Blog 18 – All request time, pop pickers.

Blog 18 – And some mental re-alignment needed now.

Another huge dollop of touchy-feely stuff in a minute. But first it’s question time. I didn’t take you lot to be shy – but no-one is asking any on-line questions about the topic. Next week is my last week of treatment – which means I won’t need to research anything more – so if you want to know why veins turn black and blue or strawberry red when you inject them, or why my mask is green rather than white or purple, now’s the time to ask.

So what’s this about pop pickers?

I was about to have my final glass of Dunton Waterworks water – not quite the same ring to it as Echo Springs, Heaven Hill Distillery Black Bourbon – but sure tastes nicer at the moment – before putting on my coat to head for Mount Vernon last Sunday, when the door-bell rang and there was Julia with ANOTHER pressie from the Potton and surrounding villages crew. A professionally produced CD of 17 tracks that they’ve lifted from an extraordinarily eclectic set of juke boxes. Each track prefaced by a message from the person who chose it.

Recognising the massive emotional explosion about to happen – the love of my friends sent forward as I was about to endure another night of torment in the hospital – I would have soon been reduced to quivering tears if I hadn’t just dashed out, got the said water and dived into the car – I am sorry Julia for such an abrupt exit.

I hadn’t figured on the following week being such a tough one and so it has taken until today to be able to say “thank you” friends, for your CD. You’ll have to see the facebook photos for the track list and the CD cover art – thank you Jules for this treasure. If you don’t do facebook, I’m sure you know someone who does who will be able to show you – otherwise pop round and I will.

Mental re-alignment. 

People have said that they think I’m brave. My way of dealing with this condition is to understand it, to consider what the worst might be, to consider what the best might be, to place myself along that journey at a point where I would suffer but not too much. To think that I was fit enough and strong enough to be able to get through it. To trust the medical staff in their judgement about my illness, my treatment and my prospects. And last but not least with your support, to face this head-on. 

This week saw some light shed on the worst. And I am now in the process of shifting my view of where my journey will take me. It is time to be somewhat a-feared – but I will work out, over the coming days, how not to be.

The latest bunch of needles left me bruised. 

On the good news front, the top up of blood needed to increase the haemoglobin count done half on Monday evening and half on Tuesday morning was a success – well, in terms of the procedure – I had a fresh blood sample taken yesterday, Friday, and will know the result on Monday.

The latest game of golf left me exhausted – it was warm and windy on Wednesday with some very steep slopes on the Rickmansworth Pay and Play golf course – Bill and I had a dreadfully poor game. By the evening I was feeling very unwell – could not eat – and next day was much the same – but also feeling nauseous and flu-like – indeed it was just like having sunstroke. When I weighed myself on Friday I’d lost quite a few pounds, and when they fitted my mask they were worried by the amount of room there now was – they may need to do a refit next week.

The latest food and drink taste sensation is truly awful. Luckily the Ensure two-cal drink is palatable and at 400kcals per 200ml bottle (2 kcal per ml), I should be able to get that weight back on over the next few days.

One of the things I did fear seemed to come a bit nearer -  my hearing reduced on Friday when about to get in the shower. It seems to have returned now. But the frequency of tinnitus bouts is increasing.

I’m now on 50% more Fentanyl pain-killer patch – and so have been able to reduce the morphine from 4 times a day to one or less.

But I think some strange things are creeping in – I suppose it is a form of hallucination.

If I close my eyes when working on the laptop (often!) A second-long bright light flashes on in my head. 

If I close my eyes – or just blink slowly – when being driven to an appointment, the car in front suddenly appears to be just a few feet away – but the scariest is a kind of Pop-Art effect that pops up momentarily on a surface – so it might be a picture of a postcode appears suddenly on top of the curtain or newspaper or tee-shirt that I’m looking at. Or a page from the beano might replace a piece of pine-panelling in the bathroom. 

Mostly this has affected my sense of sight, I suspect it has popped up in my hearing but haven’t isolated that yet, but the chilling one is the sense of touch. 

When on the radiotherapy bed on Friday I could swear that someone was touching my arm and then my leg when I dozed off momentarily – and again yesterday when I was laying on my Easy-boy chair listening to the CD it felt like Lexie was nuzzling me even though she was in a different room.

I don't think I'm turning psycho, though. Visitors are still welcome. Especially after next week when I shall not be going out once my treatment stops - apparently this is the loneliest time when it appears that all medical support just drops away.

Cheers

Frank

Science v fiction and week 3

Blog 17 science v fiction and week 3

After last week’s touchy-feely blog and the brilliant video from my friends, I thought a return to hard-nosed facts might be to some people’s taste.

The week before I mentioned the carbon-fibre bed that I lay on (and have the mask bolted to). I’d told people that it was there to absorb the radiation as it left my body. Pure fiction. Today I happened to be reading the Journal of Applied Clinical Medical Physics (ooh, er) the organ of the American Association of Physicists in Medicine (ooh, I say) and I now see that it is there so that radiation IS NOT absorbed and DOES NOT bounce off but that it passes STRAIGHT THROUGH and therefore does not increase the amount of radiation behind my back (literally, not figuratively*).

http://www.jacmp.org/index.php/jacmp/article/view/2247/1282

IMRT is the regime that is being used to treat me. Reading the Institute of Physics on-line journals, I find that there are different types of IMRT and different computer models used to deliver the dosage to the right places in me. Two of which are named PEREGRINE and CORVUS. So I will be questioning Dr. Russell Moule, my consultant, next week.

Anyone know what a moule is? être fait au moule
Henry Moule invented the dry earth closet.

Reading the British Journal of Radiotherapy - http://bjr.birjournals.org/content/76/910/678.full - I now understand the inverse planning process needed for the type of IMRT used at Mount Vernon for my treatment. They’ve worked out how much radiation is needed to kill off my cancer sites and working backwards, they now know how to modulate the beams in order to put more in some places – like the area containing the removed affected lymph node – and less in other places – like my spinal chord. Working further backwards, they know the angles that the radiation needs to hit me, so the planning programme knows how to move the machine around my body and where to slot in the lead leaves to prevent some rays getting to me.

Enough of that. This is the end of week 3. They said that the effects of radiotherapy would start to kick in. On Monday the consultant prescribed for me a lot of different pain relief. Codeine for everyday pain, aspirin to gargle with, some liquid to coat my throat and, in case things got bad at the end of the week, morphine liquid. She was right – or she cursed me! I needed the throat liquid later that day and I needed the codeine before bedtime. By Friday I also needed the morphine. The searing pain in the throat got worse and worse as the weekend went by. So much so that I eventually capitulated and pulled out of the Silverado golf event taking place in Maidstone on 13^th/14^th.

What they also said was that I’d only lose my facial hair, ha! The fluff on the back of my neck lined my polo-shirt collar today like a ruff. And a handful of proper hair between my neck and my right ear came out before tea.

My tongue has turned white. My saliva has turned green, speckled with red and stringy like gruyere in a fondue. My nose is running. My hands and feet are often cold and white. My taste buds are shot and now even water tastes like it came from a month old vase of dahlias.

But it was nice to be driven in each day. Thanks to Dave, Alan, Row, Keith and Maxine. The petrol money paid for three new members for Dunton Community Garden and a donation for Cancer Research as part of the Gamlingay Zumbathon on Friday.

And the radiotherapy technicians enjoyed the cakes I took in on Wednesday for my birthday, and the music for each of the sessions: This week’s choices were, erm, varied. Nigel Kennedy’s rendition of Vivaldi’s Four Seasons. Simply Red. Queen – they wanted to keep that one as they danced around the computer screens. Jools Holland. Blur.

My sister enjoyed Sam Cooke – well after seeing in last week’s blog that I’d played it, she’d put on facebook that she loved it – so I sent her a copy. One of those Random Acts of Kindness that’s so much fun to do.

You don’t need me to tell you that the weather has turned. On Wednesday I cut up some more wood and on Thursday I lit the wood-burner and settled down to watch the last of the Harry Potter DVDs from Keren on the big telly. On Friday the big telly made England win. Talking footie – one of the technicians is an Arsenal supporter and her husband is a Liverpool supporter – so I wore my Liverpool shirt on Tuesday. But as Arsenal are ahead on goals scored, she wasn’t too annoyed. We laughed.

I think week 4 will be tough – so it’s Blue week. Really looking forward to Tuesday, though – it’s payday and England will beat Poland.

Love to you all

Frank

*A literal usage is the "normal" meanings of the words. It maintains a consistent meaning regardless of the context with "the intended meaning corresponding exactly to the meaning" of the individual words. Figurative use of language is the use of words or phrases in a manner where the literal meaning of the words is not true or does not make sense, but "implies a non-literal meaning which does make sense or that could be true"

Make this go viral

If you never read another blog in your life, read this one. The world is full of amazing people.

I'm humbled almost beyond words.

My friends. Those two words have set me off again. My.....  Friends......
created a video today. Two videos. For me.

How can I respond to this? Well, with tears. Prophetically I published a blog yesterday about tears. Little did I know what was brewing.

This is the video. http://youtu.be/1taRo70jIXI
And this second one features Rosie and MUST go viral. Send it to everyone you know. The BBC (Rhian?). http://youtu.be/n0lFD9BEmPY

I don't normally watch you-tube videos but Row was insistent.

The blog is below this one.

Tears

This one isn’t really a blog. Think of it as a poem.

Have I ever told you what I feel? Not really. I didn’t talk much about me before this started.

I remember someone who worked for me, Peter, at Woolworths, who after he’d had a deeply traumatic incident, would be ashamed to find himself crying at the stupidest things.

I’m not ashamed; embarrassed; but not ashamed, that tears flow now – oh, Row knows that I cried when I saw the Alhambra palace, the Grand Canyon, Machu Picchu; and I can cry when someone meets their cousin on “Who do you think you are?”; and when I think back to half-time of that night in Istanbul when Liverpool were 3-0 down and the lads sang 4-3 and the boys made it 3-3 and Dudek saved the penalties.

We should all be able to shed a tear.

But now I find that tears well up easily, often fleetingly, in my voice as well as my eyes.

And once, at least so far only once, a deep, wracking, flood of relief – yes relief, through happiness, when someone described their joy at seeing their partner looking so well and proclaiming their happiness just hours after surgery similar to mine.

Tears when I say how Row is coping – it’s going to get harsh for her too  soon – I’ll try to be a good patient – but that might be an act too far.

Tears when I say how you are – yes you who give me courage – you may think I do this alone – no, I do this with you all.

Tears for me? Tears for fears? Not yet.

Tears for souvenirs? – Yes – I’m happy to cry when I see how worried you are. I wish it wasn’t so. I’m glad to know you all. A hug, a handshake, a kiss, a smile, a laugh, a tear and a how’d-you-do to you too.

With love

Frank  :'(   sniff

Number 9

Blog 15 – Number 9

I was dreading Number 9. 

Do you know the Beatles’ White Album? That was the music of choice on Monday this week. It has some fine tunes; but more and more were dodging the radiation as I lay for longer than was comfortable under my green mask on the black carbon-fibre table in the treatment room.  Actually – and I mean actually – not literally – or like – I’d forgotten to put a CD into what Row calls my comfort bag when I set off to the hospital: Luckily I did have my ipod (PETE, another plug!) which I use to read the latest Stark novel while waiting for my turn on the spit-roast. I quickly picked an album and handed the device to the technician. They have a CD player, a docking station, an mp3 player and at the back of a shelf, even a cassette player for people to bring in their own tunes – I wonder what they’d say if I brought a Mario Lanza 78rpm 10” platter?

I covered last Monday (number 1) in the last blog.
For number 2, Bill drove me through quite heavy traffic. He was quite anxious that we were late – I was chilled. We got there with 5 minutes to spare. By the time he’d got the parking ticket (£1 for 12 hours as a special offer for cancer patients) and made his way to the treatment area, the technician had already ushered me from the check-in computer to the radiotherapy room. Deacon Blue kept me company on the couch.

For number 3, Wednesday 25^th it was Van Morrison. I drove myself. Today the machine malfunctioned, so they took off my mask and an unseen maintenance man re-booted it. Yes, re-booted. I noticed a small Microsoft Windows symbol on the display screen – shiver.
Number 4 brought the quite splendid Dixie Chicks and the quickest visit so far – the car was in the car park for exactly 30 minutes. I suppose I should mention the journey – it was brilliant! Thursday was gridlock day on the M1, A1 and M25 but only north-bound. There was one south bound holdup at Stevenage, but I shimmied round it on the A602 through town. There was a wall of red-lights in the distance on the M25, but they were waiting to stop anyone going beyond J18 (Amersham, Chorleywood, Rickmansworth) – and today that wasn’t me.

Number 5 – the end of Yellow Week – was Sam Cooke – ah, Sam, I first listened to him in 1969 when both my brother, Stewart and my sister, Trish, started buying music for the record player. (What’s Yellow Week? – you’ll have to see the Facebook M&M Photo to find out more).

Had a fine day Saturday – scored under a 100 in the Seniors’ Strokeplay competition – now that I’ve got no teeth I can justify being in a seniors competition. Then in the evening (early evening) friends came round to have fun watching the video I did of the entertainment from the Sutton Pantomime. Had a fine day Sunday watching Liverpool win on my shiny telly courtesy of Sky.

Week 2 – the start of Orange Week.

Number 6. (Does anyone remember those cigarettes? – I curse Sir Walter Raleigh. He was such a stupid git!) So why number 9? It was no joke. I hopped onto the machine at 10:30 confident I’d be off in time for my 10:45 consultant appointment and the Beatles blared. Back in the USSR – love it. Dear Prudence – calming thoughts, breathe deep, Glass Onion – the radiation peering through the layers of my skin searing through the cells of my self leering at the ills of my soul.....quiet now, shhh. It’ll be ok......... Oh-(b)La-Di, Oh-(b)La-Da – nonsense to bring it back to reality – and Wild Honey Pie – surely I should be nearly done by now. But no. In came the technicians and said they hadn’t even started yet as the machine was not dropping the lead leaves into the right slots for the Intensity Modification sensors to work. So today I had to hop off and do stuff (next blog) before coming back an hour or so later for a second session. More White Album – The continuing Story of Bungalow Bill – While my guitar gently weeps – Happiness is a warm gun – I really, really hope I don’t get to Number 9.  Martha My Dear – I’m so tired. But luckily, after Blackbird, the treatment finished and there was just time for a quick blood sample before a Moroccan Lamb Stew and then home.

Number 7 – the fastest run down the motorways to date – 51 minutes – I’ve never seen it so clear. The music was Train – I bought this one just before I started work at The RSPB in 1998. It’s kept me sane through many a project-replanning afternoon.
And finally Number 8 – yesterday. The Fratellis – it would take a while to explain how I got this album when what I was supposed to buy was The Puppini Sisters..... But I love it. Although again, I heard more of it than anticipated as we’d all forgotten that Wednesday is CT scan day when they add this on after the radiotherapy.
Popped into work afterwards to see lots of friendly faces.

So today IS Number 9 and I’m not dreading it at all. Chris Rea’s Road to Hell is in my comfort bag today. Not saying, like.

There. That was different, wasn’t it?

Cheers

Frank