How It All Began

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…

Hello all
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):

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The Mask of Doom:
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The PEG tube – sensitive souls, look away now…

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Second post – 02.10.13

Hello all

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…

Radioactive_Man

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.
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Third post – 23.10.13

Hello all

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

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Catch up soon.

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Sent: 30 October 2013 18:03
Subject: Radio activeman – update 4

Hello all

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:

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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!

Ahem…
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:

simp_RadioactiveMan2_F
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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.

IMG_1567

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14 thoughts on “How It All Began

  1. Hi. I have just read your blog to provide an insight into chemo. My little boy was diagnosed with non hodgkins lymphoma at the end of April and is about to start chemo 6 of 9. He is constantly being harrassed by the dieticians for not eating and to be fair if everything tastes of metal as described I can’t blame him. You mentioned in your blog a protein drink that was cappuccino flavoured, one thing Adam will drink when on treatment is coffee, can you remember the brand / name of this as we have only been offered fruity / chocolate shakes & drinks.and maybe a coffee protein shake is the future !

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    • Hello Julie
      I do hope Adam is holding up well: it is difficult enough as an adult not eating when you cannot taste anything, but as a child it must be even more frustrating. I had a PEG installed before treatment started, and a mountain of ‘Fresubin’ shakes. These came in 200mm bottles, from Germany (manufactured by Fresenius Kabi). There are three flavours: a fruit one (wasn’t great), Cappuccino and Vanilla. I’m sure the latter two would work. Your dietician will be able to recommend these for Adam. They’re 400 calories each, so hopefully 3 a day would work: they do taste ok-ish.
      Best wishes
      Theo

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  2. Omg just looked at your fbk page. You live in the village I was brought up in and where my mum still lives, we share mutual friends.

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  3. Thanks for writing your blog , I am right at the beginning of my journey and really scared and worried , reading this has helped me and I hope I can make it through to the other side like you did

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    • Hello Gary
      Thank you: writing the blog came from original texts and emails sent to friends. They liked it, said I should publish them, and I did. I found it quite cathartic, and I’m genuinely pleased if they are of some help to others. It starts off as a scary journey, and it helps to have some pointers from others, especially those who get through it relatively successfully. I wish you all the best in your treatment and hope for a successful outcome!

      Like

  4. Brilliant reading this everything is exactly the same as my dad. Especially the beard only grows on the opposite side that the radiotherapy was on and he still has his hair which is mad. The one thing he’s struggling with is eating and he misses his taste buds.

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  5. Theo; thanks for the time and effort you have put into your blog. I have found it reassuring and scary in equal measures. FNA in July showed up pos for metaplastic SCC in node in my neck. CT scans were negative so I had diagnostic surgery with lots of biopsies and right tonsillectomy. Tonisl is the culprit. I am HPV positive which is good, a retired pathologist has explained that its really a different disease from 20-30 years ago, when it was smoking and alcohol as number 1 causes, so there’s another benefit of plenty of sex! The good news being that HPV pos tumours respond much better to the radiotherapy.
    RIG tube going in tomorrow, then mask fitting and planning CT on Wednesday. I just want to get started with therapy now and get this thing beaten, I pray.
    Huge fear for my wife and kids, not to mention scared witless myself! However, their belief and good friends are I am sure a huge part of survival.
    Same Rx plan; 30 fractions with weekly chemo. I am going to ask fro cetuximab rather than cisplatin as results seem same but its much less toxic, but we will see whether that is possible. Interesting to read that the Aussies are now resorting to much less aggressive doses with the HPV positive patients.
    Wish me luck!

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    • Hello Philip

      Your description takes me back! Very similar circumstances and conversations. I was also told that current doses are less aggressive: how quickly things move on. I also couldn’t wait for the treatment to start, but let events take their course. It will soon become an issue of pain/discomfort management, especially after the RIG installation. The mask fitting was a breeze: hopefully you’re not claustrophobic. If you are, take in a fairly mellow (favourite) CD as background music.

      My Macmillan nurse was an absolute star: I hope you have been introduced to one, and that they will be as reassuring to you as mine was to me. More to the point, they were very adept and handling my wife’s concerns. She gave me the confidence to get through the process with my wits about me, and being able to reassure my family at the same time.

      The best way I can describe this is to think of it as a very scary 6-month fairground ride: you approach it with much trepidation, and yet it starts off slowly and gently. However, you soon become very uncomfortable; it feels out of your control and you wish it would come to an end. Even when you’re approaching the end you’re feeling nauseous. However, it does end, you calm down, and eventually all becomes relatively normal again.

      This is easy to write now, being so far from treatment end, but I remember it all too well. Try to keep yourself occupied: read books and listen to a lot of music (avoid daytime TV); take gentle walks when you can; write notes for friends, and drink as much water as you think you’re able to. Then drink some more. Try not to get too snippy with the family: you will be frustrated at times, but it is part of the process, and all your family will want to do is be there for you. If the painkillers give you constipation, take as many ‘relaxants’ as you can: you will be thankful for it.

      I wish you the very best: you will discover bits of yourself on your journey, and you’ll find out that you are stronger than you’d imagined.

      Stay strong!
      Theo

      Like

  6. Hi Theo,
    that’s a great blog. Really helpful to everyone who followed in your footsteps! As I did about years later. I also wrote a blog, though didn’t manage the same level of humour as you. Mine is here
    https://community.macmillan.org.uk/blogs/b/a_journey_through_throat_cancer?returnUrl=https://community.macmillan.org.uk/blogs/b/a_journey_through_throat_cancer
    if you are ever stricken by insomnia. Hope all is going well,
    Cheers,
    David

    Like

    • Hi David,
      Thank you for your kind words: I’ll certainly have a read of yours! It did seem to help to get words down, especially for those who found it hard to approach me regarding how events unfolded.

      Hope all goes well for you.

      Best wishes
      Theo

      Liked by 1 person

  7. What a fantastic blog. I wish I’d found it sooner. My partner is 3 weeks post treatment and it has been an inspiring read. He is finding the taste changes very frustrating, and I wonder how long it took for your metallic taste to improve?

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    • Hello Carol – thank you for the lovely feedback! In terms of taste, it was a gradual process: it took months to ‘lose’ the metallic taste, but I suspect it was there for longer, and I just got used to the ‘new’ taste. This was certainly the case with spices: I could do ‘hot’, ‘salt’, ‘sweet’ but without subtlety – very frustrating. Even now, four years on, swallowing is still difficult with certain foods, so its a tough road ahead. You need to get used to ‘little victories’: everything which is easier than it was a couple of week’s previously is to be celebrated! I wish you both the very best on your journey ahead.

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      • Thank you Theo.
        We have a rocky road ahead, but it’s encouraging to read about your journey.
        Carol

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