I posted a short message to friends and family on 14.08.2013, outlining my journey into the unknown after being diagnosed with cancer. After the first three posts, people reacted positively to the content, and asked why I hadn’t turned them into a blog. Hindsight (and WordPress) is a wonderful tool so, better late than never, here are the posts to date…
Just a quick précis in first instance. As you know, I was told about my cancer on the 1st August. Since then, I’ve gone from shit scared to donning a practical hat (it’s actually the hard from my project management days, but serves its purpose well). Anyway, during initial neck dissection surgery they removed two lumps – one was harmless, one not, and this was the secondary location for the cancer. The following MRI, CT and PET Scans show the cancer just in the neck location, nowhere else – this is a huge relief. After Pan-endoscopy surgery (those biopsies were not pleasant), the now-identified primary location is at the base of tongue. Initial treatment is 6 weeks of radiotherapy, possibly with added chemo, then a scan to check. This is likely to start end-Sept and continue until mid-Nov. The Senior Consultant predicts a 75% success rate. Compared to where my mind has gone over the past few weeks I’ll happily take those odds.
I’m not remotely keen on the mobile camera squirreling up my nostrils, but you should see the picture quality: I was always curious to see the back of my throat on a big HDTV (not). Also, the amount of Cannulas I’ve had installed (along with the blood tests) is remarkable considering my aversion to needles (the secret is not to watch what’s going on).
I know it’s a cheesy cliché, but this is the beginning of my journey: the information I’ve received (and there is a phenomenal amount to devour in the early stages) has been matter of fact, to the point, and the tone of voice is very comforting. Two immediate things come to mind: Macmillan Nurses are absolute stars, and I will never have a pop at the NHS again…
Next steps will be a fitting for the purpose-made mask covering my head and shoulders (perforated for the dandruff, I assume). This will be used to keep me pinned down to the treatment bench whilst I’m being zapped. This will be followed by more surgery to have a PEG tube installed in the stomach for feeding purposes during the ‘sore’ period (there was no pussyfooting: I was told that I would have the worst sore throat ever, and eating will be restricted). Treatment should start straight after this. In the meantime, I’ve been told to eat lots to keep my weight up: my Oncologist said don’t worry about what, just get lots of it in you. That sounds like a challenge!
Wish me luck…
PS. The mask fitting was a unique experience: what feels like a 12″x12″ gauze-like material is taken out of a warm bath (not an actual bath, more of a chip fryer), and placed on your face whilst you’re lying on the treatment slab. It is then stretched and pulled into four corners, moulding itself to your head and shoulders. They talk you through what is happening during the entire process , and it didn’t feel at all claustrophobic. After 15 minutes its dry and, hey presto, see image below.
PEG (Percutaneous endoscopic gastronomy) is a procedure that allows nutritional support for patients who cannot take food orally. The surgery involved placement of a tube through my abdominal wall and into the stomach through which nutritional liquids and drugs can be infused. The procedure is done whilst you’re awake – I wasn’t remotely comfortable about this, but tried to remained calm. Suffice to say, I was pleased when it was over. Staying in hospital overnight involved a lot of morphine painkillers to help aid sleep (I never got any).
A few images – first one is Scarface (well, Scarneck in reality):
The Mask of Doom:
The PEG tube – sensitive souls, look away now…
Second post – 02.10.13
I’ve had a few requests for an update, and to prove that I haven’t gone completely underground, here’s where we are:
Today I reached the half-way point in my treatment – 15 x radiotherapy, 3 x chemotherapy sessions. Yes, I am Radioactive Man. It’s downhill all the way, both in terms of sessions and discomfort. Each radio treatment lasts around 10 minutes: I’ve timed it by singing favourite songs to myself during the zapping (ideal for the lover of 10-minute progressive rock tunes). I’ve learned to use the rhythm of the machine as a soundtrack – it’s pretty cool. The chemo takes longer – around 3-4 hours a session – in what feels like an old people’s home (with no disrespect to old people, honest). Moving around a cramped environment with a drip on castors is plain weird: I don’t think it’ll ever be an Olympic sport. The sandwiches are nothing to write home about either (okay, I promise, that’s the LAST pop at the NHS). Big tip: if you’re ever in this situation, take headphones and your music player of choice, otherwise daytime TV will rot your brain rapidly. However, the nursing staff at Lincoln Oncology are just fantastic, and as empathetic as you could wish for: this really does help in getting you through the process.
Good news is, most of my luscious golden locks remain (stop sniggering at the back): however, my beard is falling out. Quite bizarre to see bristles just fall off my face and disappear down the plughole without a razor involved.
I can just about swallow liquids, so its water; thin, bland soups (certainly not tomato); plain yoghurts and vitamin/protein/calorie-laden drink all the way. Citrus flavours are a no-no. I now push drugs into my tummy via the inserted PEG tube as they’re too stringent to swallow. There is a soluble aspirin mix which helps a bit with the sore throat: I went through a lot of options trying to find something that gave a level of pain relief.
The PEG installation is no longer infected (it was for a week), so at least I’ve stopped smelling of poo 24/7. It really was unpleasant – ask Liz. The mouth is ulcerated, the neck is red raw and the throat has been fitted with extra sharp razor blades for my inconvenience and discomfort. After about five RT sessions, I couldn’t really taste anything bar one of the ‘Cappuccino’ energy drinks, which resembles (to me) a Starbucks Mocha Frappuccino. However, my sense of smell remains, which is incredibly frustrating when something cooking in the kitchen has the most wonderful aroma, but you can’t eat it (and you couldn’t taste it anyway).
In spite of all this, and my periodic dark moods, it’s good to know that a ‘project milestone’ has been reached and I can start ticking off the days until my last treatment in just over three weeks time. When my senses eventually return to normal (I’m told around the end of November), my plan is to roll into the Christmas period eating full English Breakfasts, followed by curry, for a week – and everything else that is bad yet glorious.
Apart from the great staff at Lincoln Oncology, a special mention should go to Marie, my Macmillan nurse. She takes me through the many processes in a manner that is both practical and sensitive. If you’re ever stuck for a charity to support, well, that’ll be where my money will go in future.
A heartfelt ‘thank you’ to all those who come to visit and cheer me up: please don’t stop, it really does work. If I fall asleep I’m not being ignorant, but it’s fair to say that the amount of drugs and poisons swilling inside me does make me feel proper tired. My immune system is pretty crap at the moment, so exposure to big crowds are not recommended. This is particularly loathsome as it will probably mean missing the Peter Gabriel gig in Manchester that I have tickets for. I may just hire an Astronaut’s outfit: it’ll be a talking point for the people around me…
OK – that’s it for now. I’ll keep in touch. Love to you all.
PS. Radioactive Man frets about impending hair loss…
PPS. Will those who have stuck Post-It notes on my stuff trying to bag bits of it (especially on the hifi), kindly bugger off – I’m not dead yet.
Third post – 23.10.13
Quick update – 25 x radio and 5 x chemo sessions down, 5 x radio and 1 x chemo left (I can break this down into ordeal minutes if you like). Yes, still very sore and feeling completely knackered, but only a week of treatment to go! Digesting food is very difficult and my appetite non-existent. Five weeks ago, I worried about how I would feel by this point, but the closer to treatment end you get, the more impetus it’s giving me to get through it.
A more recent development is that I cannot stop the production of phlegm: I now sound like an old man clearing his throat, and every five minutes too – where the hell is it all coming from? I have to spit this out far too often: I’d put professional footballers to shame. This also buggers up your sleep pattern.
Hopefully I’ll feel more normal 10-20 days later: as of now, I yearn for the time I can enjoy crispy bacon and fried egg sandwiches on fresh sourdough bread with lashings of butter and black pepper. I’m also watching TV cooking programmes as a form of therapy…
Behold the enclosed photo – do you think I’m over-compensating for my lost beard? Beneath this straggly thing, I found that I actually have a chin – a single one. I haven’t seen that for 15 years
Catch up soon.
Sent: 30 October 2013 18:03
Subject: Radio activeman – update 4
I thought that I should leave this one until the treatment was complete: well, it now is! Thirty radio and six chemotherapy sessions, an inordinately large quantity of drugs (currently having a love affair with a large bottle of Oromorph liquid morphine), and the physical effects are as follows:
• I’m currently over two stone lighter. Ladies and Gentlemen, this is NOT a dietary plan. Not one with much to recommend it by anyway.
• I have found my single chin, but muscles (again, stop grinning – I HAD some) have wasted away. I still have most of my hair, and a rather uneven pair of sideburns. Alas, no beard.
• The ‘treatment effects’ will continue to work for at least 14 days, i.e. I will microwave internally for a while yet. Bring round a Geiger counter for some added fun.
• Most visible manifestation is the very uncomfortable 3rd degree burns around my now-visible scrawny chicken neck. I’m lathered in Aqueous Cream (about to be substituted for Flamazine, used for the treatment of infection in burn wounds), but apparently this burning can clear up pretty quickly – within a week hopefully.
• The razor pit that is my throat will take at least 4 weeks to ‘heal’. Proper food is some distance away, alas…
• My mouth still feels like I’ve tried to dry shave internally. My gums have expanded to hide my wisdom teeth: the result is similar to having a permanent mouthful of fur balls.
• The feeding tube in my tummy is coming to good use, as it is now my main source of protein intake. And no, I STILL cannot pour alcohol into it.
• I catnap more than a cat.
One huge surprise was that I drove myself to the hospital everyday (a 35 mile round trip), including chemo sessions. Plans were made for relief drivers, but I found that I could manage fine apart from a couple of visits. I like the fact that I had this level of control over some of the treatment process, as there is no doubt that – most of the time – you’ve place yourself in the hands of others but you still feel quite isolated. There are two prime drivers getting me through this: one is my complete trust in the team treating me, and the other is my ability to map out the day into segments during treatment: transport, the drug regime for pain management, the feeding sessions, sleep requirements, etc. I found that this really helped in managing my day to day existence.
The doctors say that this is now the ‘desert’ segment: you’re out in the wilderness for at least 6 weeks (but healing all the time) until they next contact you to arrange the preliminary inspection. By the time I get to see them again, I will hopefully be feeling up to speed. Again, results may not be forthcoming for another 6 weeks after this, so it’s a waiting game now.
You have all been exceptional at keeping my spirits high – for this I thank you. Liz has been a wonderful bully in forcing me to eat (I have no appetite, and certainly not for yet more soups, energy packs and yoghurts). Without you all, this would have been much harder. I’ve missed a lot of events, but I’ve kept my sanity, and I’m so looking forward to being able to taste food again, especially with good company – and staying awake during the day too.
Catch up soon.
PS: 101 uses for a radiotherapy mask, No. 1 – coat & hat rack:
Fifth post – 13.12.13.
So, it’s like this: when the Oncologist said that I would continue to feel completely rubbish for a while after treatment ended HE THOROUGHLY UNDERSTATED THE SITUATION!
The first two weeks were pretty shitty (literally – there are some who got to view it). Highlight was a double enema one Sunday night: due to the combination of painkillers, my bowels and bladder failed to function, with nitrous gas being shoved up my backside at 11pm on a Sunday evening (after an earlier 9pm blast failed to move the blockage – dynamite would have failed to shift it). It’s also the first time I’ve done gas in reverse…
My neck was covered in third degree burns and the drugs started to send me a bit loopy, but the feeding tube was my constant friend. My face above the newly-formed red necklace was beige (and not in a good way). Still trying to get rid of excessive phlegm – I’m pretty sure I could have filled a couple of buckets (sadly, no market for it on ebay). The third week was better: I could look at a bowl of soup without squealing with pain (or vomiting), and by the fourth week I was on spaghetti hoops and baked beans (which led to a close call for enema no.3).
We’re now six weeks post-treatment; I started to miss the daily regime of home-hospital-home and contact with the medical staff, but I’m almost eating normally except for crunchy or starchy/dense foodstuffs. The throat and mouth ulcers are still giving me grief and my lazy saliva glands have surrendered, so chewing requires pints of water for successful mastication (think of a mouthful of cream crackers for the general idea). Total weight loss (to date) is three stone, but I’ve put a couple of pounds back on. Taste buds have altered completely after the chemo: all liquid tastes metallic (water, coffee, alcohol – red wine is right out), and spicy food is excruciatingly painful. This may get better over time. In the meantime, Indian restaurants all over the land are in mourning.
However – and this is the Christmas surprise – I was given the ‘thumbs up’ by the Senior Consultant last night regarding the treatment. Internal camera inspection (I despise that camera) shows no sign of the Cancer, but they will continue to monitor me every 4-6 weeks for the next year, and for a further four years before any all-clear is given. I wasn’t expecting this discussion until the end of January, but they felt confident enough to tell me now. Emotions are mixed: I’m mostly bloody delighted and wanting to sing daft songs naked from rooftops, but a little part of me doesn’t believe what they’ve told me. Apparently, this is natural, so I’m just concentrating on being a smug bugger. After 3 months of nil alcohol, I will now search for a drink that tastes least of metal, so I can toast my friends and all Oncology / MacMillan nursing staff in style.
Once again, thank you to all who wished me well and came to see me: I hope you realise how much this helped, and how much I appreciated it. Most thanks go to Liz, who was an absolute star when it came to putting up with the ‘grumpy sod with the tube’. I think we can celebrate Christmas now!
I started off describing this as a journey. It certainly feels like it (but without an Oyster card), and I found out a lot about myself in the process: what you’re able to endure, how much your loved ones care about you, the bits you find funny (the enemas weren’t actually fun, but certainly comical), how your appetite and taste changes; but mostly how you view your life and those who mean the most to you. Perspective? Got bucket loads of it
Huge love to you all, and a Merry Christmas!
PS. Radioactive Man says “Grr, begone!” to Cancer:
Sixth post – 23.01.2014
I’ve just returned from my latest consultation at Lincoln Oncology. I fret about every perceived additional lump or bump; however, they are happy with progress to date but stress that the first two years are critical, so I’ve to be very aware of any changes I might experience. I absolutely loathe the camera up the nose segment: my left nasal passage was duly sprayed with numbing agent (pepper spray, more like) but resolutely refused to accept this foreign intruder. The right passage reluctantly acceded as I coughed and spluttered. Still impressed with the picture quality mind, as was the Consultant.
Radio and chemo are different in their subsequent impact: radio is much more direct, with the after effects located at source. Therefore my throat remains sore and dry, with inactive saliva glands in need of constant lubrication (WD40 is not advisable, though fresh pineapple chunks are proving an acceptable substitute). Chemo is a bit like internal Domestos (other brands of bleaches are available); they kill all known germs dead. Unfortunately this includes taste buds. The combined affect is that certain foodstuffs are still out of the equation: bread, biscuits, general crunchy stuff; chunks of meat; chocolate; anything spicy, etc. Three litres of water a day helps digestion, so it’s just a change I’m slowly becoming accustomed to. Alcohol in the form of white wine and lager (no, not as a cocktail) is okay in small doses, but it’s funny how you don’t bother with it when it no longer gives you much enjoyment. My liver thanks me daily.
I also have a very strange beard re-growth; moustache and a ‘v’ section below the bottom lip (no growth in the neck region). A self-styled goatee which would win me no fashion awards, so I’m shaving it off until it makes its mind up as to which way it would prefer to grow. However, the surprise is – it’s black! No white bits. I’m almost tempted to shave my hair off to see if I can stimulate dark growth there too. I also remain trim, and have started an exercise regime once more in a quest to find the missing muscles.
So this is the second part of the journey: a constant need to monitor my condition for the next five years. I’ll keep in touch with any developments.
PS. Recuperating with sweet mint tea in Tangiers. I’ve become addicted to the stuff.
7th Post – 21.02.14.
I had my latest monthly check up yesterday. The good news is that progress is fine; I’m learning to tolerate the nasal exploration; my sore throat will eventually get better, and I now have some artificial saliva products to aid digestion. The ‘not great’ news is that I learned a new word, and it is Lymphoedema:
“Lymphoedema is swelling that develops because of a build-up of fluid in the body’s tissues. This happens when the lymphatic system, which normally drains fluid away, isn’t working properly.”
A side effect of the radiotherapy, Lymphoedema is a chronic swelling. That means it is a condition that never goes away because the causes can’t be reversed. In my case it manifests itself as a swelling under the chin/around the neck – let’s call it the ‘bullfrog’ effect. I originally thought it was the loose skin from my many previous chins, but as the swelling started to get harder, I thought it was probably something else – and indeed it is. However, there is a daily treatment which reduces the look of someone storing vast quantities of food in the head, and that’s to slap it vigorously (in a chopping motion) for a few minutes a day. Now I’m sure I’ll get many volunteers to give me a daily slapping but don’t worry, I’ve got this one…
Apart from this, I’ve been doing some press work with Macmillan, and have also joined Macmillan Voices: these volunteers aim to use their experience to improve cancer services and raise awareness of the realities of living with cancer. I’m not in any way unique: there are 300,000+ individuals a year who will be diagnosed with Cancer. Key to my recovery process was finding a method of communicating with others in the same situation. That’s where talking with friends, family and Macmillan’s comes into play. I cannot stress enough the need to keep in contact with the outside world; never hide away, and never be ashamed.
I’m consciously moving away from that mindset of ‘Dealing with Cancer’ to one of ‘getting on with life’ – with a spring in my step. Concentrating on the cancer is like believing that there’s only a past – letting go and moving on is knowing that there’s a bright future ahead.