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Larynx Cancer Blog


A mouse in my voice

Lilly is a raccoon and
not a mouse

On the Thursday 23rd of April 2009 I saw my G.P. about a squeak in my voice. An appointment to see an E.N.T. surgeon at my G.P.'s clinic was made. There was a small polyp on my right vocal cord and it would mean a small out patient operation to remove it. This operation twas done on the Friday the 12th of June and a report about the polyp being benign was made at a later date.

The return of the mouse

On Wednesday the 22nd of May I told my G.P. that the squeaky voice had returned and again I saw the same surgeon at my G.P.'s clinic. A slightly larger polyp had made its appearance again and had to be removed. The operation to remove this polyp took place on the Friday 28th of June 2013. On the 18th of July I was told by a lo-cum for the surgeon (some Greek Professor) that the polyp was benign and that in time my voice would return to normal. An appointment was made for six months later. After two months there was no improvement in my voice so I reported this to my G.P, again he would contact the surgeon.

Beware of Greeks baring gifts

The surgeon phoned me on the Wednesday 18th of September to say that the report that the Greek (Professor Cristos Kasionis) gave me was wrong, he had obviously not read the correct report. He was sorry to inform me that I had cancer of the vocal cord and that he had arranged for me to have a CT scan on the following Wednesday. This situation was reported as a Significant Event by both my G.P. and the surgeon. After the scan I met with a cancer team to tell me about my treatment of 30 doses of radiotherapy and 6 doses of chemotherapy.

A Masque, but not for dancing

In order to keep my head still and in the same position whilst under the radiotherapy machine (a proton linear accelerator) a transparent mask had to be made of my head. This was made in four sessions during the start of October.

1 A plaster mould is made of the back of my head and neck.

2 The back of my head mask (made from the plaster mould of the back of my head) is set to the correct vertical position for treatment.

3 A plaster mould is made of my face whilst my head rests in the back of the mask.

4 The fitting of the facial mask (made from the plaster mould of my face) and the shoulder straps are made to keep my shoulders flat and down onto the bed of the radiotherapy machine.

A CT scan was then done for treatment calculations, whilst I was wearing the claustrophobic mask.

Radiotherapy and Chemotherapy

Although the radiotherapy took a maximum of only 40 minutes, I would spend about three and a half hours at the hospital. Waiting for patient transport instead of a 18 per trip taxi, was the cause of the extra time at the hospital.

Chemotherapy took five hours to feed into my blood stream, then of coarse there was an extra 20 minutes of radiotherapy plus the patient transport waiting time, all made this day, a long day indeed.

First Week

I experienced little tiredness at the end of this week, but not enough to stop me from visiting the N.E.M.S. meccano exhibition at Darlington on the Saturday.

Second Week

A bit more fatigued at the end of this week, but I was able to assemble the Walschaerts valve gear on a model of the Schools Class locomotive at the weekend.

Third Week

No chemo this week because my platelet count was too low. On the Saturday I was able to make a shelf to support the television on top of a chest of drawers in the bedroom with space underneath for a PVR and a DVD player.

Fourth Week

I felt really tired at the end of this week, I started to build the boiler for the locomotive this weekend. However, I did not have enough parts to complete it, so I ordered them. Since I reported a loss of sensation in my finger tips (I could not place Meccano nuts on bolts easily) there would be no more chemotherapy treatments. The drug Cisplatin used during the chemotherapy sessions has this effect, which is not reversible.

Fifth Week

The skin on my neck really darkened and became sore and itchy. The parts that I ordered were received and I tried to resume building the smoke box door.

Sixth Week

This week my neck line got a sore scabby line along the front and I felt as weak as a kitten. Not being able to go out this weekend I was not able to go into the shed and do some Meccano building work, but decided to do some planning work from below for my next project.

Radiotherapy Equipment

The CT Scanner

The information from the CT Scanner is used to set the alignment of the linear accelerator towards the cancer tumour.

The Table

The patient is placed upon this movable table an is swung round to the CT Scanner and to the Linear Accelerator

The Linear Accelerator

Projects protons towards the cancer cells indicated by the CT Scanner to destroy them.

Two And A Half Months After Treatment

Lilly is not a mouse
but is a raccoon.

At the beginning of December I'd discovered that I'd lost my saliva (I can't eat bread, no more sandwiches for me), I'd lost my beard (the hair folicles were killed off by the radiotherapy) and I'd lost 12 kilogrammes of weight (note the thinner face in this photo compared with above taken a year ago). My voice is at the normal pitch, but at lower volume. The tiredness and fatigue however, will take about a year to go. At case reviews in January and March I was told that my vocal cords looked normal and there was sign of the cancer.

During February my doctor advised me to start a GMC investigation into the diagnosis given by the Greek Professor Cristos Kasionis and to prevent him ever again, being used as a lo-cum by the NHS. After all, it was his misleading diagnosis that caused my late treatment start and ultimately could have cost me, my life.

The Meccano Locomotive Build

I completed the boiler that I'd started during week 4 of my treatment and assembled the tender. Since I'd changed the wheels used on the tender to be the same as the bogie at the front of the locomotive, I needed to check the height of the tender looked right next locomotive. By using three identical permanent magnet motors; I was able to get all of the wheels to rotate at their respective speeds, acording to the electronic speed controller simulating the steam regulator valve inside the cabin. The expansion link control also inside the cabin, operates a switch which controls the direction of travel.

Six Months After Treatment

N.E.M.S organised two Meccano exhibitions, one at Beamish Museum during April on their "Steam Day", another at Locomotion Shildon during May, I decided to exhibit my Meccano model of a "Schools Class Locomotive" at both of these venues.

My vocal cords look normal and a small amount of saliva can be stimulated by using a spray called Saliva Orthana. I also have had news of the investigation being done by the GMC, Cristos Kasionis has to notify the GMC of any post that he intends to apply for in the NHS.

One Year After Treatment

There is no change in the normal appearance of my vocal cords, however, my feet seem to be perminantly wearing deep sea diving boots. The model above has been dismantled, it was taking far too much room in my Meccano shed.