Thursday, May 10, 2012

More feedback- from Graham May 2012

Friends you know I like to share feedback I get from readers with you so I am pleased to share this with you.  Other people's stories are so important - thank you Graham I am with you.

Hi Nigel, just dropping you a line to say that I came across your blog 
today whilst searching for 'radical neck dissection' on Google, and just 
wanted to say that I read it from start to finish as so much of it seems 
to parallel the journey I've found myself on over the last (almost) year 
- in fact it seems your journey was finishing with your final 'all 
clear' in July of last year about the same time mine was beginning, when 
I received my diagnosis of what a persistent little 'infected' ulcer 
next to my wisdom tooth really was late last June....

Its been a nightmare journey since, first I was told that it would be a 
fairly straightforward operation to remove the cancer, then I was told 
it appeared to have metastatised to my lungs and it was basically 'game 
over' for me. Then I had a PET CT Scan which revealed that it HADN'T 
spread after all and the op would go ahead, and a date was set. In the 
meantime the tumour spread rapidly, and a week before the op was 
scheduled I was told that it had spread too far, and that I was now 
inoperable. Once again it was 'game over' for me, and the best they 
could do was offer some chemotherapy to slow it down. I was admitted 
into hospital in late August for 5 solid days of chemo which knocked me 
for 6, and ended up being on the ward for nearly 3 weeks due to side 
effects, with only a 6 day break before going back in for the 2nd part 
of the cycle, another solid 5 days of chemo. however, the debilitation 
it caused was obviously a good thing as it radically shrank the tumour 
(at one point I remember literally spitting out lumps of dead cancer 
cells in the hospital bathroom), and led to me being 'reclassified' as 
once again being a candidate for surgery - my consultant said it was the 
best response he'd ever seen to chemo, and the first time he'd known of 
somebody being reclassified in this way.

Surgery finally took place on October 12th 2011 at Broomfield Hospital 
in Chelmsford, where they removed half my lower jaw which they replaced 
with a bone from my leg, although they had to operate twice as the first 
graft didn't take so they had to take some tissue from my chest. When I 
came round I got the good news from my surgeon that they had 
successfully removed the tumour with a good margin, and that my lymph 
glands, which were previously believed to also be cancerous, were in 
fact completely clear. A month later I was home recovering, looking like 
the elephant man, but encouraged by the district nurses who came daily 
to change my dressings who said they couldn't belive the speed at which 
I was healing.

Follow up radiotherapy ("precautionary only, to catch any cells that 
might have slipped past the surgery" I was told) began in December for 6 
weeks, which made Xmas a pretty miserable experience, but was nowhere 
near as bad as I'd been led to expect by my consultant. Again nurses and 
consultant were very pleased with my recovery.

I go back into hospital this Tuesday (3 months earlier than expected!) 
for corrective surgery to my face and mouth, debulking the grafted 
'flap' which is currently stopping me eating and speaking properly. I 
know it won't be anywhere near as bad as the 'big' surgery but still 
very anxious about it as I'll most likely be on the ward for a week, and 
be back on PEG feed (which I hate!) for a couple of weeks or so 
afterwards, plus irrationally convinced that they'll find 'something 
else' whilst I'm under surgery, hence my googling this afternoon...

Although my consultant is very optimistic and tells me "you had a lucky 
escape!" I still have a month before my first post-radiotherapy scan, so 
have alot of anxiety about that as well...

Anyway, thats enough of an off-load onto you, not what I intended when I 
started typing, just wanted to say thanks for sharing your experiences, 
they've given me alot of hope and encouragement, my wife sitting next to 
me says this is the sort of positive thing I should be reading instead 
of keep dwelling on worse case scenarios...

Plenty more I could share about feelings, the 'why me?' questions, the 
utter lows of being twice told nothing could be done then the highs my 
body defied their expectations, the utter debiliation of the treatments, 
the hours of boredom sitting at home watching day time telly when 
feeling too unmotivated to do anything more creative (all being well I 
should be back at work at the end of May/start of June however...), but 
thats probably enough for now....