I am motivated to share my experience as, touch wood, so far I have been so lucky in so many ways.

OK, so no-one would ever claim that being diagnosed with cancer can ever be called good news, but how we are managed, which helps us to manage ourselves is vitally important. Cancer may be a physical ailment, but the psychological aspects are also very important.

So here goes with my story.

The medical bit

In February 2002 I was diagnosed with a clear cell sarcoma (CCS) on the ‘funny bone’ of my left elbow. In fact the funny bone is not a bone at all, it is where the ulna nerve trunk by-passes the elbow. The tingling feeling you get when you hit the funny bone is caused because the brain gets a confused signal from the nerves emanating from the outside of the hand, the little finger and outside of the ring finger. (All relevant information as you will read later.) I was (and still am) an exceedingly fit person who has never had any prolonged illness.

How it all started

Back in 2002 I was a nationally ranked Masters swimmer but was beginning to get funny cold and tingling sensations in my hand towards the end of an hour-long training session. This slowly progressed until I started to lose pulling power when swimming, and ultimately couldn’t even swim a couple of lengths. In the meantime I’d had some physiotherapy, but then a small disc-like lump appeared. Suddenly I couldn’t even swim a couple of lengths at full throttle and could only sleep in one position, even then only with painkillers. On feeling the lump the physio recommended surgery, so off I went to the GP for a referral.

A mis-diagnosis (or refusal to diagnose)

Unfortunately I then had a very awkward session with my GP. He said there was nothing wrong with me, the lump had probably been there all my life and I’d only just noticed it.
Eventually I was referred to a local orthopaedic consultant (BarryHinvers) who operated (only 2 week wait on BUPA) and aborted the op. as it was “beyond his competence level”; didn’t I say I had been lucky?!

Bad and scary news

Barry had taken a biopsy and ten days later I got the bad news: either a very rare cancer (CCS) or a metastases from a melanoma somewhere else in my body (the real scary bit). The consultant said there were only 2 specialists he would want to refer me to, one was on holiday, so he picked up the phone (a Wednesday evening) to make me an appointment with a Mike Smith in London for the next Monday.
The next day Mike’s secretary called me to say he had already reviewed the notes and photos (from the op.) that had been couriered up and he’d like to operate at 0730 the following Tuesday - talk about fast-paced service delivery if you go private!!
Mike turned out to be all that any patient would want. A week after the op. I got the news that it was definitely a CCS, but just to check I needed a PET scan to make sure that there were no other tumours elsewhere in my body.

The rest of the story

I’ll pick up the pace now

PET scan clear

Histology showed no clear margin – difficult given where the tumour was

7 weeks of max strength radiotherapy, zero secondary side effects, but if you have radiotherapy do whatever the nurses say in spades, I was heavy on the moisturising cream and so had fewer burn effects than most patients

MRI scans of elbow and CT of chest (lungs are be where any spread would most likely show)

Feb 2003: first local recurrence

• Major op to remove all soft tissue and some bone from elbow and replace it with vasculated free flap graft from left wrist
• Again histology showed no clear margin
• Now no feeling in left little finger, outside of ring finger and outside of left hand
  

Asked to consider a pre-emptive amputation above left elbow. Gulp! o Decide not to do this as it may be a case of shutting the door after the proverbial horse has bolted.

December 2004

Another local recurrence, but Mike said enjoy XMAS and New Year before having another op

Jan 2005

Successful excision, a narrow clear margin achieved – hooray. Then regular scans for next 3 years and Mike retired. Now under Prof. Meirion Thomas at the Lister

Feb 2008

Lump on lung appears and 6 weeks later it’s still there. Big debate on whether to excise or monitor but I felt if it’s spread just get the damned thing out, handed across to Simon Jordan as the Prof. isn’t a lung-operation specialist. Also some other spots/nodules on lungs, so he’ll have a look at those as well

April 2008

Left thoracotomy and metastasectomy. Immediately after the op Simon says it was definitely a tumour, so we’d done the right thing. Then a wait for the formal histology report. Wait for it … 6 day later Simon appears and says he has the histology, and there is  nothing malignant. “We weren’t expecting that, were we?” says I. “No” he replied, “I am going to get a second opinion from the top guy at the Marsden”. 

30 minutes later my wife arrives and I tell her she just missed Simon and then dissolved into a flood of tears, I’m trying to say “It’s all clear”, but it takes Marion a while to understand me between my blubbing. You know we all do a mental role play about what news might be, in this case we were told one or two lumps can be dealt with, but if there are several then really it’s pretty grim news. So we were totally unprepared for such fantastic news. Incidentally it took me a good couple of months and more before I was able talk through this excellent news without a big emotional lump in my throat. By the way, that evening I called my sister to give her the good news, but again struggled to get the message out without breaking down even though I was only talking to an answer-phone.  She then took great pleasure in replaying the message to her two teenage sons, just to prove that grown men do cry!!!

Marsden confirms that “Despite the absence of chemo/radio therapy” to the affected are this lump was a CCS tumour but “fully necrotic with no active cells “. Talk about good news. I asked Simon how often he had excised a fully necrotic tumour from someone who hadn’t had any chemo/radio therapy. I’m just the second in his care!!!!

March 2009

Now clear for a year and still counting my blessings. Just to back-track on a few things. I said I had been very lucky, here’s a few other reasons why:

• My wife
  · Everyone asks about me, but I often think that this is harder for the partner than the patient
  · Marion has been an incredible support to me, even though I know she has worried far more than me
• I am strong-willed and am always positive
  · Someone more subservient to authority might have walked out of my GP’s surgery convinced that there was nothing wrong
  · Remember if you can worry yourself sick, then the opposite is also true, so being positive is incredibly important
• I had BUPA cover through work, which enabled me to see Barry Hinvers a couple of months quicker than if I had been an NHS patient
• We caught the tumour early, the diameter was a little bigger than a 5p coin and maybe twice as thick
• Mike Smith was very open and despite the fact that this is all very serious stuff, we could have a laugh and a joke about things – patient empathy is such an important factor; I had a friend who was diagnosed with cancer a couple of months before me
• My employer (General Dynamics UK Ltd) has been very supportive and sympathetic
• It was on my left elbow, but I am right handed
• I play golf left handed, so it’s the top fingers of my right hand that provide the grip, if I played right handed I would have sold my clubs by now
• I can still enjoy my swimming, albeit somewhat slower now

Finally, my GP

After my radiotherapy I wrote a formal letter of complaint to my GP, having taken advice from the local health authority advisor. Apparently the awkward session with him was all my fault. I had “belittled his standing” by asking for a referral based on a physiotherapist’s diagnosis … even though his own diagnosis was wrong, and the physio’s was right! Needless to say, I found myself another GP PDQ

So there we are, my story so far. The two things I would say to anyone facing a similar battle with cancer are: stay positive and to talk things through with those close to you in an open manner. Both will help you, and just as importantly it will help those around you that care for you and vice versa.
Good luck.
ChrisD