Blog 21 - Some people are on the pitch

Some people are on the pitch.

They think it’s all over!

It is now!!

By March I will have come full circle. And I will have ended up somewhere very, very different.

It started and finished the same way: Back in June and then again today 19^th December 2013: I had a tube stuck down my nose with a light and a video camera on the end of it. A bit of lubricant to make it easier. Breathe normally said the doctor! (After all you are normal now, I thought today!!). “All looking good” he said. Back in June he didn’t mean that as one tonsil was inflamed. This time the tonsils and the cancer were no longer there! Simples.

Then he felt my neck. A bit sore. Back in June there was a lump. This time. An absence of lymph nodes, muscle and vein and an absence of cancer. Simples.

Parking was easy at Lister Hospital today. Just like in June. That’s why I chose to be treated there. Poetically on the opposite side of the same stretch of road almost outside the main entrance, in bright sunshine – although 20 degrees cooler. Full circle, but somewhere else.

Another snippet: I’m allowed to drive again. The meaning behind that is I’m no longer on strong painkillers – in fact I’m not on weak painkillers either! That’s not a snippet that’s brilliant. It means I’ve not got cancer, I’m not even in remission, I’m not even in recovery any more. I’m just in follow-up – the term the doctors use. They want to see me just every 6 weeks to look down my nose at me (literally, not figuratively).

I had my first MRI scan at QEII hospital in Welwyn Garden City last July and less than 6 months later I’m having my FINAL scan in the same hospital. Just one for the record. On Christmas Eve. No more needed. EVER. Full circle. We’ll hear the results on 9^th January.

I had my teeth out in August, sadly they won’t be coming back. But neither will dentures for at least 3 more months. Ah, well.

Hands up if you’re gonna get fit? I got fit back in July. I can’t ever remember being as unfit as I am now. Dizzy just standing up and staying still. Enough strength to hold a putter, but not a bowling ball. But you just wait! I’ll be running circles round yous before the summer is out.

Skinny as a rake, too. Making all the blokes jealous. Lost 42 lbs in 50 weeks. Maybe not honed yet.

I still felt fit in September after the surgery and when the treatment first started. In October I wasn’t too bad, although deteriorating towards the end. November was the pits with pain all day until eventually my medication was corrected. But there was a sting in the tail of that month when the fever hit and I didn’t think I’d make it. I said in the last blog that I felt the demon leave. This month, on Saturday 14^th December I felt Frank return. My eyes turned from ashen remains to bright flames. My future became mine again.

I’ve got a sick note still. I must applaud Row’s boss for allowing her the flexibility to look after me. I did thank him at the time. I must also praise The RSPB for their sickness policy. My sicknote is to the end of January after which I can make a phased return to work. Super stuff.

There are a few minor inconveniences to do with muscles and nerves that may clear up or get worse over the coming months, but hey, who cares. Now, where’s my 3-wood. Fairway Frankie has some golf to practice.

Row and I went to Spain in June when this journey began, to be with friends to celebrate big birthdays: We’ve already booked to go to Spain in March now the journey is ended, to be with friends – deeper friends. There’ll be a party atmosphere – I love a party with a happy atmosphere! www.youtube.com/watch?v=RFPLk5mJ1D4

And there’ll be one or two more parties in 2014. Perhaps one soon-ish to thank you all, and especially my Rowena for the love and support since the journey began, perhaps one later for me to celebrate life and a new decade when I’m 60 in October.

Full-circle? In 1966 I watched the World Cup competition unfold before childlike eyes of amazement. I saw Brazilians on the streets of Liverpool. I saw colour inside Goodison Park. I saw black and white images as England won. In a different place? What dreams will come true in 2014?

May your friends be with you. Thank you everyone. I didn’t know how many friends I had when this journey began – I am in a different place now.

And here’s to my best friend. Row.

Blog 20 – Helter Skelter

Helter Skelter* – Beatles white album

I was feeling hopeful in the last blog – and I know I was right to be – but then I got sick. Very sick.  I lost another half a stone – so now down to 10st 8lb a full 3 stone down from when this began in June to a weight I last knew back in 1975 – have a hunt for a pretty cool former Facebook profile photo. The sickness was probably a virus and took hold in a number of ways. First it gave me a temperature – sweating, shivering, listless – although the thermometer said I lied at 36.4c. Second it took away appetite. And this, together with the Third – it made everything smell like burnt rancid stable straw –coated my mouth, gums, throat and nose so I couldn’t eat a thing and couldn’t face an overnight feed after failing to keep one down. The fever kicked in on Friday morning and lasted until 3.30am on Sunday morning – I felt it depart – like a demon, done or defeated –defeated I guess, ‘cos I’m not done.

What a difference a week made: By Thursday Liverpool had returned to winning ways with a truly fantastic 4-goal feast from Suarez and Row & I ventured out for 10-pin bowling with the fun-loving section of the RSPB’s Information Systems team. I was still weak and managed to drop one of the heavier balls, scoring just 6 after two turns– but then I turned it round and finished with 92, 2^nd in our lane of 5. But that was enough and we went home before the second game started – thanks Bev for organising it!

But what you probably wanted to hear was that my appetite had returned to such an extent that the dietician refused to give me any daytime liquid food (Ensure) and so we had to go shopping for jellies and yoghurts and rice-puddings. And a week later I’m on proper vegetables (well, boiled until they fall apart) and jacket potatoes (topped with lashings of butter) and fish that falls off the bone. And thick soups and porridge. And puddings, yes, puddings! I don’t do puddings. And tonight I’m having a go at making a roast chicken dinner. So I hope to be ready for Christmas.

And when the dietician heard about my exploits they also reduced my overnight feed by 25% - although I was so full the last two nights I didn’t bother. I’m still waiting for that first glass of champagne and the pint of Thwaites.

Now there follows a piece of news: But first: I’d intended to discuss next clinical steps with the doctor – you see something was starting to nibble at my consciousness – something I, as project manager, knew I should consider – a dark question; A question which I don’t want answered yet. Which I’d managed to keep away – I guess it came in with the demon. It is deeply buried inside another question – like a palimpsest – the question for the doctor could be faced and was a natural next step. So first, the piece of news that prevented the question escaping.

They’re sending me for a scan on 19^th December. That is truly stupendous news and caused a dropping of jaws. I wasn’t expecting that until February. We jumped straight to the conclusion that was “When the scan gives the green light, I’ll officially move out of treatment and into remission.” Which is precisely what we want to hear. The question it flanked was “So how will I know that this treatment has worked?” The darker question is “The scans that you do won’t detect the presence of cancer – just heat and lumps. It won’t tell you that treatment has worked. So. What should I look out for?”  It might give the wrong answer – Treatment hasn’t worked and so - the darkest, project manager, question will need to be answered – “What contingency plan would we follow?”

But hey! I get knocked down, but I get up again! (You’re never gonna keep me down**)

Since radiotherapy started ulcerating my mouth in October, I’ve not slept much as my mouth clogged up every half hour - an hour at most – but recently the amount has reduced and I managed 2 2-hour stretches both of the last two nights – whehay!

Treatment at Mount Vernon has been excellent and I’d like to give something back. I give a fair bit to charity (both hours and money). I’m not up to doing direct work yet, but I’ve decided to make the Paul Strickland scanner centre my charity for the next 5 years. http://www.stricklandscanner.org.uk/ They provide and run and maintain the machines. Yes, they’ve just supplied a new one costing almost £1.5m but it costs £800k pa to run. If you want to join in, you can either donate anonymously using the methods on their website or send it to me and I can keep a tally – Bank sort code 20 74 81 – Account number 13113310

I guess a word of warning is needed to finish. I went to the barbers on Saturday, for the first time since treatment began – and was dismayed to see how shaken the hairdresser was at seeing me. She wasn’t prepared for how I looked – gaunt, undernourished, cold, with a chunk missing from my neck. I don’t mind her reaction – but I hate to think of causing any distress – so be prepared – I look 21 again - except for the pink cords.

Oh one more, to finish on a good note: Pain relief is massively down from its peak of 87mg patch of Fentanyl and 4 doses per day of 15mg of Oxycodone hydroxide to just 12mg of Fentanyl and only 2 doses all week of 5mg of Oxycodone. **Chambawamba!

*When I get to the bottom I go back to the top of the slide / Where I stop and I turn and I go for a ride / Till I get to the bottom and I see you again.

(Sorry about the font changes)

Blog 19 - Light

I must admit to forgetting how many people read this and how many people think about my journey.

I was sat at home last week feeling really sorry for myself when the phone rang and then an email came through and a text and the mobile phone rang and a facebook message popped up. Wow. No time to feel sorry for myself when so many of you are doing that for me. Thanks everyone.

But that didn’t take the pain away; it gave me just enough determination to get through the next couple of hours. That got me through the next two as well, and the next, and then overnight and a morning at Mount Vernon. Then the doctor explained properly about the pain relief strategy. So we’ve changed the plan and things are looking better and there’s light.

Gosh, my last blog was on 26^th October. Since then I’ve had my final week of treatment – brown week – and the two weeks of things getting worse – and they did – and now, after a few more days of no improvement, there is light. Yay!

I’d said a couple of weeks ago that I would investigate the role of the various painkillers – pity I didn’t follow that through. I’m now on 87mg of Fentanyl patches – up from 50mg last time I wrote. What this is doing is controlling the background pain; The pain of generally combating the chemotherapy and radiation effects. What the doctors call break-through pain is those periods when further painkillers are needed. To combat those occasions when the body is off doing something else and not fighting the main pain source. The first doctor suggested that this breakthrough pain dose should not be substantial – so I tried to keep it at 5mg. The second doctor, two weeks later, explained that the further painkiller also had to break-through the Fentanyl before it took effect, and so the minimum amount should be 15mg. Now that I’ve done that, I’m not in much pain – Yay! And crucially, my hallucinations aren’t too bad.

The second doctor also gave permission for me to use paracetamol for headaches. Headaches caused by the opiate based painkillers. So yay to that too!

Row and I have Yay’d so much we have
1) Booked 10 days in Spain in March
2) Booked 3 nights in Liverpool and 1 in Warwick for Christmas
3) Started the ball rolling on getting a new kitchen.

And in the next blog I’ll tell you what I intend to do to give back to Mount Vernon for the excellent treatment I’ve received.

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

Blog 14 - What happened?

Blog 14 -  What happened? - Day 0 – And treatment starts
At 8pm on Sunday 22^nd September I was told that I WOULD be finished by 5 or a bit later on Monday and that 6pm was a perfect pickup time.

Treatment started at 9.40pm on Sunday when a bag of saline solution was connected to the cannula and the pump was set to inject a bit into my vein every 47 seconds. The nurse said this was to ensure that the tube would definitely be unblocked when the main hydration process started.
The pump made a 3 second noise like a teletypewriter going across the page and back again. Or a dot matrix printer doing a row of dots and a carriage return. There were two other patients having injections. Their pumps both worked every 20 seconds. There were another two patients with no sound effects and there were four empty beds.
Imagine the potential cacophony!
No, you can’t imagine because at midnight precisely my pump automatically switched to injecting non-stop. The row of dots followed a quarter second after the carriage return. It was as though a mechanical cane toad had hopped into the ward.

At 2am the alarm on my pump went off to tell the nurse that the first saline bag was empty and she popped in a second one fairly promptly. By 3.48am I’d already been to the loo three times. This is when a nurse came round to give me some anti-sickness medication (which I knew might be happening) and some steroids (which I didn’t know about). I took the opportunity to get some paracetamol as I had a stress headache (exacerbated by the noise of the machine).

At 4am the second saline finished and was replaced with a bag of solution called mannitol. This is a diuretic. The guy in the bed next to me has started snoring and the guy in the bed opposite has just taken a dose of Gaviscon and is now burping the frog chorus. Jeepers, and now two have a go at clearing their throats of mucous. The sound of things to come.
I read for the next hour – another few chapters of Pete Carroll’s Stark Contrasts.

At 5.05am the alarm on the pump went off to tell us that the bag was practically empty – another 5 minutes to get rid of the last bit – another check that my name was still Francis James – and the clear liquid that is Cisplatin was attached to the cannula. The bag is enclosed in a yellow plastic bag with the dire warning “Keep at room temperature” in bold black letters. There is absolutely no different sensation as the liquid goes into the vein – just a metaphysical feeling of – ‘here it comes’ ‘this is the start of the cure’ ‘see it through, now’ – and some relief as the pump speed has been halved and you can almost count the 40 dots being printed in the 4-5 seconds before the carriage return.
Twenty minutes gone – 1/12^th of the way through and no sign of any nausea. Another hour, 1/3^rd done, 6.30 am and the only effects so far is a dry mouth. Blood pressure remains a bit high. At 8.40 am the pump alarm falsely indicated that the bag was empty, but it took until 9.30 for this to be true after much manual intervention and a couple of anti-nausea pills.
By 9.40 the first of the two saline bags was attached – these take four hours each, so I will be finished by 6 pm. Phone calls to Row and Aziz and Bill set things back to the way they were for transport.

A few more day patients have arrived including one who’s been an extra in the Harry Potter movies. You can just tell he’s a wizard. Went and had a chat with him, but sorry, no photos.

Radiation was due at 10.25, but can’t be confirmed until the hydration has started and must wait for an hour after this, so it’s now wait until the machine operators call back with a slot. I was told that it had to be within 2 hours of cisplatin finishing. But when 11:00 approached and still no word I asked for more info. Eventually a 1pm slot was allocated and I was then told that they had 4 hours after cisplatin.

The radiotherapy did start at 1 and lasted half an hour – first the music – I chose the first Paulo Nutini album. Then the mask then some x-rays to check it was lined up, then the radiotherapy  with the machine making faint whirrings as it moved around my neck. Then I fell asleep! All over by 1.30 – longer than expected – they say that they’ve been told to increase the amount given.

Back to the ward. The first drip was due to finish at 1.40 but went on til 2.10. while the second drip was running I found a bit of time to watch the Avatar DVD borrowed from Malcolm and Mandy. It looked superb on this HD, widescreen, laptop.

The tablets that I need to take home arrived at 5.30. The drip finished at 6.15 and had to be followed by a quick rinse to ensure there was no potassium resin in the veins otherwise they may turn black. And at 6.30 I was running for the door and the carpark where Aziz soon arrived to take me home.

Thanks to all the people who helped me through this first day – including the nurses, trolley dollies and meal makers.

Blog 13 – Anger – And relax

Blog 13 – Anger – And relax

I got angry on Thursday – don’t worry it was controlled – but it didn’t do my head, my heart or my body any good. 

Anger is just plain bad. 

It was my fault. I’d built up my expectations of the day way higher than they should have been, expecting all of my questions, both known and unknown, about the treatment starting Sunday afternoon through to Monday evening to be answered. After all Mount Vernon MUST know what they are going to do to me, so surely they would tell me.

And relax. I phoned the hospital on Friday, straight to Ward 10 where I’ll be treated. I explained what I wanted to know and why I wished to know it. Helpfully the person relayed the message to someone who knew and they rang back half an hour later with the answers. Superb. Happy now.

But wait. I’m on the ward now – and they DON’T really know. 

I’ll tell you what – I’ll let you know after it has happened – then it will be correct.

Back to Thursday: So, I’d been told that a blood test would be done on Sunday evening, then I got a call on Wednesday to say that a blood test would be done on Thursday – which it was at 1pm, then at 2.15 I was told I’d have another blood test done at 4.15 – when we were due to be on our way to Liverpool. So at 4.15 I refused. 

Back to Sunday: And so, I had a blood test today (Sunday evening).
Next I was told that I’d be able to come home at 6pm on Monday – and arranged my transport – then I was told it would be between 7 and 7.30, now I’m told it could be anytime after 7 – so, I decided to stay in hospital on Monday night as I’d have to come back to hospital for 10.10 on Tuesday morning. And I told Aziz and Bill of the new arrangements.

I’ll tell you what – I’ll let you know after it has happened – then it will be correct.

And relax I said!

Science is - what you make of it

Blog 12 – Science is - what you make of it

More x-rays on Thursday last week for the dry run – which involved using x-rays to line things up rather than gamma rays to deliver treatment. You know, having just written that, I’m driven to find out what’s the difference. So here’s the science bit.

The distinction between X-rays and gamma rays has changed in recent decades. Older literature distinguished between X- and gamma radiation on the basis of wavelength, with radiation shorter than some arbitrary wavelength, such as 10−11 m, defined as gamma rays. However, they are now usually distinguished by their origin: X-rays are emitted by electrons outside the nucleus, while gamma rays are emitted by the nucleus. (Try this for more but simplistic  explanation http://www.bbc.co.uk/schools/gcsebitesize/science/add_gateway_pre_2011/radiation/treatmentrev1.shtml)

Radiation treatment can be systemic – you swallow the radioactive material or inject it into the blood; Internal (aka Brachytherapy) – you wear it – either a pill injected next to the affected area or the material is taped to the skin; or external – you have it thrown into you by big spanky, shiny machines.

Mine will be external – so photon beams. A photon is the basic unit of electromagnetic radiation. It can be thought of as a bundle of energy. The amount of energy in a photon can vary. For example, the photons in gamma rays have the highest energy, followed by the photons in x-rays and way down the list is light.

There are many different way of delivering the photons. Mine will be IMRT (Intensity-modulated radiation therapy) – IMRT uses hundreds of tiny radiation beam-shaping devices, called collimators, to deliver a single dose of radiation. The collimators can be stationary or can move during treatment, and can allow the intensity of the radiation beams to change. This modulation allows different areas of a tumour or nearby tissues to receive different doses of radiation.

Like chemotherapy (explained in the previous blog), radiation works by breaking a piece of the DNA molecule inside the cells that it hits. This break keeps the cell from growing, dividing, and spreading. Unlike chemotherapy which attacks rapidly dividing cells, radiation is indiscriminate –so both cancer and non-cancer cells are killed, and you have to wait for normal cells recover and work the way they are supposed to. The dying off continues for two weeks after radiotherapy commences, the recovery takes a long time to complete – for some things, a few weeks, for a lot of things, three months, and for some other things it could be a few years or it could be never.

How bad can it get?

In these quiet days between having my mask fitted and starting treatment, there’s been a lot of time to think about the coming weeks. I’ve said that I’d let you know what I might go through. I’ve read some horrible stuff from previous cancer survivors – and I’ve read about some people who’ve just breezed through it all. So I’ve tried to put myself in everyone’s shoes. I can’t say I’m happy, but I can say – bring it on!

So where to start?

The head? What will I think? The heart? What will I feel? Or the body? How will it react?

I’ll start with the easiest. The body.

Part 1 of the treatment consists of two sessions of Chemotherapy. My brother-in-law, Kevan, came to visit last week and told me how interesting the chemo chemical was – I hadn’t given it any thought – he said he didn’t really know how it worked – so I thought I’d find out. My drug is Cisplatin.

Cisplatin is a simple, tiny, molecule. A square shape with two chloride ions at the top and two ammonia molecules at the bottom with the all-important platinum ion in the centre. I quote from a Royal Society for Chemistry lecture – “Platinum, like many heavy metals, is rather rare in the biosphere and as a result humans have not evolved to use it in our biochemistry, nor have we evolved any particular defence mechanisms against it. As a result, dosing yourself up on soluble forms of platinum results in some rather nasty toxic effects such as nausea and kidney damage (as the body tries to get rid of the stuff out of one end or the other), nerve damage and hearing loss.” In addition, there can be dizziness. For some, the nausea can be violent and can last for weeks. For others, the nerve damage can result in months of hiccups or cold feet or loss of taste or smell. The tongue can become very sensitive so much that it feels like it is burning, or it can become very insensitive so much that you can’t feel hot or cold food. Kidney damage isn’t obvious but it can also be accompanied by constipation – which is odd, you’d expect diarrhoea. For me, the greatest, probably my only fear is deafness – not being able to hear birds, music, traffic, whispers, sobs, laughter, streams, thunder, conversation, “You’ll never walk alone”, BigglesFM. “The point, of course, is that cisplatin also fights cancer, and while partial deafness and nausea are not nice, they don't kill you like cancer does. Moreover, medical research has some excellent ways of minimising side effects and maximising the effectiveness of small doses of the drug.” “So why is cisplatin so good at fighting cancer? When cisplatin gets into the body, its neutral overall charge means that it can cross the cell membrane. Once in a cell it becomes activated by the replacement of one of the chlorides by a water molecule. The chloride falls off because the concentration of chloride within a cell is much less than it is in the bloodstream. The water itself is, in turn, easily displaced by the basic nitrogen atoms on DNA, specifically on a guanine nucleobase. Once bound to DNA the second chloride ion is replaced by a guanine nitrogen atom from an adjacent DNA strand. 

The result is a platinum fragment cross-linking two DNA strands within the double helix. This cross-linking prevents the cell dividing by mitosis and so the tumour stops growing. The damaged DNA can be repaired in healthy cells by DNA repair enzymes, but in tumour cells the 'kink' induced by the platinum cross-link is not recognised and the DNA cannot be fixed. As a result the cell undergoes programmed cell suicide - apoptosis - and the tumour shrinks.” The stunning thing is that the size of the cisplatin molecule is exactly the size of the gap between the two helix strands of DNA.

There’s more at http://www.rsc.org/chemistryworld/podcast/CIIEcompounds/transcripts/cisplatin.asp

Part 2 consists of thirty sessions of Radiotherapy. For details and an understated view of side-effects see - http://www.canceractive.com/cancer-active-page-link.aspx?n=261

Nausea again.

Pain – from none (I don’t believe that) to almost unbearable leading to taking Fentanyl which is the only thing to control it. I’ve read that Fentanyl is only used on cancer patients. It kills children and animals. It is also highly addictive. The pain will mainly be inside the mouth, especially around the tonsil site, but also the neck – I’m apprehensive as my neck is still sore from the lymph node operation and the throat is still sore from the tonsil operation.
The tongue and gums can become ulcerated. Mean ulcers.
Oral thrush is common: Symptoms:  sore, white patches (plaques) in the mouth that can be wiped off. a painful, burning sensation on the tongue. an unpleasant taste in the mouth that can be bitter or salty. redness and soreness on the inside of the mouth and throat. cracks at the corners of the mouth (angular cheilitis). difficulty swallowing

Saliva as thick as wallpaper paste and as smelly as socks worn by sheep. Or NO saliva at all. Which is worse.

Tiredness. Can’t be bothered to open your eyes tiredness.

Skin reactions: From redness, to black or blueness, from mild irritation to blistering or suppuration. Sometimes severe enough to have to suspend the treatment.
Hair loss – bizarrely both from where radiation enters the body – the front of the neck – and from where it leaves the body – the back of the head. I’m told that I’ll not need to shave my neck, sideboards or cheeks ever again – just my moustache and chin.
Anaemia – the treatment upsets the number of red or white cells or the platelets in the blood (by stopping the bone-marrow from creating them – because, like cancer, they grow faster than anything else in the body except hair. At worst, blood transfusion(s) are needed. At best, Guiness is good for you.
Stiff joints and muscles.

Oh, and one more. Radiotherapy can cause cancer. But hardly ever. And not in me.

 The head. Well, in the first weeks I knew I had cancer (but not which type) I did my bucket list. Nothing grand. But that was a waste of time as I now know that I will survive this. So if I know I will survive this – and my medical team have confirmed this – then I will survive all of the symptoms above. My head says it’s only 6 weeks of treatment followed by two weeks of worsening symptoms – just like summer school holidays – it’ll pass quickly and when I look back it will be sunshine with a few grazed limbs.

The heart. Hmm. The heart says THANKS. For all of your support and especially to Row. My heart tells my head – Numpty – of course it will be OK. My heart breaks for everyone who is going through this – and especially for those who are on-lookers and carers. I can and do cry and then I feel better – you can and do cry and nothing has changed. Please, please, please. Know that I feed from your care and your belief in me and my ability to get through this and my faith in the people who have chosen to specialise in this medical arena.

Love to you all
Frank

Up and Down

Started practicing pitching last week – the neck is still painful, but improving by the day. On the Tuesday I went to the putting green and got in a few more pitching practices, then on Wednesday I did 18 holes of pitch and putt. The week rounded off with a full 18-hole competition on Saturday. Many thanks to Bill for driving. I did an 8-mile bike ride on Sunday. This week I drove myself for the first time in ages and did another 18 holes with Alan. A LONG way to go before I’m properly fit.

So that was the up.

On Friday I got myself right worked up. I’d spent the previous day reading about other peoples’ experiences with the treatment I’m about to have – those horror stories, combined with not knowing exactly when treatment will start and finish, meant that I couldn’t file everything away in my mind.

And that was the down.

On Monday, 2^nd September – blimey, 2/3rds of the year gone – Row and I had an early start to get to Mount Vernon hospital for a few appointments, starting at 8:45. First up was the EDTA – actually it’s CR-51-EDTA which is ethylenediaminetetraacetic acid plus radioactive Chromium-51. This was injected in my right arm just before 9am. A few minutes later they ran a Geiger-counter over both arms to see that a) it really was in there and b) it was going round my body. Then at both 11am and 12noon, they took a blood sample from my left arm.

Whilst waiting, Row had a cooked breakfast. With no teeth, all I could manage was a coffee. We also visited the Macmillan centre and got some answers to the long list of questions I’d prepared.

At 12 we had lunch. Yes I managed a Moroccan lamb stew with turmeric rice. Then went to the Radiotherapy department where first I had my green mask fitted – you’ll have to go to Facebook if you want to see the photos – this involved having a load of x-rays taken and lines drawn on my face, neck and chest. The mask was put into hot water and clamped over my face onto the table I was lying on. It was then pressed and smoothed by hand so that it fitted snugly and then it was left to cool. Afterwards a small tattoo was etched on my chest so that everything can be lined up later. Finally, a cannula was put into my right arm for them to first take another blood sample, then by remote control, inject an iodine dye while the technicians were out of the room and the CT scan was being done.

Lastly, we saw the nurse assigned to my case where most of the remaining questions were answered. Those that she couldn’t were referred to Dr Moule who is overseeing my treatment and he was able to answer those. The nurse removed the cannula and we were free to go.

I also came away with a bag of very expensive mouthwash which is for the excruciating pain that I’ll have in my mouth and throat once treatment gets underway, and tubes of aqueous cream to sooth the agony of the burning of the neck.

Here’s a quick rundown of the next steps:

Thursday 19^th. Dummy run of the equipment involved in the radiotherapy. Followed by a two hour session to explain the possible effects of the chemotherapy.

Sunday 22^nd. Check-in to Mount Vernon Ward-10 in the late afternoon.

Monday 23^rd. It starts. The first Chemotherapy begins just after midnight and I get to come home round about 6pm. In between times is the first Radiotherapy session. THANKS to Aziz for agreeing to give me a lift home.

24^th – 27^th. Next 4 radiotherapy sessions. I plan to drive.

30^th. Radiotherapy plus first of the weekly review meetings with doctors, clinicians and therapists.

1^st-4^th October. Next 4 sessions. I plan to drive if I can.

7^th through to 18^th repeat of previous 5 days. From here on, I will start to suffer.

20^th October, check in to Mount Vernon again for the second chemotherapy session on 21^st and again, home at about 6pm.

21st-31st. Radiotherapy continues on weekdays.

Final radiotherapy is on Friday 1^st November.

Each of the next three Monday’s I have to go back to Mount Vernon so that the team can check on progress. After that, checkups can be done at Lister Hospital, Stevenage. Also, the pain stops getting worse now. But may not reduce for a while.

And on 19^th December I see Mr Mochoulis who is the ENT consultant. At some point in March there’ll be scans to see if it is all gone and healed properly. This will be the end of treatment and the start of the 5-year wait for the all-clear.

I still haven’t got the forthcoming trauma put into a cozy compartment of my mind. Thank you all for your support. It enables me to be more cheerful than I might otherwise be.

Frank

Limbo

It’s been a strange week.

I’ve been fretting at my inability to make a decision on whether to spend a load of money on Sky Sport or BT Sport to keep me going over the coming months and had just about made up my mind not to bother, the footie would be on in the evenings rather than during the day when I’d need it. Then on the front page of Saturdays Daily Express was a competition on page 37 or something. Normally I’d have put it to one side for later, but this time I sent off the email straight away.

Sunday was Row’s birthday. I spilled the beans about the Cam punting experience that we had to postpone. But I didn’t tell her about the champagne – Pol Roger – nor that friends were coming round to enjoy it in the sunshine in our lovely back garden. (Thanks to Bev and Wayne, my personal shoppers for delivering it on Saturday, plus flowers). Before that the wonderful NHS sent round the District Nurse to check that my PEG was ok and that we were coping with it. I’d developed a sudden bulge of liquid under my chin, and I’d had a temperature (unbelievably, the nurse did not have a thermometer to check it), and a bit of a runny nose and tickly cough. She advised that I went to the GP on Monday.

Monday I walked to The Dunton Garden www.duntongarden.org and back again. This was a bit more tiring than I expected, and so I abandoned the plan to get the bus into Biggleswade to see the doctor, and got Sarah, the Garden Co-ordinator to give me a lift in. Oh, I’d also had very strong stomach pain which the doctor reckoned was fluid escaping from the stomach and getting to the subcutaneous layer. He took my temperature with one of those electronic jobbies – it was a bit elevated and so prescribed anti-biotics. I decided to buy a thermometer – just £13 from Lloyds  - and then went to Biggleswade library to wait for Row to pick me up after work.

Tuesday – Bill who I play golf with, came round in the afternoon. Just after he left – SKY RANG TO SAY I’d WON the TV and a year’s subscription to SKY SPORT. Just BRILLIANT!!!!!!!. Becca brought round the DVDs borrowed from Keren. Also brilliant.

Thursday – we went to Lister hospital to see the radiotherapy consultant team. A new person – Nikhil – saw us. I’d tried to find out what the appointment was for, but nobody was able to say, so I prepared a list of 12 questions anyway.

1)   Why radiotherapy seeing as they’d removed the tonsils and lymph nodes?
A. Because both the right tonsil and one of the lymph nodes had ruptured thus potentially allowing cancer cells to have escaped. Radiotherapy will get them.

2)   Why chemotherapy ?
A. Because it weakens the cancer cells (a more detailed explanation is available) and makes the radiotherapy more effective.

3)   Which type of radiotherapy – fractionation or IMRT?
That impressed him!
A. IMRT – Horrid side effects!

4)   Which chemotherapy drug?
A. Cysplatin – Horrid side effecs!

5)   What stage of cancer?
A. Stage 2 – No, I said, it must be either 3 of 4. We debated and agreed that it was stage 3. Keh. Ay. Keh. OK he said, trying to regain the upper hand. It’s T2 N2a. That’s interesting I said (translated as – I’ve no idea what that means but thanks for recognising that I would be interested in researching it).

6)   Is my carotid artery compromised? (What a cracking question that is).
A. No. (What a short answer that is).

7)   Results of biopsy.
A. They took out 57 lymph nodes. One had a 3.5cm lesion with broken skin (ECS) – so that’s the one that cancer escaped from. And there is evidence of PNI+ in the tubes containing small nerves. But none in any of the blood vessels.

8)   Which parts are to be irradiated?
A. Both sides of the neck plus the back of the throat.

9)   When is treatment?
A. A bit of confusion here. I think the process starts on Monday 2^nd September when the mask is to be fitted up. But there’s also the kidney test which we’ve asked to happen on the same day, thus saving a trip. Then there’s a CT scan which wasn’t mentioned, a tattoo (which I think happens on trial run day) and the trial run which I assume is w/c 9^th Sept. This would mean treatment starting on 16^th Sept.
And time of day?
For Chemotherapy we need to get to hospital on the Sunday afternoon for treatment to begin at midnight lasting until 6pm on the Monday when I can go home.
For Radiotherapy, won’t know until the dates are booked.

10) Do I need to worry about the following current health issues:
a) Anti-biotics – there was no need for these as the swelling was expected – well NO-ONE TOLD ME – can stop these after completing 5 of the 7 days.
b) PEG site state and stomach pain, plus now some diarrhoea – to be expected. It looks fine. If pain persists, call the surgery team.
c) Headaches, neck ache, skin ache, muscle ache – and twanging nerves – to be expected.
d) Shooting pain each time I take a first mouthful at meal times – should begin to go away
e) Swelling of neck, face, head, throat – to be expected as the lymph drainage system isn’t working yet. Massage would help, but currently too painful to contemplate this.

11) Purpose of 7^th Sept appointment?
A. NONE! Will be cancelled.

12) When is next appt.
A. 2^nd Sept at Mount Vernon.

Once again, we came away from the hospital in a bit of a daze. I decided not to process the information until overnight. This was a mistake, because on Friday there was no-one at the hospital to be able to ask questions about it and all of the potential dates and gaps in the schedule. So we’re left in limbo over the bank holiday weekend – and lots of people are asking what the next steps are.

Friday. Our dog Kai is not at all well. In lots of pain. Back legs, front leg and also head/mouth/face. Row took him to vets. He and I are now on painkillers. He looks worse than me. At least I can have a beer. Bill from work came round to share some Cusquena beer – made in Perú. Bill brought round some beer made in Potton. The new TV arrived in the morning.

Saturday. Our 28th wedding anniversary. On the spur of the moment we did lunch at La Pergola – see their website - http://lapergolacambridge.co.uk/ just what we both needed, the lasagne and tiramisu went down a treat.
Both Liverpool and AFC Liverpool win again!

Today. The rain has finally stopped. We’re going to The Dunton Garden for The Jenny Day picnic to celebrate Jenny Pates’ creation of and retirement from such a magnificent community organisation. Looking forward to the music too. Thanks, Charlie, Al, Jimbo and Fluff.

Here comes the sun!

Frank