FIVE YEARS – “Ping” … I’m now cooked

Hi there all, I hope you are all well  … wherever you are in the world?

So first and foremost … I am still here. I have to mention that, as someone once messaged my blog to say that, as I had not posted anything in some time, they were not sure of sending me a message … just in case I was not here to answer it.

I am  … and yes it’s been a while since my last confession/update and there is no earth shattering reason for my absence …. I’ve just been living a normal life, doing day to day things that we all take for granted.

Today (Monday 4th November 2019) though is different.

Today is very different indeed.

For today was the last time that my nasal cavity became primetime TV.

Today was my last cancer assessment and I’m now happy to report, that 5 years post treatment, I AM NOW 5 YEARS CANCER FREE.

So it was a sad and joyful goodbye to my local hospital, and from the exact same consulting room where it all started on Monday 28th April 2014 at 12:35. And a mixed goodbye to my ENT consultant, who has looked after me for the past 3 years, no longer will he stick a camera up my nose and down my throat to check what breakfast I’ve had that morning …. or quickly retract it as my Shreddies yearn for the daylight once more (that has happened … on full colour tv too !!!)

This day has been a long time coming and it’s been an interesting journey too.

As my Sat-Nav constantly tells me “You have reached your destination” likewise, my cancer journey has come to an end and this gives me time to reflect on my epic road trip.

When I embarked on my treatment Tomotherapy was cutting edge, you had more chance of winning the lottery than getting Cyber Knife and Proton Therapy powered the Star Ship Enterprise. Today, Tomotherapy is old hat, IMRT is practically Victorian and there is a sweetshop of state of the art therapies now available … if you are in the right area that is.

What is life like now, five years post treatment?

• I sleep like a baby, but get tired very easily.
• I eat well, but have had to change my diet, foods I used to love (picked onions) I can no longer take.
• I have good taste, but that has changed too, I can’t taste chocolate or a Korma.
• My voice goes by the end of the week and I do I good impression of a Dalek.
• Due to the Tomotherapy my throat aperture has narrowed and big fat chips do not go down well, so I ALWAYS have to have a drink with me at meal times.
• The indigestion is unbearable, to the extent that it doubles me up, so I am resigned to a life of tablets……bang goes my application for “The Island”
• My teeth are becoming brittle and tender, but I am not sure if that’s the treatment or old age.
• I get a lot of tinnitus, but it only lasts for about 20 seconds a time.
• If you put 3 Jacobs Cream Crackers in your mouth, you will get close to how dry my mouth is with the reduced saliva.

My blog rumbles on

My blog has been a valid chronicle not only for those who entered the process, but it also reminds me of the minutia I have forgotten. For some unknown reason though, my blog has gone bonkers this year, it’s had more hits this year than the previous four years put together, which is strange, considering I have not put any new posts up….lets see how this post fairs.

Although my treatment may now be out of date, I guess the impact of treatment has not mimicked the speed of technology now being offered. So I am glad that my blog has had some benefit, although I do look forward to the day when the tips in my blog become obsolete.

There are so many people I need to thank.

I always envisaged myself sitting at the top of my so called “Cancer Tree” and the branches of specialists, friends, and family that fan out beneath me has been immense, to the extent that I am sure it would give the Pyramids of Giza a run for its money in terms of size. And there must be hundreds of these pyramids in every hospital and countless more in every hospital, across the country.

However although I have been the front man, the team behind me has had a huge hand in getting me to where I am today, so my thanks goes to:

• The armada of dear friends and close family, who every day for six weeks, trundled a whispering microwaved passenger on a 90 minute return to Addenbrookes. You may never understand how such a small act of kindness had such an enormous beneficial impact on my family.
• Anyone and everyone who offered me and my family support either by just being there, taking the kids out or doing the smallest of things … it all helped.
• To the radiologists at Addenbrookes, who guided my family through the process of Tomotherapy and on many occasions stayed late when one of the two machines broke down … I might have had a 3pm appointment, but if they were staying until 8pm, so was I. I miss them dearly.
• The Chemo nurses, who kept my spirits up on my lonely 8 hour sessions once a week.
• My Medical team at Addenbrookes, who were quick to diagnose, treat and deal with the odd relapse, post treatment … a first class team indeed.
• My local GP and hospital who provided a first class treatment pre and post treatment.
• To my hygienist at Addenbrookes, who talked the hind legs off of a donkey whilst I nodded my head and just grunted.
• To my In-laws, who were, for the first six weeks of diagnosis, the only people we told and all they had to deal in those early days, as I went through diagnosis….you have no idea what huge support you were to us.
• To my two children, who brightened my days with tales of their daily activities when I was too sedate and silent to move from the house.
• The UK Cancer Research forum is a great oracle of brave and wonderful people and this forum not only helped me through, but I feel proud to have helped many post my treatment. If it were not for this forum I would have not met Gary, Irene, Nicola, David and Jayne, all with head and neck cancers, and we now try to meet up every two years …. now these are remarkable people.
• AND FINALLY to my poor wife. I sat at the top of my tree, with everyone supporting me, she was buried and invisible in the bark somewhere. I’ve always said that I had it easy going through cancer, as everyone did everything for me, I just had to go through the process. But to watch someone go through this treatment, or in fact any cancer treatment, is just as painful, but it goes unnoticed. She was my Everest; my sounding board; my hard nosed matron; she made a vat of mashed potato one day and I went off it the next; she injected my food via my feeding tube and cleaned it out when it got blocked (scary moment that one); she did all the research into what treatment I needed and she made sure got the best available; but most of all she leant me her shoulder when it was needed. She never wavered by my side, although I know out of sight from me … things were different. She is the reason I am what I am now XXXX.

That’s me done ….”Medium” 

Well that me folks, signing off for now.

Of course I am still around, but it’s now time for me to live my life and carry on taking out the bins, mowing the lawn or repainting the lounge. However, if anyone messages me, I am always happy to help.

Over time My blog here will become out of date and I hope others will pick up the challenge.

The treatment might have taken its toll on me physically, but do you know what? It’s been a life changing experience and made me value the smallest of things. Never think that cleaning a blocked drain or picking up all the rubbish from a split dustbin bag is a chore, because I for one, am grateful for the chance to be able to do it.

“PING”

 

 

 

 

 

 

An update on life

Hi there all, well for those of you whom follow my blog, I hope you are all doing well and that since my last post, way back in November 2016, that I hope life and 2017 has been good and kind to you all.

So, in the summer of 2017 I received a message via my blog, the sender was concerned that I had not posted anything for sometime and asked if I had passed away.

I immediately responded that I was very much alive and enjoying life, my enjoyment of life being the reason for my blog silence.

That message got my thinking though …. ‘Why would someone ask me that?’

And for those that follow my blog, what were they expecting from me and when?

I knew how my life was, as I was the one living it, but anyone following my blog had no idea I suppose.

And that when it hit me ….

As a parent nurtures its off-spring from a baby, to a toddler, on to a child and into its teenage and adult years…..Having given birth to this blog, I now realise that I have a parental responsibility to look after, evolve and of course update it now and then

How delinquent and remiss of me …… sorry folks,,,

I’ve been too busy enjoying life
When I say ‘enjoying life’ I’m not talking about ticking things off of my bucket list (I don’t have one), or going on lavish holidays … it’s more simpler than that.

…. to be able to argue with my wife (I never win, but try)
…. to be able to experience disappointment
…. to have a bad day at work
…. to be sitting in my car in minus weather conditions, waiting for the windscreen to defrost, so I can get to work in the morning
…. even to be stuck in a traffic jam

I actually enjoy these things, because at one point during my testing, we did not know if it was going to be possible to experience such emotions, into my old age.

This ‘I’m loving life’ attitude does annoy the hell out of those close to me though, as to me there is no such thing as a big problem now, they are all small ones and everything is solvable and even if it’s not .. so what … we will still be alive to deal with it …. and that’s a bonus in my book ….

Better to be alive and deal with, than to not be able too … I suppose that’s easy for me to say … as I don’t know all the problems you are all facing out there and I suppose there are some issues we would rather not have to deal with

Horses for courses and I think I will and that line of theoretical thinking there

 

Moving on …

So that’s what I have been up to …. of course I had some great times with loved ones this year.

Well I am alive and making the most of life with my family and if there is one thing that cancer has taught me, that is:

Growing old is a privilege, not a right

UPDATE

As I update my blog I have just heard of a young woman who has lost her battle with cancer at the young age of 27. Her Facebook post sums up how special and under valued the experience of being able to grow old is by us all …. until we are forced to think about it

http://www.independent.co.uk/life-style/holly-butcher-death-27-ewing-s-sarcoma-cancer-viral-letter-facebook-a8146271.html

The initial aim of my blog
Having started this blog prior to my cancer treatment, the main aim of it was to inform those outside my immediate family as I went through treatment. This would also save my poor wife repeating the same update a thousand times over and then multiply this for each progressive degenerative week of treatment.

A voice to the outside world
As my treatment progressed, I became very tired, lost weight and withdrew from external life for a while. When my voice took an early winter vacation, the blog became my only outlet to the world outside our front door and sometimes behind it too. To this day, writing down how I felt and what I went through, in a way, made me understand and perhaps deal with the treatment in more a positive way ….. However, nothing beat the love and devotion I received from my wife close family and friends.

Who has it harder?
Although it might sound strange… I’ve always said ‘I had the easy part to play in my cancer treatment’. Ok, I was the one with cancer, I was the one who had to go through the treatment and I was the one who had to deal with the impact of the treatment, but I had a load of people looking out for me medically, emotionally and physically …. I just handed myself over to the whole process, did what I was told and let everyone else look after me ….. some might not find this so easy to do.

So why do I think this was the easy part?

Well my wife, children and close family were just there to look after me, when in fact they were hurting just as much as me, but in a different way ….. but who was looking after them, what support network did they have?

I was the centre of attention, I was the one with cancer, not them, Indirectly I had managed to kidnapped the majority of any support going.

I do believe my blog helped my direct family and those in our ‘inner circle’ as those close to me no longer became just a narrator to my condition, people who would ask after my wellbeing already knew how I was via my blog, this then gave rise to conversation that was not about me, and suddenly those close to me got a level of identity back and could actually be asked… ‘and how are you?’

And because of this, my cancer became about all of us, not just me.

I am someone’s statistic
I was just the tip of the iceberg.

If you think about the layers of relationships anyone has around their life, it starts with your immediate loved ones (wife, husband, son or daughter) then starts to widen out with in-laws (outlaws if you want, but I’ve always had in laws), brothers, sisters, grandparents, uncles and aunties, that’s before we get to the many circle of friends we all have and work colleagues.

There is some statement, I can’t remember the exact wording, but it lays out on the basis that in some point in our lives we will all know someone close to us who is effected by cancer.

For all those above who had not been ….. I became that statistic.

Guidance for the newly diagnosed
Having written my blog, initially for those in my life, it soon became apparent that being based on the WordPress platform, that it was available to all. Within a few weeks of publishing my blog I started getting messages from people all over the world, for a load of different reasons

The newly diagnosed – for those just entering this process my blog became a possible guide of things to come

In treatment – for those in treatment it became a possible aid as if things were not going right, to change tact, or at least know where to ask for help … obviously different things work for different peopl and in different countries

Just out of treatment treatment – tips and advice on how to get back on track

Partners of those in treatment – most of my messages came from those who had partners going through the process and were seeking guidance on making it an easier process for their partner … I’m not sure why I don’t hear from those in treatment from these messages!

Post treatment survivors – for those who are well on the mend, the blog became a reminiscent diary of events that they could relate too. Many messages in this category wished that they had done the same, written a blog or diary through their treatment.

Thank you – I suppose in the low points in our life we find ways to cope. I have always been a glass half full kind of bloke and seen the comedy in everything and there has been funny moments on my journey and yes bad days too. In the main though people have sent thanks to me, as in their dark moments perhaps some of the spins I have but on things have brought a smile to their face, or perhaps they have seen there is a way out … who knows I’m not qualified in any such area, I just wrote it as a saw and felt it.

It’s a small world
I am constantly amazed how far reaching my blog has gone.

I started this cancer journey and my documentation of the process in mid 2014, I’ve added pages since then, not many …… but people are still reading my blog today

Ok I am no blog star, but that was never the point ….. if it helps anyone, that’s enough for me

So just to give you some statistics on how many people have read my blog

And the number of countries looking at my blog

So, my little cancer tale has gone round the world …. I hope it’s been of use?

 

So how have I been.

As for me … well I am now 3.5 years post treatment and doing well

It still takes me longer than anyone else to eat a dinner and my food ALWAYS has to be accompanied with some type of liquid refreshment to help it go down …. especially if roast potatoes or bread is concerned

I have about 80% of my taste back and that’s going to be it … I can’t take anything too spicy and I’ve just gone off of chocolate and many sweet things …. my teeth I suppose are thanking me for that

As for my health … irrespective of what I eat I can’t put weight on, I am about 8lbs off of where I would like to be and I go to the gym once a week to try and straighten my body back out after being fried under Tomotherapy, I have still not got full rotation in my neck, but it’s getting there

My hospital visits are now down to once every 6 months, so that’s makes 3 left then I’m done…..so only 3 more times that that camera goes up my nose and down my throat

Apart from that, as I’ve said … all is good and as you can see I’ve had a good year

Have a great 2018 you all and unless you hear otherwise … I will be here in 2018 … doing the same boring, brilliant and wonderful daily drudgery of life … because I can

And life goes on

Hello all
It’s been well over a year since my last blog …. So what’s been happening to me
Well I been playing being “normal” again and loving it.
In December 2014 I’d just got rid of that flipping peg (feeding tube) and that was the start of my Steve Austin process (for those of you not old enough … Steve Austin was the six million dollar man … ” a man barely alive … We have the technology to rebuild him)

A few of my cancer friends are now two years post treatment, a great milestone for any survivor, but I asked my consultant recently about key milestone dates he replied:

13 weeks post treatment – that’s when most of the swelling should have gone and you get you PET scan

1 year- just proves things are going ok

3 years – much of the same

5 years- no more check ups ….yippee
In reality every day post treatment is a milestone day

HOSPITAL VISITS

In early 2015 my monthly hospital visits went to bi-monthly and they are still bi-monthly going into 2016, however I managed to drop off the speech therapist and dietitian appointments…. Yippee !!!
However these bi- monthly visits always drain me and the multiple appointments always overrun so I end up sitting in waiting rooms most of the time…..oh and yes every visit, l still get the camera up my nose and down my throat.
In my last couple of visits, I’v had student or trainee consultants, I don’t mind this, we all have to learn at sometime. I don’t normally have an adverse reaction to the camera either, it’s an uncomfortable itch and it sometimes makes me feel like I am going to sneeze…but I never have …yet. But on my last visit, either it was too close to me having breakfast or the trainee consultant went too deep, but I started wretching. You have never seen that camera come out so fast….I guess he could see what was coming …. I was not sick but my wife (who can see what’s going on from the TVs in front of her) found it very funny.

ORAL HIGIENE

In each on my visits to the hospital, I get the hygienist to clean my teeth, it’s a much more rigorous clean than your normal 10 minute job at your local dentist and it’s free, so I would urge like suffers to seek a visit. It was not offered to me as part of my post treatment routine, I just asked for it…..if you don’t ask you don’t get.

Oral hygiene is of the upmost importance now, due to damage caused by the radiotherapy. Although I had Tomotherapy (a more targeted and less globally invasive radiotherapy), I still have to do a bit of preventative maintenance. You see, the radiation treatment can damage the blood vessels around the jaw and infection could cause decay to the actual jaw. Having survived cancer at this point in time, jaw necrosis is not something I plan to deal with in the future.

So constant brushing with Duraphat 5000, constant mouth washes with Diphlam and the hygienist gave me a special little brush that I have to use day and night, it gets into all the upper parts of my teeth and is supposed to minimise plaque. Even though I constantly administer this routine though the hygienist still finds some plaque.
I have recently been made aware of the benefits of mints containing Xlytol, it’s a plant based sweetener that blocks bacteria sticking to teeth. For those of us lacking saliva (the bodies natural mouth antiseptic and cleanser) bad breath can be a problem, so these sweets keep your breath fresh and help keep it plaque free.

Although in its infancy, Australian primary schools are dishing these mints out to children free on a daily basis in an attempt to lessen tooth decay

http://www.dailymail.co.uk/femail/article-2303334/The-sweets-actually-PREVENT-tooth-decay.html

More studies on xylitol

https://www.peppersmith.co.uk/cochrane-xylitol-review/

I use Peppersmith mints they are about 49p per box 

https://www.peppersmith.co.uk/shop/
TASTE

My taste came cack slowly in early 2015 and continues to do so 16 months post treatment. There are still somethings I can’t eat.. Bars of chocolate and anything with icing on it just are an immediate pain to my teeth, it’s like putting a piece of foil on a filling …. I think it’s just the high sugar content in certain foods and the lack of fluoride in my teeth…. My wife hates the fact that I can’t eat chocolate, as on a few occasions pre treatment, we would curl up in front of the tv with a bar….. Now she blames me if we sit down to what a few series of Breaking Bad and by the end the whole bar has mysteriously vanished… Totally my fault as you can see.
I still have major trouble getting bread, pizza and other saliva kidnapping foods down, so when I do try, copious amounts of liquid needs to be on hand. Even then I’ve still got that chicken like movement when I swallow something stuck in my throat…my head moves forward, then head up extending my throat, so that whatever is stuck in my throat can squeeze down. My throat sometimes looks like a snake swallowing something twice its size.

FITNESS

The biggest thing I struggled with in 2015 was lack of muscle. Before my cancer, I played squash, 5-a-side football once a week, the odd round of golf and took my dogs for long walks. The only thing I could do at the start of 2015 was take my dogs for a slow 20 minute walk
Where the NHS were so brilliant at treating me, I suddenly found zero assistance to help me with my recovery. I am aware that some districts have free gym membership for 6 months….but not in my part of Tory Suffolk.
Even when I sought physiotherapy, (due to the radiation, my neck muscles were taught and neck, shoulder and upper back movement was restrictive. This led to incredibly pulsing back aches, after a 20 minute walks) the assistance I got was about as useful as a chocolate tea pot.
So I took things into my own hands,
I joined a gym, explained to the instructor that I was looking to get back core muscle back, as opposed to bulking up, they sorted me a great routine using low weights but with repetitions.
I then got a private physiotherapist and my God did she pull my neck and shoulders about. But it worked and with the exercises she taught me, I incorporated them into my mat work after doing weights at the gym
I started all this back in April 2015 and these two factors have been key to me getting an exceptable level of fitness back. I don’t spend so much time in goal now I’m back at 5-a-side, I’ve played two rounds of golf on cancer charity days, I’m not fit enough to play squash yet, but I’ve now bought myself a mountain bike and get out for rides between 7 and 18 miles
As for my weight, I started off just under 13 stone in Dec-14 I am now 13:6, but I think that’s mainly muscle as opposed to fat. But it’s weight gain all the same.
Although my fitness is coming back I would guess that I am about 6 months from getting back to my fitness pre cancer. That would make it just over two years to get myself back to virtual normality.

SLEEP

Although there have been some annoying things to deal with, somehow I have come out with a benefit…….I sleep like a baby.
Pre treatment I would wake up at 7:30 over the weekend and would have to get up and go and do something quietly … I was not one for laying awake in bed for hours
Now, unless I get my full 7+ hours sleep…..i just can’t get out of bed in the morning…if I do, I can now get back into bed and catch a few more Zzzzzzz. And that’s something I have never been able to do.
It also now takes me 5 minutes to drop off…that’s of great annoyance to my wife, as during the working week, it’s that quiet time we use to catch up on the days events, but my wife will start talking, I will say a few mumbled words then I’m out…..I’m sure that’s down to the treatment and not the subject matter my wife chooses to talk about…..yes it is I’m sure of it.
So from the good to the not so good

INDIGESTION

Now I’m sure we have all had it and a dose of the old Gavasgon does the job……errrrr nope … Not in this case.
It started about 3 weeks into my treatment and to say “it was like a burning sensation” would be like saying “dropping a piano on you big toe was a slight itch”… It burnt like hell, to the extent that whilst having my chemo, I was bent over, doubled up in pain. 
I was quickly hooked up to an ECG machine (as apparently bad indigestion is a sign of heart trouble … So the doctor told me …. As if I was not going through enough at that time?), but in my case, it was just the impact of the treatment.
Now, 16 months out of treatment, I am on daily doses of 30mg Lansoprazol. Now and then I try not to take it and can get to about 2 nights, but on the 3rd night, it feels like I’m having a hot coal bbq in my stomach and windpipe. Copious amounts of milk and the magic Lansoprazol, make sleep a possibility.
I do have to watch what I eat though, as over Christmas, with all that rich food and even having taken a Lansoprazol, I will be woken half way through the night, a bbq blazing away in my belly, hot enough to burn a sausage to a crisp in seconds.
Bring on the milk and (although I’m not supposed to) another magic tablet……..and after 20 minutes or so …..ZZZZZZZZzzzzzzz.

VOICE

To the delight of my wife,kids and the dogs, there is little power to my voice and when I do try to shout, it comes out with as much power as Kate Winslet floating on debris from the Titanic “Come back …… Come back”
It’s very hoarse in the morning and depending how much I’ve spoken during the day, it will vanish late in the evening. It pitches from high to low like a 13 year old boy going through puberty. I’ve mentioned this to my consultant, he told me that the vocal chords look ok and just to keep drinking fluids
Bang goes my X-Factor days

ITCHING

If you’ve kept up with my blog you might remember that two years before I was diagnosed with cancer, my body started to itch. It started on my feet at first, but it soon progressed to all over my body. After about 6 months of this, I went to the doctor and was diagnosed with erticaria dermographia (or skin drawing disease as it’s known).

Anyway…..I have now spoken to many people on the cancer research uk forum and a few pre cancer diagnosis, started off with this all over body itching. I spoke to my consultant about this and he said, they have no idea why this happens, but in some people it does.
You can all stop itching now…..you will know if you get the itching I’m taking about…. It like having a million mosquito bits on you ….. Yep that bad
Have you all stopped itching yet
Anyway I still have the itching, but control it with anti histamine. Before my cancer I had to take the anti histamine every day, but now it’s only every 4 days or so…. Or earlier if I’m tired or stressed 
Anyway 
So what for 2016
Well much of the same really …. Enjoy life and living
If you don’t hear from me soon that’s just what I will be doing.
I wish you all the best for 2016

QUICK UPDATE

Well it’s now late on in 2016 and I’m preparing for another great Christmas 

I am now 2 years + post treatment and I’ve moved my check ups to my local hospital and they are now every 3 months

After 2.5 years I have finally got back to my pre cancer body weight although my body shape has changed. My pre cancer clothes are still too pig for me so I have no idea wher I have put the weight on.

I’m happy where I am and fortunate 

Enjoy you all

Four months post treatment

Hi there all its now December 9th and a lot has happened since I wrote my last post some 3 weeks ago

Let’s break it down for you.

Hair growth and my beard
I finished Movember with a designer beard and I can thank the Radiographers at Addenbrookes for the lasered designer beard line….honestly there was no trimming involved.

You can see from the pictures below how well the beard grew and where it failed to grow … and where it never will … I always hated shaving my lower neck anyway. A lot of people said the beard suited me and it was not until I shaved it off, that the wife told me that she was quite taken with it. See what you think.

To celebrate growing the beard I went to a Turkish barber to have it all shaved off … massage, flame blasted ears and stinging lemon cologne…Ouch !!!.. Oh as my brother in law did Movember too I treated him too. Here is a before and after

I am glad to report that my brother in law is no longer in the Village People

As I have said in earlier blogs, me growing a beard was not something I did for charity, I just wanted to see what would grow. The hair on the back of my head has virtually come back to my pre-treatment look. So that’s great too …. I don’t get those funny stares anymore.

PET CT scan
Having just told you in my last blog that I was going for my first PET/CT scan post treatment, two and a half weeks later the hospital phones up and wants to arrange an urgent appointment in the next couple of days. The speed and urgency implied by the hospital, sent us right back to the early days when we know nothing and were just ripping out hair out counting the seconds until we were told. My wife especially took it badly and I suppose it’s just one of those rollercoaster emotions you have with this disease … you think you are semi ok and doing alright, then something kicks you hard in the stomach to remind you are not quite out of the woods yet.

So our trip to Addenbrookes that Wednesday morning December 3rd was a difficult one. Neither of us wanting to talk about what we were going to do if it was a bad result, but both of us hoping it’s not bad news. Just trying to keep it all together really.

The 1 hour delay did not help things.

But I am happy to report that in the words of my consultant, I have had a “fantastic response to treatment”.

I do not mean to sound elitist here, or a member of the cancer club, but unless you have been through the last 6 months we have been through, those words were pure magic to us and with Christmas coming up what better present is there? ….. There isn’t!

Although I had the uncomfortable camera down the nose again I can honestly say that after I heard those words, I can’t really remember what else he said. Even a week on from the news I am still playing it over and over in my head.

However, lets not run away with the fairies here. Yes, it’s brilliant and positive news, but a part of me is still sitting down, not getting too enthused about things, and I suppose this side of me won’t get up and shout from the roof tops until I have done my whole 5 years, not just the second round.

But for now, I am in between sporadic internal bursts of jumping wildly like a two year old, whilst externally I’m just taking it all in …. and then jumping about again …yipeeeeeee

My PEG
On Wednesday I got the good news about my PET CT scan results and on Friday (2 days later) I got the brilliant news that I was going to lose my PEG …. thank bloody God.

For the past 28 days I have tried to maintain my 12:07 stone weight and prove to Addenbrookes that I can maintain my weight via eating orally as opposed to supplementing it via a tube. Good riddance PEG you have served me well and kept me nourished in those dark days … but now it’s time to go.

The process of getting rid of the PEG was painless … my local health visitor popped round to the house and just whipped it out, placed a huge plaster the size of a Nintendo DS (God how wished I had shaved my belly before she slapped that plaster on… it’s going to hurt when it comes off), gave me with a few replacement plasters and left … all done and dusted in less than 10 minutes. I am sure it would have been quicker if my Labrador had not kept trying to shove her nose in as I lay out on the sofa.

Within 1.5 hours the PEG hole is supposed to heal up internally and it then takes a week or so externally and no going swimming for 28 days – I didn’t have a problem with that. However shortly after having the peg whipped out, I became thirsty but was too scared to drink just in case a stream of liquid came shooting out of the peg hole … after all why wouldn’t it? Three hours later I had a drink and you’ll be happy to know that no comedy spouting occurred.

I must say though as good as the news was about my scan, for me losing the PEG was a bigger thing.

Although it was vital to keeping me going, towards the end I began to loathe it. It made me feel in-human and was a constant reminder of how ill I had been and how not so long ago that was. Although I have an Olympic size plaster on my chest as a reminder I don’t so much mind that, the PEG no longer dangles from me, it no longer gets caught under the waist of my trousers when I stand up, and when I turn over in bed it no longer follows me and thuds down on the bed sheets….. time to move on !!!!!

Health in general
Everybody tells me that I look well and when I look at myself in the mirror even I would not think I had gone through the last 6 months I have had. I am getting better but it’s when I do the simple things that I realise how weak I still am. Although I take the dogs for a walk I now find that I have to sit down for 30 minutes after, to rest.

As it’s Christmas, I’ve been trying to get some shopping done, but I have a maximum of an hour before the weak muscles in my back double me up in pain (the wife is giving me leeway for this Christmas only!). Getting the Christmas decorations down and out of the garage was a major task, so much so that I have not even got one string of lights on the house yet. But I will get there, eventually.

I think after losing 3 stone and not doing any physical activity for 6 months, that I am operating on about 40% of the muscle base I had pre treatment (that’s my estimate). To this end I have realised that I need to do some core muscle strengthening, but this is not about toning up, this is about trying to strengthen my everyday muscles. It’s amazing how quickly your muscle tension goes and the wife is looking forward to me getting a bum again.

As for everything else, well I am still very tired but no longer need my sleeps in the afternoon, although it still catches up on me now and then.

My voice is still crap, operating at 25% of normality and because of the inflamed vocal chords I am still producing some horrible gunk from the back of my throat, so I still have my morning and evening 45 minute meeting with my friend the nebuliser, which tends to clear things.

My ulcer is still around but not so painful, but painful enough to let me know it’s still there, so I still mouthwash with warm salt water and multiple solutions several times each day to keep my mouth clean.

I sense my saliva is coming back as I have a sensation of taste, but it’s about 20% of what the actually thing tastes like. I still can’t eat bread, pizza or cheese yet and it just cements my mouth shut, perhaps that’s a good thing? But I did eat a large warm sausage roll the other day, it took me an hour to get through the thing then another hour to try and get all the last remaining bits from my teeth, but a few weeks ago I would not have even though of taking on a sausage roll.

My only aim, pre treatment, was to be able to taste my Christmas dinner, a few weeks ago I was beginning to think it was going to be a impossibility, but with 2 weeks to go it looks like I might have some taste back … enough to enjoy it anyway.

I hope you all have a good Christmas, it’s going to be a strange one for me, but a welcomed one, as it’s all worked out well in the end and although the giving and receiving presents is great fun, Christmas for me will be extra special …. I get to spend it with friends and family I love …. Something a while ago I was not sure I’d be able to … so what better present could I ask for?

MERRY CHRISTMAS AND A HAPPY NEW YEAR

Christmas dinner

Christmas Day

Well I am happy to report, that I enjoyed my Christmas dinner.

I did not eat as much as I usually do for a Christmas dinner and I can’t say I was able to taste it all, but what was on my plate, I enjoyed and I finished it all, which was the main thing.

Christmas dinner was a big thing for me this year as it’s as much a family social thing as much as it is a celebratory eating thing. But back in the days of my treatment, I set myself a goal of being able to taste my Christmas dinner, which on reflection was a silly goal to set myself, as there is absolutely nothing I can do to speed up the recovery of my saliva glands, apart from keep my self well I suppose … I might have just contradicted myself there then, I think.

Ok, apart from keeping myself well (don’t worry I am not going to burst into reams of Monty Python here), there’s not a lot I could have done to help meet the milestone of being able to taste my Christmas dinner. I think I knew a couple of weeks before Christmas, that I was not going to regain the levels of taste I wanted.

However, I do have a “version on a theme” of taste and married with my memory banks of what Christmas dinner tasted like, the process of eating my meal was very pleasant and enjoyable

You see eating food, especially when it’s Christmas dinner is such a social and enjoyable thing, but any normal human being would take the taste element of it for granted, and why not?

Now if you take away your taste, food becomes less enjoyable and in a way less sociable. You become conscious of the small amounts you take, or perhaps the limited variety you are faced with (as some foods you just can not eat yet), or maybe the length of time it takes you to eat it, all silly things to any normal person, but to me these are big things, because they separate me from being normal and increase my desire to want to be so.

But, lets not go on a total downer here, I was able to have a bit of everything on my plate, I was able to taste a small element of my food and I did eat it all, even though it was most probably the smallest Christmas dinner I have had since I was 10.

I am thankful that I am where I am in my recovery, as I’m aware of fellow sufferers who, over the Christmas period, are going through treatment for oral and throat based cancers and for them food is an impossibility, and one person is doing this all alone over Christmas …. thats just double crap. So I am not complaining about where I am in my recovery, on the contrary, I am totally grateful.

As Christmas is the season of goodwill, I’ve spent a bit of time trying to send a little enthusiasm to this person and trying to show that things do get better. I must admit though, I would have hated feeling like I did when I had just finished treatment over Christmas, its just not the time to be that ill. But that’s cancer and many types of illness I suppose, it strikes when it wants to, not when you think it’s best for you.

For those fellow sufferers who were not able to eat this Christmas, I am (and there are many others) a living example that things do eventually get better than there are right now and my thoughts and hopes are with you at this time.

So that was my Christmas dinner done and for afters I managed the obligatory Christmas pudding, but had to smother it in loads of cream and trifle to get it down.

We then came to the evening, you know the bit where you tuck in to all the left overs from dinner and this is where I struggled. Usually I would pile my plate high with savoury meats, pickles and co, but cold meats are too dry for me and pickles too sharp, so I warmed up some roast potatoes and put a dollop of sour cream dip on them to moisten them up a bit.

And so another rollercoaster ride begins

There was I, pleased that I had finished my Christmas dinner and had given myself the belief that I’d come far since my treatment, but when I looked at the vast array of cold offerings on display and whittled it down what I could actually eat, it made me realise that I still have a fair way to go with my food….and down the ride I go again

I had choices yes, but not as many as I would have wanted, but with my warm spuds and sour cream in hand I was able to join in the social pastime that is eating Christmas leftovers.

I did try a gherkin though. It tasted acidic and crunchy, but very plain to not as enjoyable as i remember.

Now, before you all think I am bloody stupid for doing so, in our family we have a male tradition of frequenting the garage or we just get kicked outside to partake in a cigar and port. I do love a cigar, especially a good one and I do have my own humidor (a temperature controlled place to keep your cigars). The cancer I have is not smoking relating and me having the odd cigar a year does not in anyway impede my recovery or set my cancer off.

Having a cigar was something I was concerned about, as I was not sure if my throat was ready for it, thats why the smoke had to be a good quality smoke, so I obtained a good Cohiba and am glad to report that the 45 minutes it took me to smoke it and wash it down with a nice port, was thoroughly enjoyed and I felt no sore throat after effects the following morning.

As you can see I am all over the place with getting things back to normality, some things like smoking a good cigar and having a port I can do, without ill effect, but then I can’t eat chips or bread.

I had a good Christmas for a multitude of reasons, I got here, I enjoyed and one massive thing I can shout from the roof tops about is, that I put on 3lbs, something I have not done in 6 months. I am sure a lot of you are looking at the scales over Christmas and thinking “God I wish I had only put on 3lbs” and normally I would be in the same boat with you, but believe me 3lbs is a massive move in the right direction for me.

I hope you all enjoy New Years Eve and looking forward to catching up with you in 2015.

Christmas Day – have a good one

Well, just a short note before Christmas
…..and my recovery goes well.

I am also happy to report that after going 6 months without any alcohol I had my first two pints the other night … a lovely dark mild ale brewed in a cow shed just a few miles from me … it’s a local micro brewery, not something a local farmer had just whipped up on the sly! After losing 3 stone and not having had any alcohol in 6 months I thought it was about time I tried but, I was a bit concerned that I would keel over after a sip or two. I do like a real beer now and then and am happy to report that after the two pints I was ok, but knew I’d had a drink!

It’s just another one of those signs of things getting back to normal.

One of the big things I am having trouble with though is my muscle strength, there’s just nothing there. I am going to have to stop talking about it and do something about it.

However, I am beginning to lose weight again, only a few ounces at at time, but I am now tipping the scales at 12:3 / 12:4, at a time when I am eating fat busting desserts and trying to gain weight. I am sensible enough to know that if I am still losing weight and then embark on some muscle strengthening regime it I could put my body under too much stress.

I must say that after having brilliant treatment all the way through Chemo and Radio Therapy, I do feel a bit “left out in the cold” with regards to informed rehabilitation. However I must also qualify that in that I have not really gone to my GP or Addenbrookes team and told them so, but I will at my next appointment.

Although I have now been back at work full time about 4 weeks, I cannot say that I am finding it easy. In fact, I am finding it very tiring and am beginning to think I have forced myself back too soon. But I have 6 days off over Christmas, time enough to re-energise.

The Saturday just gone, I’d had a hard week at work and at 3pm just thought I would have a few hours kip before friends picked me up at 7pm. Well yep, you guessed it, it was my friends ringing the door bell at just before 7pm that woke me up.

The tiredness is still a big factor, I can fend it off to a certain extent, but then it just hits me at the weekend.

Well, it’s Christmas in a few days and I am looking forward to trying to eat as much as I can… it does not take much to fill me up these days. I still can’t eat chocolate or anything with icing on it, apparently the sugar reacts with the lack of fluoride in my radiated teeth – I am not sure if I have mentioned it before but it’s like putting a piece of foil on a filling (why anyone would ever do that I don’t know, but if you do ever try, then “Ouch”, that’s how sugar hurts me).

So it’s meat and vegetables all the way for me over Christmas.

One thing I have noticed about my diet, is that because I can not take sugary things, I tend not to snack. Not because I am not hungry (of which, most of the times I am not), but I am limited as to what I can snack on, so I don’t bother and I think this might also be one of the factors not helping me put weight on.

Please, don’t anyone come back and say “Nuts”. I can’t eat nuts as I have not got the dexterity of my tongue to be able to get to all the small pieces from the nooks and crannies in my teeth. I don’t have enough saliva to enable a moist departure down the back of my throat either.

I did try some peanuts, but after trying to chew on a few for a good 10 minutes I must have spent the next hour trying to get all the little bits from my teeth. You’d be surprised how jaw aching that task actually is.

…Anyway, it’s Christmas dinner today – a massive day for me as this was the only aim I set myself. I am glad that I have some taste, so no soggy cardboard today and I am determined to get through all of it. Food at the moment is a necessity, obviously as it is for us all but, what I mean is that I could easily sit at the table have a bit of meat and a few spuds and call it a day – that’s not enough to keep a mouse full let alone me. So, I will pass the point of enjoyment and satisfaction and this will become and endurance test. It’s something I must do, not only with Christmas dinner but with each meal now. So for the other 9 people I sit down with today, please don’t feel that you have to stay at the table until I have finished … I will still be trying to get through my dinner long after you have finished your Christmas pud ….. but I will get there!

Have a great Christmas Day everyone and enjoy your Christmas dinner to the full, I know I will for loads of reasons.

xxx

Twelve Weeks Post Treatment

2nd review… sorry this post is a bit late

I am now 12 weeks post treatment and just had my 2nd review. I thought I was just doing ok, but according to my consultant I am far ahead of what he expected, so I suppose that’s brilliant news in a way.

Once again the old camera took a trip down my nose and I still can’t fathom out if it’s an uncomfortable tickle or just painful. I guess I will never get used to it. My wife quite enjoys watching as she gets to see down the back of my throat via a TV screen, it’s better than TOWIE I suppose?

The consultant had a good feel round my neck where the secondary cancer lump was and couldn’t find anything so has organised a PET/CT scan for this monday for a more in depth look. They’re not expecting to find anything, apart from the disappearance of the lump. I have explained the process of the PET/CT scan in a previous blog so won’t go through it again here.

Before my 2nd review I had an appointment with the dentist. It was a very informative session and I got a free and thorough clean too, it’s 10 times better than the one I get at my local dentist. Anyway she was full of information and advice on how to look after my teeth post radiation and gave me lots of freebies to help … it’s strange how one can get excited about freebies from your dentist.

As I am not producing any saliva she gave me a great tip about syringing a substance (with my teeth closed) between the inside of my mouth and my teeth and then massaging my cheeks on the outside to get the inside well lubricated. I was ok with the theory of this until she told me that I need to go buy a tube of “KY” jelly for this. Of course I could get this free on prescription from my local GP, but I thought it best that this time I would go to a non local Boots Chemist and seek out the product there. It took me right back to when I was a teenager, when condoms where only available from behind the counter, the embarrassment and gumption you had to pluck up just to go and ask. I am older now and careless about what strangers think of me – but I still asked my wife to buy it for me….she was none too happy at this, thinking that the shop assistant would surmise that she was nearer a certain age than she’d like to admit!

So in the privacy of my own home I took her advice, it’s a tasteless substance to me and after several sessions I am not yet convinced that I have noticed any change, but I will keep trying.

I am now determined to get rid of my PEG, so for the last four days I have not taken anything via my peg, it’s all been oral based. Once I have gone two weeks without using the PEG and can maintain my weight, I can call Addenbrookes and let them know. If all goes well they will take the PEG out two weeks later.

Yippee I can’t wait.

I am a pound down on my weight already so I am going to have to start the carb loading. The trouble is that the longer it takes me to eat my dinner the more painful my tongue gets and the colder my food gets, but it’s something I will have to try and get over to keep the weight on.

Without taste food is very much a chore for me, the ulcer, although sore, is at a stage where I am used to the pain when eating, so I have now started to eat at work over a lunch-time in an attempt to keep the pounds on. I have not eaten at work during lunch for some 4 months now, it’s always been a milkshake via my tube.

It’s not been easy though, the first lunch I had a Cornish pasty (I love Cornish pasties and foolishly thought I could eat one), it took me an hour to eat it, well when I say eat it, I had to leave the two ends and the ribbed top, as too much pastry in my mouth at one go has the effect of cementing my mouth shut, but I got through all the meat and potato, even though it was cold by the time I got to my so called end.

Today I tried a seafood salad soft white baguette. Bread is just a big “NO NO” for me, but I have not tried bread in ages so thought I would give it a go, at least this was not going to go cold on me. It took me two hours to demolish an 8 inch baguette, bread tends to hunt down every saliva molecule in my mouth and kidnap it, whilst at the same time small pieces of bread hide in the gaps in my teeth, it knows I can’t use my tongue to hunt it out and dislodge it. I got through the main baguette in two hours, I then spent the next two hours trying to extract the minute bits from my teeth, hopefully that amount of bread is going to put on a few pounds.

As I have mentioned it still hurts to eat and I am trying my best not to aggravate the ulcer too much whilst at the same time keeping my swallow mechanism going; Oramorph and Codeine assist in that plight to some extent. The additional mouthwash solutions I have been using Gelclair and Caphosol A&B have not worked as well as I would have hoped. When I explained this to the consultant, his advice was that there is nothing they can give me, I am just going to have to deal with it and in time my body will heal it…..So that’s telling me!

My voice still has no resonance to it so for the second year running I am going to have to cancel my audition for “Britain’s got talent”. The consultant was not concerned about my voice and assured me that it’s a side effect of the treatment.

My beard is going well, well enough for someone that has had Radio Therapy I suppose. You can see from the picture below that there is no bristle growth under my jaw line, this is where most of the radiation was targeted, it’s also the place where the smaller saliva glands are. The main saliva glands are where my sideburns are and as you can see, I have got good growth there, so it’s a good sign the majority of my saliva should come back but I just have to wait and see. It could take from 18 months to 2 years for my saliva to return, but wherever I am at the 2 year period is where I will be for the remainder of my days, so I have got some time to let this kick back in.

Well tomorrow is PET/CT scan day, no eating for 6 hours before and keeping away from people for 6 hours after.

Eleven weeks post treatment – Stamina?

From being diagnosed in April 2014, cancer really took hold of my family and where we would usually holiday, go sight-seeing or just spend time with each other during the school summer break, summer for me this year was stolen. I’m sure as a family we all felt the same and even though my wife tried to make sure that our kids had a great summer, I am sure it’s one we will look back on with mixed feelings.

So now that I am out of treatment and with the school October half-term upon us, we decided to try and make the most of our year as a family by taking a trip into London to see family and some sites.

It’s only when I started getting my stuff ready for the couple of days away, that I realised I was packing more meds than clothes. Coupled with this I have noticed that our bedroom bin gets full to over flowing every couple of days and when I emptied it the other day, it’s just full of the daily discarded medicines I use first thing in the morning and last thing at night.

I think the next couple of days are going to be really exhausting for my wife and I, but it’s about time we did something normal as a family, so for me personally I am going to try and do my utmost to stay pleasant, engaging, enthusiastic and awake, at least until we get home in the evening … let’s see if I have the stamina.

Well I’m back and I survived. I won’t say I did brilliantly as it did catch up with me in the end, but we had a nice trip to the Natural History Museum, China Town and Spitalfields Market, but the trip away did make me realise that since July I have partaken in zero physical exercise. Correction …. I take the dogs for a walk, but apart from that, zero physical activity.

In a short space of 4 months my core strength has just withered away and I now need to slowly build it up. My wife keeps telling me to come to Pilates, just not the class she is in! I think I will seek out a yoga class after Christmas and try to get myself fit enough to play football, squash and golf again.

I won’t say that pre treatment I was as fit as a butchers dog, but for a 51 year old I could give you a good run for your money! Ever since I was knee high to a grass hopper, I have always played some sort of competitive sport, so it’s a real pain not doing anything now.

In my previous blog you will know that I have been trialling a mouthwash Caphosol A&B to try and get rid of my ulcer. I don’t think it has worked. I did notice some mild improvement at the start but it never got any better than that, so I’m now onto the next solution Gelclair. It’s a thicker solution and tastes (smells!) a bit like aniseed, but it appears to be providing longer lasting protection however, I am only 2 days in – let’s see what happens.

My voice is still only about 25% of what it was and even at this level it comes and goes. I am trying to hydrate myself as much as possible, but plain tap water is still to hard and abrasive for me to drink so the only thing I am drinking at the moment is sparkling water – and bottles of it. I still get the stares from people in the street when I am talking and now that I have mentioned it to my wife she has started to notice the looks too. Who cares??!

I have also noticed this week that I have not been so tired during the day and have now gone several days without feeling the desperate need for an afternoon sleep. Let’s see what happens next week when I have a longer week at work.

UPDATE: Having taken a few days off then had 3 full days back at work I think tiredness caught up with me at the weekend – Saturday morning I woke up very grumpy and had to have a 3 hour sleep in the afternoon. So I think in truth that the fatigue might be on the wain, but it’s catching up with me over a period of days as opposed to every day.

It’s now Halloween and the last day of me shaving for a month as I’m doing Movember, lets see how much of my beard comes back and how much will never come back again. On the plus side the hair round the back of my head continues to try and grow, but it’s very baby tufty like.

The thing that I am longing to come back is my taste. It was very infuriating walking through London and China town and not be able to just go into a restaurant and have what I fancied. I must admit it did get me down a bit as eating is a social thing you do with your family, but by the time everyone has finished theirs sweets I am still trying to tackle my half plate of now cold main meal. There is a sense of taste emerging, but it’s sporadic and on strange things.

For instance, my wife cooked lamb with garlic, I could not taste the lamb, but the garlic was too over-powering for me, but then I can get through half a plate of chicken korma – although I tend to mix the rice in the korma source and end up leaving half the chicken. But then we went to a Chinese (eat as much as you can restaurant – wasted on me really) in China Town and I could really taste blackbean sauce, nothing else, just the sauce.

My desire for sweet things has just gone, not only do I not crave sweet things but they are really painful on my teeth – it’s like when you get a piece of foil and touch one of your fillings. I am not sure why, but I have a dental appointment at my monthly review on Wednesday so I will try and find out why sweet things hurt my teeth not that I want to correct it I just want to know why.

Onwards and upwards !!!!

10 weeks post treatment

We had some brilliant news last week, the biopsy from my tongue showed no signs of cancer, so that was a huge weight from our shoulders.

However the ulcer/radiation burn n my tongue is still causing me a lot of problems; I am still not able to eat, so I’m relying on the milkshakes via the peg and now for the first time in 25 years I have dipped under 13 stone – which is not a healthy look on my 6’3″ frame.

So enough is enough, I need to get the ulcer situation sorted. So via contacting Addenbrookes they recommended a drug called Muguard, unfortunately it’s not licensed in the UK so my GP could not prescribe it, but instead they offered an alternative synthetic saliva spray, that keeps the mouth moist and hopefully helps repair the ulcer.

I have now been using the synthetic saliva for 5 days and not really noticed any improvement, so it was back to the drawing board.

My wife did a lot of research and came up with two alternatives that she ran passed Addenbrookes and got the ok. Then she quickly made me an appointment with my GP and he was happy to prescribe them. These are as follows:

Gelclair – A concentrate in a sachet just mix with water and mouthwash

Caphosol A & B – Two solutions that you only mix in one glass just before you mouthwash, it has something to do with negative and positive ions which help the solution coat and protect the tongue I think.

On the directions for both mouthwash solutions it says in big letters “Don’t swallow”

It’s early days yet and I am only trying the Caphosol A&B at the moment. I will give it 5 days and see if there is any improvement, if there is I will stay with it, if not it’s straight on to the Gelclair.

Watch this space….

My voice is …. well it’s not really. I sound more like a Dalek than a human, to the extent that whilst out shopping with my wife, as we parted to go into different shops, I said something to her, I can’t remember what it was, but four people close by just turned round to see where that strange noise was … the strange noise being whatever chords emanated from my mouth.

I won’t say I am embarrassed by my voice as it’s the only voice I have, so you will all have to put up with it. It does get annoying when I can’t pronounce words properly because the ulcer inhibits the use of my tongue and coupled with less than 25% of my voice at 20 million octaves lower than it is normally, repeating myself is a common and tiring occurrence at the moment.

More good news … My hair is starting to return round the back of my head, from the front I look semi normal, but from the back it still looks like I am slowly being re-introduced to the community … no offence meant there.

When I am out with my wife she is very protective of the stares I get. I can’t see those who stare at me because they are behind me and I couldn’t really care to be honest, but I am sure my wife sometimes just wants to shout at them “it’s cancer, alright. …… Have you had a good look now?” Bless her….

Everyone I have met have said how well I look and I suppose I do really, considering what I have been through. As I said, from the front, I have all my hair, my neck no longer displays any radiation burns and there is no scar around my neck as I did not have the major operation associated with my type of cancer (double fingers crossed there). I suppose the only physical difference with me is the weight loss, but you would not know to put that down to cancer if you didn’t know me.

My wife is my constant reminder of not necessarily how ill I am (or should I say “was”), but how weak and frail I am, this is obvious on how much I still rely on her to get me through the day. She has said to me that if I had lost my hair it would be a better visible indicator to myself and others as to how frail I am. Perhaps if I had lost all my hair it might slow me down a bit, but I want to get better and as quickly as I can. I am not one to languish around being ill and have people look after me, although I must say on this occasion it’s been nice, a Godsend, very much needed and gratefully appreciated.

So in the absence of me having any visible signs of having had cancer, I have to thank my wife for keeping me on the straight and narrow path of recovery, as if left to my own devices I would undoubtedly pushed my body too hard and too fast, thus elongating my recovery.

One visible effect of cancer to me is my lack of beard, even so, I loathe shaving and I let what beard I now have grow at the weekends. When it does grow all I can liken it to is a good old fashion RAF twiddly end moustache and bushy sideburn look. I have decided that I’ll let it grow for “Mo-vember” (let your beard grow for for the whole of November, for charity) so let’s see what it turns out like. Chocks away .. Roger …… Roger that!!!

Well my blog has been up and running for over 3 months now and I have had over 4,200 views from all over the world, from USA, Canada, through most of Europe, China and Australia, the only big place I have not cracked yet is Russia, not one view from there at all. Perhaps the Russians have cured cancer and are keeping it quiet? Who knows.

I have also had loads of messages from people I don’t know, but are in a similar situation as myself, or have a close family relative that is. All have told me how informative my blog has been for them and that was one of the three aims of the blog. So I am glad I am not boring absolutely everyone with some of the detail here.

Cancer has had a high profile in the media lately, with the parents who were arrested for kidnapping their son (is it possible to kidnap your own son?) from hospital, to whisk him off to the Czech republic for proton beam therapy (see me blog on radio therapy for the differing types), the Stand Up To Cancer campaign and the sad news regarding Linda Bellingham and Alvin Stardust.

If I cast my mind back to pre April, If I’d heard that someone had cancer I would have thought the worst. But knowing what I know now, although there are many cancers that have a poor outcome, there are more that can be cured, even more so if found in the early stages.

The Stand Up To Cancer week was not only aimed at funding and awareness but also an understanding of the disease and the huge technological advances taking place in science to eradicate it. I must admit, some of the stories were difficult to watch without shedding a tear, but I count myself fortunate to be able to say that, because I am one of the lucky ones.. I am one of the many who can now say that “I am surviving cancer” and it’s thanks to all the funding and brilliant research that takes place, a lot of it in the UK.

Thank you all …….

First Review

After treatment they leave you alone for about 6 weeks, in my case it’s been 7, before you go back for your first review. I was also hoping to get the results of my tongue biopsy I had last week.

It’s been an anxious week for us and you start to thinking “Why have they not called with the result of the biopsy … Is it cancer?” Silly stuff like that.

We were expecting to see my main consultant, but we got called into to see a very young doctor, it was a bit “deja vu” for us, as it simulated my original diagnosis. I guess they leave the bad news as some sort of training for young doctors or it’s a hierarchy thing?

Coupled with this there were a few other people in the room, only one of which we had seen before. Once again this put us back on alert as it was similar to when I was first diagnosed.

Anyway after we all introduced ourselves and sat down, the young doctor asked me how everything was “Have you got my biopsy results?” I said as quickly as he stopped talking.

They had not got them and did not appear too perturbed about not getting them either, so we moved on.

I explained the problems I had been experiencing and then the doctor had a look down my throat by passing a camera up my nose, this tingled at the start, as it got to the back of my throat it became uncomfortable, as it went to my larynx I began to gag.

I had warned him before he put the camera down my throat that I had just had one of my milkshakes, this made everyone else in the room take a couple of steps backwards as he inserted the camera.

Last week at my biopsy I mentioned that I had started to lose my voice again, so this week, with the camera still down my throat they had a good look at the vocal chords but also asked me to say a few things so they could see how they responded. That made me nearly sneeze which would have been interesting. Anyway it all looked ok and they put it down to the fact that I was still getting over the radiation, so losing my voice was not uncommon at this stage.

I also mentioned that the whole right hand side of my face felt like it had been slapped and at times it gets very painful, its like when you have been playing in the snow and your hands get so cold that you can not feel them, then as the warmth comes back to you hands …. its that sort of pain, all over the righthand side of my face.

And this is where I was told that Dr Who and I have something in common.

Apparently the Radio Therapy damages a lot of the nerve endings and neural pathways, the sensitivity that I am now felling are those nerve endings and pathways regenerating themselves….so I am told!

So “I feel your pain Dr Who”.

In short, I am 7 weeks out of treatment and I am expecting too much of my body; this what they are telling me and they are right I suppose.

I have a real hankering for a cheese and pickle sandwich though, but there is not much point going for that until my taste is back and that’s a sandwich that’s all about the taste.

As you can see the food thing is still a mental issue with me and more so at the moment, because of the biopsy, it’s too painful to eat, so most of my intake is coming from my PEG still.

Although the PEG has been of great benefit to me and still is, I am trying desperately to wean myself off of it. If I am honest I am beginning to despise it. I feel it makes me less of a man, in fact less human and I can’t wait to get rid of it and look normal again.

Whilst I am on the subject of my PEG I feel the need to vent. You get given a temporary PEG for the first 4 weeks, then change to the one I have now. Let me tell all you NHS buying personnel that the temporary one is far easier to handle than the one I have now, so stop buying and prescribing it … the one I have now is a complete pain!

The end that I plug my syringe in is too heavy and will not stay strapped to my stomach with a single pice of tape. The clamp, that is supposed to create a seal between your belly skin and the inside of your stomach wall, does not work brilliantly, as when I wake in the morning its moved half a centimetre from my belly and because of this, certain internal stomach juices seep out and go crusty on my belly …… not a nice thing to wake up to in the morning. I hate this new PEG … have I said that already though? Well I do.

Have a look for yourself … old PEG … new PEG

I’m still sleeping like a baby, although my wife tells me that I am now competing with the dog for the loudest snore in the house. My excuse though is that my airways are still blocked by this horrible cottage cheese mucus. Hopefully that will go soon… the mucus and the snoring that is.

As for my general fitness, well it’s none existent. Although I take the dogs on a 2-3 mile walk, I sometimes have to stop to catch my breath. I now want to be getting back to playing 5-a-side, but that’s not a good idea with the PEG still in. I have no stamina for it, and I will most probably hover around in goal for the first couple of weeks, which also won’t help if I have got the PEG in. So the plan is to try and build my stamina and muscles up this side of the year, get the PEG taken out and in the New Year get back to sport.

Perhaps one good thing is the weight loss, but I am now down to 13:02 from my initial 15:05. The troubles is nothing fits now, my trousers hang off my hips and my shirts drape off my shoulders. So at the weekend I had no choice but to buy some new clothes, smaller ones and whilst trying trousers on and seeking advice from my wife in the shop (come on, what man doesn’t?), she informed me that my backside had disappeared and when I looked in the full length mirror I have to agree that 13:02 does not look good on me.

So come on ulcer … clear up
Come on saliva…. come back
Come on taste … tantalise me

For it’s time to stop losing weight and put some of it back on and to enjoy doing so.