My Journey – the beginning (having already given you the end….DOH!)

After my blog a couple of days ago, many of you have asked about the background story which got me to where I am today, so are we sitting comfortably?

….then I shall begin.

Let me say at the outset I undoubtedly did the ‘bloke’ thing and left it a little too long to see a doctor.  I did however know very little about skin cancer, sure I’d heard of it, I’d certainly no idea there were different sorts and definitely had no idea it was a killer.  Like most people I was under the impression you turned up at the Docs, they cut it off and on you went with your life.

How wrong is that?

I’ll just take a mo to talk about Melanoma, stick with me, it won’t take long and if it only helps save one person having to go through what I (and many others) have had to go through (and still are) then it will be time well spent.

Melanoma is the most severe form of skin cancer and until very recently had no real treatment plan (more of that later). 

It is highly unpredictable and as a result, a real so and so to control.

It responds best to early detection but can return years later.

The vast majority of cases are caused through exposure to UVA or UVB light, but about 20% occur for reasons not yet known to the medical profession.

Generally it manifests as a mole or skin blemish which you may have had since birth, changing size, colour or shape.

It is the fastest growing form of cancer, in the UK, amongst young people (17-35 years) and has grown in tandem with the growth of Holidays abroad and the use of Sunbeds.

I’m sure I will have missed some vital info out and I’m equally sure that some of my fellow sufferers can add important facts in the comments section below (it’s a very close knit community that support each other in the most fantastic way), but for now that will do as I don’t want to bore you.

Anyway, where were we?  Oh yeah, my journey…..

I gave in and went to my local Doc in April 2011, to my surprise he was 12 years old.  Having taken my shirt off and exposed the thing on my shoulder, he panicked slightly and went and got a 40 year old. She immediately recognised I was beyond their help and said she’d refer me to the hospital Derm people – she did however think it was Squamous Cell Carcinoma (whatever that was) and reckoned I should be OK.

A day later I was being seen at the Hospital and a few alarm bells started to ring.  After all how often are you seen that quickly on the NHS?

The Derm had a real good look and came to the conclusion that indeed it was a Squamous Cell Carcinoma (there was that thing again – best get on Google), so was I duly booked in for an op to have it removed in a weeks time on the day surgery unit, under a general, which I’ll be honest didn’t exactly fill me with the joys of spring.

A week passed, slowly.  Under the knife I went. The offending article was duly removed from my shoulder.

Job done – move on…..

As this point the first twist raised its head.

Pen, the good wife, works in Histopathology – they check out all the bits cut off people for nasties etc.  Obviously ethically she isn’t allowed to process anything concerned with family or friends but after my ‘thing’ had been checked, nobody in the department could look her in the eye, so she knew it wasn’t good.  However she wasn’t allowed to comment to me – must have killed her for a day.

The next morning the phone rings asking if I was available to ‘pop into the clinic for a chat with the consultant this afternoon?”.  Now that can’t be good thinks I.

In the car I jump and drive, feeling a tad nervous it must be said, to the Hospital and settle myself in the first of many waiting rooms I’ve sat in.  I reckon if I was paid for every minute I’ve spent in a waiting room I’d be a bloody rich man.  Anyway I digress…

Pen was with me and I kinda knew she knew what was coming.  I had no idea.

I was called in and the consultant didn’t beat about the bush – I prefer it that way.

“Well we’ve tested what we removed from your shoulder” said he “and unfortunately it’s a Melanoma.  Given how deep it was the chances are you will die from this”

You what???????

Melanoma?

Die?

When?

Why?

So many questions…..

“However” he continued “I retire in 20 years and it’s my ambition that you’re still my patient then.”

“Mine too” was all I could muster!!

I never saw him again.

Apparently in cases like mine they like to take a big margin away from the site where the growth was, as the cancerous cells (by now I had found out this was cancer – I had no idea) spread across the skin.

So in I went this time for a much more serious op.  A chunk the size of a CD case was removed from my shoulder and a piece of skin, slightly larger, was shaved from my thigh and grafted over the crater, dressed and held in place with 70 odd staples – I know how many were there as the nurse counted every single one as she removed them a few week weeks later.

Having healed well, I was called into the clinic had a chat with another consultant, who was quite keen to get me on a trial.  Apparently there was no real standard treatment for Melanoma, other than what had been sorted 30 years previous and that it seemed wasn’t overly successful for advanced cases – I had an advanced case – great.

A CT scan was arranged as part of the run up to said trial and that found that there was a good likelihood that the disease was in the lymph nodes under my left armpit.  Into the hospital I went and had what is the worse test I’ve ever had – a core biopsy.  Essentially they numb your armpit, cut into it, and with the aid of a scanner guide a needle into the lymph node, not just any old needle but a thick old thing with a hook on the end and fire it into the node.

Did I mention that they numb your armpit?

Except in my case they didn’t – as they fired the needle I bounced off the ceiling several times.

An injection later (thanks then) and the procedure was over and the waiting began again.

Sure enough when the results came in, the beast was in the lymph nodes.

Bye bye 27 lymph nodes.

So, back in to see the consultant, who was still keen to get me onto a trial (a different one) and the cycle started all over again.  CT scan as part of the run up, lymph nodes identified as likely to be infected, this time in the neck, needle in Neck to take a biopsy, spread confirmed.

Bye Bye 72 lymph nodes – who knew you had that many in your neck?

Back on the treadmill and the consultant had one further trial up her sleeve to get me on.  Yep you’ve got it…..CT scan, spread discovered, this time to the lungs, which was obviously serious stuff, as at this point I was transferred to Southampton Hospital under the care of Professor Ottensmeir.  Everyone spoke very highly of him and a Google search later confirmed I was in very goods hands.

He carried out this test and that test to find out what genes I was carrying that could be targeted and gave me a choice of two trials; one was tablet based, the other an injection that delivered an electric shock at the same time.

He was keen on the injection.

I wasn’t.

Luckily I didn’t carry the injection gene but did have the BRAF one, which enabled me to get on the Vemurafenib trial (why don’t they give these drugs easy names like say….Dave?).

The initial results were amazing.  My tumours shrank by at least 50% and it had little effect on my life – bit of a rash, bit of joint pain but nothing that I couldn’t put up with given the alternative.  So for 14 months I took 4 tablets every day and all was well with the world….

Now I reckon that catches up with the last blog.  A bit arse about face I know, starting at the end and then filling in the beginning afterwards but that’s what you asked for!!

A few foot notes.

The drug was that good for me, that I was able set up and take part in last year’s  somethingsillyinjune event – 100 miles in 3 days.  God, I hadn’t even run 10 miles since I was in the Army 16 years previously.

I was the patient representative on the NICE review panel for the Vemurafenib drug, which was finally accepted as standard NHS treatment for Melanoma.  The first advance in treatment for 30 years.  My input was nothing compared to that of the lovely Gill Nuttall, who fronts up Factor50, which is why it’s vital to support them – they do such good work.

But all the same, I’m proud of what I did and feel that it’s some sort of legacy when I’m gone.

So now after all the recent  trials and tribulations I find myself sat here; bloated belly, head shaved with a leg, that at least has shrunk down from elephant to cow size, sorting out this year’s challenge, whereby  I’m going to send 13 of my family & friends across the Pennine Bridleway on my behalf.

Now, they’re the real heroes, so please support them with a donation. Every little helps and days to do are getting few.  Pop over to www.ssij.co.uk and you be a hero by hitting the donate button.  Not only will it make you feel good but you’re be allocated a ticket for every pound you sponsor us as a thank you, which gets you into our Raffle of Excellence where you could win a proper top prize.  Have a watch of the promo film (http://youtu.be/5NKIeMsVPL0) for full details and the prize list – you won’t be disappointed.

OK, I’m out of here, stuff to do, people to see and only one lifetime to do it all in.

If you got this far, Thanks.

If you didn’t, well……… ummm

TTFN

DSCF0840

elephant leg

neck dissection


 

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