The important stuff

Wednesday March 30 Session No 5

French version

They don’t have a formal buddy system in Radiotherapy. It’s a bit like the bad old days starting at school or college. 

Everybody else seems to know where to go and what to do, but for the newcomer it can be a bit baffling at first. 

So today I thought I’d try to do the buddy thing for anyone else out there having RT as an out patient. 

This kind of stuff is far more important than it might at first seem. 

First of all have a practice run before your sessions start. Check out the best way for you to get to the hospital at different times of the day.  

You may well know the way to the hospital, but do you know the way to Radiotherapy?  Is it the best way? 

My partner helped me find a clever route using a different hospital entrance that avoids the congested main reception. 

If you possibly can, have someone come with you, at least for the first few sessions. Don’t be all manly and proud. It’s so reassuring to have someone hold your hand (literally or metaphorically) when you’re feeling edgy. Though they can’t come in to the treatment area with you, it’s lovely to see a familiar smile when you come out. 

And if, like me, you have rather dud hearing (especially when I’m stressed) a second pair of ears is useful. And if, like me, you have a feeble sense of direction, it’s great having someone who can help you find your way around anonymous hospital corridors. 

Take something to keep you occupied. It’s called a waiting room for a reason. Something to read, a crossword, or maybe a puzzle book. You need to be able to hear when people call your name, so  best to avoid anything that means you have to put headphones in. (But don’t leave them at home if you have a bit of a journey in.)

Make sure your phone is charged.   Exchanging a cheery message or two helps things along nicely (and you can even write a blog on it). At my hospital there’s no restrictions on using a mobile in the RT waiting room and there’s free wifi and a good signal – even though the gateway to the RT quarter is deep in the basement of the hospital. 

Wear comfortable, practical clothes. I favour slip-on shoes and  tracksuit-style trousers with an elasticated waist. I find this handy as there is a fair amount of dressing and undressing in my routine (more on that another day). 

Oh, and if you’ve got into the habit of wearing short sleeve shirts for hospital visits  (sensible given the frequency with which people want to stick needles in your arm), it may be time to think again.  For the RT journey I would recommend long sleeves and maybe also a light pullover or cardigan. 

Arnie the X ray terminator doesn’t just need “Your bike, your boots and your clothes” to do his stuff. He also needs a constant temperature of what feels like about 15C. The RT room can feel chilly – especially once you’ve got your trousers off. Don’t hesitate to ask for a blanket. 

Try to smile and say “Hello ” to people. It helps. The RT staff are very kind and very friendly. A little small  talk helps things along nicely. 

The same goes for your fellow RT travellers. The  smiles I got on my first day really lifted me – so now I try to return the favour. A smile may lead to an interesting conversation or it may not. Worth doing either way. 

All these little things can help make you more at ease on your journey. But they also serve a much more important purpose. 

They put you in control – even if only in tiny ways. You are in charge of your own comfort. You have a plan.  

Stupid, stupid cancer doesn’t want you to be in charge. The more lost you feel the more it takes over.

So take control, however you can.  It gives you a map and compass for your journey. 

And when you get back outside – look up at the sky and breathe the air. Life is good. 

Count your blessings

Tuesday March 29 Session No 4

French version

In the corner of one of the Radiotherapy treatment rooms, hanging on the wall, is a rather eerie sight which I make a point of looking whenever I pass it.

It’s not a cheery sight, but it is something which I find always helps me on my way as I carry on walking through the RT quarter.

Carefully arranged like carnival masks in a fancy dress shop, is a row of full-face masks made from clear plastic.

Each one is a precise cast of the features of someone who is on a much, much tougher journey than mine.

If you’re having radiotherapy to your head, the mask is an essential part of your treatment. The mask is fitted like a second skin over your features and then it is attached to the treatment table. This keeps your head perfectly still and in exactly the right position as the X-rays target your tumour as precisely as the radiologists and their technology can manage.

No Arnie jokes – this is really serious stuff.

I share this with you not to shock, but to underline something a good friend shared with me a while ago.

“The thing about being in a hospital,” he explained, “is that it makes you realise that your problem isn’t so bad when you see what some people are coping with.”

I can vouch for the truth of this. Some of things I have seen, the people we have met, and the stories they have told us leave you ….. well, they leave you speechless.

When you see an ashen-faced child being wheeled into Radiotherapy – I don’t think anything can prepare you for the shock of pain and sympathy that arcs through you.

And yet it says something about the wondrous, imaginative resilience of people, that it’s precisely among those people whom you might expect to be crushed by the appalling load they are carrying, that you notice an extraordinary hint of a spring in the step, a glint in the eye.

The smile that child and her mother gave me as they went past was one of the most extraordinary things I think I have probably ever seen.

Yes, it’s important to be honest with yourself about how you’re feeling. (Very positive, since you ask. 4 down and 29 to go. Hey, we’re into the 20s! The odd cloud passes over now and then, but the sunny intervals are long and warm.)

And no, there is no “right” or “wrong” when it comes to how you’re feeling. (There are moments when “Why me?” slips its poison into my green tea or pomegranate juice. But I try not to feel guilty about it and make an effort to link arms more resolutely with “Why not me?”)

And yes, I think it’s really helpful and positive to share with other people about how you’re feeling: the good, the bad and the ugly.

But also don’t forget to look around you and count your blessings. That you don’t have to have your head immobilised beneath a close fitting mask every day. That you have never had to wheel your child into the Radiotherapy Department.

Count your blessings and keep walking – with maybe just a slight spring in your step.

Spring is here

Friday March 25  – Good Friday

French version

No RT session today as it’s a public holiday. So instead of the usual blog I thought I’d share some photos I took of the wonderful signs of Spring appearing all around where we live.

Big, bad… and smart.

Thursday March 24 Session No 3

French version here

Grey skies and a chill Easter rain in London today, but Arnie, my personal terminator kept his shades on as usual.

Once you’re lying with your feet and head in the rests set to your measurements and the computer controlled table has trundled you right under the RT machine, all you can see is a dark glass screen.

Moving around me with a smooth action Arnie fired his mega volt rounds with relentless accuracy, leaving, I hope and trust, a trail of brutal devastation among the cancer cells unlucky enough to find themselves in his path.

On impulse at the end of the session  I asked the radiographer if  I could touch the rotating head of the machine.

“Does it get hot?” I asked.

“Not really,”he said. “Go ahead and touch.” It was warm, but not hot.

“Would you like to see inside?”

I was childishly thrilled. A chance to raise Arnie’s shades and come face to face with the awesome power that lies within? Ooooooooh yes please.

“Just quickly then.”

The radiographer touched a button or two on the remote control unit and the business end of the RT machine swung upwards from its resting position.

But you couldn’t see anything – the X ray emitting head behind that dark glass screen was hidden behind two metal shutters.

“Those are lead shielding you see, and when it’s operating they open like this.”

A touch of a button and the two shutters slid apart to create a circular opening. Looking more closely I could see that each shutter is made up of closely packed lead rods, each one of which can slide to and fro independently of the others. Each one is dense enough to stop the X ray particles.

“And when we’re treating you, a computer controls the rods precisely to create just the right pattern. ”

Another tap of a button and the rods all shifted into an irregular shaped circle.

“And then as the head rotates around you it shifts dynamically to deliver exactly the pattern  of treatment your consultant has specified. ”

The rods danced making the circle wiggle and shift. My mind flipped back to the diagram we were shown on the first day. Now in understood the irregular concentric lines mapping the target area of my prostate bed.

“So when the machine is sending out X rays to hit the cancer, the lead rods are shifting all the time to protect the surrounding tissue from the rays as much as possible?”

“That’s it. Clever isn’t it?”

It certainly is. I’m so glad to have Arnie on my side. Turns out that not only is he big and bad, but he’s smart too.

3 down 30 to go. All good so far.

PS Apologies for a technical glitch which led to an incomplete version of this being published yesterday.  I think we’ve fixed it now.

 

 

 

This is unacceptable

Wednesday March 23 Session No 2

French version here

The foothills that rise up towards the Radiotherapy Quarter are covered in dense undergrowth. To reach the great RT plain you must first struggle your way through thickets of indecision and uncertainty.

But then you finally emerge slightly sweaty and out of breath into the bright daylight of the RT quarter. It’s a rather daunting landscape, but as you start your journey, you realise you are not alone. Messages of encouragement and support ping into your phone (Thank you!).

The first couple of day’s walking go fine and you find that other people are walking along with you.

The waiting area at the RT treatment centre is a friendly place. Conversations start up easily – we’re all here for the same reason, we are all walking across the RT Quarter.

Graham (not his real name) is a seasoned walker and a walking encouragement. He has just 3 sessions to go and he’s looking damn good on it.

Graham first started getting his PSA tested more than 15 years ago after his older brother, a GP, died from prostate cancer. Before he passed away his brother urged him forcefully to go to see his GP to get himself tested. “My brother warned me that my GP would probably tell me the test was no good, but he made me promise that I would insist on having it.”

About a year ago Graham’s annual(ish) PSA test sounded the alarm. His prostate cancer was caught early and his doctors have told him that after a course of RT as a primary treatment he stands a very good chance of being clear.

Graham’s experience with his GP is sadly all too common. My GP was cool on the idea of including a PSA test in the standard set of tests all men over 50 are entitled to on the NHS.

The problem is that it’s a notoriously unreliable test. Critics call it the Patient Stress and Anxiety Test.

Given that my father and my maternal grandfather both had prostate cancer (although neither died from it) I insisted.

It’s a simple test which measures the level of Prostate Specific Antigen in your blood. But having a raised PSA level does not necessarily mean you have prostate cancer. Various benign, and treatable, conditions may be the cause.

If your PSA test comes back with a raised level, follow the advice of Douglas Adams and Don’t Panic. Go back to your GP and try to have a calm conversation. You may find this a little embarrassing because he may want to do a Digital Rectal Examination. And that’s not digital in the sense of a string of zeros and ones. It means putting a well lubricated and gloved finger up your bum to see if there any lumps that can be felt in your prostate.

If there’s no lump the Doc will probably tell you to Keep Calm and Carry On and come back for another test in a year or so. Cheers! (probably).

If there is a lump you still shouldn’t panic. The next step is a biopsy. In my case my PSA test came back with such a high score (about four times the normal level) that I did not pass Go and I did not collect my £200. No gloved finger and lube. My GP sent me straight to hospital for a biopsy.

If the biopsy comes back negative you’re in the clear (very probably) .

[Why does that weasel word ‘probably ‘keep cropping up, you ask? Because things aren’t entirely that simple – see my advice at the end of this blog.]

If the biopsy comes back positive you still shouldn’t panic. These days 7 out of 10 men diagnosed with prostate cancer have no treatment. Prostate cancer is often slow growing and non-aggressive. This is where the popular view of PC as ‘something you die with, not of’ comes from.

In older men the chances are that something else will carry you off first, so the medics will advise you that there’s no need to do anything and they will spare you from pointless interventions (overtreatment in the medical jargon).

In the bad old days this wasn’t the case. Far too many men (especially in the United States) were whipped into surgery to have their prostate removed needlessly.   This overtreatment has given the PSA test a bad name – a very bad name indeed. A prostatectomy is a pretty serious op and all to often a life-changing experience (more on that another day perhaps).

But and it’s a very big but, if, like me, you are unlucky enough to be one of the 3 in 10 patients who need treatment, the PSA test can be a life saver.

I had a rather fast growing, rather aggressive tumour. And I was just 55, young in prostate cancer terms (the average age to be diagnosed with PC is between 70 and 74 years). As some medical wag put it: “If you’re over 80 and you haven’t got Prostate Cancer then congratulations – you’re a woman!

But sneaky old prostate cancer being the sneakiest thing in sneaksville, I probably wouldn’t have spotted anything for another 7 to 10 years. By which time it would have taken hold and been much, much more difficult to treat.

No the PSA test is not perfect – far from it. But for the moment it’s the best widely available option. So what should you do? Two things.

Firstly my advice is if you’re over 50 to get your PSA tested particularly if:

• your father or brother has been diagnosed with it (you are two and a half times more likely to get prostate cancer).
• your mother or sister had breast cancer (particularly if it was linked to faults in the genes BRCA1 or BRCA2
• you are a black man (1 in 4 black men will get prostate cancer at some point in their lives – they don’t yet know why it’s so high).

You can find out much more from the experts at Prostate Cancer UK or at Cancer Research UK .

Secondly I urge you to start talking about Prostate Cancer and make a fuss. Stuff the stiff upper lip.

Better tests and treatments are on their way (I joined a trial trying to develop a reliable MRI diagnostic test – after a wonderful down-to-earth nurse stuck her finger up my bum to see if I was a suitable candidate. So, no, I didn’t escape in the end).

The more pressure from public opinion, the more people say loud and clear to the people who hold the purse strings: “This is unacceptable” the sooner these new developments will become available and the sooner you won’t need to have someone stick their finger up your bum or suffer needless patient stress and anxiety.

And the fewer times I will have to use weasel words like ”probably”.

Sorry, I seem to have banged on a bit. But as you might expect I feel rather strongly about this.

PS – French readers are probably puzzled with this obsession with fingers  up the bum. Don’t worry it’s just an English thing. We/They can’t help it.

The Terminator

Tuesday March 22  Session 1

French version here

It’s taken me 56 years, but a couple of weeks ago I finally got a tattoo. In fact I got three of them – three tiny dots around my abdomen.

They served their purpose today when I went for my first session of radiotherapy. Tiny laser beams shone out from around me and the radiographers nudged me this way and that till they lined up perfectly. Salvage Radiotherapy may be a glorified form of what one of my friends called “nuking my bum,” but we’re talking precision bombing with laser guided weapons and, we hope, limited collateral damage.

The kindly male nurse who talked us through the procedures showed us the scan from the preparatory session (where I acquired my tiny tattoos). In effect it’s a target map. There at the centre of the blast area was my prostate bed and around it various ranging scales and concentric rings of “spillover” areas.

He was full of useful information. The average X ray you get to check for a broken bone or such like is delivered at a level of a few Kilovolts. The kind of treatment I’m getting is delivered at a level of 6 Megavolts or a 1,000 times greater. So it’s reassuring that they go to such lengths to make sure they’re pointing at the right thing before they pull the trigger.

The principle of radiotherapy in treating cancer is simple, if a bit brutal. When you pound a cell, cancerous or otherwise, with radiation it damages the DNA in those cells. As someone who knows a lot more about medicine than I do explained to me; ordinary cells can recover – cancer cells can’t. When radiation damages the DNA of cancer cells they can’t grow and divide any more and, over time, the cancer cells die. (Go here if you want to know more).

So, if I’ve grasped it right, think of your body as a brick wall and the cancer as some rotting or damaged bricks. So what they’re doing is tearing down one or two of my internal dividing walls – tossing out the broken ones and trusting that my internal brickies can put together the wall again.

No wonder then that one of the most common symptoms of RT is a feeling of fatigue.

But so, far so good.

I think I already like the strange revolving head of the RT machine. I’m going to think of him as my own personal Terminator. He’s big, he’s bad and he’s here to save me. I tried to visualise stupid cancer cells not knowing what’s hit them as he rotated around me doing his stuff, as impassive as a leather-clad Arnie behind his shades.

I have to admit though that there was one scary moment, even if they take trouble to warn you about it. Once they’ve lined you up and they’re ready to go, a loud alarm sounds warning anybody hanging around in the treatment area to leg it the hell out of there.

It’s just you, the Terminator and the cancer.

But I trust Arnie to make sure that when he’s finished doing his stuff just the two of us will be left standing.

Hasta la vista, baby.

Decisions, decisions…

Monday 21st March

French version here

So here we are ready for the off. A long journey lies ahead, but spirits are high. Last preparations and then we’re off. And it feels so good.

That may sound odd, but in fighting this stupid disease the great enemies are uncertainty, indecision and inactivity. To have banished the uncertainty (at least for now), to have made the decision, to be doing something feels so much better.

But it was a painfully difficult decision to make.

Late last year the Doctors advised me that my prostate cancer had returned. I was first diagnosed in December 2014 after a routine PSA test and a series of biopsies. A PSA or Prostate Specific Antigen test is a notoriously fickle blood test that in most men may or may not indicate the presence of prostate cancer. In January 2016 I was operated on to remove my prostate (a radical prostatectomy [RP] in the jargon). I made a very good recovery from the operation. My PSA level dropped down to almost undetectable levels. I had no incontinence problems and I even got my erectile function back. Life was good, if different.

And then gradually my PSA level began to creep back upwards. In post RP patients like me, there is no doubt. A rising PSA means cancer. Last autumn it jumped alarmingly and right at the end of the year it crossed the threshold where the doctors advised that action was necessary. The good news was that a series of scans showed no sign that the cancer had spread or metastasised into my lymph nodes or bones. The bad news was that a series of scans showed no sign of the cancer – anywhere. That meant the Doctors don’t actually know where the cancer cells that escaped the surgeon’s robot assisted scalpel are hiding.

Their experience tells them that they are most likely to be hanging around in my prostate bed – that is the area where my prostate used to be – doing the only thing that stupid cancer cells are good at, which is multiplying, in my case rather fast.

But they can’t be sure that is where the cancer cells are.

That means that the best treatment, 33 sessions of external beam radiotherapy (RT for short), has about a 50:50 chance of working.

Simple decision you might think; flip the coin and hope for the best.

But it’s not as simple as that. Because for a post RP patient like me the, as the lady Doctor explained to me in a distressingly brisk tone, there’s a 60 to 70% chance that the RT will render me impotent. Permanently.

Some 56-year-old men are ready hang up their boots, as it were. I’m not.

So I was faced with an incredibly difficult decision. Have the RT which might or might not work, but probably will make me impotent, or do nothing and take my chances.

Scouring the web revealed what the chances were. In my particular case if I did nothing there was only a 15% chance that I would ever get to draw my state pension. But I might arguably have a better quality of life for maybe 7 or 10 years until the cancer really started to do some damage.

In the end I decided to go for it. This is the last chance of a cure – it could could knock out the cancer for good. Do nothing and the cancer will probably spread. They can treat and contain prostate cancer that has spread, but they can’t cure it. They can buy you time, years sometimes, but only using sledgehammer hormone therapy which is effectively a form of chemical castration. If you deprive prostate cancer cells of testosterone it stops them growing. But it also makes you impotent and shuts down your libido. For me that would mean becoming a different person.

So I’ve decided to take my chances and have the RT.

I’m otherwise healthy and reasonably fit. Given the way my erectile function has come back (with a little help from Cialis), the very skilled German surgeon seems to have done an excellent job in preserving the delicate nerves that run over the outside of the prostate, and which are crucial in getting a stiffy. That means we have to hope the nerves can withstand a radioactive battering. And if they can’t, well I’ve been impotent before after the RP and we managed fine (even though there was always the consoling hope – well founded as it turned out – that it was temporary).

So let’s roll the dice. Let’s go on a journey across the RT quarter and see what lies on the other side.

The decision is made, keep looking forward and start walking.

And it feels so good. To be taking active steps, to be taking on these stupid little cancer cells.

To be a cancer survivor not a cancer victim.

Not: “Why me?” but rather “Why not me?”

If you want to travel far…

Sunday March 20th

French version here

Before this journey really gets going I thought I should try to explain why I’m writing this blog.

Everyone with cancer copes with it in a different way. In fact everyone copes with any serious health problem in a different way.

Some prefer to barricade themselves into a really secure part of themselves and battle it out in private. They seek to shield their loved ones and friends from the grim truth, the daily ups and downs. By keeping their cancer to themselves they see the best chance of preserving their established identity. They do not want to let the world define them by their illness. They may hate the idea of drawing attention to themselves or they may find that every “How are you doing?” only serves to remind them of the very thing they are trying their best to keep out of their thoughts. They may feel embarrassed, ashamed or guilty about their condition.

That’s not for me. I find it a huge help to be as open and honest about things as I can. I find that if I put things out there it reduces the capacity of my subconscious to envelop me in the swirling black mists of despair.

The support, encouragement and love of not just those closest to me, but also of much wider circles of family, friends and colleagues, past and present, is an incalculable help to me.

That’s hardly a startling revelation: “A problem shared is a problem halved,” “People who need people are the luckiest people in the world,” and so on.

But I have one or two other reasons why I feel driven to share my thoughts and feelings in this way.

First of all I’m a writer by inclination, training and trade. As I journalist tapping away on a keyboard (or indeed on a typewriter – yes I’m that old!) was a way of life to me for many years. I now work as a producer and director of documentaries, but the core passions remain – it’s still writing, but with moving pictures.

Writing is an itch and putting down words soothes that itch. And at the same time it helps me work through what’s going on inside my head and my body.

I also hope that by perhaps making a fool of myself it will help other people who find themselves in the same predicament. Being diagnosed with cancer is scary and confusing. At various times I have found it really helpful to read of other people’s experiences.

There’s an extraordinarily powerful advert for Macmillan Cancer Relief which occasionally pops up on the TV – every time I see it makes me cry. A middle-aged man stands in a skimpy hospital gown in a desolate freezing wilderness. He is utterly alone, chilled to the bone and he looks very, very afraid. Suddenly a disembodied female voice says : Are you alright there John?” John turns towards the voice and the scene is transformed. He is standing in a warm, sunlit hospital ward and a Macmillan nurse is standing next to him gently touching his arm.

So to all you Johns out there, rest assured you are not alone. I hope you find my words useful, if not, keep looking. You will find a voice that speaks to you. And good luck.

And finally I have to admit I’m on a bit of a crusade. Prostate cancer is the most common cancer in men in the UK with more than 40,000 new cases diagnosed each year. It’s the second most common cause of cancer death in UK men after lung cancer. In 2012 in the UK 10,800 men died from prostate cancer – that’s 30 a day.

Yet it is far less understood and talked about than say breast cancer, which kills just slightly more women (and men) each year – 11,716 in the UK in 2012.

It’s the “old man’s cancer” (almost three quarters of prostate cancer deaths occur in men aged 75 and over). It’s the slow growing cancer that “ you die with, not of”.

It’s a disease that’s difficult to talk about. It’s life changing and it’s messy.

It involves incontinence and impotence. The initial examination means someone has to stuck their finger up your bum. It attacks men directly in their sexual identity. This is stuff which most of us – especially men – find it difficult to talk about.

So I think I have a duty to speak about it as much as I can. So that people understand this disease better. So that men with prostate cancer don’t feel embarrassed or ashamed. And their family and friends can help them better.

So that the scientists get the funds they need to develop a really reliable screening test and more effective treatments.

So that politicians feel an irresistible pressure to get a proper national screening programme in place. (In France there is a routine screening programme for four of the most common types of cancer: breast, prostate, cervical and bowel).

So I shall continue to tap away at my keyboard sharing my story on this journey across the radio therapy quarter.

It’s a long journey ahead and as the African proverb says : “If you want to go fast travel alone. If you want to go far, travel together.”