48. Radiotherapy, part 14

Additional Effect #8

Tooth Decay

One of the prime targets for the RT was my Parotid Glands ( Saliva Glands ) the right gland was a location of one of the tumors. The RT has all but completely destroyed both Saliva Glands rendering them almost entirely useless. They now only make a fraction of the saliva they used to, it's a different consistency now, thick and sticky. Saliva is one of your first defenses against tooth decay.

Also, I couldn't brush my teeth for quite a while due the ulcers, and when I could finally take food again orally it is the fortified, milkshake, style, supplements, and they are chock full of sugar.

From the outset I have been under the care of Dr Mary Burke in the Sedation and Special Care Unit at Guy's Hospital, the special dentistry department. I have to use special tooth paste now after every feed. My last check up showed no significant decay, Phew ! and I have now been discharged from their care.

As a foot note the RT has also 'changed' the very nature of my jaw's ability to heal, any 'below' the gum dental work will from now on have to be performed by a specially trained oncology savvy dentist, in a Sedation and Special Care Dentistry Unit.

47. Radiotherapy, part 13

Additional Effect #7

Weight Loss

Over the course of the six to nine months covering the last few weeks of RT and onward I would lose 33 lb. in weight. That's almost 15 kg or 2 Stone, near exactly 20% of my body weight. Almost half of which was in muscle mass. The upshot of which was extreme weakness, constant fatigue and energy loss.

My nearest "corner" shop is not even 100m away, if I went out for milk by the time I got to their door I would be exhausted.

My GP's surgery is only about 200-300m in the opposite direction, to get there I would have to stop a couple of times to catch my breath.

Three years ago I could manage 20-30 pull-ups without too much difficulty, today I'm pushed to do 4 or 5.

I have a dietitian, Jo Jefford, I see her every six weeks at the Beckanham Beacon Hospital. Her concern is weight gain ( not Loss ) and nutrition. I'm just about at my optimum self imposed target weight now, I just need to rebuild some muscle strength. She has now discharged me from her care. Jo has asked me to attend their next Head & Neck Support Group for "new survivors" ( just 3 months or so in recovery ) to talk to them about my experiences and strategies for eating etc.

One particularly low point was one night in July 2012. I'm at my lowest weight ever, just 7 stone 8 pounds. I've had a feed or painkillers I don't remember, and cleaned and serviced the PEG tube. Unusually I was stripped to the waist, I had been wearing a vest almost constantly by then. I see my self in the full length mirror. I don't recognize the thing that is looking back at me. There is this gaunt, withered, emaciated, sorry looking, creature, we stared at each other for a couple of minutes, I fell sorry for it, it looks so pathetic just standing there looking at me and crying like that. I'm crying now just thinking about it.

What ever it was It's gone now, I hope I never see it again.

46. Radiotherapy, part 12

Additional Effect #6

Snot fun

The inside of my nose is extremely unhappy with all that has been going on. Every time I wake one nostril or the other is blocked. Blowing my nose is quite, quite painful. I often find both old dried and fresh wet blood in the tissue.

Twice I found one nostril was totally blocked right up to the very opening. So much so that there was an obvious "plug" in the end that no amount of blowing would shift. I had to resort to gripping the end of the blockage with the tips of my thumb and fore finger and pull it out. Out would slide a single bogie as thick and as long as my little finger, and exactly the shape of the inside of that nostril. The far end of which was wet and bloody. Imagine a green Blancmange draft excluder.

45. Radiotherapy, part 11

Additional Effect #5

Phlegm & Mucus

I can't swallow and the linings of my throat, sinuses and nose are 'very' unhappy. So there is a vast build up of phlegm, mucus and "snot" and it all has to go some were...

The worse problem comes from lying down, sitting or standing up it doesn't seem to affect me I suspect that it all is slowly creeping down my throat and i'll be throwing that up later. Its laying down that's the big problem. It all collects in the back of my throat and immediately on transitioning from prone to upright moved backwards and downwards and causes me to retch and vomit. That in it's self is excruciating despite of the painkillers.

I sleep with a spittoon next to my bed (and have one in the living room next to the sofa), I'm getting up every two hours for drugs and there is only a one or two second window to voluntary hack the gunk up before its gone too far down of its own accord and causes the involuntary retching. I have learnt from bitter experience that it is far better to mentally prepare my self "to gird my loins" and to voluntary hack up in two or three goes all the crap at one time to get it over and done with, then immediately take a hit of morphine.

I have my RT sessions with a spittoon sitting on my chest, when I'm de-clamped and the shell is removed it's my first priority, I don't envy the radiographers having to witness this ever session. Then again you should see some of the other poor sods that they are treating, my problems pale in insignificance compared to some of them.

I have also taken to traveling with a couple of spittoons at the ready, and a bundle of paper towels. Many times on the train reaching my station I have had to dive out of the carriage to hack up on the platform. Not pleasant for me, or the other passengers.

44. Radiotherapy, part 10

Additional Effect #4

Mouth Ulcers

We have all had (probably) from time to time a mouth ulcer or two. So in the overall scheme of things, and compared to everything else this would seem pretty trivial. I don't know about you but i've 'never' had ulcers like this.

There's a scattering of ulcers below my bottom lip, that then cluster at the corners of my mouth. They then run the entire length of the inside of my cheeks in a continuous row as wide as my index finger, from there to the back teeth, where they cluster again in two big groups around the molars and the base of my tongue. They are all the size of button mushrooms.

The slightest movement of my tongue or jaw rubs my teeth against the ulcers. It's a constant irritant and any movement of the mouth makes me wince and groan, and that's with being dosed up on Co-codamol and Morphine. I shudder to think what it would be like without.

Brushing my teeth is physically impossible. For weeks my only oral hygiene option was regular rinsing with salt water then Hydrogen Peroxide and trying to us cotton buds instead of a tooth brush. After the first couple of weeks my breath was "rank".

The inside of my mouth would remain like this during the last few weeks of RT and for quite a few weeks afterwards. A couple of months if not more in total.

43. Radiotherapy, part 9

Additional Effect #3

Hair loss

I had trimmed my beard to a little over a quarter of an inch to aid in a snug fit for the shell.

One day I looked down to the black jumper I was wearing and thought "I don't have dandruff" it was half my beard, It had just died, dried up and drifted down onto my chest like a miniature snow fall.

Apparently I also lost the downy hair at the nape of my neck, I'm reliably informed that that has returned.

Hair loss wise I got off fairly lightly. I miss my beard & moustache but there are still follicles there and where the area immediately under my chin was totally bald some stubble now grows, who knows what the future might hold ?

42. Radiotherapy, part 8

Additional Effect #2

Throat

For a while I couldn't swallow anything, not even my own saliva. When I did it made me wince and groan. So everything was going in via the PEG tube. Eventually I was even completely unable to talk, having to communicate just with hand gestures and scribbled notes.

Imagine being me, now imagine being me and unable to talk, now imagine being me trapped alone inside my own head, no it's not fun is it ?.

I was mute for a quite a few weeks. There are a couple of very significant social and psychological outcomes to that. I wasn't fun to be with, need I say more... I made Jo cry and walk out on me once, and couldn't call after her, explain my problem or even apologize. I still feel rotten about that, and I'll say this too, for a trained actor she's rubbish at Charades.

41. Radiotherapy, part 7

To call the effects of Radiotherapy "Side Effects" is to do them a great disservice

As expected over the coming weeks the effects of the radiation would become more and more noticeable, and more and more severe.

Additional Effect #1

Skin

The skin on my neck, chin, cheeks, ears, throat and shoulders would turn pink then red and sore like sunburn. Eventually drying, turning brown, crisping and flaking off. At it's most extreme there were even large areas of broken skin, lesions that were raw and then scabbed over. I would wake in piles of dandruff-like skin dust and gossamer ghosts of my chin or ears or throat lying on the pillow.

                  

These pictures were taken on the 9th and 10th April 2012 the last two in the 13th. It got much worse...

much, much worse.

40. PEG feeding

A very nice lady from Homeward came to visit, bringing my Infinity feeding pump, stand and accessories, and showed Jo and I how to use then.

Within fifteen minutes we are both confident with it's operation and she is happy to bid us farewell. There's instruction manuals, a quick guide, phone numbers and help lines so every eventuality is covered.

I have half a dozen 1.5 litre feeding bags, with regular deliveries scheduled for as long as I need them. The bags hang from a plastic stand that's about waist height and run into the auto pump, and a long tube is coupled from the pump to the PEG tube in the tummy.

The Infinity Pump

The dark purple loop fits into the pump

Once programmed and 'on' you can go about your daily business uninterrupted. It's even possible to pause mid feed which is essential as it takes a 1.5 L bag at least eight hours to empty. Most people run their's over night, not me.

I don't know what it is made of but the stuff in the bag looks like gravy and by the time I've got 1.5L of it in me I'm full. The slightest bit of "wind" brings a bitter, acrid, sulphurous taste to the mouth.

I finish a feed and a little later go to bed, burp, and have to run to the bathroom to throw up 1.5 L of this vile liquid. That in itself takes a minute or so and a good half a dozen or more convolutions and retches. All this of course while my throat is so sore, raw and tender that I don't even swallow my own saliva and am on a constant regime of Co-codamol and Morphine, it's excruciating and exhausting.

This happens three times in the first week. I decide to manually inject the Nutria "milkshakes" through the PEG. That was always an option, it has to be done 8 times a day, but is far more acceptable than the alternative.

The "milk shakes" have the usual variety of flavors, I drink them now with no difficulty. All the flavors are slightly wrong. Banana-ish-flavored-milkshake-style-drink-substitute. The "forest fruit" ( milkshake-style-drink-substitute ) is very 'sour' and I have no idea what the chocolate flavor ( milkshake-style-drink-substitute ) tastes of except to say it sure as hell isn't chocolate.

Having said all that, it's kept me alive, and the delivery man as a matter of course brings the crates in and carries them up the stairs to my flat for me.

Eventually "Tubie" is being used for all intake, feeding Hydration and pain management. It requires "flushing" with inert water (boiled then cooled) before and after every use, this also takes care of hydration.

"Tubie" cleaning and maintenance 

Once a week the "wound" needs to be cleaned and Tubie "reset". This involves unclamping it from the tummy, pushing 2 cm of tube into the belly, rotating the tube 360˚ then pulling the tube back out until its internal "washer" is flush to the inside of the gut. Sometimes it stuck to the inside of the gut wall and the outside length of tube would rotate 180˚ - 270˚ before the inside would release its grip and spin around to catch up, that always made me shudder.

A couple of strips of tape stop "Tubie" from unceremoniously dangling where it ort not. 

39. Radiotherapy, part 6

Friday 2nd March 2012 10:20 AM

Electra 5, Radiotherapy, Guy's Hospital, London

Exposure #4

Easy in, easy out, done ! 

The waiting game, exposures 4 - 30

At this stage RT was all about the waiting. My shortest wait was half an hour to 45 minutes. Most waits were an hour or two. The longest wait was well over three hours almost four. A couple of times after having been waiting for a couple of hours I was sent home having later that week to have two exposures in one day to catch up, one in the morning, going home, then coming back for one in the afternoon. Only two or three times was the wait less than half an hour.

And as I said the waiting room is hateful. On being informed the there would be a two hour wait i would often go and mooch around the hospital corridors for an hour or so.

Why all the waiting you might ask. At no point were both Electra 5 and 6 working at the same time, well hardly ever anyway. I think they are made from reject Xerox parts.

Six weeks and this will all be over... Wrong !

38. Radiotherapy, part 5

Thursday 1st March 2012 04:25 AM

Electra 5, Raidotheripy, Guy's Hospital, London

Exposure #3

Bang on Target...

Alignment takes only a few minutes and is bang on target. Everyone is happy. I even have music playing in the background.

After watching "The Hulk" I can't help wondering what my super powers will be ?

Easy, just 27 more exposure to go and I'm all done...

NOT !

37. Radiotherapy, part 4

Tuesday 28th February 2012 08:55 AM

Electra 6, Radiotherapy, Guy's Hospital, London

Exposure #2

exactly the same again, almost...

But this time after three attempts they just can't get "on target" in fact I'm even further adrift. And they are perplexed, the reason is obvious to me, both my tumors have shrunk and i've lost a lot of weight so naturally my throat, neck, chin and cheeks are thinner.

RT is now starting to feel a little too familiar "do you expect me to talk?"

I'm sent back to St Thomas Hospital to see Julian who made the shell almost a month ago. Julian clamps me to his Electra table, He's perfectly happy with the shell fit but changes one of the shims that I rest my head on, pressing my face tighter into the mask.

Next door I am rescanned with the adjustment. It would take a few more days to realign all the topographical data and we could resume RT with exposure #3.

Easy... ish

36. Radiotherapy, part 3

Monday 27th February 2012 09:00 AM

Dimbleby Cancer Care Unit, Guy's Hospital, London

The actual very last and final session of Chemo, next stop RT.

One last "squirt" of Chemo

03:15 PM

Electra 6, Raidotheripy, Guy's Hospital, London

Exposure #1

Pretty much as advertised...

I arrive about 20 minutes early and have to wait for about an hour and a half for my session, in a stifling, subterranean waiting room. There are forty or so seats most are plain looking green vinyl arm chairs, although about half a dozen of them are gray and high backed. The green ones are quite deceptive they look OK but after sitting in one for fifteen minutes you come to realize that they have been very badly designed with a rod running across the middle of the back, just below your shoulder blades and barely padded at all. In future i'll aim for the comfy gray high back chairs (easier said than done there's so few of them). The heat is so unbearable that from now on I would always would wear a light vest that I can strip down to.

After the long, hot, uncomfortable wait, they finally call me in, I strip to the waist and hop up onto the table of Electra 5 and the two radiographers set to work. There's feet rests, waist clamps, shoulder clamps, hand grips all that have to be set to predetermined positions. Then the head shell is put on and clamped down. I'm immobilized with my eyes shut and and listen to the pitter-patter of feet receding and the door closing.

The RT Dept missed a trick by not playing the Joe 90 theme as they start the machine

Electra 6, clicks and ticks, and whirrs and grinds, and hums and shudders, then silence. The sound of the door opening, the pitter-patter of feet advancing. There's a "targeting issue" the RT beam has a tolerance of about 3.5 mm and we are right on the limit.

I'm unclamped, reclaimed and realigned. What I get to hear is the two Radiographers reeling off lists of numbers, cranking handles and comforting positions. 37 in, check, 37 in, 93 long, check, 93 long, 42 in, hang on, yes 42 in, check, anon. Eventually they seem happy and off they go again.

A minute later they are back, not happy, still not "exactly on target" and there are things in my head and neck that they don't want to shoot if they can possibly avoid it. I'm thinking "yes try not to fry my brain, it's my second favorite organ".

A phone call to Teresa Guerrero Urbano and they are all happy again, the edge of the tolerance envelope is OK but no further.

The shell was so snug it caused lizard skin 

This is exactly what happens to my thighs when I wear fishnet stockings

25 minutes later we are all done. I'm putting my shirt back on and off home.

Easy... ish.

35. Radiotherapy, part 2

I am scheduled for 30 sessions of Radiotherapy ( RT ) at Guy's Hospital. One a day, five days a week, for six weeks. Each lasting for about half an hour.

I have a pre-RT consultation, explaining what to expect both during the treatment and in way of side effects. After the trauma of the "Adult" Tonsillectomy I didn't think it would be too bad... "idiot !"

Two giant copper leafs stand centennial over the entrance to the Radiothereipy Department

The Green mile

Week one - two

The effect should be quite mild. There will be no sensation during the treatment and no after effects for the first week or so, with the possibility of mild redness and slight soreness developing around week two.

Week two - three

Might see redness of the neck and a sore throat start to increase.

Week three - four

I could expect my neck and throat to become noticeably sore, enough that medication in the way of painkillers would be made available should I need it.

Week five - six

Would see all the effects of the RT increase in severity to the point that it would become so very uncomfortable and that I would almost certainly need pain killers and be using the PEG tube for feeding.

At the end of the RT there would be a period of two to three weeks possibly more of "over cooking" where all the effects would continue to increase in severity.

After the eight or nine weeks of "over cooking" there would be almost as much "cooling down", while everything settled back down to a reasonable and manageable level of comfort/discomfort, normality...

So RT start to finish would take, for me, somewhere around three or four months.

An Elekta Synergy System Machine, ( 'not' from Guy's but almost identical ) 

RT orientation included a tour of the facilities and a visit to see Electra 5 and 6 the two machines that would be doing the deed. As I returned to the waiting room I enthusiastically called out to Jo "there's been a terrible mistake, they say I haven't really got cancer and I could go away and live on an island somewhere" wishful thinking on my part, but it seemed to go down well with the audience, wishful thinking for all of us.

That's me done for the day

34. Back on the Blog

At the end of Chapter 33 I wrote...  "This is part, of the start, of the end..."

I WAS NOT EVEN CLOSE

Up to now all my posts have been pretty much "as it happened" That was before Raidotheripy and all the pain killers and everything else that goes with it.

I was for many months both physically and physiologically completely unable to even contemplate this level of communication. It has taken me over six months to gather my wits, collect and martial my thoughts, and to trawl through the darkness or time to convey my experiences about what the radiotherapy and its subsequent effects has done to me.

It was for me a very dark time, one that I would not wish on my worst enemy, and one that I suspect will haunt me to the grave.

From here on my blog will be very much "as remembered" through a cloud of drugs and the mists of time. Until I have caught up with myself.

so bear with me...