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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Scary food?

My latest quarterly probing with the consultant has passed without panic: all is well, to the point where future meetings are to be 4-monthly. I was seen by Mr. McRae, the consultant I originally met with; the one who passed on my diagnosis over two years ago. He’s pleased with the way things are progressing but stresses that it’s still a five-year wait, though the likelihood of reoccurrence is much smaller after two years – and that deadline is pretty close.

There are a number of cancer scare stories being foisted on the public by the press on an almost daily basis, and one UK newspaper seems to publish them more often than some (you can probably guess which one). Here are a few, and as someone who loves to eat fish, the first two caught my eye:

New salmon cancer scare  The Scottish salmon farming industry faces a sales ban and fines after traces of a cancer-risk chemical was discovered in the fish.

Malachite green, a cheap disinfectant treatment for eggs and young fish, was banned in June 2002 but traces of the chemical are still being found in up to 19 per cent of farmed salmon.

The industry is still reeling from a U.S. study published last week, suggesting people should not eat Scottish farmed salmon more than three times a year.

Read more here

Fish cancer scare  Experts fear people who eat fish from waters contaminated by a radioactive pollutant discharged by nuclear plants and factories are at a greater risk of developing cancer than was previously thought.

The health risk from exposure to tritium remains low since doses are still within international safety limits. But scientists are concerned that people who eat fish from waters contaminated by tritium may have received much higher levels of radiation than had been estimated before, according to a report in New Scientist magazine.

Further information here

Breast implants in cancer scare  Women with breast implants are up to three times more likely to die from lung or brain cancer than those without, it was reported today.

The findings come after a long-running US study of 13,500 women who received breast implants, comparing their risk of dying from cancer with the general population and other people who had undergone plastic surgery.

And the study found that women with saline implants suffered the same higher rates of lung and brain cancer as those with controversial silicone implants.

It found they were twice as likely to die of brain cancer and three times as likely to be killed by respiratory diseases, with lung cancer the biggest of those killers.

More detail here

Apart from the need to point fingers at those who produce the food we eat and address issues surrounding cosmetic surgery (then hold the perpetrators to account), the general tone doesn’t necessarily provide a balanced and objective viewpoint. So are they just scare stories? Articles like these are the cause of genuine concern and panic among those worried about cancer, so what should we actually believe, and how much should we be concerned? There are people who believe that ‘all food causes cancer’ (fill yer boots with articles on the web), and those who swear that certain foodstuffs contain miracle cures (see more details here), but who should we look to for clear and accurate guidance? Are we letting articles like the ones above cloud our judgement?

Having had a go at the press, it still pains me that thousands of people in the UK die unnecessarily because they are too scared to mention early symptoms of cancer to either family members or their doctor. A recent survey of 2,000 for Cancer Research UK suggests 40% might delay getting symptoms checked out because they are worried what the doctor might find, yet early diagnosis is key to treating cancer successfully.  Once you’ve devoured the mountain of ‘information’ out there, your first point of call should be your GP if you have any concern regarding cancer: do not self-diagnose, especially via the internet. Don’t rely on hearsay, or friend’s advice – no matter how well intentioned. Your doctor is where your questions should be directed at, and never, ever be afraid to ask them!

On a lighter note, I’ve just come back from a week in Spain, starting off with a few days in Valencia. It’s the first time I’ve been there, and it won’t be my last trip. I love the city: it would not be difficult to set up home there…

Until the next time, I’ll paraphrase the wonderful Bobby McFerrin – don’t worry, be happy!

PS. A few images of Valencia:

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Soapbox time

I had my latest three-monthly prodding and squirrelling session a couple of days ago, this time with my original Consultant. He seemed happy enough with what he saw: it’s also the first time I felt completely comfortable with the nasal endoscope. All this time, it’s felt like my head is being violated and my nose feels physically detached from my head for a couple of hours afterwards. You endure the discomfort, but I’m cool with it now. Just a check on my thyroids to go and it’s ‘see you in 3 months time’.

It’s now two years since I noticed the original lump in my neck, and 19 months since I completed my treatment. As the first couple of years post-therapy are critical in terms of any reccurence, the closer I get to that milestone, the happier I feel. Now the next bit will sound like soapbox preaching, but it’s important, so please read on…

In the UK there is relatively little public awareness of head and neck cancer, but squamous cell carcinoma (HNSCC) is the sixth most common cancer worldwide. It constitutes about 4% of all cancers in the United States and 5% in the UK. Head and neck cancers often spread to the lymph nodes of the neck, and this is usually the first (and sometimes only) sign of the disease at the time of diagnosis.

This type of cancer is strongly associated with certain environmental and lifestyle risk factors, including tobacco smoking and alcohol consumption, Patients with these types of cancer are at a higher risk of developing another cancer in the head and neck area but – the crucial point – this cancer is highly curable if detected early.

The symptoms of head and neck cancers may include a lump or a sore that does not heal, a sore throat that does not go away, difficulty in swallowing, and a change or hoarseness in the voice. These symptoms may also be caused by other, less serious conditions.

I’m not writing this to frighten people: I just want to make you more aware of this particular type of cancer, and emphasise as strongly as I can that it is important to check with a doctor or dentist if you have concerns about any of the above symptoms. Who knows, you might thank me for it one day 🙂

Okay, sermon over with.

We’re soon to do a bit of sailing, this time around Sardinia and Corsica. We’ve sailed there before and had much fun, including one of the most startlingly beautiful entrances into port – sailing into Bonifacio harbour in Corsica. I’m very much looking forward to it!

Until the next time – enjoy life!

PS. Bonifacio from the air – pretty, n’est pas?

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Medicate With Tea

I’ve just come back from my latest (now) three-monthly review, renewing my love-hate relationship with the nasal prowler. A different consultant, unsure of my past notes, but reassuringly thorough during the examination. He’s happy with my progress and fields my questions with ease: I feel suitably relieved, as do the rest of the family with this news. We march on…

I’ve had a number of unusual ailments recently, i.e. ones which don’t involve winter sniffles / man flu or falling over stuff. Its never been in my nature previously to panic, but now you can’t help feel that they could somehow be linked to the cancer. I’ve since had a number of additional blood tests and examinations, but the doctors don’t feel I’ve any need to be concerned – so I’m won’t be. I still can’t shift the mouth ulcers, or the nightly dry and sore throat, but the Lymphoedema has calmed down, so the need to massage is significantly reduced, and the Kinesio tape is consigned to the bin. 21 months after the cancer symptoms made themselves known, life feels pretty normal.

At present, there is much publicity regarding cancer awareness in both the media and social network sites, with many warnings about the increased likelihood of people developing the disease in the future. We’ve been vigilant to the dangers of smoking for many years now, but we’re gradually becoming more aware about how much our diet and alcohol intake can potentially be instrumental in causing cancers. A review of how both lifestyle and diet affects the risk was published in 2011, and it found that 4 out of 100 cancers were linked to alcohol, and around 1 out of 10 cancers may be connected with your diet. Factors included eating less than five portions of fruit and vegetables a day, eating too much red meat, not eating enough fibre and taking on board too much salt. Apart from obesity and alcohol, there isn’t much specific evidence at the moment that diet can reduce cancer risk, but a healthy diet may help and it will also lower your risk of other diseases, such as heart disease.

I’ve become far more conscious of my diet since treatment ended: this doesn’t mean I’ve become a born-again food fascist, just minimising processed foodstuff and taking on board far more fruit, salad, nuts, vegetables and fish. My strangest side affect is that I’ve developed a sweet tooth: I find it hard to resist chocolate, something I could previously quite happily live without. If I come round to yours, hide the Kit Kats (other processed choccy bars are available). I’ve also developed an addiction to infusion teas (otherwise known as ‘hippy sh*t’ tea to my friends). Considering I’d not gone anywhere near a teabag in my previous 55 years, this is quite a step change.

Apart from that, things are generally steady. Cancer rarely comes up in conversation until I think about the three-monthly inspections. It’s quite satisfying to be getting on with my life: it’s also great to be going to lots of gigs again. I’d forgotten how much I missed sweaty venues with sticky floors…

Until the next time!

PS. Yes, the title is yet another song reference: ‘Medicate with Tea’ by Emilie Autumn
http://www.youtube.com/watch?v=ty33_k9iLgs

PPS. The latest use for a Radioactive Mask (no.7): take it skiing.

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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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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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