Real Life Laryngectomee: Geoff’s Story

A Laryngectomy with complications

I had my Laryngectomy operation in January 2009, followed by 37 doses of radio-therapy and the accompanying chemo-therapy sessions. I’ve been coping quite well since then but have had speech valve leaks from time-to-time, with ever-increasing regularity.

I was eventually admitted to hospital on Boxing Day last year with yet another leak. This time they admitted me via A & E and gave me an MRI scan which later proved negative. Apparently they had thought that my cancer had returned and were taking all the necessary precautions. My valve was apparently sitting at a most peculiar angle.   I had learned earlier that it’s most unlikely for a cancer to return after a period of five years or so. But to be sure, they kept me on the ward for six weeks on this occasion which turned out to be pure hell after I contracted one of those dreaded hospital bugs! During one nauseous session, I managed to cough out the whole speech valve through my stoma… the whole thing! This left a fistula (hole) the size of a football pitch between my gullet and windpipe. So from Boxing Day last year I’ve been nil-by-mouth and have had to wear a tracheostomy tube and cuff. I am also unable to talk. The radio-therapy had caused severe tissue damage which in turn, was not helping the fistula to close of its own accord. And if the fistula won’t close then it’s not possible to re-fit the speech valve. And with no speech valve I’m stuck being nil-by-mouth with tracheostomy tube and cuff!

Geoff Read

Geoff Read – Laryngectomee since 2009

It was a scary time just after Christmas last year wondering whether the cancer had returned. However, tests and tests and more tests were conducted and even the biopsies and MRI scan weren’t helpful and inconclusive. After what seemed like an eternity and with no other direction to take, the “powers-that-be” concluded that the cancer hadn’t returned and that the dislodging of the speech valve had in fact been caused by over-granulation[1]. The Head & Neck consultant was at a loss as to which direction he should take next and consulted with experts from right across the Kingdom.

After a lengthy discussion we agreed upon a procedure to take place in June this year. This involved undergoing the insertion of a stent-like, ten-inch plastic tube into my oesophagus.   The tube had a small funnel at the top-most end. This tube would cover the fistula thereby preventing saliva from seeping into the windpipe.   Thus making the tracheostomy tube and cuff redundant. And if all this worked then I would be able to start eating and drinking “normally” once again. Unfortunately, I didn’t quite get that far as the tube was ejected from my gullet during a coughing fit.   Honest Gov, I didn’t mean to; I simply coughed and up she came… what seemed like yards of the bloody thing!

After a day or two, the consultant decided he would repeat the procedure but this time with a little more robust approach.   He would also stitch the fistula to aid the closing process.   And… everything went fine. It was at this point, just when everything was going well, that I contracted gastroenteritis[2] and was ejecting body fluids from both ends of my body!   This lasted days… and nights and I just wanted to curl up and die! Anyone who has suffered this will have sympathy I’m sure.   It’s ten times worse than a normal tummy upset. It was during one of these bouts of nausea that once again I coughed out the second infernal tube. Back to Square One and feeling kind of sheepish and disappointed. That bug knocked me sideways and I lost a stone in a few days.

I’ve now been home for a few days and am waiting to hear what Grand Plan my consultant will have for me when I meet up with him next week.   In the meantime I’m still nil-by-mouth and still unable to talk.   I’m beginning to have cravings for tasting things. What is it like to munch into a big fat hamburger?   A juicy steak-and-kiddly pudding?   Yummy!   I am so longing for the day.   I’m even looking at recipes in glossy magazines. I rather suspect that my consultant will ask me to undergo the same procedure again sometime soon.   And I’m willing to do so if the end-result means I can eat and drink again.   I need to eat and drink.   I can get by without talking but I must eat and drink!

The objective behind me writing this article is not to seek sympathy or to bemoan my misfortune at what the radio-therapy did to me but rather, to ascertain if anyone else has had similar problems and how they went about rectifying the situation.   It would be great to hear from someone who has undergone similar misfortunes.

You can contact Geoff at:  geoffnread@gmail.com.

touch on enquires@ipl.uk.com or 0115 975 4074 or write to Freepost Address:
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1 www.wcauk.org/downloads/booklet_overgranulation.pdf
2 www.patient.co.uk/health/gastroenteritis-in-adults

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