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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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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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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