain't got nothing to be not glad about.

Reality Kicks In

Blogging is just so therapeutic. Yesterday when I received the appointments schedule for the six weeks of radiotherapy (I've realised that it's one word not two) the reality of the whole situation hit me. Hard. But yesterday was such a wonderful day in other ways I didn't really have time to think about it after the initial shock. I have no idea why it should have had the effect that it did. Having lived with the cancer for 11 years since the original operation I thought that I'd grown immune to any feelings about it because I've never felt it or been ill as a result of it. As I've said before it's as though I'm looking at it in my body but that I'm detached from my body. OK I know that sounds weird but, hey, that how I feel.

Anyway I was brought back down to earth by the comments on my last posting. I'd read Heather's and Scriptor's comments before the appointments came and taken comfort from them. I read those of L'Archiduchesse and shabby girll afterwards. Yes. Zap the buggers and get on with things. Good advice. I'll let you know in 5 years how I got on! Watch this space.

A Mixed Message

Having spent 6 days trying to adjust to being back in Scotland I set off for Glasgow on Monday 11th.   On Tuesday I went to Ayr hospital and had scans.  On Friday I went back to get the results.  The scan showed nothing.  I was told that this meant that there was nothing that could be seen not that there is nothing to see.  The cancer cells are basically too small to be detected and may, in addition, be too dispersed. So the cancer's there but nowhere to be seen.  Cunning little buggers these cancer cells.  

A year ago radio therapy was ruled out on the grounds that my PSA count was too high for likely success.  Apparently now that the treatment has reduced the count they can at least give radio therapy a go.  There is a 20% chance the cancer cells are around the site of the original operation. They can have a bash (so to speak) in that area with radio therapy and, assuming that there is a 100% chance that any cells there are killed that would give me a 20% chance of having the cancer removed. The side effects are liveable with. And in a maximum of 18 weeks from now it should all be over.

So I feel happy that it's not too far advanced and that there is a chance of the cancer being destroyed.  Having said that I've lived with it for so long now its destruction seems an unlikely scenario.

But wotthehellarchiewotthehell.  It could be worse.  I might have missed the start of the croquet season!  

What is Normal?

I commented  to a friend earlier on today that if she could define 'normal' (in relation to what doesn't matter for this purpose) she was a better man than I am Gunga Din (with apologies to Kipling).  After all one man's normal can be another man's bizarre.

Heather's comment on the last posting made me think.  When I started this blog it was with the intention of keeping my thoughts on my cancer completely separate from the everyday life of my other blogs: Eagleton Notes and A Hebridean in New Zealand.  After all at the moment I am exceptionally lucky.  My life goes on as though nothing had happened and therefore I can call it normal.  

When I was diagnosed with cancer in 1997 I was fortunate enough to have been operated on successfully - up to a point.  I was told that it was more than likely that cells had escaped from the site of the original cancer.  Every now and then they have started to increase but treatment has pushed the count down again with very little in the way of serious side effects for me.  So to me 'normal' is the absence of pain and an ability to do the things I could do before the cancer was operated upon.  After all many people without cancer (including my treasured brother) suffer pain and physical difficulties every day of their lives.

However I cannot pretend that on occasion (and no doubt this feeling will increase with time) I do not feel normal when I am told that the cancer has returned.  Hence this blog.

The Spectre Looms Again

Just under twelve months ago I wrote of the day that I received the news that my cancer was making an attempt to re-colonise this edifice that I call my body. Subsequently, after bone and MRI scans I was put back on implants as a 'last line of defence under current knowledge'.

I knew from past experience that the efficacy of the implants was limited. I was, however, rather disappointed to find out last Friday that the period of efficacy was so short lived. My PSA count has more than doubled in the last 12 weeks (a doubling in 6 months is regarded as serious).

When I received the news at the Doc's last Friday I was rather stunned. I had mentally prepared myself last year for a few years' respite and this sudden reversal came as a bit of a surprise. But there we are. These things are sent to confound us. Anyway had a drop more wine than usual that evening and spent Saturday on the lawns and in the evening Wendy and I and a friend of Wendy went to the ballet. It was absolutely awesome.

What happens next I'm not sure. My Consultant in the UK has said more bone and MRI scans whilst I am here in New Zealand but I may just wait until I get back to Scotland. I only have 21 more sleeps here until I return. And I have so much to do.

A Rather Peculiar Sort of Day: Follow Up

On 18 May last year I wrote my first post on this blog. One of the elements was me driving my car backwards into a young lady's VW Polo. I never did a follow up to the posting. I should have done. I duly sent the young lady a cheque for the repairs with a small addition and a card making the point that it'd been a bad hair day.

(See Two Blind Mice Cards for some of the best cards around: http://www.twobadmice.com/index.asp?a=Anita%20Jeram&c=Cards)

I suggested that the additional sum included in the cheque should be used 'to buy a box of chocolates for the trouble that I'd caused her'. I received a thank you letter by return enclosing some chocolates. There are some lovely people in the world.

In The Meantime

Life in what passes for my mind has returned to normal and most of the time I don't even think of what is happening or what is to come. There is so much 'nothing' to get on with.

For the most part it's been quite a quiet week and CJ and I just pottered around like an old married couple doing the shopping and take photographs, going for coffee and the crossword and take photographs, deciding to go for a car ride and take photographs or a walk to take photographs. In fact we take a lot of photographs. I did a some gardening and outside work and lots of cooking (so that's what it's like being a housewife) but not, I have to say, much housework. We had friends for dinner on last Sunday and Monday (Sue Marshall stayed) and callers who 'just happened to be passing' (as if you can just pass this house - well actually you can if you are walking down to the shore). We spent hours on the computers sorting photos, writing blogs and I've started sorting and scanning in my old photos. I shall have to live to 100 just to do that! Actually it was a very busy week - we just didn't do very much - if you see what I mean.

Faith Restored

I decided last Thursday afternoon to email Mr Hollins and tell him that Mr Bramwell had referred me and that he wouldn't be getting the letter for a while. Within hours he'd emailed the radiologist and oncologist and sorted everything. On Friday afternoon I got an email from the oncologist saying that if I hadn't heard with a scan appointment by Tuesday I was to get in touch with him directly. It's restored my faith. Well in the NHS anyway!

I'll probably have my appointment before Mr Hollins knows officially that I've been referred to him.

For Want of a Nail

I started off the last posting by saying that my praise for the NHS continues. What a shame that I can't say the same 8 days later.

I rang Mr Bramwell's secretary in Raigmore yesterday afternoon to ask for a copy of the letter to Mr Hollins as promised by Mr Bramwell so that I could see my GP with it. Apparantly letters from the Western Isles Clinic are typed in the Western Isles to expedite matters. To quote one of my favourite lines from a film "Big mistake!". The letters from that clinic haven't been typed yet because there's been no one to type them.

A Friendly Face

My praise for the NHS continues: it took half a day on Monday for the NHS to arrange for me to visit the Urology Clinic which I did this afternoon. I saw Mr Bramwell (who visits once every blue moon - how lucky was I?), who was Mr Hollins' fellow Consultant in Raigmore when I had my op in 1998 and who is still there as the senior consultant. It was very re-assuring to be greeted by someone who was not only a friendly face but who remembered me - I have seen him since 1998 I should add.

After an introduction to Mr Sharath a Consultant at the Hospital and a specialist nurse we had a long chat (and a brief examination which I shall gloss over) the upshot of which is that he thinks I should continue all my treatment and scans etc through Mr Hollins and his team. He is writing to Mr Hollins and copying it to me so that I can 'persuade' my GP that this is what is going to happen. 'Cos it is! Mr Hollins is in Ayr which in itself is not so easy to get to but everything else is done in Glasgow which is much more visitor friendly for me because of the people I know there and the fact that Gaz's flat is there if I need accommodation. Inverness may be nearer but I have no real friends or contacts there any more so a stay for treatment would be a very lonely couple of weeks.

The Start of a New Blog

This is an unashamed, self-indulgent Blog. I say that by way of explanation and without apology.

When I wrote the words that are the first posting on this Blog it didn't occur to me that they might be regarded as gloomy and negative. In fact, despite the fact that it was 'one of those days' I thought that I felt upbeat and positive and that the posting had been quite funny in a peculiar sort of way. It was only when Marcel pointed out that he had taken it to be all doom and gloom that I realised that either my subconscious had ruled my conscious brain when I had penned the words or, alternatively, I had completely misjudged my use of words.

I'm still not sure which scenario is accurate and I still think that the posting was a positive portrayal of a pretty negative and shitty day.

Anyway (I used to use that word a great deal in letters. I wonder if I still do in emails.) the comments did make me think - an achievement in themselves! I wondered if I was still as positive about my cancer as I have always been. When I was first diagnosed in September 1998 it never even crossed my mind that I was about to die. After the operation I recall standing at the window of the ward in Raigmore Hospital looking south along the A9 and wondering if the pain was worth it. I'd had no pain or discomfort before the operation. Of course it was and nearly 10 years down the line I've had all this extra life that, sans intervention, I would not have had. During those ten years it has never (well, as the Captain of HMS Pinnafore would say, 'hardly ever') occurred to me that my life was in any immediate form of danger from the cancer. That was even with the knowledge from the day I was discharged from Raigmore that the cancer had not been completely caught and the treatment that I have had since then.

I have come to the conclusion that there is no incompatibility between positive thought and the realisation that something could happen. To think otherwise is to adopt the ostrich approach and deny reality. The comment has been made to me that we could all pop off this mortal coil at any time at a moment's notice. Correct. Every time we fly the plane could crash. Every time we sail the boat could sink. Every time we drive a car, cross a road....... However the difference is that we don't dwell on those possibilities and they have a remoteness which is impersonal. Cancer is not. It is very personal when it's you that it's growing in.

When Andrew was being treated for cancer he wrote a blog. Some of the entries are heart-wrenching. Yet Andrew was one of the most positive of victims. He had so much to live for.

I've had a very good innings so far and whist I don't expect to make it into the 90s as the great majority of my family has done I don't expect to be missing the next croquet season! After all my life now is as happy and contented as it has ever been: perhaps more so.

So with that in mind I shall write the occasional posting in this blog to remind me about 'things'.

A Rather Peculiar Sort of Day

Today has been rather an odd sort of day. I thought that I'd share some of it with you. I'm not sure why but I think that if one believes that a trouble shared is a trouble halved then a trouble publicised to the world become pretty minute and insignificant. Least ways that's my 'reason' for penning this.

Yesterday I called in to the Surgery and picked up my PSA results. "They're quite normal" opined the receptionist "Less than 4.5". That's quite an accurate statement for the normal person but I've never claimed to be normal in any way and, in respect of PSA (Prostate Specific Antigens) having had cancer and my prostate removed, the reading should be zero. Modern (and by that I mean in the last year or so) thinking is that if the PSA count doubles in six months then that is considered serious enough to take action (in the form of radio or chemo or hormone therapy). My reading has gone from 1.4 to 4 in 3 months. The Consultant this morning decided that action was required. Exactly what will depend on the results of the MRI scan and tests and so on.

I also had the letter from the hospital with my appointment with the Orthopaedic Surgeon to see what's to be done about my dickie knee.

And I've had severe toothache since the visit to the dentist yesterday.

And Muriel at The Shrub Stall didn't have the hebes that I want for the garden.

And the weather vane I bought yesterday won't give the wind direction which is a fairly fundamental flaw.

So on the way home from The Shrub Stall I called at the garden centre to change the weather vane. This turned out to be a very expensive mistake. I'm not sure why but I decided to reverse into a small but perfectly formed blue VW Polo. Somehow my eyes saw it but my mind ignored my eyes. What then happened was quite remarkable.

I returned to the garden centre and asked those within earshot if anyone owned a blue Polo. A young lady with her boyfriend apologised embarrassingly profusely and said that she'd move it. Given that it was parked at the pavement in a place where it could not possibly have obstructed anyone this demonstrated considerable consideration (apologies for the alliteration) for her fellow humans. I eventually convinced her that I didn't want her to move but just to tell her that her car had a new, small but equally perfectly formed dent in the wing which had been caused by me - or rather by me bumping 1.5 tonnes of assorted metals and plastics etc into it.

What then transpired rather surprised me. Instead of being angry she and her boyfriend were full of gratitude. That someone should have stopped and actually admitted they had done such a thing was almost beyond their belief. The theme continued this evening when they apologised over and over for the fact that this was going to cost me £150.75 after they had received quotes. They gave me the telephone numbers and asked me to speak to the garages.

So I'll send her a cheque tomorrow with my apologies for causing her the inconvenience of having to get her car repaired. After all, in the scheme of things, that which is a huge matter to a young lady with what must be her first beautifully kept wee car is of absolutely no consequence to someone who has just been told that 'it's only a matter of time.... let's hope that there's a lot of it!'

As Andrew said "It's a funny old world Dad."

All in all I've had better days.

And it had better not interfere with my croquet!