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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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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