Still breathing…

An abandoned narrative of almost 3 years ago is salvaged from the murky depths…

Straight off the bat, he is still alive and kicking although he is now deliberately tempting the gods by stating that very fact. Lightning may well now strike him down – may the lord have mercy on his soul.

This does feel like a sequel of sorts. I’d just like to scratch the surface, if I may.

I have thought on so, so many occasions that I’ve lost count. Lost count on when I should pick up from where I left off with my Absolute Recovery blog.

To inform and shed light on my current state of ‘play’. I feel now is the time – if indeed there is ever a right time.

But I know you’re all busy getting on with your own realities. First of all, I just want to shout out to you all, well done for having made it this far too – it’s not easy.

We all have a story to tell – many stories I’m sure. Many degrees or depths of thought you can’t even fathom yourself? Sink into them sometimes like a cosy bed and just let them wash over you. It may feel like you’re rolling over Niagara falls in a barrel or it could be a light autumnal shower just gently peppering your face, teasing you with words, and ideas that you need to scribble down.

I get lost in my thoughts but in all honesty I’ve probably been lost there for some time now – is there anybody there?

Yep, I should get back on track before I derail slowly but surely into a ditch – how embarrassing!

You’ve probably gathered quite quickly that I’m not pushing up the daisies just yet. Hell no, although I’d like my ashes (a sandier, grittier, slightly lighter version of my current self) to be set free, off a beautiful scenic rocky Cliffside, up from the serene and peaceful cove alongside my Paa, who passed away last year – God rest his soul.

For now, my feet are still planted on the ground.

I find myself in Thailand. Let me stop you right there….

I am not a ‘sex’ tourist trawling the streets of Bangkok.

I am not lying on a beach sipping cocktails or hanging loose at some full-moon party – although that actually sounds like fun.

I don’t have a back pack with war and peace hanging out the back.

I haven’t been ordained as a Buddhist monk – yet!

Nor am I, high on a mountain top, eloquently dropping into a yoga flow, downward dog, as the sun rises with a misty fog circling my meditative space as I contemplate my navel and the promise of a new dawn.

What I can tell you is that I am in a quiet road, which is off a busy little road, which is just off a very busy main road. Scooters and pick-up trucks hurtling back and forth. The faint distance drum of industrial clatter. The birds chirping away in Thai. It’s October and the weather is getting cooler.. more agreeable, at least for me. A gentle breeze is forcing its way through the mosquito net and the fan is spinning away on number 2, just keeping the humidity at bay.

I’m sitting at my desk surrounded by bumpf, intentions, ideas and far too much procrastination – same old story.  

I recently came back from the UK with a stash of Clipper organic tea, so I am sipping away conservatively as I have a limited number of tea bags – it’s not quite a ship wrecked feeling of having nothing to eat or drink, but there are a few creature comforts you just can’t get here or if you can it’s very expensive. Tea bags are quite expensive.

I look out on to some banana trees and an Airbus 380 heading right over head. It’s a pleasant view where I can cast my gaze for a while steering clear from the hustle and bustle of real Thailand life.

Did I tell you I am a recluse?

The last 2-3 years have been eventful, exhausting, full of sadness and happiness too, in no particular order. Just that big mixing bowl of life where we get tossed and turned, and we just have to hold on, gripping the edge of the bowl. The word bowl, I am sorry, just made me think of a toilet bowl for a just a split second. Well, life can get pretty shitty sometimes let’s face it! 

Suffice to say, I am ok in the grand scheme of things. My family lead their lives, close friends drop in and out. I drop below the radar and vanish for a few hours, a few days.

So, I remain, as far as I am aware, at this moment, cancer free. Every day, in the background, in the back of my mouth lies a visual reminder that things could change…we all know that right? My conscience throws these ugly reminders right, slap bang in my face! 

I noticed a yellow spot in my mouth last December that was hanging around. You know when something’s not right, right? This wasn’t right. Turns out I was right.

Some of my cells have gone ‘rogue’ probably due to the radiation treatment, ironically (Dysplasic ) Kill or cure, huh? There are various levels of severity before it gets ugly – my last check, earlier on this year, revealed a ‘mild’ dysplasia which was reassuring, at least.

It is hard to gauge sometimes – who knows what lurks beneath. There is only so much chopping and slicing of the mouth and throat mucosa before it starts to disrupt everyday life – it is a tricky one.

It does on occasions scare the living daylights out of me when I think about the what ifs?

It could go away, remain or get worse. I remain diligent with my trusty powerful LED torch to scour the recesses of my mouth and throat which is how I spotted the abnormality in the first place. Clearly, if the pendulum decides to swing out of my favour then I’ll have to deal with it…for now I remain blissful in a non-ignorant state of WTF!

Back to me Bananas – did I mention my bananas? I have access to a banana tree which in the next month or two will be ready to hand over its bounty ! I am not a local Banana plantation owner but I have been watching a crew of local fishermen in a reservoir right outside my window who harvest the Bananas that grow around its borders – picked up a few tips too.

If you ‘Google’ map Thailand certainly in Bangkok, and its greater suburbs, you’ll see little tributaries, veins and arteries seeping through the land providing life, irrigation and a living for many, I think.

Time-out, as I send you some good vibes to each and everyone. I may not have heard or seen you for many months, lost contact but that’s life pushing us in many different directions, all at the same time.

We just have to plough through the ups and downs. May the downs be brief and fade in time and may the pleasant and happy times wash over and through you – cleansing your often tired and weary bones.

Where I will likely be in 6-12 months time – I am not sure.

I’ll continue to drive up that little dirt track just as the sun’s setting – not knowing exactly where I’m going but as long as that track is in front of me and I haven’t run out of light, I’ll just keep on going. 

There have been times when I’ve battled up a few narrow roads which led to nowhere – I’ve had to backup which was damn tricky and frustrating as hell. But you get back on track, or take another fork at the junction, cross your fingers and close your eyes . No, hang on, if you’re driving that’s just plain crazy…. No, that’s just the journey sometimes – a leap of faith is required.

Don’t fight it, don’t struggle –just take a deep breath and let go.

For now, I bid you farewell. Thanks for listening to my rambling. It’s good to fire off a few neurons on paper. 

Be safe, be happy as we draw slowly to the last few weeks of 2017.

Finally, I may jot down my thoughts and experiences of being overseas, in completely different worlds. If that is something you’d like to see, read and experience along with me then let me know.

A quick tip:

If you crack an egg into a bowl and some of the shell falls in, as it often does…you know how difficult it can be to extract the shell with your fingers, or a spoon etc – only to find you crunch into that little bit of lost shell a little later on!?

Anyway, my revelation came when I heard that you should try using the actual egg shell to get hold of the slippery bit that that drives you nuts. For years I had struggled, but now life and cracking eggs in a bowl is less stressful – yes, it requires a little technique but it works for me, at least. Just had to share that with you.

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Life in the balance blog…

3 months have passed since I wrote my blog…(feeling the sting lyrics of message in a bottle) It’s the first time I’ve really read the words. I related to being castaway, and feeling a deep loneliness and needing to be rescued before falling into deep despair and that only hope could keep me together.

I was never sure about the true meaning of hope. I remember talking with a good friend of mine a couple of years ago and she was filled with hope about something very particular in her life and I remember thinking that hope, at that particular point in my life, had quite a passive sense to me. I just hadn’t realised what a strong word it is and its many connotations, but it is something very powerful that, in fact, I had always had and still do have – hope. The last 12 months have shown me the true meaning of the word hope.

So, 3 months, or 12 weeks…..yep, I know what you’re thinking 7, 257, 600 seconds. Please don’t check my maths, but if you do, try it the old-fashioned way with a pen and paper – good old multiplication – I’ve still got it right?!

It’s a bleak Saturday afternoon but all’s well – just taken the edge of my hunger with a left over Chinese and a little soy sauce to lift the flavours, finished off with sipping a hot cup of tea – simple pleasures!

I think my writing days have come to an abrupt halt – the hot cup of tea which I was enjoying a matter of minutes ago is suddenly a distant memory and all that remains is a cold empty mug – I’ll have to disappear and pop the kettle back on to help rekindle my writings – why don’t I make a pot of tea?!

Today I rest easy, real easy. Nothing can phase me today. I am feeling a tad drained emotionally and physically, but all is truly well.

Yesterday I had spent a rather unsettled hour sitting in the Ear Nose and Throat waiting room, waiting, of course, to see the Head Honcho about the results of a CT scan of my chest I had last week. This was a scan I had been waiting to have since October last year as the 3 month post MRI scan had shown a hilar node deep in my left lung. The docs did say that the likelihood of it being connected to my head and neck was unlikely but of course it’s a shadow that’s been hovering over me ever since.

I received a call from one of the surgeon’s secretary’s a matter of days ago with an appointment to find out the results – a wave of dread, I have to admit, washed over me for a little while as I came to terms with the reality, or possibility, of what could be – after a while I defaulted back to my “whatever happens, I’ll deal with it” mode.

Just to say that my lungs have been playing up these last few months, but they’ve never been great – possibly a weak spot of mine, but when your chest sounds like an old classic car that’s just been pulled out of a garage after 40 years in storage and then in the hope that it will turn over by yanking the crank handle to bring it back to life, that’s my chest – failing that I sound like I have genuinely smoked 60 a day for the last 40 years – I’ll send you a sound bite, you be the judge! I have met many people with a similar lingering chesty cough these last few weeks– a dry, deep hacking. By now you get the picture, so I’ll stop elaborating…

At last it was my turn to be seen, I sat down and the doctor starting asking me about my chest and how I was feeling… I felt immediately agitated. I thought he would tell me about the result straightaway. I waffled for a minute or two, which seemed like a lot longer, before he turned around to the screen and explained that all had come back clear on my lungs – no metastases or anything sinister lurking about. As I write these words, I take an involuntary deep breath and sigh. I remember constantly glancing at the screen with all the medical jargon basically saying all was good.

I think at that moment I was stunned and ecstatic which produces a strange state of hypnosis – it’s like the body and mind are making sense of what has just been said before I can bring them back on-line and start functioning again – i.e. stringing coherent sentences, at least for a little while.

A very close friend of my father’s texted me yesterday and said “ Ade, you’ve dodged another bullet” I like that expression, and it resonated with me alot as she had very severe bowl cancer over 16 years ago and is still alive and kicking! If life really is a lottery then she got all 6 numbers!

During yesterday, and the evening before, I was in a strange state. I felt like everything was once again hanging in the balance and that my sense of normal, that I had been getting used to these last few months, could possibly and irreversibly change i.e. be brutally swiped from my grasp, that unsettled me greatly but I knew there was nothing I could do other than drop a little deeper into my silent space in my psyche and give myself a pep talk.

I know life is in many respects always hanging in the balance – the swingometer of fate in the background swooping back and forth. Denial and positive thought spring to the surface. As precarious as things can be sometimes I would rest assured that somehow things will work out in the end – but to what end is that? (Discuss) I felt like the university lecturer in this moment…

Life can turn on a sixpence, just like a helicopter ride I had recently. The pilot faked a stall and we dropped down seemingly out of real control but just at the last minute the joy stick was pulled back and we softly regained power and with a quick wring of the throttle up we went. Hanging by a thread, or on this occasion a rotor blade, but I had faith – I wasn’t in control but I enjoyed the ride. I even thought about dropping out of the skies at a 1000ft, cruising at 90mph thinking to myself that wouldn’t be a good scenario but I still envisaged landing somewhere soft that would break our fall and by a miracle of fate we would survive with just a few cuts and bruises.

I was working yesterday morning & afternoon up until a few hours before I got my results but I was strangely calm. I was at a local office doing chair massage. I felt surprisingly engaged and in the moment with my clients, which is a great place to be and is why I do what I do – I was truly in the moment.

I felt a little like a dead man walking, but at the same time I was very accepting of my fate and that what will be, will be – an almost calming sense of my own mortality knowing that the spark of life which remains so powerful in us all will no longer, at some point, fire up before we shoot into the ether as sparks of energy – that’s a given. So when things hang in the balance these are the thoughts that roll through my mind, trying to make peace with the reality of life in all its raw beauty and ugliness too – trying to find a balance.

That’s what life is perhaps all about in many respects coming to terms with the balance and imbalance of life with its ups and downs. I take solace in this fact and it makes me more aware of being in the moment but at the same time of not being too attached as each moment in life is transient and passing – it comes and goes the ebb and flow of life.

I’ve just popped on my headphones, listening to Ed Sheeran… my daughter mentioned this guy a while back but I didn’t pay too much attention. However, on a recent trip to the USA, I was listening to BA’s music collection and I came across his album X – some great tracks.

I don’t normally listen to music when I’m tapping at the keys so it’s a bit of an experiment…

I found myself in a rather precarious place last night, outside my buddy’s flat, midnight, cold biting wind, I was pretty tired and ringing at the door, long story short, things apparently at the time didn’t swing in my favour and I found myself turning on a sixpence and hightailing it back to whence I came. All I really remember is thinking, I am alive and kicking and nothing will phase me at that moment.

Things didn’t swing in my favour at that particular point but life was seemingly hanging in the balance a matter of hours before and from then on everything else was trivial, insignificant and didn’t matter. As I stood there on the spot, I took a deep breath of the cold wind only to see a young Taiwanese guy come up to me asking where the nearest bus stop was, he was lost, and his phone had died and he couldn’t hook up with the friend he was meeting as he couldn’t remember their number. I remember thinking that this guy is really in a vulnerable position. It was funny because I couldn’t really do a lot with my predicament, a tad lost, but I could certainly help this guy out and so I found him a safe space to get himself sorted. Good deed done for the day. A late night but refreshing!

So 3 months later my hunger, appetite and tastes buds are back and I am slowly putting on weight. My mouth often feels like someone has just stuffed a towel in it for half an hour – if you fancy experimenting please give it a try and let me know – it seems to be the only way to describe it. I have other symptoms that come and go regarding hearing, muscle tightness in my neck and jaw, swallowing etc but that’s the just the way it is. I met a guy in the hospital yesterday who had only just recently had his feeding tube removed after 4 and a half years! On the upside, he was still alive and kicking too.

As I slip back to into my old ways (normality) I am aware that I have acquired a new hotwired, neuroplasticised part of my brain that helps bypass the older networks that help me reflect and move forward in responding, rather than reacting to whatever life throws at me.

Having just written the word ‘throw’ I had this great image of food fights, i.e. Tiswas and custard pies to la Tomatina in Spain, the great tomato food fight where a small village grows from 9000 to around 50,000. I am not big on crowds these days but that looks like a heap of madness that I am wholeheartedly up for!

That is the way my brain has always worked and is wired – I go off at a tangent, a vivid imagination perhaps. I was working with a gal the other day, and I was admittedly skylarking around. She looked up at me and said “Ade, you’re mad”. It stopped me dead in my tracks and put a big smile on my face. At that moment, I threw my hands in the air and agreed with what she said.

I spent the latter part of last year recuperating and Christmas 2014, I think, was one of the best. I feel very privileged to have spent precious time with family and friends to round off what was a rough year from the get-go.

I am officially penniless having not worked for at least 5 months but I am picking myself up and dusting myself off but that’s fine and an obvious knock on effect.

“That by which we fall is that by which we rise” (tantric saying) I am sure Confucius said something pretty similar too, but you get the gist.

What I really want to acknowledge is the resounding love and support I have felt from my family, friends, work colleagues, clients & acquaintances alike from financial support to profound words of encouragement, handmade cards of support as well as a couple of beautifully handmade notebooks with which I wrote in daily and still do.

I know the challenges I have faced have had a huge impact on my family who have faced their own challenges in trying to deal with the immediate effects of my illness whilst trying to carry, on as normal, with their own lives.

The fear, the unknown, the helplessness but ultimately hope that I have felt has resonated far beyond whatever I could have possibly envisaged.

The goodwill, generosity, empathy and kindness of others has played a huge part this last year and genuinely touched my heart very deeply.

I want to thank you all for the tender love that I have experienced in so many different ways.

I feel refreshed, blessed and remain evermore humbled by the breath of life.

Love.

Ade.

FYI:  I changed my cheesy smile photo to a pic of me on the Shropshire hills, several years ago. I was on the Long Mynd, it was an early Sunday evening with the sun setting – a biting, fresh breeze. Just me, nobody else around apart from the wandering sheep. The silence was deafening and I stood there for a long while soaking up the atmosphere and realise now that back then I took a selfie! I lived in Church Stretton, as a boy and was dropping into to see my mother after a long drive from Cheltenham before heading back home to the Surrey hills.

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The count your blog and blessings blogger…

Almost 2 months have sifted through my fingers. I needed a break and have just returned from sunnier climes back to the autumnal glaze of the beautiful British isles.

So in this moment, it’s the end of the week and the beginning of the weekend – happy times!

I’m popping on my cardi and slowly rotating the thermostat to hear that satisfying ‘click’ that the heating will kick in very shortly.

Beginning to run my winter checklist through my head – gloves, scarf, heavy jacket, umbrella and the nearest open fire I can find – cold but cosy times ahead which we have to embrace.

I went to see my oncologist over a month ago now for the results of my 3 month post MRI scan.

Great news – I am in remission! The scans are very thorough and it also showed up a lymph node in my chest. The Doc said that the likelihood of being a connection with my head and neck is remote which was good to hear. I guess, if there was a real cause for concern there’d be an immediate follow up.

My chest is somewhat prone to bronchial troubles now and then which may be the reason for the flagging up of the chest node. We forget just how amazing our body is, continually fighting infection and working away 95% of the time to keep us moving. The lymph glands are no doubt firing up all the time keeping us free from any nasty things potentially lurking within.

I will now return to the Ear Nose and Throat consultant at my local hospital for a monthly check.

A CT scan will be arranged for January just to see what’s what. Yes, it’s a slight cause for concern but you have to trust the doctor. Of course, that’s not to say I won’t mention it to the ENT doctor and keep a close check on how I’m feeling.

On the whole, I am feeling thankful, fortunate, and most of all I count my blessings, daily.

I look back and count the weeks that have passed. How poorly I was, how weak I was, how withdrawn I was, but how hopeful I was too.

It’s still early days but those ‘early’ days of treatment feel like a chapter of time I’d like to erase in many ways. I handed back a huge big bag of medications to my local pharmacy to dispose of (anti-sickness & constipation pills through to pain killers ranging from paracetamol to morphine) I had them lying around just in case I needed them. They haunted the corner of my room where they sat and I wanted to be rid of them – that’s how I felt in a moment and I did exactly that.

I thought somehow that all the events of this year would clarify and underline things in my life – that I would feel enlightened, or charged or infused with another energy or drive to make my step into the here and now and beyond somehow clearer.

I have had a few mad weekends of immense energy with the desire to sort, sift and clear things up around me, but also in my head. As I sit and reflect, it feels like writer’s block. I don’t know what to think, say, or do in many respects.

Am I trying to come to terms still with what’s happened? Trying to make sense of the big black cloud that enveloped me and is now thankfully disappearing into the background – but where do I go from here? What do I do now?

I’ve always been a restless soul and now I feel more of a restless soul in many ways. It’s hard to establish a sense of what now. Have I ever really done that before in terms of my life and the bigger picture of one’s own mortality? About making the most of each day and perhaps planning some big adventures I’ve longed to do, or actions that will somehow help make a difference to other people’s lives.

Maybe it’s about me making some sort of a mark in my life – having a real sense of stepping out my comfort zone and acting upon strong wishes, or desires that I have held at bay, restrained from my own daily reality of routine and responsibility.

Putting my cancer under the microscope and understanding the ‘reality’ of HPV – Human Papilloma Virus. A virus that is rife and runs through all our lives without even a thought most of the time.

I’d like to, if I may, just bring to your attention the current battle to get boys vaccinated against HPV.

There is a website called http://www.hpvaction.org where there is a parliamentary petition that can be signed called “ IT’S TIME TO VACCINTE BOYS AGAINST HPV INFECTIONA AND CANCER – SEPTEMBER 2014.

There are a mere 2000 signatures so far and a further 92,000, I understand, are required.

It’s well worth a read to understand the key facts: (Taken from the website with the necessary link)

HPV (human papilloma virus) is very common and most men and women get HPV at some time in their lives. HPV usually never causes any health problems but, for some people, infection with HPV can lead to the development of certain cancers (cervical, vulval, vaginal, penile, anal, head and neck) as well as genital warts. About 5% of all cancers are caused by HPV infection.

HPV vaccination at the age of 12/13 can significantly reduce the risk of developing disease and vaccinating both sexes provides the highest level of protection. In the UK currently, only girls are vaccinated through a national programme generally delivered in schools.

Australia has recently started to vaccinate both boys and girls.

Boys should now be included in the UK vaccination programme:

• To protect as many women as possible from cervical cancer.
• To protect both men and women from other HPV-related cancers.
• To protect both sexes from genital warts.

It is unethical to exclude males from a straightforward, risk-free and relatively low-cost health programme that would prevent cancers and improve sexual health.

This petition has been organised by HPV Action, a partnership of 22 patient and professional organisations that all believe both boys and girls should be vaccinated. For more information about HPV Action: http://www.hpvaction.org. Twitter: @HPVAction
Donations to support HPV Action’s work are very welcome and can be made via JustGiving: http://www.justgiving.com/HPVAction

I wish to bring my story and concern to the attention of the local press in the weeks ahead to bring this to light and help educate a public who may have absolutely no idea about HPV. You then read about it and realise that this is something big and growing insidiously.

I feel like I’ve just administered a party political broadcast and hope you don’t mind me sharing my concern with you. If you feel the need to drop me a line at any time regarding this please do. My knowledge is limited but what I have gone through and read about means that I will try to do whatever I can to bring it to people’s attention, in any way I can.

For now, I will count my blessings each day and just try to regain strength, weight and energy to battle on like we all do- oh yeh!!

Finally, Christmas is coming – oh yeh to that too I hear you cry!…no, please don’t cry, it’s not that bad is it…???

I popped into our new local Waitrose yesterday evening when it was quiet and stumbled across a packet of 9 mini short crust mince pies ( I’m quite particular about me mince pies you know) – these hit the spot – ding dong!!

I’ll be selling you car insurance next…

I hope that my ramblings find you all in good spirits.

Take care, big hugs and speak soon.

Ade.

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The damp day blogger…

Blimey, is it me or is it getting a tad nippy now as well as being a particularly wet day, today – bank holiday Monday that is.

It’s been about a month since I popped a few thoughts down.

I can’t even remember what I wrote? I thought it would be a good exercise to re-read my past blogs just to see where I’ve been and what I was feeling – I didn’t fancy that.

I’ve tried to get my head around the passage of time in its length, breadth and depth but I know it continues to elude me and, let’s face it, always will – a few weeks have drifted by let’s say.

I had an appointment with the cancer doc yesterday regarding the results of an MRI Scan I had 2 weeks ago – he is happy with the results – So, really good news. He is also very thorough so he wants me to have a 3 month post treatment, more detailed, PET scan which will be mid September to underline the MRI results.

In the here and now I couldn’t wish for a better scenario. It doesn’t mean I’m out of the woods yet by a long shot, but in this moment I’m writing to you now, all is good – I still rest a little uneasy and it doesn’t stop my mind from thinking of all possible scenarios, but I will have to re-adjust my way of thinking as best I can.

Of course, I am dealing with side effects that can be a real daily drag which in turn can get me down, but the flipside is that I am more aware of the when I feel quite ‘normal’ which is all I want to feel really – slowly, slowly.

I had a few questions to fire at the doc some of which just underline my own fears and insecurity – I felt like a hypochondriac! For the doc it’s more clear-cut and routine – the results are positive and that’s that!

One stark, but obvious, reminder over the last few months is that whatever has and is happening to me, I realise that life goes on regardless!

It feels quite raw and cold to surmise life in that way, but it’s refreshingly simple and thank goodness we try to keep moving – sometimes we drop off the radar either expectedly or unexpectedly, and at some point in our life we will disappear from the radar altogether – mother nature and father time’s radar! The earthly plane a mere stepping stone for perhaps another mysterious journey….

So back on earth with my feet firmly on the ground, my movements may well be backward, sideward or moreover I don’t feel as though I’m moving at all but I am, I am.

Old father time and mother nature are there for us although they may not at times appear to be playing very fair…

Life is about putting things in perspective as well as how we perceive each moment along with the emotions and feelings that are attached to that moment. To have a real sense of the ebb and flow of our psyche.

All of a sudden we can find ourselves in a place or space where we never thought we would be, ever, whether good or bad and in a brief moment we are looking at life from a different angle whether we want to or not. We all want life to fall in front of us in a certain way. We work hard at doing the best we can as we live out our lives.

There can be an awful lot of tension lying just underneath the surface that we battle with consciously and unconsciously. Sometimes, we just have to let go, unclench and feel the tension fade, even if it’s for a few vivid and vital moments to put life in a ‘real’ perspective.

So we find ourselves in a place we don’t really want to be, in the shadows let’s say or perhaps afloat at sea and floundering in the doldrums. Where there’s shadow there’s the warmth of sunlight and soon the ocean winds pick you up and up-lift your spirits.

For the last few months the weather has been truly amazing! I have been in the shadows (or let’s say shade) but that’s ok – I’ve been no action man these last few months – 4 months off work to date, an unsettling thought in many ways.

Yep, I have felt pretty sorry for myself at times, frustrated and fed up too! I still do! And that will continue…..I shouldn’t struggle with the inevitable, but be more compassionate with myself.

I am just over 13 stone – at the beginning of the year I was 15 ½ stone. I have wasted a way, I feel. What little bulk I had has been shed. Imagine, you are finding it hard to lose weight and you come across somebody who can’t put on weight – that’s me. The doc said it’s the chemoradiation and it will take time….although I still have times when I don’t have an appetite and I have to go through the motions of eating. And yes, I still don’t find eating particularly pleasurable.

I wake up in the mornings feeling pretty rough sometimes – my throat feels like a hose pipe that’s been left in the desert sun all day making swallowing and the usual things we take for granted, a tad more uncomfortable. I still feel as though I need a spittoon with me and half a gallon of water to keep my mouth from drying up. These are all known side effects of treatment and there are a lot more and sometimes I make sure I am fully aware of what’s what – I don’t want to keep my head buried in the sand for too long. Most of the time, like everyone else you just have to get on with things and manage best you can – that’s all you can do, it’s not ‘perfect’ but that’s just an illusion anyway.

There are moments where I see myself as the six million dollar man, Steve Austin. When I was a kid, I was Steve Austin, I really was. I had the theme tune playing in my head as I ran in slow motion and looked into the distance with my bionic eye and bent metal with my bionic arm – epic memories!

Not sure if Steve had a stomach peg but mine was removed just over a week and half ago which I was so really happy about. I was a little concerned that the surgeons would have to go back down my throat and into my stomach but thankfully, after the nurse suggested I have a light breakfast before coming in to have it taken out because the contents of one’s stomach can literally spray everywhere, it was a simple case of a quick snip and pushing the grommet with some remaining tube back into my stomach where I’m glad to say It left my body a couple of days later – sorted!

The stomach is such an amazing piece of kit – it starts to heal from the inside out straight away. I could drink and eat as normal. Within a few hours the hole begins to seal up and there’d be no way to re-insert the tube within 4-5 hours after the procedure.

I want to be ‘faster’ and ‘stronger’ than I was before, to rebuild myself without the help of bionics sadly, I really do but I’m still a bit of a startled bunny rabbit with some hellish bright lights shining in my face.

I feel like I’ve been slapped in the face and I honestly don’t know why? I’m left with mixed emotions and thoughts all jumbled up. Trying to make sense of what has and is happening is tricky for me sometimes.

My maxim at the beginning of the year was that I don’t expect life to be easy but I’d like it to be simple – make of that what you will for now and I’ll get back to you some time soon.

During the last few months, however, my maxim has been that whatever happens, I’ll deal with it! Sounds quite a tough, matter of fact approach and perhaps in a way it is but it’s just a way of helping set the scene for me. It doesn’t allay my fears and insecurities, but life goes on and we do have to deal with things the best ‘we’ can.

I think it’s about understanding the resources you have around you to tap into and nourish yourself with – I have always struggled with this concept but I need to do this. You have to look after yourself and that is no easy undertaking as we slip and slide amidst the daily trials and tribulations of life.

Take stock, restock and replenish and if necessary have a bloody good clear out.

That’s where I stand at the moment, a little bemused and both over and underwhelmed, simultaneously.

In the weeks ahead I want and need to return to life – as in the words of the great mars bar advert a few years ago – work, rest and play!

Big embrace to all of you who have come this far with me. I hope you’ll continue to listen in, but as I continue to resurface I’ll of course make contact with you all soon, in some shape or form.

Adex

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The Bix blogger…

I’m late…you’ve probably been wondering where I’ve been – a little presumptuous of me I know.

A few days out of synch that’s all. I did spend a mindful meditative afternoon yesterday washing my car – I haven’t done that in a very long time and it was pleasurable, and quite a nice workout too.

Tomorrow will be a month since I finished my chemoradiation treatment – 69 days ago treatment began, 27 days ago treatment finished.

And just to let you know, I woke up this morning and went to the loo and became a very proud and happy owner of a very normal poo! Oh the good life…(too much information? ) For me it’s a landmark occasion, it really is – so if I am to share a few ups and downs this is surely one of the ups without a doubt.

Quick scan:

Skinny – yes, blood count low- yes, blood pressure very low – yes, a little weak – yes, throat and mouth troublesome – yes ( to be expected) eating pleasure seriously affected – yes, sadly.

Physical state – much better in these last 2 weeks.

I am sure people think I am going to look a bit of a state when they see me (which I was a matter of a few weeks ago without a doubt) but the few people I’ve met have commented on how well I actually look considering…and I am beginning to feel a sense of ‘normal’ which comes and goes – perhaps the usual ebb & flow of the human psyche and the acute sense of my physical body can slow the process down though.

My plan is building strength and eating more – the sooner I do that the sooner I can have my stomach PEG removed which will also be another landmark occasion.

My mind is a little preoccupied, frustrated to a degree but more upbeat – thinking about the weeks ahead, opportunities for a few days away, thinking about work and a point in time in the next few weeks having seen the doctors etc that I can, having regained some strength and weight to enter a new phase in my recovery, to get back to normal.

I do feel a sense of urgency now albeit I am not quite ready to rock and roll! But to get cracking with a few things I need, and have wanted, to sort out in a while. Medically, I think I will have a scan in the next couple of months to see what’s what. Meanwhile, I’d like to use the time ahead effectively so when I reach the point of knowing the results of my scan, I’ll be in a position of strength, once more.

Current obsession: Food. The only food that I can readily eat without any reservation or hesitation, 24/7, is weetabix. There’s something about the texture as you add the milk before it gets too soggy. It’s cooling and quite satisfying – who would have thought it, although I did grow up on cereals of all varieties. I remember going to France as a young lad where cereal, at that time, was non-existent so being presented with bread and jam was shocking? Du pain et de la confiture sounds more appetising right…

The hunger pangs are very slowly resurfacing which is difficult if you want to put on weight and keep the dieticians happy in order to have my PEG removed. If I am not careful, a day can pass and I haven’t necessarily felt hungry at all. What is crucial too is my fluid intake to keep hydrated.

I am trying to find or wait for my appetite to re-kindle itself. I have tried many of my favourite foods only to find that the taste and/ or sensation, texture etc just doesn’t work – it’s a real nuisance (I have stronger words to emphasise my disappointment but I’ll keep it simple)

Not even a Steak is enjoyable, or a sherry trifle, and to add insult to injury my favourite victoria sponge with fresh cream – what is going on? (well, I know the answer to that but I just wanted to underline my frustration)

I drenched a crumpet in butter and maple syrup and couldn’t taste that either although I did eat half and soon after one of the vultures ( a member of my family) swooped down and demolished the rest.

Going to try some Porky White sausages for diner, the best sausage around in my humble opinion – fingers crossed.

I will persevere, I will.

I have decided in the last few days to write a blog on a monthly basis from now on. I know there is always something to write about and clearly I am entering a new phase of my recovery. I know it is early days and I am not out of the woods yet but I will keep you posted and I may even change my mind and decide to pop a few thoughts down in the weeks ahead.

Before I step back from foreground to background just to let you know my old mobile number is back up and running: 07976 605607.

I am not that far away and you can drop me a line, call me, text me, or hook up and shoot the breeze for a while.

Take care.

Ade.

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The frustratingly slow movements of the resurfacing blogger…

Who’s counting the post-treatment days? Moi? Yep, that’s what I do in my diary, a little note to self.

It always has been day by day, and nothing has changed – in fact, it seems even more acute now with the passing of each day.

The wanting to walk before I can run, that battle of mind and body, as already stated whereby I think of doing things and then realise I need to slow down – I am certainly very far from rushing around, that’s never been my way.

There have been tangible shifts these past 7 days and I have to acknowledge that. I am not stuck like a broken record, going over the same old stuff that my mind has been plaguing me with about my situation and perhaps dwelling on the downside, the low mood, the frustrations and expectations – yet these are all very real.

I am slowly thinking a little more ahead now, slowly bringing my body in line with my mind – a driver to get the physical side of me moving – I haven’t done a lot and that has to change!

Lack of sleep is my problem – I’m restless along with an agitated mouth & throat. I have taken morphine, but I don’t want to rely on that for my sleep, clearly.

I really am out of sorts & out of sync – a bit like a dancer with no rhythm desperately trying to keep in time with the music and his fellow dancers, but it just aint happening.

My out of sync may not be as noticeable on the outside – I have walked a little this week and been in communication with one or two people – I haven’t held conversations like that for best part of 3 months.

I monitor and try to observe myself – that’s tricky, am I fully present? I am trying to be. What do I say to people who I haven’t seen for a while? Lost for words or how to sum up these last few months to somebody – yep, tricky too.

I don’t want to make a big deal of it, but I certainly don’t want to underplay how tough it’s been either.

Ok. This week kicked off with a haircut which made me look and feel so much better, in my opinion – the scarecrow look had to go. I knew the radiation would zap my beard and I can now report that I no longer have a beard – just the possibility of a moustache and an inch of sideburn. I haven’t shaved in 3 weeks and I don’t need too. I liked the possibility to grow a beard when I felt like it, but that’s history now, but I do feel more clean-cut at least, on the upside.

The hairline at the nape of my neck has receded by about 2 ½ inches which feels odd too – I have been pulling out my hair over these last couple of months.

Am I slowly resurfacing – yes, I think I am. Communicating a little more and a little better.

Several months ago I built myself a one man submarine and began to slowly plunge the ocean depths – the abyss. I wasn’t sure of my destination or what would happen along the way or even when they’d be the inevitable thud of hitting the ocean floor.

It has been a claustrophobic journey for me so far but of my own choosing. The one man vessel meant there wasn’t room for anybody else. If I could imagine the dimensions they’d be barely enough room to stand up and perhaps a few feet to pace up and down. No gauges, no controls that I can visibly see and operate. It operates by responding to my body-mind emotions.

It envelopes me. There’s a small porthole, but its dark out there and I never really know just how far down I am or whether indeed I am actually moving – maybe I am in some sort of suspension and not actually going anywhere?.

Perhaps I needed to get deep enough to avoid the barrage of depth charges way up on the surface. The deeper I sank the safer, somehow, I would feel.

I remember watching the epic adventure of Das Boot, a crew of German sailors in a U-boat hunting ships to sink. The endless waiting, the tension was unbelievable. They were hunters but they too were also being hunted. That feeling of resurfacing, – up periscopes and then opening the hatches having had to fathom the depths for days, weeks having been pummelled, crushed and bashed about by the endless depth charges they’d encountered along with the immense pressures of the ocean depths – not much life down there, it seems.

I am slowly filling my lungs with air and very cannily taking a look around – I just had this sweet image of a meerkat poking his head out of his burrow very carefully, but with razor-sharp movements, checking his surroundings – is it safe to come out?

There will always be some kind of inevitable dangers in the world, but you have to resurface and get out, in your own time to feel that ‘rush’ once more. We know in our daily lives there are all sorts of possibilities and encounters that could be detrimental to our mind and body but we filter most of that out and perceive the world in our ‘present’ mind, take a deep breath, in a way, and go out and do what we normally do.

When I went back to see the nurses this week for a check up I walked into the hospital and realised how claustrophobic it felt – I don’t want( and never wanted) to be there. Not underplaying the marvellous job all the staff do but I felt like a prisoner who’d been temporarily released or on parole and I now had to come back in. When I left an hour or so later I walked outside – I had resurfaced and it felt good to be out of there heading back to some sense of normality. I have spent 2 months, day in, day out in the hospital, but at this stage I’ve been demobbed and debriefed awaiting a few more details before I can hopefully get back into civvy street. I can’t help but use these military analogies that’s my father’s influence, as an ex- naval man.

I haven’t totally resurfaced yet I am still using my periscope to look around before I make any sudden moves.

I am moving forward but being very self-critical means I don’t accept or take on board these degrees of improvement. It’s not that I am negative but unless I am heading at full speed everything’s just a nuisance and slows me down. I finitely scan and observe my body, looking, watching and waiting for the shifts – I am over the worst bit, which is what the nurses told me and that’s nice to hear, finally. I am in a better place now physically than I was just 10 days ago – it’s the mental adjustments that are also proving a challenge and I think that’s why my mind is restless and I need to slow it down in-line with my body and not the other way round.

Finally, I know if I resurface too quickly I’ll get the bends! I have had a little of the bends already…I need to find my bearings and re-orientate myself!

So, whether you’re diving deep or slowly resurfacing, try to remain calm and collected.

Ade

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Tunnel vision blogger

10 days since my treatment stopped – that’s one of the ways I look at it now. It gives me a sense of leaving that part behind, and the further I am away from that the better. Before then I was racing towards what was the finishing line, my last day of treatment.

Now I’m in the middle of the “worse before it gets better” period which has been really tough too.

I find myself in a tunnel, looking back and seeing a glimpse of light from where I came from only just recently; as I look in front of me I see a bigger light which really draws me forward – yep, I’ve got some way to go but that sense of reaching another particular point, not necessarily in time but in my health and wellbeing.

Time can become a nuisance now, just as it was in the middle of treatment.

My treatment has stopped – it’s all up to me and my body to do the rest I guess, as it has been doing. There is that restless sense and energy within me that wants to get back to ‘normal’ again – but with that comes its own set of questions and understanding for the future and more importantly the here and now. Will things be the same again – on certain levels, yes I reckon, but on others no.

At the moment, it’s battle of mind and body, each with their own agenda.

I have been drenched in toxins and baked in radiation in the true light of day – my body needs a break but it needs encouragement and a boost too! I have been very weak these past few months – I have lost weight and muscle mass too, although I didn’t have that much to begin with!

I have to build myself back up again – I want to be the six million dollar man – stronger, faster better! No pressure there then.

I have to push myself now to get out and about and walk a little – get the physiology moving. I have been a little nervous to stray too far – sounds crazy but that’s how it has been.

There’s a pressure almost for me to get back up and running asap – it’s what is expected of me. I have a life to lead and my world of massaging and my clients to get back too. I had plans to venture off this summer and other plans in 2 years time – they were suddenly shelved but I want to pick up and run with those again – all in good time.

What I really want to do is to simply sit around a table whether family or friends and just eat and drink – just to enjoy and savour each mouthful! Precious moments… (without a plastic tube sticking out of my belly)

Over the last few months I haven’t given Cancer too much thought – yes, it’s evidently there but I haven’t dwelt upon it too much – there doesn’t seem to be any other option than a clean bill of health. However, I know my mind and it does think about all eventualities because that’s how I deal with things – contingency plans. Certain thoughts do make a dramatic entrance at the doors of my mind – bang, bang rather than a polite knock, but I’ll cross that bridge, as and when necessary.

My body will do its best, and it yes it still needs a lot of encouragement to get back to a health I’m more familiar with.

I’ve been institutionalised in one way or another these last few months – I need to slowly reintroduce my mind body and spirit back into the world I left behind recently – it really feels like that and I know it will be no easy undertaking either.

I was quite “down” this week, really tired but I have kept occupied one way or another and had some still, quiet and peaceful moments too.

Little by little, day by day there are subtle shifts – too damn subtle for me, but nevertheless there is a healing underway.

It’s the subtle things that actually make the difference that’s for sure – we all want the tangible, gross things that make an impact, a change, something ‘obvious’ to the eye, to the mind, but energy works on such subtle levels and vibrations that by and large will somehow pass us by, yet there they are working away, ever-present, pervading and powerful.

It’s when I sit in silence and bring myself back to my breath, settle into my body and take a few moments do I truly realise the power of stillness.

I hope you have had or will have a few still moments too in the days ahead – just to be, rather than do.

Ade

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Syringe city blogger…

Its been a long day like most days this week – I don’t think I’ve slept properly all week. This morning was beautiful and quiet – 5am, I decided to get up which was more comfortable than staying in bed – slowly slowly I did my morning ablutions.

The next time I looked at the clock it was 9am and it felt like midday. I’ve always loved the early mornings, having a sense that you’re up and about before the rest of the world wakes up.

I’m tired but sadly not sleepy tired – I remember the expression of being overtired. It’s been a nonstop clearing, gagging of gunk from my throat. I keep in mind that my body can now take stock and slowly bring itself round a little more and begin to make a shift from the relentless chemo and radiation to relax and repair.

Everything is now more acutely sore with my whole body getting involved with the retching as I get rid of the stuff from the red roar linings of my throat and mouth, I guess.

Just to jump the gun for a second, I dropped Vic a line who was 2 weeks ahead in treatment – he gave me a heads up on what dose morphine he was taking at night to knock him out – well, it’s a pretty damn strong dose and it’s something I need clarifying this week – the words knock him out sounded quite sweet as I have been at the will of my blitzed body.

The skin on my neck reached a point where I thought it would crack and blister just before the end of treatment but I was determined not to let that happen. The radiographers and nurses began to comment – not a good sign. I had, religiously for the last 2 weeks at least, every 2-3 hours, put cream on my neck and shoulders-getting out of bed and applying very methodically the fridge cooled cream onto my red roar neck and shoulders (down to my collar bone where the skin is quite thin) During the last few days it is not as angry but very dry and reptilian looking – sore and itchy bits but it’s good to see quite a quick transition from the way it was a week ago – although with the weight loss my neck is looking a tad scrawny!

It’s a funny thing, you say to yourself all is ok – you’re doing well! I was told that on several occasions which was nice but suddenly I wake up with my neck feeling very sore, tight, hot and uncomfortable. My throat became excruciatingly sore with the simple act of swallowing – taking a little mental preparation as I brace myself for that sharp and rasping pain that kicks in – as each day goes by I look forward to such things slowly slowly diminishing…

I described the discomfort as akin to trying to swallow a golf ball through a toilet roll lined with sand paper lined with scorched rice paper (that would be my skin)

Basically, I need to get a good 2-3 weeks under my belt for things to calm down – the goal posts of course have shifted once more, as I knew they would – natural progression.

Its been 4 days since my last treatment– 4 long days but when deprived of sleep it really doesn’t help matters.

The treatment has finished and I do feel a lot of relief, I really do – now I can try to rest easier in my discomfort.

My time is broken up with pumping protein shakes into my tube, making sure I’m taking the required amount along with my fluid intake too. I have no hunger so it is a simple regimented requirement that I take so many shakes a day – they are the life saver.

The dietician mentioned that some people need to be weaned off them and I can understand that. Those natural urges aren’t there at the moment – that’s a concern. What if I no longer have these urges? Seems a bit of a silly, yet obvious thing to think. I watched my family tucking into a juicy chicken the other night anticipating when that time will come for me to rejoin them, once again –For several weeks I haven’t joined in when they eat, I just can’t…

The full impact of no taste buds, and saliva glands that have now packed up with an intense dryness, odd tastes & textures along with a numb tongue that has seen and felt better days, leaves me feeling quite low. I know I need to get a few months under my belt, but to never have a sense of normal in my mouth again is hard to comprehend. I remain forever hopeful that in time things will heal. I am also aware of having to adapt meanwhile and put things in place to help myself as best I can. It may sound very trivial I would imagine, but it really isn’t.

When I first met up with the multidisciplinary team there was a speech therapist – speech therapist, I thought? But with all the symptoms kicking off big time this week along with a very sore mouth and throat, (even the dribbling too which is very embarrassing). I can see how very easily your speech can be dramatically effected -I can’t talk for too long – a few sentences then it becomes quite hard – very frustrating and it makes me reluctant to engage in conversations at the moment – at home I can thankfully moan, groan, grunt or nod – no real change there then!

I also have to remember to swallow, but because it’s so uncomfortable I don’t really want to. There are high level fluoride toothpastes and gargles I have to use to keep my mouth and gums healthy. After mouth washing, gargling and tooth brushing etc it doesn’t take much too agitate the uncomfortable and inflamed soft tissue linings of the mouth and throat activating all the gunk more so at night – always more at night right!

I seem to spend a lot of time hanging over the bathroom sink retching and grasping at all the gunk to spit it out – there are times when it feels good to bring it up but once again not a pleasant experience with spasming muscles all doing their best to extract all the nasty gunk from throat and nose channels into my mouth – sucking up glue through a hand-held vacuum cleaner comes to mind. I have got use to it now and there’s that fine line between gagging and managing to cough up the gunk without being sick.

So, the plan tonight, all being well, is to knock back just a little more morphine to get more shut-eye – it does feel good to catch yourself having drifted off for a while – more of that please.

And finally, on a lighter and lovelier note – the playgroup in the meeting house next door to us (to which our cottage is attached) have started to make use of my discarded syringes, the ones I feed myself with – yes, they are cleaned and sterile before I hand them over! They are now little water pumps that the kids can have endless fun with. It’s been great seeing the kids in the garden all herded around the water tub frantically filling up their syringes and squirting them into the air and at each other!

Anyway lovely people have a productive and enjoyable week ahead and maybe, just maybe, if you see a water pistol go buy it and pop it in your pocket just in case you get stuck in traffic on one of our hot and sticky days and there maybe somebody in the office that, quite frankly, needs shooting with that there water pistol you know what you gota do – yeehaa! (sorry, that’s very irresponsible of me to suggest or condone such a silly senseless act!!)

Should you have any problems acquiring the said water pistol, I do know somebody who has an alternative – just call 0800 I’VE ALWAYS WANTED TO DO THAT, and they’ll be right with you!

Ade

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The “ it will get worse before it gets better” blogger…

I have heard this line a few times and it always fills me with a little angst – perhaps we can all relate to this in some shape or form.

For example, I can think over the years about chronic mouth ulcers. They would appear either by their own accord or through some toothbrush trauma were you stab your gum with one’s over zealous tooth brushing technique – please tell me I’m not alone here…

I knew for a good few days everything would be fine but I also knew that as time went on I would begin to feel them – they could last easily up to 2 weeks or more.

The pain would increase and my mind would follow and no matter what I put on them it made no difference – they just had to run their course. So, there would be a week perhaps where it would be really uncomfortable and I felt they’d never shift, but then suddenly that shift occurred and they didn’t feel as sore – that edge had gone, relief!

The accumulative effects of treatment means that I need to get 2-3 weeks under my belt after treatment has finished before things begin to, hopefully, settle down – the doctors said 3 months recuperation, and in the grand scheme of things I am not surprised.

I only have 3 radiotherapy sessions left this coming week – Monday, Tuesday and Wednesday.

I met Vic, who was 2 weeks ahead of me, on his last day – fatigue and pain had really hit him during his last few days, it had gone up another level of pain. At that point, just like when someone’s telling you the ending of a movie you haven’t seen yet, you feel like covering your ears and running away. I gave Vic a sympathetic smile knowing that perhaps my time would come too.

I sometimes see a new face, a chap about my age who has just started his treatment – I sit in the waiting room and take a swift glance at his neck – yep, he has got a lump too, quite noticeable. In my mind, I contrast and compare and analyse – similar age, the lump is on the left side of his neck not the right, positioned slightly superior and posteriorly too. I wonder what’s going through his mind. He sits there in silence with his partner – I assume in my mind that I have a pretty good idea what’s going through his mind at that moment – he has his own battle going on, I can sense it.

Meanwhile, the old boy brigade are there trooping the colour in their fine display of dressing gowns – all being zapped in the prostate! I’d say their average age must be 65-70 or thereabouts .I wonder about that their treatment too – how are they positioned on the machine to target the prostate?mmm…

There are, I think, 6 or even 7 Lineac accelerators (LA) machines It’s akin to an airport lounge. You sit, you wait. You read a magazine, you restlessly move about, have a drink waiting for your gate number, if you like, or one of the radiotherapy team to call your name. You see people walking through the gates but there are lots of radioactive signs about and the gate is closed now as that individual embarks on their journey – there’s undoubtedly that edge with the nerves kicking in a little, just a little.

Whats been nice is, although the radiotherapy team is big, you get assigned, for most part, the same machine meaning you get to see and recognise the same team members – LA 2 has been my gate for the last 6 weeks.

So once again, a bit like the airport lounge, these are the equivalent of the planes that are in continual use, and are therefore prone to breakdowns, software malfunctions and delays too! Sometimes the lounge can be empty at other times bursting at the seams.

There is a check in desk too where you pop your name in the computer, your details appear and you click to confirm and take your seat in the lounge…I digress.

I was up until last week trying to get a little weetabix in my mouth and down my gullet, but things are now “uncomfortable”, shall we say in my mouth and throat so 100% liquid vanilla protein shake man – that’s me!

I have had quite a busy week and glad to have made it through to the other side, intact.

Just as I try to pump a shake into my belly every 2-3 hours I am also applying cooled cream and aloe vera gel to my neck and shoulders which are burnt. I am fair skinned and remember when I was much younger having been badly burnt in the sun – déjà vu moment. I look like I have been on holiday, having just exposed my collar bones upper neck and shoulders to sun. It’s sore, tender and tight – I wake up in the middle of the night and early morning and head for the fridge and pull out my cooled cream which is very soothing.

…and what’s going on outside is going on inside my throat and mouth. I will spare you the details but there’s lots of coughing up some pretty nasty gunk! I was in a very busy waiting room in hospital this week and I didn’t want to particularly draw attention to myself by having to go to the loo and cough and gag whilst bringing up stuff I needed to bring up, but yep, I had to do exactly that!

Number one rule for me at the moment, never stray too far from a box of tissues. Ok, I should stop now but I feel I’m on a roll. I also didn’t stray too far from a loo this week either. I’ve never been a regular guy shall we say and from day one my poor little sensitive gut took a beating and it’s not recovered yet. For at least 2 weeks I had chronic constipation and tried everything – nada!

Cut a long story short – I was prescribed various medications which weren’t working, so I had a chat with my doctor and he gave me some suppositories.

I had a giggle with the nurses and they handed me over some gel and latex gloves – very happy to accept them and get home, pronto, in the comfort of my own bathroom and, as James Brown said “ take it to the bridge”.

If you didn’t already know a suppository agitates the inside of your lower bowl and gets the muscles moving – within 10 minutes things were happening. Let’s just say they really helped and now my bathroom cabinet is proud to display, gel and latex gloves to boot, the suppositories – just for a temporary period of time, you understand.

Enough of this toilet talk.

Back to food. I have to honour my mother’s meringues. She came to see me a few weekends ago. I have always loved meringues with fresh cream, and she, of course, makes the best meringues. A tub was left full of tempting delicious crisp and chewy meringues – I can’t eat them at the moment but my daughter, Hannah, found the tub quickly enough – hopefully they’ll be some left for me too!

I still find it very hard and frustrating to see all around me tucking into their food. In fact, I’m typing this upstairs in my bed, as my daughter, Sophie, who has popped down for the weekend, is making a bacon sandwich – torture! Looking at the clock, I best be off to pump a vanilla protein shake with added fibre into my belly…

Savour each mouthful of food today.

Signing off

Ade.

P.s Here’s a temporary mobile number as my normal number is out of action for a couple of weeks –

M: 07706 183311

 

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The “Houston, we have a problem” blogger…

Just when you think everything’s going your way, right…

I had my weekly blood tests and review with the dietician and doctor last Wednesday.

My weight had dropped by about 6lbs from the previous week- I was a little anxious and figured even putting lead weights in my boots wasn’t going to help me this time!

Over and above that I have a sense of keeping my head down and keep moving slowly, slowly, day by day – fire up my ipad and have a game of solitaire – quite apt really!

That same day I got a call from the doc saying don’t come in for chemo tomorrow.

My neutrophils are low – the white blood cells that fight infection.

To have chemo they should be around 1, ordinarily I think they are 1.5 – mine were .4 so i was shocked and, of course, concerned regarding the possible implications.

What sprung to my mind was what the hell’s wrong with you man? Are you that weak? You’re going to miss a chemo? It felt like I had failed somehow – my ego was clearly clouding the issue!

I spoke with a nurse who very reassuringly explained that in the grand scheme of things ideally 5 chemo sessions is aimed for, but most people manage 4 sessions – this would have been my 5th session. The chemotherapy represents about 7-8 % of the overall treatment outcome which I was aware of and it just put things into perspective. As long as the radiotherapy sessions continue that is key!

I have, in fact, been glad of the week break from the chemo as I have been feeling very weak – knock me down with a feather! The doc seemed to think that all should be ok for what will be my last chemo session this coming week. It’s been really nice this weekend not to pump steroids and anti sickness pills into me – to give my body a little rest from the continual onslaught.

Anyway, I turned up for radiotherapy, as usual, on Thursday and was asked if I knew about the blood transfusion the doc wants you to have? A blood transfusion!!!………….WTF (text speak expletive)

Am I going to be drained of all my blood and have fresh blood pumped back into me I thought – crickey, things must be bad right, that’s full on! I’m falling to bits…

I eventually met up with the Doc who explained that my haemoglobin was 11.7 when they’d like it to be 12 as the more oxygenated my blood the better outcome, statistically, for my overall treatment.

As a result, this Tuesday I’ll be getting 2 units of blood – I used to give blood quite frequently many years ago and now ill be getting some back – feels quite weird to be suddenly on the front line receiving somebody else’s blood!

So the week became quite eventful – oh I forgot to add – the radiotherapist commented on my weight loss and it had been noted during the last few weeks. She commented on my neck, my scrawny looking neck as it is now. The tight fitting mesh mask has gaps appearing which needs to be kept in check. The physicists who do all the calculations may appear this week, I understand, to see if indeed anything needs to be adjusted – clearly at this point in time they don’t want to delay treatment – that would be unsettling for me but I’ll go with it this week and see what happens, its all I can do.

This should be my last full week of treatment and then it will be Monday to Wednesday the following week and then, hopefully, that will be my 6 weeks of Chemoradiation treatment completed.

I have spent the last few days religiously pumping these protein shakes into me to make damn sure I don’t lose any more weight – it’s a full-time job and I certainly feel that if I lose sight of that then I may be admitted to hospital and probably force-fed hospital mash potato 24/7?

I could make a list of all the unpleasant and uncomfortable things but I’m also sitting here mindfully, in the moment with my breath, aware of embracing the good, the bad and the ugly – to find a balance and put things into perspective – I have these moments you know.

I always try to keep in the back of my mind that whatever happens, I’ll handle it.

I don’t like to tempt the gods and rest on my laurels – yes, I’m certainly chasing the end, which is insight, but I also have to reign myself in to the here and now.

Signing off for now.

Ade

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The “gone to ground” blogger…

It’s a glorious Sunday morning. I’ve been awake since 6am. I slowly pulled myself out of bed and headed downstairs to what has become a routine of gauging how my mouth, throat and neck are feeling, along with the rest of my internal workings. It’s a bit like starting up an old pc, it seems to take ages – yes, it’s like logging on for me – on a slow computer!

I haven’t slept too well during the last few days as I’m finding that I need to sit up rather than being able to lie on my side comfortably due to restriction and congestion in my mouth and throat.

Comfort is an important word, here. You lose that sense of comfort we take for granted. You suddenly find yourself uncomfortable and you long to be comfortable again – at ease, if you like. These things become powerful thoughts & motivators to get you back to the way you were before – and not soon enough!

I have adjusted or reduced the medication I am on for a few reasons – I’m not sure but there’s a balance somewhere – It’s not a case of fine tuning but more of a “suck it and see” approach.

Even as I type this, I am struggling with a small glass of water with an added syrup laxative, shaken but not stirred, of course – down the hatch!

My day revolves around trying to eat and drink. You’d think that would be straightforward – what’s the fuss? The big deal? I find Thursdays to Sundays are generally difficult days following the long day of chemo each Thursday. I have a few days of eating a little and also taking my dietary shakes, via my feeding tube, to keep nutritional content up; packed with protein, but they lie heavy yet that’s ok.

My beard is falling out where I am being radiated – that’s a shame, I must say.

My phlegm has turned to glue and backs up in my throat and mouth and I’m constantly clearing the back of my throat which is dry, and rough. The normal act of swallowing is just unpleasant along with my salivary and taste glands which have been blasted too leaving me with a stomach churning metallic odd taste and sensation which all adds to the withdrawal of hunger and appetite along with regular bouts of gagging due to the cumulative effects of the above.

The accumulative effects of radiation are also making my skin tingly around my neck and shoulders, becoming hot and sore which I’ll manage as I go along.

So, it’s a struggle for me this week, it’s painstaking and ,as stronged willed as I can be, still difficult along with the fatigue and the lack of proper sustenance.

There’s a chap at the hospital who I started talking to and we’ve exchanged numbers and will hook up when we are both ‘normal’ again for a good meal at some point in the months ahead. He is finishing his treatment this coming week, so he is 2 weeks ahead of me. He has been quite an inspiration and has been giving me little tips about things to watch for, and how to look after yourself – he is a real trooper; Thanks Vic!

There’s an anxiety attached to this on the more serious note of not losing too much weight and not having my treatment delayed. I have lost weight and you see it around my face – my mask around my jaw has loosened and adjustments have to be made. I had a review with a radiographer on Friday which was reassuring and positive though – uplifting.

Some days, I sit perched on my bed looking out onto the world, passing by. I am there with my thoughts, in my own solitary world and that’s ok – I think about the passage of time and being in a temporary space that’s just not conducive to being part of that world, outside of my bedroom window – I’m not ready yet; accepting to rest and recuperate as much as I can, as much as I need to.

It’s a sort of self imposed solitary confinement – me, myself and I. I think part determination and part accepting of my circumstances without getting too bogged down with the circumstances.

I know I am in the process of being treated but it is easy just to reflect for a few seconds, as I enter the hospital, or sit perched on my bed having that lovely feeling of being ‘healthy’- catching yourself and saying, “I am feeling pretty damn good today” – I look forward to that moment.

I joke as I watch my family tuck into their meals – it’s one of life’s pleasures. Those little rituals and the enjoyment of being satiated with good food and drink.

All I ask of them is to frown and moan whilst they’re eating, not to please enjoy their food, in front of me – it’s very off putting and distracting, you know!

I love a Byron burger strawberry milkshake – my daughter, Sophie, who lives in London, was at a Byron burger restaurant yesterday and sent me a pic of the ice cool, thick, and sweet strawberry shake still in the jug it was mixed in – yum. Hopefully, by the end of the summer that will be on my to do list!

On the subject of food, surprise surprise, I was listening to an audio on meditation. Cut a long story short, ham sandwiches were mentioned and it reminded me of the legendary fresh ham sandwiches my grandma used to make. Freshly baked, white bread with a little crust, very thinly sliced with a tasty layer of butter and ham fresh off the bone cut just right with a dash of mustard – heaven!

My grandfather also grew the sweetest and crispiest tomatoes in his green house which would add to the afternoon tea delight – I would like to recreate these moments, as best I can in the months ahead – perhaps little bench markers for me to get to a sense of normal, and healthy again.

I still have a sense of smell which is bitter sweet I have to say. The fragility of my stomach and mouth connection can make certain smells nauseating. I can walk by some fresh flowers and still smell their subtle scent!

I am a breakfast man, first and foremost – the most important meal of the day. I grew up on ready break, and have been a religious porridge devourer without fail every morning for as long as I can remember although now I can’t remember the last time I wolfed a bowl of porridge! Odd! Several months ago perhaps?

Here I sit with one and half weetabix, bland with a splash of sugar, haven’t eaten sugar for years like that either, and I sit and take slow mouthfuls over about 45 minutes – painful for me. I am normally a wolfer not a picker, I’ll be honest – although I am in no rush, I know that, at the moment.

I sound like I am really moaning and groaning – yes, I think I am, but I am here to share with you a little something of what’s going on – the highs and the lows, which is life and the human condition.

I do feel like the sick dog that just wants to lie down in his basket and sit it out until I feel better.

Until the next time – woof!

Ade

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Moody Blues blogger

A brief encounter…

I wasn’t too sure what to say, where to start and so as I mulled over a few thoughts in my head I decided it best to pop a few down before the moment passes.

I’ve entered into my 3rd week of treatment.

I will be honest, my mood has been low all week and I can’t quite snap out of it. The upshot being, I know, I’ve been quite withdrawn, non-communicative and wanting to be ok with Mr. Recluse instead of Mr. chatty man.

Try as I may to perk myself up there has been a longing to be a monk who can slip into a temporary meditative space for a few weeks and then just slowly come round back into reality, shake myself down and get on with life, slowly slowly once again.

There is a routine, with the daily trips to the hospital. Other than that it’s me in slow mode trying to keep moving but that’s certainly not the case, on the whole.

My life revolves around trying to eat when, for many reasons, physical and mental too I really don’t feel like it.

I won’t go into the side effects and symptoms to underline this feeding battle but lots of medications and then more medications to counter the side effects of other medications. It just upsets the gut big time and my mouth and throat are also not ‘feeling’ themselves either but it’s the healing affects I know.

It really is a battle of the mind. I am no more courageous, focussed or determined than the next man or woman. I am, I’ll admit, not that good at looking after myself. I do have my family of course looking out for me – I think I have apologized to them that if I am bit ‘off’ and not really interested in engaging in conversation – sorry guys, please stick with me for a few more weeks…

I am living day by day and forecasting a week ahead, in my mind, counting down the days.

I distract myself with music and film. I also have a little walking route I take to stretch my legs from time to time.

Come Fridays I am knocked out by the afternoon. It’s not like a sleepy tired moreover I just have to lie down for a few hours. That’s exactly what I did yesterday. I got up late in the evening and sat on the sofa, watching a movie and resting there pretty much all night, napping here and there. I was quite comfortable and having layed on the bed all evening I wasn’t wanting to head back there right away but I eventually did about 10am today hitting the hay for a couple of hours.

When I’m at hospital I just want to get in and get out, and generally I can although Wednesdays and certainly Thursdays can be long days.

On Wednesday, I ended up having a chat with 2 other guys in a very similar situation to me – all undergoing the same treatment, at different stages. A little older than me, but fit men, who have looked after themselves.

I have been shying away from engaging in conversations but we were all there at the same time in the waiting area, one guy I have seen every Thursday for chemo. Plus, Simon the young guy who is also battling but with something different – he appeared too, all waiting for our radiation treatment.

We swopped a few sob stories about mouths, bellys, feeding tubes and experiences thus far and also had few laughs too! Some nice camaraderie for a short while.

There is the unspoken word that for me is also very powerful. I know there are very much two aspects to my personality – I can be at times very engaging and out there but I am also very happy to kick back in to my quiet reflective mode and withdraw a little – I simply need to do it – a coping mechanism of sorts, I guess.

I have had a busy mind in a limbo state. It’s me in a very unsettled space – that’s it.

I have dwelt upon things I haven’t wanted to dwell on. I feel like my mind is weak and is being constantly dragged into some dark places. This will surely happen that’s what the mind does. It’s trying to find a balance, or a status quo in this limbo state I am in. To get a grip and drop down a gear – I’ve been revving up and down with my energies all week and I am tired, a little fed up and frustrated!

There’s not much juice in the tank, and I know I’m running a little on empty.

I feel like an engine that’s been pulled into the sidings off the main station for a little rest and recuperation. That sounds quite nice doesn’t it but it is also being ‘sidelined’ too. I just want to head back out, full steam ahead and blast my horn – soon.

Signing off, Ade.

 

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Blitzkrieg blogger…

As a young lad, I was always fascinated and captivated by the 2nd world war. I vividly remember watching World at War narrated by Lawrence Olivier and the distinctive theme tune.

I was a secret agent as a young boy, you know. Maybe this contravenes the official secrets act – I don’t know, you be the judge! I had a warlord ID to prove it. I spent hours drawing tanks both British and German, fighters and bombers too. I remember the war hero Audey Murphy and the movie ‘To Hell and Back’ – ok where am I going with this? I was, for a moment, getting lost in memories of my youth but there is also a point to this…

Having met with my dietician this week it really brought home the importance and in a way the very real challenge of keeping my weight up.

During my first week of treatment I was taken by surprise, kidnapped and taken hostage by fatigue – I didn’t see it coming so quickly!! I have had bouts of chronic fatigue for well over 20 years so I know only too well what real fatigue feels like.

I didn’t see the stomach acid slowly building up with a background sense of nausea. Perhaps we have all experienced indigestion and that burning feeling in your stomach and gullet. Bottom line being it took me a few days to realise that my appetite was paying the price! My mouth was already beginning to feel not quite itself so my saliva and taste buds were also under attack.

It’s early days but my lymph glands are bring zapped and I can feel them enlarge due to inflammation.

What I learnt (or was underlined) was that my treatment and recovery hangs on the upkeep of my weight. Treatment is delivered on weight and body shape – during the week I had lost 3-4 lbs. in weight.

Both the chemo and the radiation burn calories big time- combine them together and my body is under bombardment, lightning strikes of attack, the Blitzkrieg!

I’d like to share a dream with you I had this week. I was in the middle of a large square, in a city that had been completely devastated – it was like Stalingrad. I think I was with someone, very vague, in a vehicle of some sort, actually I was out of the vehicle.

I remember looking around, feeling very exposed and vulnerable to attack by snipers. My instinct was to get out of there and head for cover, fast. I thought what the hell am I doing here? This is crazy. It was like I was transported there and suddenly became conscious of my surroundings – intense!

I don’t see my treatment as an attack, but an onslaught it is in no uncertain terms.

It’s a kick ass healing modality, and that’s the way I’m looking at it.

Body Blitzkrieg on all fronts. Hence the military analogy. So I have to do my bit- keep the home fires burning and sit tight. Try to focus on what I can control – and the key I understand is my weight!

It may sound obvious but my body’s wondering what the heck is going on without a doubt.

When you have no appetite, no hunger, feeling nausea and your normal mouth sense is slowly leaving the building, it’s quite hard.

I’m not feeling sorry for myself but I won’t kid myself either that it hasn’t affected my mood – united states of limbo.

Things are happening and it feels a bit like a sledge hammer approach- if it zaps the rogue cells ultimately then whatever is stripped away or becomes unpleasant has to be worth it, I know that.

It’s a waiting game and I’m not going anywhere at the moment. Cancer doesn’t define you but it certainly displaces you – maybe more of that next time.

Finally to get the all the military style descriptions out of my head and down on paper. There are many individuals, in the hospital, on the battlefront, running across their own particular field, feeling exposed and scared, no doubt dodging bullets and mortars. But you’ve got to keep running, keeping your head down – just to get to the other side!

You get bombarded on all fronts – Lightning strikes on mind, body and spirit.

There have been a couple of hunger highs though – I popped to Waitrose, last Sunday, scouring the shelves as my body hankered after something filling, something substantial…And what did I see – a suet steak and kidney pie or really a pudding! 2 of them in a box. Steamed one of them for half an hour lightly covered in some Waitrose organic baked beans- hit the spot- yum!

You know what it’s like when you savour something you really enjoy, and I haven’t eaten a suet pudding for a very long time. For me, growing up it was the iconic Fray bentos steak and kidney pudding steamed in the can!

Whatever gets your gastric juices flowing go for it this weekend and share with us, please!

So I’m heading into week 2, slowly slowly…

Have a great weekend

Adex

P.s This week I’ve been mainly writing me blog in the Chemo hospital ward. Busy busy – I’ve been here since 745 – I may get to escape a little earlier today? Bleep, bleep go the monitors – nonstop work for the nurses. Update: I managed to get away for 3pm, result.

P.s 2 I had to pop down to radiation and sit in the waiting room looking abit out of place – usually treatment is one or the other- so, here I am all wired up for Chemo waiting to be zapped with radiation.. Picture a busy seating area, and me perched on the end of a chair waiting to jump the queue.

The monitor/pump I am hooked up to begins bleeping away – suddenly I’m feeling a little conscious of my bleeping – I daren’t press any buttons on the machine but it has gone into battery mode hence the bleep. Security is going to throw me out? One of the radiographers cottoned on and muted my bleep very swiftly – sorted! 5 minutes later I was bleeping again but this time I knew what to do.

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Dom Perignon as an anti sickness drug?

Saturday 10th May 2014– Weekly blog no. 4

It’s Saturday morning. It feels like a morning off. Like a weekend should be. It’s wet and grey but quiet. Living just off the high street, I can hear the buses and the cars go by. I have worked weekends for quite a few years now, in some shape or form and you adjust your life accordingly so sitting here feels out of the ordinary. I went to bed around midnight and woke up some time around 6am – typical for me. Woke up with a busy mind of what has been and what will be. My mind and body both battling it out, making sense of what is actually going on here.

Just glanced down at my arm, a little bruised from the intravenous cannula (small plastic tube & needle) inserted into a vein to slowly pump fluids and chemo into my system. It took 3 attempts to pop the needle in. I have never been squeamish about having blood taken or watching needles go into my veins to take blood out or inject things in. I can see that it doesn’t take long to run out of veins to be needled if you had this done on a regular basis. There was an old boy next to me and I glanced over and saw his arms and the cannula battle scars.

0800am kick off – Thursday was a long day – my first day. I actually arrived bright and early at 730 as I always do wherever I’m going – too early sometimes. I had done a recky a few days prior so I knew where the ward was. It was quiet and the ward was slowly coming alive. I took a seat having checked in and waited. People slowly wandered in, and my mind started wondering too – who are these people – patients, nurses ….? A chap sat down a few seats away with his earphones on– what’s up with this guy I wondered?

I felt like the new boy on the block. unfamiliar territory, as I was called in to bay 1. A ward with quite comfy chairs lined up on each side, a couple of others wandered in with me and we chose our chair. I finally left that chair at about 4pm that day.

The nurses once again where great. What a busy, non-stop job they have making sure everyone is getting pumped full of whatever it is they are being pumped full of. A big responsibility but another day at the office for them, I guess. As the day went on it got a lot busier. Patients coming and going perhaps for an hour or all day, like me.

I was a little nervous but I also composed myself too. I was given a chart to register how many cups of water I drank and how much pee, I peed. I spent the day literally sipping water and peeing into a measuring jug. I know the chemo takes its toll on the kidneys and the nurses needed to closely monitor fluids in and out. I think I must have won the prize for trips to the loo – was very conscious of that. They pumped me full of fluids and things that the chemo strips away. Several hours went by. By then I had got used to the machine attached to me pumping me full of liquids through the cannula. I had become quite adept at unplugging myself, taking myself and the pump (which was on wheels) to the loo.

Then it was time for the 1000ml of Cisplatin to be pumped into me. That’s the Gold seal standard Chemo although it comes in many different cocktails depending on your particular cancer etc. I had wanted to read all the packaging and understand how the monitor and pump worked just to keep my own handle on things.

Before my Chemo cocktail arrived I was given a cup of Anti-sickness pills. Happy to take those –down the hatch.

I read the labels on the fluid bags with my details on them – confirming quite happily that they were, indeed, my bags, my medicine. The Chemo would take about 2 and half hours to filter on down into me. I read the label and saw the words CYTOTOXIN. I didn’t dwell on that too much – afteral, when you hear the word chemo one does tend to think toxin and side effects.

I want to embrace the chemo as a healing elixir- Yep, a kick-ass medicine that was going to cleanse and mop up! I was driven to keep drinking water, to keep my kidneys firing up. I drank 18 cups of water and probably peed about 3 and half litres that day – it felt good too. They did pump a fluid into me to encourage the trips to the loo too I should add. It helped pass the time too, let’s face it.

I read a little, smiled over at people, chatted a little although I was happy to keep myself to myself. I just felt I didn’t want to engage too much and explain where I was along the journey I had recently started off on. I had made a chicken sandwich which I munched on and off throughout the day.

My radiation session was booked at 2pm with a briefing beforehand. By then I had had my Chemo cocktail. I was a little edgy as time was running over but all the departments communicate with each other so I hadn’t anything to concern myself with.

I was escorted downstairs to the Radiotherapy area. A bit of a wait, no surprise. It must be a logistical nightmare. 60-90 patients are seen here daily, I was told.

I met up with 2 members of the radiotherapy team, one of whom was clearly training so she was being observed. After 10 minutes of clarifying what was going to happen, side effects etc I waited in the seating area to be called in.

Thursdays are the double whammy of Chemo and Radiation.

I was more nervous about this treatment. I had gone through the mould making, preparation and trials and today was the day. You enter into this room with this big machine that’s going to zap you. It feels almost alien, in my mind it’s an intelligent machine, a bit like Hal, in space odyssey 2001 except this guy doesn’t talk, no noise only the sound of it taking up position around me – that’s how I saw it. Once again, I wanted to embrace the radiation as a healing energy – this bad boy really is going to kick ass. And as the weeks go by I am really going to feel it – rough with the smooth, is my maxim.

I hadn’t had the mask on for a week and they said the plastic will have hardened up making it even more of a tight fit – yep, a tight fit indeed but this is crucial. Onika, who had made the mask, was there to make sure all went smoothly which was very reassuring. I joked and said are you here to hold my hand – for a split second, I thought that would have been quite nice. At any time, when we need reassurance, human contact and presence is important. It’s a huge leap of faith and you have to trust these guys to do their part of the job.

I was still strapped to my pump and had to strip off rather awkwardly, I layed down flat and just calmed myself and remained perfectly still as the radiotherapy team made sure all the lasers and numbers added up as they positioned me on the table. I could feel my blood pumping all around my neck and shoulders due to the tight fit.

They assured me that as they left the room they would be keeping an eye on me via the monitors and that I should make a signal if I needed assistance – I did a practice thumbs up and we were good to go.

The machine then moved slowly into place like it was introducing itself to me. Hey big guy, I said in my mind, as it loomed over and around me. I should point out that it was a guy that sprang to mind rather than a gal – he lacked the grace and finesse and shall we say the necessary curves to conjure up something more feminine, plus I’d already had HAL in my mind.

So much for my digital music compilation to listen to whilst being zapped. It turns out there’s just a cd player. I hadn’t any cds so I just lay there and slowly counted the minutes away, as the machine emitted its healing rays. The team swooped backed in about 10 minutes later and unlocked me from my Meshk – treatment one, under my belt. I was a free man. Back up to the Chemo ward to finish the pumping of the fluids and another trip to the loo!

Blood pressure and vitals checked. A nurse came over and handed me a bag full of goodies – anti sickness drugs, she talked me through them and I was once again, free to head back out into the ‘normal ‘world. This hospital is a living and breathing organism. People coming and going all the time. Having been in there all day it was good to get out into the fresh air,! for me, this hospital world will be my ‘normal’ for a few weeks.

When I got home I wanted to go over the drugs that I needed to take. I looked at the one box and I thought it said Dom perignon?! It actually said ‘Domperidone’ similar though right? – I am partial to champagne, certainly a good way to remember this particular anti sickness drug.

All in all, a very busy week. Back and forth each day. I spent the day in and out on Tuesday in the Nuclear Medicine ward having my kidneys and bloods checked every few hours and Wednesday I was back in meeting up with the a chemotherapy nurse to give me a heads up about Thursday and the weeks ahead.

After my first day of treatment, I arrived home in time to see my 16 year old son, Elliot, head off to his school leavers’ ball. He was going to a lovely old manor house for the evening and then to an undisclosed location for the less informal affair of meeting up in a field for the ‘real’ after party. I have added a pic my son and me before he went off in a big american truck with his friends to ride around town before heading off to the old manor house in the sticks.

I am tired. Yesterday evening I had provisionally planned to meet up with some friends but as the nurse said, listen to your body. I was wasted, a slight temperature and a tad nauseous but this was probably as much to do with the build up of tension during the week and my stomach also settling down with the PEG that was fitted last week – that seems along time ago.!

I missed meeting up with my buddies. I felt frustrated and irritated but try as I might I couldn’t make it.

So, for a while, weekends will be my rest days in a way – A routine, that I’ll work out as each week goes by.

I just need to wind down from this week and simply let my body catch up and take the anti sickness pills to keep that under check.

The grey skies have lifted into a blue and blustery day – I need some of that fresh air and some food too, although I don’t feel that hungry and that is unlike me – I haven’t had my breakfast yet and its almost midday.

Signing off for now.

I hope all is well in your worlds.

Ade
Me and my son, Elliot.
Old manor house
American truck ride

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The Bloated Blogger…

The Bloated blogger…

Friday morning, 2nd May.

I am sitting on the sofa, laptop on lap, sipping a regular tea (no dairy though using Almond milk instead and its actually ok) – not a green tea insight today!

A long day yesterday. Should I start off with the weather? Yesterday bucketed down with rain for a while when parked up outside East Surrey Hospital, Redhill ready to dive into the Endoscopy unit to have my feeding tube (PEG – gastrostomy Feeding) fitted.

I’ve just glanced down at some of the bumf in front of me and I thought it read ‘Gastronomy ‘ Feeding not Gastrostomy Feeding – made me smile!

Well, I’m rather sore and bloated today. I showed you my mask last week which I think I’ll call my meshk. Anyway, I really don’t think it’s necessary to show you my belly – I had my stomach blown up for the procedure hence the bloated ‘Peg’ belly.

I had forgotten just how uncomfortable ‘trapped’ wind can be, plus my abdomen was pierced to pop the feeding pipe through so my stomach feels bruised too. I have 7 inches of plastic piping sticking out of my stomach – very strange. I forgot just how high the stomach sits. Lots of little procedures to follow in the days ahead. A little squeamish but I’ll get used to it. It is a tube that comes directly out of my stomach with a few clips and attachments. I have bags full of syringes to flush and feed myself in the weeks ahead.

On the brighter side, I didn’t get a perforated gullet and as far as I am aware, no internal bleeding, or contents of my stomach leaking into places that wouldn’t do me any favours – good job!

The endoscopy unit was very efficient and all ran smoothly with just one glitch – apart from the back of my throat being numbed with a spray tasting of well ripened bananas I also had some medication to sedate me, so I thought.

The lovely nutritionist nurse, Wendy, explained before I went in some of the stories of people dreaming or laughing during the procedure whilst lightly sedated – clearly unaware of what was going on which took about 10 – 15 minutes. Yes, I thought – lovely. Totally oblivious – me too please nurse!

However, I was 100% conscious throughout the procedure which was a little uncomfortable and disconcerting to say the least.

Everyone reacts differently to sedation but it had no effect on me this time – I don’t think I was given enough. Wendy went to my partner afterwards and said the sedation didn’t seem to have much affect on me – yep, true dat!

I wish I could say I was wheeled back to recovery feeling groggy and unaware of what had just gone on.

It’s not a complaint but I do need to make the endoscopy unit aware. No sooner had my throat been numbed, I was sat back on a reclined table, mouth fixed with a strap and plastic mould. Then what felt like a hose pipe inserted down to my stomach. One surgeon on that and the other at my stomach,
I think making the necessary incision.

I gagged and I think was sick on several occasions although I’m sure I didn’t bring anything up but there was a nurse with a suction pipe, like the ones you get at the dentists but much bigger, popping that into my throat whenever the need arose which was several times. I heard her say that I was doing very well but there was a part of me thinking ‘ why am I even conscious of all this happening around me? I could feel the stomach insertion, see the inside my belly on the TV monitor, the surgeons talking and me, feeling rather uncomfortable.

After the procedure, I was wheeled to recovery but all I could think about was what had just happened ? I lay there for a couple of hours having my blood pressure and temperature checked. I hadn’t eaten for about 18 hours and wolfed a 3 pack of custard creams – I think it’s been about 20 years since I last ate one of those but with a cuppa that the nurse kindly made, I made short work of them.

All in all about 3 hour stint in the hospital as expected.

Last night and today I am sore and big of belly. It will take a few days for things to settle down before treatment kicks off next week.

Prior to yesterday afternoon’s procedure, that morning, I was up at Royal Surrey, Guildford at the Diagnostic Imaging Unit, at 8am, with Free parking too!

I had a PET scan to keep an eye on my ‘rogue’ cells, to see what they’re up to.

Radioactive glucose dye (tracer) was injected into me so I couldn’t go anywhere near pregnant mums or kids apparently. I lay in a darkened room for an hour prior to the scan. It was a necessary step before the scan because any movement or muscle interaction with the glucose dye makes the images unclear – I kept still and slipped into a semi-meditative state – that hour felt like 10 minutes!

I was then led to the scanner, promptly told to pull my trousers down to my knees (ooh Matron!) I then lay on the scanner couch – must be to do with the metal zips. The tracer goes to work in my system looking for the ‘rogue’cells, I understand.

I have had quite a normal week this week. Business as usual, pretty much. I have seen some of my regular clients, eaten several portions of chips from the chip shop – it’s like my body knows what’s in store? Had some steak, and roast pork. My diet actually doesn’t have that much meat in it but I am certainly no vegetarian and I have been eating lightly steamed ‘cruciferous’ vegetables such as broccoli which is supposed to be just the job under the circumstances. I have also been munching lots of fresh garlic and ginger – ginger being a natural pain killer is very good for sore throats so this could be my staple food for a while.

I had a call from the nutrition company asking me about feeding tubes and shakes being delivered. What flavours would you like? Vanilla and peach flavours for me – wasn’t sure about fruits of the forest?. Besides, if I am not swallowing the drink and my taste buds are going to be ‘shelved’ for a while it probably won’t make too much difference.

I am feeling the pressure of needing to flush my feeding tube at the moment and make a few adjustments to the plate that is fixed in place (stoma site) – I am a novice but it will get easier. Each week I have to gently pull the tube in an out just a few centimetres and rotate it 360 degrees as it will heal up just a like a pierced ear – that’s not a good idea otherwise that’s another surgical procedure to remove it when that time comes – are we there yet?

During the last 24 hours my mind has been focussed on my stomach and all things related. I will do my best to eat normally in the weeks ahead until such a point, if it really becomes too unbearable even with painkillers to swallow normal food, in will go the vanilla and peach nutrition drinks.

Update, just read some more bumf – I am supposed to start using the feeding tube as soon as possible to get my stomach used to the feeding and flushing and for me to get into a familiar routine too, which makes sense.

My mind was preoccupied at the beginning of the week, each thought rolling into the next so it was really great to meet up with 2 good friends of mine this Friday afternoon and evening who I hadn’t seen for a few weeks. We kicked back and took it real easy with some fabulous fish soup, creamy rice pudding with mango and lime plus some meringue to top it all off – home made and right tasty, thanks Pete!

It’s now Saturday afternoon. Still sore and hobbling around feeling rather fragile. Had a lounge in the sun but back in doors as its now actually quite cold. My daughter has just made me a fresh juice with a light spinach and quinoa salad – healthy, huh?

I have a busy week ahead in hospital and I am feeling apprehensive but also calm and collected too – a balancing act of being secure in my own insecurity, if that makes sense.

I’ll wrap things up for now so have a fabulous weekend.

“Thank you, goodnight and may your God go with you” (Dave Allen)

Ade.

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The man in the mesh mask

The man in the mesh mask…that’s a mould of me.

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A busy week…

Friday 25th April 1630 hrs

It has been rather an odd week this week and I can’t quite work out why.

Well, the weather has been pretty gloomy and wet these last few days I know. I had got used to the blue skies and sunshine during the last couple of weeks which was very uplifting – I’d been spoilt, basically.

My eldest daughter, Sophie, took a week off work this week and has been at home with us. She lives in London. It has been really great having her around too.

I have been in and out of St.Lukes, treatment centre for cancer at the Royal Surrey Hospital, Guildford all week. First time I entered its doors I felt a slight sense of dread, perhaps fear or even denial – let’s face it, all of the above and a few other things thrown in for good measure.

The week kicked off with a visit to the dietician, speech therapist, nutritionist and 2 research nurses. A stack of more information and a really nice bunch to boot. You really get a sense of just how many people are involved in your care. It’s scary, heart warming and also giving me, at the same time, a piece of mind knowing that there are a lot of people to contact should the need arise for whatever reason.

A big decision had been in the forefront of my mind this week. There was a possibility for me to take part in a clinical trial which I was aware of, having had several conversations and information given to me to read.

I met up with the research nurse at the beginning of the week who explained the ins and outs. It was all academic at that particular point because unless I proved positive with an HPV related cancer I wouldn’t be able to take part, but I sat and listened and asked lots of questions.

Stepping back a month, when the consultant told me I had cancer, he was surprised to hear that I wasn’t a drinker or a smoker – with mouth cancers these things can play a significant part.

He also briefly mentioned the Human Pappillomavirus (HPV) which has become increasingly more apparent in recent years with such cancers. HPV comes in many strains and can reside harmlessly in your body for many years. He said I would be tested, certainly under the circumstances.

If indeed, it came back positive, this would ‘swing’ in my favour for a more positive prognosis – I was keen to establish as soon as possible whether I had this related cancer.

I really gave the trial a lot of thought, but I decided not to take part. I won’t go into the details but suffice to say I wasn’t 100% on board – they did say if there was any doubt then I shouldn’t go ahead.

I rang the research nurse back this afternoon to find out whether the results had come back – once again, a waiting game. He had just received an email from Histology stating that I had indeed the P16 protein which is left by the HPV.

He also said it was a positive outcome for me as results have shown that people fare better with an HPV related cancer – good news for a wet and cold Friday afternoon!

I have had a head and neck mould made for my Radiation treatment. A technical team swooped down on me and created a lime green, very tight fitting, mesh mask – yep, I like the lime green colour!

It serves a very important purpose of keeping me in a precise position during the sessions of radiation; along with CT scans to build a 3D picture of my neck and throat so the radiographers and radiologists etc can work out just exactly where I will be zapped. Therefore, during my 30 days, each day will be precisely the same as the last.

I now know how the man in the iron mask felt – just a tad claustrophobic!

I can choose my own music while being zapped, so the stress of having to compile a list of appropriate tracks, as you can imagine, is beginning to weigh heavily on my mind – suggestions welcome please.

One thing I have realised is that being unwell, off the hooks, poorly …can be very time consuming and my documented pile of appointments and information is building up rapidly.

I don’t want this whole affair to take over my life but I am resigning myself to the fact that in many ways it is – a temporary glitch. I can feel myself at times becoming a little agitated and frustrated. I also know I have to tackle this situation full on. I know it will throw things at me along the way, some of which I’m not going to like, but I plan to battle through day by day and week by week as I have been doing.

It’s the thought of being the ‘sick’ person I find hard to accept. When I walked into the cancer unit there were some poorly souls wondering around. I shouldn’t have been surprised. I felt detached in some way yet we were all, in some shape or form, in the same boat too.

It’s all so unfamiliar and an unknown, at the moment.

The bottom line being is that I am in the system, being gradually filtered and processed bit by bit which is fine and it’s good that things are moving albeit slowly, in my mind.

After all, I have a few rogue cells that have gone a bit haywire inside. You can’t help but imagine them running roughshod in your system. I don’t dwell on that but the mind and imagination will process things in its own way and these are the thoughts that crop up from time to time, as I wait and ponder.

I met a young guy last week, Simon, 24 who had gone through a tough time during the last few weeks. He sparked up a conversation with me when we were both waiting for dental x-rays last week.

I figured I’d see him again – he was also getting his mask fitted as I was leaving today. I gave him a big smile, handshake and a pat on the back and asked when he started his treatment. That little camaraderie and a genuine spark of recognition I know picked us both up, just a little.

He made me think about my daughter, the same age, who was off to a friend’s wedding today with her boyfriend. This young guy should also be enjoying life, with no cares in the world, shooting the breeze and just living life – he’s got a temporary ‘glitch’ going on too but I hope for him that in the months ahead things will subside and he can get his life back on track too.

So, I am a matter of days away from the start of my treatment which is on Thursday 8th May at 2pm – a double whammy of chemo and radiation.

As I conclude, my thoughts and ramblings are really about coming to terms with what’s going on, I think? Information overload but also a time to examine what’s actually going on and preparing the way forward, positively and step by step.

I have a few more interesting visits to the hospital in the next 2 weeks so when I’ve been swooped down upon again and mauled, in the nicest possible way, I’ll let you know.

Thanks for listening and piecing together my thoughts as they spring from my mind into print.

Have a great weekend and take care.

Ade

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Update – Hospital Visit (Oncologists) Royal Surrey Hospital, Guildford. Thursday 17th April 1030am.

Met up with 2 oncologists this morning, a radiologist for a dental x-ray, a dentist, a dietician and a phlebotomist.

5 hours later I left the hospital and headed home absolutely famished – I ate like a man who’d been on a desert island for several months.

Stepping back to 1030 this morning I met up with the Oncologists who explained that I would be bombarded with information – yep, she was right.

If you buy any medication and look at the instructions in the box you’ll see all the possible side effects of that medication but you take it anyway, on the whole, right?

That’s what I was bombarded with – side effects. But it wasn’t all gloom and doom but these things have to be laid on the table, I understand that. Everything from Thrombosis to secondary cancers due to radiation.

I should step back a little more and give you a ‘heads up’ about these last few weeks, stay with me…

I had my right tonsil removed 2 weeks ago as it was cancerous. I had been in limbo for 2 weeks as the docs weren’t sure, once they’d confirmed the lymph node was indeed cancerous, where the primary site was.

It decided to take its natural route into my lymph nodes – 2 of them in my neck, one of which is the lump I noticed 6 weeks ago which drove me to make an appointment at the GP surgery. The first GP dismissed it as swollen glands saying I should leave it 2/3 weeks and come back if it wasn’t any better, but I knew something wasn’t right and saw another GP the following week who gave me an urgent referral to hospital.

Like many cancers they go unnoticed until a symptom brings things to your attention.

It made me think how often we look into the back of our throats? When I felt the neck lump I dived into the bathroom, torch in hand, and had a look in my mouth – my right tonsil was so much bigger than my left. Something wasn’t right, I knew that for sure. Just contrasting and comparing left and right.

I guess my poor old little tonsil was just doing its job and soaking up all the nasty stuff and keeping things from going any further.

So, I’ve been in the ENT (ear nose and throat) system ever since having operations, scans, x-rays, and biopsies etc.

The consultants had a hunch the primary site was the tonsil but they had to wait for pathology to confirm. I also had a CT scan of my neck and chest meanwhile. The mind wonders during any period of waiting, waiting for results. That was the unsettling part for me and my family, of course. By the way, my partner is Denny, our two daughters – Sophie and Hannah, 23 and 21 respectively and my son, Elliot 15 years old.

Last Thursday, the surgeon did in fact confirm that the Tonsil was indeed the primary site. The neck and chest scan came back clear. It was good news amidst the not so good news of the past couple of weeks.

My partner and youngest daughter were both with me that day – I’m glad they came along because it lifted their spirits having been living with the uncertainty of the last couple of weeks.

That was the first time, I had my family come along to the hospital and it was nice. I’m not a rock, I know that. At first, I wanted to keep things on a need to know basis but found it more difficult. I had initially wanted to protect my kids from knowing stuff perhaps they didn’t really need to know but things are more out in the open and upfront now, and in many ways that’s a good thing, both short and long-term for all of us.

On a lighter note, we left the hospital that day and went straight to the fish and chip shop and wolfed a portion of chips – it was just what I fancied. It was the first time in a week I could swallow normal food, other than the fantastic healthy juices Hannah prepared for me.

I should say at this point my diet has been driven by my kids and partner. Enter the world of Juicing. As much organic food as possible. I have given up all dairy, red meats, processed foods and as much sugar as doable in whatever form – I have a real sweet tooth and that’s damned hard!

Yep, I’ve slipped up a few times and have eaten things I daren’t tell Hannah about. She must never know….

Technical bit…

So, we have the soft linings of our mouth. The tonsils are part of the mouth (oral cavity) technically it is in the Oropharynx (back of the throat)
My cancer is a Squamous cell carcinoma. As the lining of the tonsils are squamous cells it follows that the Cancer is a Squamous cell type.

Yes, it has gone into my lymph gland (node) which isn’t ideal but it’s all local and treatable (curable) The lump is just below my right jaw line on the neck. For all you anatomy geeks, it’s smack bang anterior to the sternocleido mastoid muscle. It’s probably about 3 cm in diameter. A relatively small lump which is good to hear but it feels a lot bigger. These things grow slowly but surely.

The Treatment Plan…

I had read a couple of the Macmillan booklets the nurse gave me about this particular type of cancer and the necessity of having both Chemotherapy and radiation at the same time. Once again, not ideal and each with their own side effects – a double whammy.

I will be zapped with Radiation for 6 weeks, 5 days a week with Chemotherapy on one of those weekdays, staying in the hospital all day.

Shortly going into hospital for a mould to be made of my face and neck to make it an ‘exacting’ zapping and to keep me really still when being zapped.

This will all be kicking off in the next couple of weeks along with a few other scans and procedures.

Because my neck and throat and mouth will be zapped, it means a lot of potential soreness. Eating normally will not really be possible, so its fluids all the way.

I am also going to be zapped both sides of my neck to be sure (I was hoping it would be just the right side). This increases the soreness – essentially I’ll be red roar inside my mouth and throat lining – that was my understanding. Hardly surprising?

If you are a little squeamish best turn away now…

Being zapped both sides makes this worse so I will have to have a tube inserted into my stomach where I will have the luxury of pumping liquid food directly into my stomach.

Not so keen on that if the truth be known but if that’s what it takes then so be it.

There are other things that I don’t need to go into for now but I thought I’d share this little bit of info. Maybe your initial reaction wasn’t too dissimilar to mine?

Good news… I don’t have to have any teeth removed. Because of the radiation, if you have any dodgy teeth they have to be removed now rather than later. The dentist gave me clean bill of health –sigh of relief. I gave her a big smile and ran out the room.

Back to food and my diet quickly…

I have been so good with my diet these last few weeks. I mentioned at the start about feeling ravenous today when I left the hospital.

The dietician said to me “Eat what you want to eat now! Eat all your favourite foods, eat them all!” That resonated with me, as I envisage a long 2 or 3 months of feeding myself through a tube. Yep, I have a couple of weeks for my throat to heal from the tonsillectomy and then the zapping begins so I will let my diet slip just a little in the days ahead and treat myself – steak and chips I reckon.

Final words…

There’s a possibility of taking part in a research trial which I’ll tell you more about next time.

Thanks for lending an ear guys and gals. Excuse my ramblings too. My monkey mind dives all over the place when I sit down and start to think about putting my thoughts down on paper into hopefully legible sentences.

Have a fabulous Easter Weekend.

Signing off

Adex

p.s what makes me laugh every morning is that I don’t get that much post thankfully, but my post is becoming very familiar looking these last few weeks. Hospital appointment confirmations – that’s what they are. It’s always good to get things in writing – very comforting.

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Good Morning

Hello Lovely people,

I set up a wordpress blog yesterday and you’re probably wondering where’s the news?

Sit tight – I have a meeting with the oncologists tomorrow and that will shed more light as to my treatment and the weeks ahead.

I had to painstakingly sift through my contacts list and then cut and paste each and every one of you –  maybe I missed something but it took a while.

Suffice to say, if you come across anybody who knows me and you mention my blog they may look at you with a blank expression.

I am sure that there are a few that have slipped the net  for whatever reason or I don’t have an email address for.

If you could kindly forward them the blog, and then they could drop me a line or I am sure there are ways to find me on wordpress if you pop in ‘absoluterecoveryblog’.

Meanwhile, have a fabulous day.

Cheers

Ade

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