Radio Days (7): Breakdown

Don’t worry it’s the machine not me. Mrs Preen and I walk into St Thom’s at 8.30 sharp for my Treatment Review and it’s clear something is up. Apparently, when the first radiographer arrived at 7.30 to crank up the Tomotherapy do-dat, the machine was having no part of it and refused to be cranked. More of this in a moment.

My Treatment Review is with Maggie whose beat is normally at Guy’s Cancer Centre, but she is filling in for Jenna who assiduous readers will recall from Radio Days (1).

As mentioned last time, this is not to see if the treatment is working but to check how I’m doing and whether I’m experiencing debilitating side effects. I tell her, I’m fine but do have to get up to go to the loo a couple of times a night and no longer pee with the intensity of Niagara Falls. But hey if this is what it takes to eject the Unwelcome Guest, then call me satisfied. Maggie is content with my progress, so Mrs Preen and I amble back to the waiting room to discover there’s going to be a lot of it, waiting that is.

With the Tomotherapy machine on the blink, we sit expectantly for the engineer to arrive from Guy’s to jack it up and give the thing a new set of points and plugs. News starts to filter through: The engineer is on his way (hurray!), but he’s stuck in traffic (Nooo!) and then I see a bloke who might be the engineer, though to be fair he looks more like an electrician. Are you the engineer? I ask, no I’m an electrician he says and shows me his mulitmeter.

I turn to Orla, a chatty Irish colleen and ace radiographer, who explains the RT machine detests being powered down completely, but a mains outage has done just that. The machine is furious and will not tolerate being treated in this cavalier manner. Questions circulate: Has the electrician got his little pack of fuse wire with him? Has anyone used fuse wire since the 1970s? So many questions but still no engineer.

We hear a faint rumbling noise: Power is restored! But the machine is still in a strop. Bits of equipment are trundled by and then suddenly a man with a laptop computer appears. It’s the engineer, he is amongst us. Tenderly, he brings the machine’s system back up, it is placated and consents to start lasering the waiting patients, who have been waiting patiently.

Finally it’s my turn, I’m irradiated fit to bust and I’m on my way out at just after one o’clock. This is the first road block in an otherwise seamless treatment schedule. And now I get the weekend off and maybe a couple of glasses of wine to boot. Life is sweet.

Radio Days (6): Radio Regime

The picture shows the writer about to be posted into the doughnut of doom for his daily dose of Tomotherapy at St Thom’s in London.

I thought a blog describing the process I’m go through every day during my radiotherapy treatment might be of interest to three different audiences:

  1. Those who are about to undergo it and don’t know what to expect
  2. Me, for when I’ve forgotten all about it six months down the track
  3. The idly curious and medical procedure fanatics

I attend the hospital about an hour ahead of my appointment and pop my list of appointments into a plastic holder just outside the treatment room where they are retrieved by one of the team. With my bowels flushed either naturally or chemically, I sit waiting until a radiographer tells me to ‘start drinking’.

Hopping nimbly to the water fountain I fill up a jug with the requisite 350ml and drink thirstily. There is now a gap of about 45 minutes while the water makes its inexorable journey to my bladder swelling the prostate into a target that can’t be missed.

Times up and I’m told to get changed into the fetching gown you can see in the picture. I sit outside the room where the RT machine lurks making small talk with the team until the previous patient is done and dusted.

The change-over is generally quick and I go in. The bed is adjusted to my height and I lie down on a small blue mat which they use to hoick me into position. Every day, at this point I’m asked for my date of birth and the first line of my address. I’m considering having this tattooed on my chest.

With Jim positioned correctly, a button is hit and I glide into the machine’s embrace. First, they scan my prostate to check for empty bowels and full bladder. There is a thunk of compressed air, nothing to do with me, and the scanning process gets under way. Once complete the table slides out and I wait while (I assume) they check they are happy for the treatment to go ahead. If all is well I slide back into the doughnut, there is a rattling sound and their ray guns let loose on my unsuspecting prostate. THIS DOES NOT HURT.

During treatment, there is a constant high frequency rushing sound combined with a rattle that I’ve described before as a wheelie suitcase being dragged across cobbles. I like to imagine it’s me going on holiday.

Treatment complete, the noise stops, and I glide out and jump off the table. Taken together, the scan and treatment take just over ten minutes.

I’m given back my appointments sheet, occasionally times change, after that I wave goodbye to my trusty band of radio-ladies (all female team today) and make my way to the Boris Bike stand and cycle away, ready for another day.

Tomorrow I have a Treatment Review which will also see Mrs Preen in attendance. This is not to see whether the treatment is working but rather to discuss any side-effects I might be facing. None so far, so it might be a short conversation.


Fit for the course

Getting to the radiotherapy suite at St Thomas’ Hospital is easier if you enter by the car park and go in through a scummy lower ground floor entrance. Walking in, as I’m doing every day now, I pass a long line of smokers, probably mostly doctors. It looks like they’re queuing for a hospital they’ll need in about thirty or forty years. As the writer Kurt Vonnegut Jnr said: ‘Cigarettes are a classy way to commit suicide’.

All of which got me thinking about health. Prostate cancer is the first serious illness I’ve ever had and here’s the weird thing, so far it doesn’t demonstrate symptoms. OK, so I get some side effects from the hormone therapy and I feel achy at times, but that’s probably because I’m 64.

When I was first diagnosed a doctor friend said the best thing I could do was to keep fit and healthy and leave the rest up to the docs. In the year since my diagnosis, I’ve continued to work a full-time job, tried to eat right, go to the gym around three times a week and because we own a dog and not a car I get plenty of incidental exercise. Rusty insists on it. I have a suspicion that the exercise does as much for my head as my body.

While having radiotherapy I’m restricting myself to one cup of coffee and tea a day and no alcohol except on Fridays and Saturdays. But hey, we all make mistakes. Last night, I thought it would be a great idea to go to a jazz club and didn’t roll home till after midnight. Feeling a little tired today. And in case you’re wondering it is possible not to drink alcohol at a jazz club, though there are some states in the US where that’s illegal.

The Seattle Cancer Care Alliance has some excellent advice on diet and exercise.

Facebook Groups

I’ve recently joined two Facebook prostate cancer support groups. One is based in the US, the other in the UK. The members may be thousands of miles apart but often the posts are remarkably similar. There’s mordant dark humour, some despair, but good news too when the right test results come through. Inevitably people are very frightened when they are first diagnosed, I certainly was, hopefully these groups can provide not only information, but comfort too.

Advise is sought and given, but of course we’re not medical professionals; just people telling their stories and offering advice. As I’ve found while chatting with other patients, my story and my treatment differs radically from many others.

These are a broad generalisations, but people posting on the US group seem to question their treatment more frequently and are constantly in search of alternatives. Inevitably some are concerned about the cost of their treatment. Brits are anxious about the cost of hospital parking and tell their stories, in a funny, but sometimes heart-breaking way. There are many supportive wives and partners on board too, and thank goodness for that.

You’ll see from the picture above that I got some new medical supplies today. Suppose it must be some kind of Norwegian health food.


 

Radio Days (5): Motion

Apologies, but once again this blog is heading straight to the toilet. In fact thinking about it, it’s probably best read with the Benny Hill theme tune playing in the background. Not familiar with Benny Hill or his theme? Then click here.

If you’ve read the previous story, Radio Days (4), then you’ll know that when placed into the radiotherapy doughnut, one’s bowels must be empty and one’s bladder must be tightly packed with 350ml of water. I gather the amount of water varies from patient to patient.

Rafiq, my go-to radiographer, told me that to help this process I should self-administer an enema at home prior to visiting the hospital. I’ve done this before during my treatment and they always seemed to take forever to work. So I decided to, for want of a better phrase, shove it where the sun don’t shine, and then bicycle to the hospital, which is only 15 minutes away.

I’m about 10 minutes into the ride when it becomes immediately apparent, that this enema is one of the quick acting kind, and I need to go to the bathroom now, right now, or preferably sooner. I’m Desperate Dan.

Being past the halfway mark it’s too late to turn back, so the only option is to ride like the clappers to St Thomas’. To pedestrians and drivers my Boris Bike becomes a blur, I’m in motion. I overtake a number 77 bus and veer in front of a taxi and get screamed for my trouble. Desperate times call for desperate measures. Plunging the bike into its stand, with my pants still unsoiled, I charge headlong into a hospital toilet and make it in the nick of time. You can stop playing the Benny Hill theme tune now.

Catching my breath in the waiting room prior to my treatment, I chatted with fellow patients who have Unwelcome Guests of their own. Both the presence of cancer and its treatment affects people in many ways. One fellow sufferer was clearly on edge and nervous, blurting out all his feelings to me, a complete stranger. Suddenly realising this might be inappropriate, he apologised. Of course I’m only too happy to chat and said so.

Like me, he’s on hormone therapy, though his course is a great deal shorter than mine. Inevitably we talked side-effects and he claims it’s impaired his thinking as he constantly forgets things. This is a side-effect I wasn’t aware of, and I’m pretty sure my brain is no more scrambled that it was a year ago when I started out on the hormone rollercoaster.

We all have to drink between two and three litres of water a day to help maintain the healthy tissue that might suffer a radiotherapy blast. This causes some complaining, with one older gentleman saying that drinking so much water is making him feel ill. I’m no doctor but I’m guessing the combo of cancer, hormone and radio therapy is more likely to make you feel rubbish than guzzling a drop of H2O. He did moan a lot, perhaps his wife is waterboarding him.

Treatment three complete and as I’m leaving Rafiq and Hodma tell me I won’t be seeing them again as Hodma is having time off and Rafiq is moving back to Guy’s Cancer Centre. Rafiq is a football fanatic, supports Liverpool, but is a steward at Stamford Bridge where he keeps Chelsea fans and their visitors apart. He’s a bit worried about their next fixture, the Cardiff game. I’ll miss both of them.

So far, no apparent side-effects for me from the radiotherapy, but watch this space.


 

Radio Days (4): First Blast

After having your breakfast, in my case coffee along with muesli topped with blueberries and yoghurt, what’s the question you’d least like to be asked? Well I suppose there are many possibilities but ‘Do you need an enema?’ has to be right up there. But that’s Rafiq for you, a no-nonsense radiographer at St Thomas’ Hospital, who doesn’t mince his words. He requires a Preen with no excrement in his bowels and that’s what he’s going to get.

It’s 830am and I’m at St Thomas’ Hospital, accompanied by Mrs Preen, and ready for my first blast of radiotherapy. For the treatment to be effective an empty bowel and a full bladder is required as this gets the prostate gland into the right position and apparently helps reduce side-effects.

Cancer doesn’t lend itself to whimsy, but I’ve been thinking about the Unwelcome Guest who’s been getting a good kicking from the hormone therapy treatment I’ve been enduring for almost a year. Now the little bastard is about to get an agricultural blast of the finest NHS Tomotherapy. ‘What fresh hell is this?’ I imagine the Guest thinking, hopefully giving him all the encouragement he needs to check out.

But enough of such whimsicality this is a serious day. You can sort of tell it’s serious because there is free chocolate everywhere. The cash strapped NHS doesn’t generally hand out treats to its patients, so I assume the deluge of Cadbury’s comes from some kindly charity.

Breaking news: no enema is required so I’m taken to sit with a bunch of old boys who are also waiting to be treated. I’m given 350ml’s of water to drink to swell my prostate to an appropriate size.

Forty-five minutes later Rafiq appears and leads me through to a changing room where I don a hospital gown. Helen and Hanna, also part of the radiography team, then show me into the treatment room where I’m confronted by the Doughnut of Doom or the Tomotherapy device as it’s more commonly known.

If you’ve read Radio Days (2) you will know I underwent a trial run, which involved me getting inked with three tattoos to enable the team to line me up correctly on the table. This process involves lasers focussing on the tattoo crosses and ensures the radio-beams are fired at the Guest and don’t damage too much healthy tissue.

Preen placement is achieved quickly with Helen telling me that first they scan my prostate to check my bowels are sufficiently void and my bladder sufficiently bloated and then, if all is well, the treatment begins.

So I’m lying there in the heart of the doughnut, I guess I’m the jam, keeping as still as I can with my hands folded across my chest. Thankfully bowels and bladder are in peak condition, so the treatment goes ahead with the whole process taking no more than 12 minutes.

The room is quite cold, presumably to keep both the machine and patient cool and unlike the MRI scanner, this one is mercifully quiet. There is a kind of high frequency rushing sound combined with a gentle knocking that reminded me of a wheelie suitcase being dragged across an uneven pavement.

The treatment causes no pain, but some side-effects may follow, with tiredness being the most likely. I’m out the door by 9.45.

This was ray-day one and I’m now to undergo a further 38 of these treatments every weekday until 7th November. I’m quite interested to see how I progress and whether side-effects do manifest themselves. You’ll be hearing from me.


 

Radio Days (3): It all kicks off tomorrow

My course of radiotherapy starts tomorrow, and I can’t deny I’m approaching it with a degree of trepidation. My birthday falls right at the beginning of September and kind friends and family have made the celebrations to mark my 64th trip around the sun last a full week, but these must now draw to a close.

My treatment takes place at St Thomas’ Hospital which was unexpected as all my previous consultations, scans and tests have been at Guy’s.

Coincidentally, we have a family friend who is a senior medic at St Thomas’ and she has given me two excellent pieces of advice which I’ll do my best to follow.

First up, I am being treated by the NHS and as marvellous as it is, there will inevitably be delays and days when I’m kept waiting around, perhaps for hours. Her advice: Accept this as an inevitability, take a book and don’t stress. I’m continuing working while being treated but making meetings on time or making meetings at all could be tricky.

It’s likely I will get side-effects from the treatment, some of which may be unpleasant, but all being well these will be temporary. Her advice: Acknowledge this and take it in your stride; it won’t last forever.

Years ago, I was a journalist and inevitably got into some scrapes; postings in Sarajevo, Mogadishu and DR Congo spring to mind. I was never remotely brave but if I knew we were going on a potentially dangerous assignment I always wanted to get on with it so as to leave it behind as soon as possible. Rather what I’m feeling right now; let’s do this thing.


A blog well worth looking at is Dan’s Journey Through Prostate Cancer. He was diagnosed in November 2010 and has kept a very informative an enquiring blog ever since. His writing is now a fantastic resource which contains a huge amount of technical and informative information.

Taken almost at random here he is on relationships:

When you tell someone that you have cancer, be ready for the relationship to change, most often in a direction that you didn’t anticipate. Some of those closest to me couldn’t handle the news and were the ones I could least depend on for emotional support, while some who were mere acquaintances prior to the diagnosis became my rocks.

I learned that I had to be the strong one in the relationship, even when I didn’t necessarily want to be. I also learned that I had to set the tone on how and when to talk about–shhhh–cancer. My approach was to talk about it openly, honestly, and with humor. I had to make fun of this somehow. 


 

Radio Days (2): Prostate mapping and other larks

An eight-week course of radiotherapy, to treat my prostate cancer, starts soon. So, in preparation I spent most of yesterday at Guy’s Cancer Centre being scanned, measured and probed by a series of large, impressive machines. The one you see above is a General Electric CT scanner. The machinery was operated by a bunch of brisk, caring NHS staff.

Before the radiotherapy starts the docs need to have my prostate mapped so they know where to shoot their rays. They aim to target just my prostate, currently home to the Unwelcome Guest, and leave the healthy tissue alone. Having said that if all goes well, when they hit the cancer it should die, whereas the healthy tissue should regenerate.

The CT scanner does the mapping, but it needs help. That involves my bowels being empty and my bladder being full of water – 350ml to be exact. A cannula was jabbed into my arm, so they could fire dye into my blood stream which apparently makes the prostate and attendant lymph nodes glow in the dark. The technicians also have to fix my position, so it can be replicated while I’m under the gadget that dishes out the radio beams. To help them achieve this I’m now the proud owner of three tattoo crosses which will help them line me up. This seems either charmingly low-tech or alarmingly unscientific depending on your view of such things.

So, I’m lying there, the machinery is whizzing, and all seems to be going well until suddenly it grinds to a halt. The machine, a stickler for such things, has deemed that my bowels are not sufficiently evacuated so I’m sent to the loo with a flea in my ear and an enema to stuff up my arse. What women say about childbirth is equally true here, you check your dignity at the door.

While nature takes its course, I read my book and drink yet another 350ml of water. This all takes around an hour, but this time my bowels are deemed to be in peak condition and the scan gets underway and lasts just a few minutes. I’m not shown the results, but I’m reliably informed the docs now have access to an ordinance survey map of my prostate.

Next up is an MRI scan which is part of a trial I’ve agreed to and is not a feature of current radiotherapy treatment. The trial is an attempt to harness the imaging of both the CT and MRI scans to improve the accuracy of the ray guns which target the luckless prostate. Apparently, a lot of maths is involved, so I think I’ll leave that to them.

MRI scanners and I have form and let me say right away I’m not a fan. My first MRI took place in the 90s to determine whether I had a prolapsed disc in my back – I did. Then around nine months ago I had another scan to check the size and general ugliness of the Unwelcome Guest. It was 10mm’s ugly.

This latest instalment was no better. You are stuck in a tube and as mentioned in a previous blog, the sound the machine makes is the equivalent of living next door to a heavy metal band. Every tune is in a relentless, thunderous 4/4 time signature. No waltz time for this baby. Despite wearing headphones to muffle the racket, after 45 minutes I’ve definitely had my fill.

The staff are grateful for my participation and I’m grateful to be gone. As I leave I’m handed my radiotherapy schedule. The fun starts at 8.30 on 12th September and grinds to a halt on 7th November. I will be reporting on my progress, so join me if you feel inclined, as Jim’s cancer capers continue.