Two Years on

Two years down the road: I was told that this is a significant milestone in as much that, if you can avoid re-engaging with the same cancer during this period, your chances of staying clear long-term is much increased.

My latest appointment with the Senior Oncologist was set for a bizarre time – 4pm on New Years Eve – so the evening could have gone either way. We chatted for some time about how the last 24 months had gone and how current side effects – dry throat, poor mastication, mouth ulcers, lack of facial hair growth – are ameliorated by newer treatment techniques. No benefit to me obviously, but it’s good to know that others about to enter into the unknown will hopefully suffer less side effects.

We then went through the ritual examination, and all was well; nothing he was too concerned about. I have to admit that this was a relief: I’m not sure why I was so nervous about this one, but with a recent first anniversary of a good friend’s passing from identical circumstances (his diagnosis came a month after mine), alternative outcomes preyed on my mind. I’m delighted that the Consultant is happy (and Liz and the rest of the family are obviously ecstatic too), but decided that New Years Eve should be spent quietly, with just the two of us sharing a special bottle of fizz. My past experiences of New Years Eve is that it’s the only acceptable time to wear body glitter without being mistaken for a male stripper, and I thought I’d give that a miss for a year…

There were only three posts by me on this blog during 2015 (all tied into my consultant visits), mainly due to having nothing significant to report compared to my first year post treatment; consequently there is a reduced number of visitors to the site. Indeed, I had more traffic to the ‘Music Hoard‘ page in the summer (have you been there? All my OCD tendencies are laid bare). Future consultant visits are still set at three-monthly intervals, but realistically there’s not much more to add. Still, 10,000+ hits to date is pretty encouraging: hopefully the blog has been of use to those who have read it (and possibly complete b*ll*cks to some), but unless there is anything significant to report, I think it has probably run its course.

Having said that, I occasionally post on the Macmillan Online Community (in the Head & Neck Cancer section). You realise that people starting out on this journey are frightened and scared, and there are a lot of us who, having travelled down this path, can shed some light on what may follow. All experiences differ, but I’m always heartened by the advice freely given  (take a bow, Joyce and others) to try and provide some (hopefully) useful guidance, comfort and wisdom.

Many sufferers find themselves at their wit’s end – to the point of wanting to cut short their treatment, to the despair of family members – and you hope that the mountains of encouragement and support will be of use in getting them through the process. They are all individual perspectives, but this shared wisdom would be my preferred first port of call for anyone about to go on this journey.

I hope you all have a worry-free 2016! Take good care of yourselves, and may all your troubles last as long as your New Year resolutions 🙂

Best wishes

Theo

PS: Radioactive Santa Mask!

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The full version…

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…and the celebratory fizz!

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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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The Box that Needed Ticking…

…is the one that said that the results from the PET scan would be fine. Well, consider that box ticked!

I’ve just come back from seeing Dr. Sheehan, Senior Oncologist at Lincoln County Hospital, and he gave me the cheery news. The nasal camera inspection (I’ve made my peace with the device now) shows that the treated area is responding well, and though my throat is still sore and dry, I was assured that it will return to normal in time. My taste buds will eventually respond, though my saliva glands might have been well and truly blasted. I’ve continued to keep the weight off (and still losing a couple of pounds) but he doesn’t seem overly concerned. I was nervous about today: I’m feeling a whole lot better now…

I had a second meeting with the Lymphoedema physiotherapist last week. The combination of the Kinesiology tape and the massage seems to be working, and I can stop my neckline resembling Jeremiah Bullfrog (old song reference: one point if you guess the song), but you do have to keep to the regime, or the neck swells up pretty sharpish. Old ladies stop me in the Supermarket and ask me who slashed my neck when they see the tape: I’ve tried telling them about Lymphoedema but they glance at me quizzically. I’m just going to say “bad people” in future.

A subject that currently vexes me is renewing Insurance post-treatment. I have patently become a leper and, in an immortal phrase from Little Britain, “the computer says no”. My existing Broker couldn’t provide me with a new travel insurance policy, and my research kicked out quotations ranging from £800 to £2500 for single trip cover. This is plainly nuts (of the testicular variety).

Enter the Macmillan website: I found help in two forms, firstly from trawling through the online blogs and then asking, via their search engine, for ‘Getting travel insurance’. I now have a new policy which, though three times more than my previous premium for multi-trip cover, is at least reasonable compared to the original quotations. I won’t endorse them online as you may not get the same result, but the Macmillan search engine will certainly point you in the right direction.

Right, I’m off to celebrate a little victory – cheers, and a Happy Easter / Happy Pesach to you all!

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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 on the Radio!

In an earlier post, I mentioned that I’ve been doing some press work with Macmillan Cancer Support, specifically regarding how loneliness can affect cancer sufferers both during and after treatment. Well, today I travelled to Lincoln and the offices of BBC Radio Lincolnshire to be interviewed – along with Kathy Blythe from Macmillan – on Melvin Prior’s morning show.

I very much enjoyed my 25 minutes on air, and I hope I got most of my points across in a succinct manner, but it’s easy to be hyper-critical of yourself after the event (if I got paid for each ‘erm’ used, I’d be exceedingly wealthy by now). I suspect offers for a future career as a Radio DJ will not be forthcoming…

Anyway, it’s on BBC iPlayer for the next 7 days if you’d like to listen to it: go to 1:03 to catch the whole bit, or 1:08 to miss out Mike & The Mechanics’ “Living Years” 🙂

http://www.bbc.co.uk/programmes/p01rqn4g

Melvyn Prior also tweeted this photograph he took during the show:

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The key to recovery

I mentioned previously that one of the key aspects to recovering post-treatment is the need for human contact – even if you’re not always up to it. That timeframe from treatment end to waiting for the results can be a very lonely period: you’re without the daily contact from/comfort blanket of the nursing staff, and you don’t yet know the final outcome. I was asked to do a piece with the assistance of Macmillan for the press regarding this period, and the link below is the first result (the newspaper version has my mugshot attached for additional scary impact).

The next update will be “the Partner’s Perspective”: I got Liz to put some thoughts into words about how she felt during the entire process. There are parts of her story that I wasn’t aware of at the time…

http://www.lincolnshireecho.co.uk/key-recovery-cancer-seeing-people-day/story-20714728-detail/story.html

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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