There’s an awful lot of Coffee in Brazil

Six weeks since the last visit to Oncology, I’ve just returned from my latest check up (this time involving both the nasal intrusion and a full jaw x-ray) and the news is all good: in essence, nothing to report. The neck is fine, the jaw looks solid, and the treated area looks good. Yes, the throat is still sore (especially at night); my teeth still feel ‘funny’, but no undue concern. What is there to say when the Consultant has no bad news to impart? Can you write constantly about ‘cautious optimism’? Do you go into detail regarding the merry tunes you hum to yourself when you leave the hospital? Or the fact that you might just have a nice glass of something to celebrate the latest news, even if, in reality, that might not be such a good idea?

Things have altered these past few months – my diet; body size and shape (I’m more oblong than circle these days); alcohol consumption; work patterns. There is definitely a ‘BC’ and ‘PC’ period: the bad habits you had pre-diagnosis and the better ones you’re attempting to adhere to post-treatment. I’m more cognisant of how I feel about the things I love: music has never sounded – or felt – better, the sun is sunnier, my family and friends are lovelier, etc. Sadly, I don’t feel the same way about food: it just doesn’t taste as agreeable as I remember it, and the textures are intermittently uncomfortable and unappealing. However, coffee is certainly more pleasurable, and having found a small delicatessen locally (Porter Provisions in Newark) that roasts their own beans, I shall be working my way through their entire repertoire and become a coffee aficionado. There’s more to coffee than Brazil…

Speaking of which, it seems that my previous comments regarding the expected appalling behaviour by some of our football ‘stars’ was borne out for all to see during the World Cup, alongside the impotence of the English football squad and management (a tad harsh? Nope). That said, I’ve thoroughly enjoyed the football, even if the play acting wouldn’t pass muster in local am-dram societies. However, the USA v Belgium match was a worthwhile advertisement for the game, played in the right spirit by both sides (even Liz enjoyed it – I can’t tell you how much of a surprise that was). The final should be interesting as the nationalities of both the current and previous (non-active) Pope take each other on for the third time. Actually, two Popes in a ring could be an interesting contest – please email your suggestions for likely ecumenical sporting challenges.

Enough stream of consciousness babble for now: we’re off to see the Clipper Round the World Yacht Race return to London this Saturday. We will join thousands of spectators descending on St Katharine Docks to welcome the twelve-strong fleet back to London after almost eleven-months circumnavigating the globe – should be a marvellous sight.

Until the next time!

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Memo to self

It’s all too easy to become self-absorbed with your own daily issues during remission, and forget that others close to you have their lives to live and problems to deal with. Some of them may also be unwell, or frail, but nevertheless they were there for you when you needed them. They continue to worry about you, inquire as to how you’re doing, and offer help where they can.

Sound familiar? Remember when you were short with them at the time you were at a low point, but how they stoically continued to provide love and support? Hands up: I’m guilty (fair cop guv – but society’s not to blame). It’s all well and good saying that you were not thinking rationally at the time; that you were channelling your anger because you couldn’t control what was happening to you, but when you come out of this dark tunnel with your marbles intact (and your body healing), remember those who were there when you most needed them – and are still there for you. Just a reminder that being with people you love, and who love you in return, is one of the most pleasurable and rewarding things you can do in the short time you get on this planet.

Self flagellation over with for now: it’s a lovely sunny day and I’m enjoying a cup of coffee in the garden, a Caravan compilation playing on Spotify (perfect 70s prog soundtrack), test cricket about to start and four weeks of prancing, gyrating prima donnas on the TV to look forward to – no, not the Royal Ballet, the World Cup, silly. Players on stratospheric salaries with rampant egos, portraying shameful on-pitch behaviour; truly abysmal refereeing decisions; crass punditry, half-built stadiums with painted pitches (I kid you not) and the perennially disappointing England team – yes, I shall revel in all of it. 

At least there’s the rugby to look forward to: I’ll be watching the NZ v England game early Saturday morning. So by the time most people will be reading this, I’ll either be screaming “Bring on the RU 2015 World Cup!” or murmuring “they were only friendlies, anyway…” 

Hope you all enjoy the three days that constitute the British Summer 🙂

 

PS. 101 uses for a Radiotherapy Mask No.4: have it join your band on bass guitar.

 

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Seven Months On

I had my latest consultation today, including the nasal endoscope. Results from the latest blood test shows that my thyroid function is fine, and that the Oncologist is happy with what he can see down my nasal passage and back of throat – this is a good thing 🙂

Normally, with the camera in place, I’m asked to call out an elongated ‘eeee’: this time we added a couple of ‘heee heee’s’. I was then asked to inhale through my mouth whilst he pinched my nose hard and told to blow through my nose as hard as I could. I imagined how ridiculous this charade will have looked (it felt it): it certainly made the nurse smile. I’ll know it was all a prank when I see a clip of it on YouTube.

So, seven months post-treatment, this is the state of play:

  • My taste buds have re-awakened: I can discern most obvious flavours but not subtle ones. It’s all still a bit brash and temperamental, with some days better than others. Since pre-treatment days I’d had just two mild curries (think Korma) until last week, then a stunning home-made vegetarian feast. I struggled with a Dhal and two of the ‘dry’ dishes, but in the main, I enjoyed it all. This is another good thing.
  • I still cannot digest starchy foods without taking on lots of liquid. Gravy works well, especially with spuds, but water tends to bugger up the taste of certain things, like bread/toast, nuts, etc. Flaky fish works, dense meat (e.g. pork) doesn’t. Frustrating but it’s now the norm. Fresh pineapple and yoghurt is still a favourite though.
  • My throat remains sore at night, but I no longer need to get up every two hours to dispense with vast quantities of liquid; just the one trip. I’m down to sipping 2 litres of filtered water a day, excluding coffee (which was never a problem). It still has a metallic tang (bottled water less so), and I’m not sure if it’s as bad as it has been over the past months, or whether I’ve just got used to the ‘new’ taste. Not really a successful brand strapline (new improved water, less metallic taste). The next trick is to try a Peptac liquid in case acid reflux could be an issue. Hey, I’m happy to try anything…
  • My teeth feel ‘loose’ in the morning: it’s a bizarre effect, like having my gums melt overnight. They feel better after I’ve eaten something, but never quite ‘right’. The dentist is casting his evil eye over my wisdom teeth. I’m anxious about this (no, not the dentist’s evil eye). Worse, the Oncologist mentioned osteoradionecrosis (ORN), but added that this is not normally an issue for another ten years or so. Having just read up on the subject, it’s yet another thing to look forward to…
  • The Lymphoedema is manageable – some days are better than others. I’m constantly massaging my neck, and if I keep the Kinesio tape on for a couple of days, it helps to stop the ‘neck pouch’ developing for a longer period. When I forget the tape, the bulge becomes very noticeable.
  • The tiredness comes and goes, with some days better than others. The days of feeling ‘wiped out’ are less frequent.
  • I can now ‘do’ good red wine in small quantities (no cheap rubbish) – this is a joy (the third good thing), as I was missing my favourite tipple. Spirits are still a no-no, but I no longer yearn for a G&T. White wine and the occasional beer are good. Apart from when we are on holiday though, my intake is a fraction of what it was pre-diagnosis. However, after months of properly flushing out my system, I definitely feel it when I’ve had a drink.

I’m just over half a year into my remission period, but there do seem to be new issues occurring. Reading up on the potential after effects 12/24/60 months post-therapy, you realise how much you’re not aware of when your Oncologist outlines the treatment schedule. You are warned about most likely scenarios immediately surrounding the treatment, but there was scant discussion regarding long term conditions. I hadn’t imagined it would take as long as it has, but I’m told that it can be a year – or longer – to return to ‘normal’ and the continuing after-effects of radio/chemo treatment differs for each individual. I’m not bitter about this because, at the time, what are the alternatives to what’s on offer? At least, alternatives you would seriously contemplate.

Having whinged on a bit, it’s only when you speak to others that you realise how much you’ve actually improved over the past seven months. All things considered, I’m bloody grateful for where I am today…

Apart from that, I spent some time with friends in the southernmost tip of Devon, at Prawle Point. Lots of great walks, fairly decent weather, great company and wonderful food; a perfect break.

I raise a singular glass of red wine to you all!

 

PS Rock sofas in Devon – it’ll never catch on.

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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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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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Radioactive again

I’ve had my combined PET/CT scan today, which makes me radioactive for a few hours. I’ve tried to do an Uncle Fester but no, light bulbs don’t work when I pop them in my mouth. Results should be available early next week, but as my next consultant’s appointment isn’t until May, I’m certainly going to be pestering for an earlier meeting. This scan was done in a mobile unit, the design of which closely follows the maxim, ‘form follows function’: every square inch of floor and wall space serves a purpose. As it’s basically a fancy (and hugely expensive) truck, sitting around for an hour whilst the radioactive glucose swims around you can be chilly, so you get to lounge around with a personal electric blanket. I tried reading, but I was snug and asleep in minutes…

The previous week I had an appointment with a physio specialising in Lymphoedema management and massage. I now have some Kinesio tape to apply to the neck region to assist in keeping the saggy bits in tension. Sadly, they only had blue, which I’m having a devil of a job matching to my many chiffon cravats.

Apart from that, I’ve just come back from a short break: a wedding on the terrace of a beautiful mountain restaurant, high in the French Alps, with the added bonus of three days skiing with wonderful friends. Having lost 24 kg in weight since my last trip a year ago, I seemed to be flying much faster than expected. My method remains ‘stylishly agricultural’, but just being there was a fantastic feeling after the past few months.

I’ll be back next week with the results…

Kinesio tape – not pretty:
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Skiing in Fancy Dress, not a James Bond Convention:
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A snowy mountain Wedding scene:

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The Journey continues…

I’ve just come back from the latest monthly check-up, and apparently all is still well (hurrah!). However, they have scheduled a PET scan for me within the next fortnight – the first scan I will have had since the treatment plan was completed at the end of October last year.

A PET (Positron Emission Tomography) scan is an imaging technique that produces a three-dimensional image of functional processes in the body. To conduct the scan, a short-lived radioactive tracer isotope is injected into my blood stream:  the tracer is then chemically incorporated into a biologically active molecule. This is particularly useful in identifying cancer cells. There is a waiting period of around an hour while this active molecule becomes concentrated in tissues of interest, and at this point they place me in the big imaging scanner for around 40 minutes. It’s a bit like the ‘Joe 90’ experience (a reference only meaningful to people of a certain age). I then remain radioactive for a few hours: I was disappointed to find out that this didn’t involve me glowing green in the dark…

I last had this done in August, before my Panendoscopy.  The latest one will provide a more accurate impression of what is going on inside of me than the few camera inspections I’ve had of the treated area. I’d be lying if I said I wasn’t slightly concerned, but at least it will remove any doubts in my mind – one way or the other. You really want to it to say “Alles Klar!” (it’s a German machine) there and then, but alas, no: results will be discussed in six weeks time. I shall be crossing my digits – not for six weeks obviously, that would be silly.

Apart from this, I spent a week sailing in the Canaries with Liz and a few good friends. Lots of sunshine, some good winds, so challenging sailing (certainly no cruising): the first time I’ve really pushed myself since all this began. It confirmed four things: I’m not as fit as I was, even though I’m back in the gym; I still need to cat nap on a regular basis; excessive alcohol intake is a thing of the past; I feel like a greased monkey with all the sunblock required.

I continue to find some foods difficult to digest, though I’m getting more adventurous with spicy foods (I’ve finally moved on from Kormas). Still find saliva hard to produce and the throat remains sore, especially at night – but I’m feeling better every day!

Thanks to all of you who have looked at this blog – it had over 1,100 views in the first month – and I hope that it gives you a good flavour of what the treatment and healing process is like. If there is anything specific you’d like to ask me, please do – I’d be happy to respond.

PS. Here’s the crew:

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A wonderful sunrise after a bit of night sailing:

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Radioactive Man at the helm…

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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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Songs to listen to during treatment

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Alright, not my actual playlist, but a few of these great tunes got an airing during my treatment days, led by the mighty Kraftwerk:

 

  1. Kraftwerk – “Radio-Activity”
  2. Jackson Five – “Doctor My Eyes”
  3. Rolling Stones – “Sister Morphine”
  4. Gregory Isaacs – “Night Nurse”
  5. Editors – “Smokers Outside The Hospital Doors”
  6. Ben Folds Five – “Hospital Song”
  7. Goldfrapp – “A&E”
  8. Thompson Twins – “Doctor Doctor”
  9. The Prodigy – “Take Me To The Hospital”
  10. Kings of Leon – “Radioactivity” (yes, two Radioactivity’s but both different and equally great)

Any suggestions for the next 10? Let me know!