A Year to Remember

I’ve just had my latest consultation, including the ‘Snotcam’. We talked about all the various issues and after-affects that beset me, but the consultant is satisfied – nay, happy – with my progress; enough to reschedule future inspections on a quarterly basis. Not much I’ll miss about those trips to Clinic 6, except seeing the Duracell-powered Marie, my wonderful Macmillan nurse. 

My next visit is planned for early December, and this one (hopefully all being well) will be a bit of a landmark. I was first diagnosed last August, but my preferred ‘C’ birthday is 11th December; marking one year from the day I was told by the Oncology team that they believed the treatment regime to have been successful (cue loud synth-led fanfares). 

Before today’s consultation, what struck me whilst absent-mindedly peering up from my book (they were running late) and looking round the waiting room, was seeing people who were not just going through the same inspection process, but also those who were being told the news for the first time. I saw such a person today: I started to recall that afternoon last year, and felt a cold, dark shiver. No insult to the staff at Lincoln Oncology Department, but my obvious preference is to never have to go down this road again – and my daily regime has changed to hopefully give me the best chance of achieving this aim – but I find it interesting to look back and realise that everything about my outlook to life and future expectations is now different. It’s also comforting that so much of what surrounds me remains the same – my wonderful family and friends, home, favourite places – but I seem to love them all even more. I find it difficult to explain why this should be… 

I’ve conversed with many wonderful individuals through both this blog and online forums, and the ability to share experiences – both good and not so good – with new visitors who are just about to embark on this journey (hopefully providing a level of reassurance), is very satisfying. Reading through other people’s experiences post-treatment makes you understand that no two journeys are the same: we’ve all reacted differently regarding our ability to cope with the consequences of cancer, both mentally and physically – pain management, fatigue, work, daily routine, interaction with loved ones, etc. I’ve met with / chatted to a number of people in similar positions, and one of the things we do share is ‘gallows humour’ – comparison of scars (ranging from ‘wow, that’s neat’ through to ‘urgh’); painkillers (from useless, via valiant attempt, through to mind-blitzing); food (disgusting, manageable, verboten); drink (when did a beer start to taste like beer); sleep (can you catnap standing up?) – basically, whatever it takes to get you through this.  

Sadly, one person whose blog gave me many laughs and thoughtful moments passed away last week. Even though I never met him, his ability to cut through the crap and fully understand his situation (making you question your own thoughts and feelings), whilst smothering the whole thing with a layer of vicious humour and liquid prose, filled me with admiration. My thoughts are with his family: I hope they understand how much he brought to others. 

Let’s look at cheerier things: we’re off to London soon for a very late Birthday treat – a rather special restaurant. We tried something similar just before Christmas last year, but it wasn’t a great success for me, and I didn’t have the balls to get our famous-name chef to liquidise my main course. I’m sure this one will be far more successful 🙂

Until the next time!

PS. 101 uses for a Radiotherapy Mask No.6: turn it into a spooky desk lamp.

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Don’t you forget about me?

Let’s talk about work.

There is no doubt that, post-treatment, I’ve lacked the vim and drive I had before my diagnosis, and I suffer from fatigue after the most basic of tasks; catnaps are no longer a luxury, they are essential. I’ve got better as the months have gone by, and I’m pretty keen to get back to something resembling a ‘normal’ lifestyle, especially when it comes to taxing my brain in a working/creative environment.

During my search for work over the past few months, I’ve decided to be completely honest about my condition – and current remission – to both potential employees and agencies. After this, responses have been few and far between. I cannot prove that it is because of my situation (I would hope not), but I’m acutely aware that it’s likely to play at least some part and, being brutally honest, it would be a huge challenge to throw myself into the kind of environment I was in previously due to the demands involved. This won’t stop me trying though…

To this effect, I’ve decided that one avenue involves setting myself up in business, working in a field I still love and enjoy, namely design and project management. Its early days, and I won’t go into details of potential opportunities; however, it is wonderful to put my design head on and feel involved again. I’m really enjoying the process (this is called the honeymoon stage), but there are many things still to be resolved (the reality phase, e.g. will I ever get paid?), and there is no guarantee that this will get off the ground in the manner I would like. However, it has taken my thoughts away from what was a fairly stressful time in my life, and allows me to think more positively about stuff I can do in the future, hopefully with worthwhile results. Dealing with cancer can make you feel quite isolated and lonely, and interacting with people on a daily basis is making a huge difference.

One issue to confront is whether or not I mention my situation in a work environment. Depending on how its approached, colleagues could have many different reactions: those who know what I’ve been going through may react to the diagnosis and absences for future appointments with understanding and offers to help, but others may feel uncomfortable around me. Some people may be reminded of a loved one’s time with cancer (I’ve come across this a lot recently). Many people find cancer an unpleasant reminder of their own mortality and could react awkwardly out of some vague fear or uneasiness.

I would certainly be interested in feedback from those in similar situations: your experiences going back to work with a either a previous or new employer, or chasing self employment opportunities.

PS. Okay, so the title is another song reference. I just can’t help myself (whoops, another one).

PPS. 101 uses for a radiotherapy mask No.3 – let it attend work meetings on your behalf.

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When Cancer Comes to Visit – a Partner’s Perspective

A couple of posts ago I mentioned that Liz, my long-suffering wife (hey, someone had to volunteer for the thankless task of looking after me, and she drew the short straw), had penned some words regarding how a partner copes when their other half develops cancer. I’d like to share this with you. Oh, and don’t be distracted by the mention of Ted – it’s what they call me round these parts.

 

I thought it would be interesting for others to read about dealing with Cancer from the partner’s perspective, especially the times where I felt least able to help, but also where I could provide most support. It goes like this…

On my way back from the hairdressers one evening, my mobile rings. I never answer it whilst driving so I waited till I got home and listened to the message. It was Ted; he had just been in with the consultant at Lincoln County and the news was not good – he had cancer. Obviously I knew about the lump on his neck, but this outcome hadn’t occurred to me: it really felt like being hit with a baseball bat. Once I had picked myself up, I rang him back and got a few more details. It was a squamous cell carcinoma.

My initial concern was that he got home safely but having convinced me that he wasn’t about to do anything silly, I found myself doing what we all do nowadays – I Google’d it.  This was a mistake: I scared myself silly. If you find yourself in this unfortunate situation then please, whatever you do, avoid going straight to the internet: while the sites you will come across can be informative and mostly accurate, they may not refer to your particular cancer or the stage of cancer you have to deal with.

The websites I found – and there are many full of doom and gloom – did not give a good prognosis. I immediately decided not to undertake independent research but rather to wait for the professionals to give their prognosis and best advice. When Ted got home he was very positive – he has a background in project management and this was just another project that he was intent on managing: more to the point, he was going to beat this thing.

I obviously had lots of questions, some of which he could not answer. The consultant had indicated a better than 50% odds of a full recovery, but what about the care he would need, and what was the timescale?  We also had two holidays planned – one in Devon in September and one in India in October – did we need to cancel these?

Marie, Ted’s Macmillan nurse (who he had just been introduced to) answered her mobile straight away, even though by this time it was past 7pm. She answered most of our initial questions, but where she couldn’t, she came back the next day with a more complete response: she was an absolute angel.

We now had a basic game plan – the next four months were put on hold and our efforts would be concentrated on getting through this and beating the unwelcome visitor – and beat it we would. Ted had promised me that we would grow old together and he wasn’t getting out of that one…

Then we had the difficult task of telling our nearest and dearest. Our tone was always positive and we mostly allayed fears of impending doom and gloom. More importantly we asked for their love, help and support, which they gave without hesitation or restriction. Their understanding of where we were at was wonderful.

And so we started our journey…

Firstly, over the next few weeks there were lots of tests, biopsies and scans. Then came the outcome meeting: this is when you are told exactly what it is you have and how it will be treated and, most importantly for me, what they calculate your odds for recovery to be. It was possibly the most important day of our lives and I had a business meeting in Spain which I could not get out of: I was devastated. However, one of our many wonderful friends agreed to go with Ted, make notes and ask questions – and most importantly, hold his hand. I have to say that it was the most terrifying day I have ever had: my mind went constantly from the positive to the negative and I was so relieved when Ted rang and told me the final prognosis – cancer in the throat region with a 70% treatment success rate, which is about as good as it gets.

The next ordeal was Ted having his feeding tube fitted. It is really hard watching someone you love in pain and trying to encourage them and keep their spirits up – you feel so helpless and there is nothing you can do but hold their hand.

Then the radiotherapy and chemo started – we seemed to sail through it in the first few days. Ted was eating normally and we both thought that this may not be as awful as was expected, but it wasn’t long before things started to go downhill. The first effect was his ability to taste, then to eat dry food (and when I say dry, I mean anything that does not come with a bucket full of gravy or sauce). It was not long before we started to eat different things – we always ate together though, but even eating beans on toast made me feel guilty as he looked longingly at my plate.

What was really hard was convincing Ted that he had to eat – we both love our food but there is no joy in eating when you can’t taste it, or it’s too acidic, and you aren’t able to deal with textures. And so I became the bully: “what have you eaten today? You need to eat more.”  I started to sound like a typical Jewish mother.

Then there were the mood swings; gentlemen, I now understand why you cower in front of pre-menstrual / menopausal women (I can remember the days of Ted coming through the door, taking one look at me, and instantly apologising), but I understood that it was just his frustration at where he was in the treatment cycle and what he was going through, so I bit my tongue. Only once during that whole period did I have to lock myself in the bathroom so that he couldn’t see me cry. I always had to remind myself – this is not about me, this is about Ted and providing him with the love and support he needed.

The worst period seemed to be after the treatment had stopped. His neck, which had been red beforehand, now had what looked like third degree burns and his ability to eat anything completely vanished. We were now down to the feeding tube only and more nagging from me: “How many shakes have you had today?”  “You must have more.”

Ted’s spirits seemed to go downhill a lot during the first few weeks post-treatment as, even though I could start to see him turning the corner, he couldn’t – though I think that was just his frustration at things not happening quickly enough. Again all I could do was watch and hold his hand.  Oh, and lots and lots of cuddles.

The first consultation, six weeks after end of treatment, was amazing. We weren’t expecting much; in fact we thought that we would not be told how it had gone until late-January, but there we were in mid-December being told that they had ‘got it’. Wow…I sat there in disbelief: “are you sure?”

Since then, there have been two follow up consultations and both reports are the same – all looks good. I know that the first two years are critical – and there are still daily symptoms that Ted has to deal with – but we are now planning ahead. Holidays are booked and I’m not cancelling this time!

I know that our journey is far from over and that we will not get the all-clear for five years, but we have come so far in the last eight months: we truly believe and hope that, bar the monthly check ups, the road ahead is clear. Each further appointment is another box ticked.

I just want to end this by saying a few thank you’s:

Thank you to our respective families who did not panic but gave us their love and support throughout.

Thank you to our dear friends who were always there for us –  those who came to visit, those who sent flowers, those who took Ted to and from hospital if asked, those who attended consultations with him, those who emailed and telephoned and those who sent silly presents that made us laugh.

Thank you to Macmillan – you are amazing – when I realise my “business plan” (winning the Euro Millions), you are at the top of the list!

Thank you to all at Lincoln County Hospital’s Oncology Department – you did it!

Thank you to the angel who took the blubbering fool she found in a petrol station home with her and gave her a hot water bottle she needed, because we didn’t have one. One day I will do a shopping list covering the essential items for the newly-diagnosed.

To you all – we could not have done this without you.

Thank you finally to Ted – you came through this with such strength and all the time (even through the most embarrassing episodes) you kept your sense of humour.

Radioactive Man Update No.7

I had my latest monthly check up yesterday. The good news is that progress is fine; I’m learning to tolerate nasal exploration; my sore throat will eventually feel better, and I now have some artificial saliva products to aid digestion/mastication A.S. Saliva Orthana being one). The ‘not great’ news is that I learned a new word, and it is Lymphoedema:

“A 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 are a number of daily treatments which reduces the look of someone storing vast quantities of food in the neck, one of which is 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 the cancer’ to one of ‘getting on with my life’ – with a spring in my step. Concentrating on the cancer is like believing that there’s only a past – attempting to let go and moving on is knowing that there’s a future full of potential ahead.

PS. 101 Uses for a Radiotherapy Mask, No.2 – sunglasses, headphones and shirt rack (or ‘pretend it’s a beach bum’):

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The Radio Activeman files

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.

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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.