Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

A rather long

Gengiscant
Posted by

I do not want this post to detract from the marvelous treatment we sufferers of the big C receive from the doctors/nurse's etc etc but sometimes mistakes are made, and the more you try to get to the truth the more you realize a poorly the NHS is managed.

In my case I began to suspect that something was not quite right about 2 months after treatment (cisplatin+45 radiation blasts) I could not swallow at all, neither could I burp which would indicate that my throat was completely closed. The consultants refused to believe this and each week was asked to drink a cup of water which duly came down my nose because of the effort I was putting in trying to swallow. I was also seeing a speech therapist who gave me exercises to strengthen the throat tried to see if I could swallow foul tasting custard, all of course to no avail. I had also come to realize by this time that the consultants  I was seeing, did’t actually listen to me at all.

I eventually had a second biopsy with a proper look at the throat at the same time and oh dear I was unable to swallow because my throat had closed.

That was in August. Since then I have an attempted procedure to put a guide wire down my throat, and yes it was as unpleasant as it sounds. The surgeon was unsuccessful and I was in pain, as I was wide awake whilst it happened. That was in early September and it was decided that another attempt would be made but under general anesthetic. From early September to last week I had nothing, but during that time I had made a formal request for my case file, well talk about light the blue touch paper and stand well back, suddenly I was getting phone calls from consultants apologizing for the delays in my treatment and that they were making complaints on my behalf. I was stunned, so I thought a joke would go down well, as the consultants seem to be listening to what I had to say, and we were all Friends.

Here's the joke. Question. “What’s the difference between a consultant and god?" Answer. "god does not wish to be a consultant". That did not go down well.

Ah well back to the status quo, still not knowing when my throat was going to have its procedure until it became necessary to go to the hospital last Thursday. On Wednesday my P E G fell out and I could not get it back in and as it is the only way I get fluid into my body its needs to be reinserted as soon as possible or that hole will close. I phoned NHS Direct at 6,45pm and spoke to a doctor 11.45pm who explained she was sorry no one had been in touch sooner as there was so many staff off with swine flue. Unfortunately there was no one experienced enough to reinsert the P E G and would I mind getting in touch with my oncology dept in the morning. Which I duly did. 

I spoke to the nurse who is responsible for P E G's and found apart from when it was fitted we had met since because the P E G had fallen out once before and she had replaced it.  This person has turned out to be the most  wonderful, caring supportive part of my treatment team. I had to be admitted to the ward so I could be given a drip to keep my fluid levels up, and the surgeon would attempt to get it back in the following day. I also met a couple of the nurse from the Xray team who would be assisting in the procedure. I have never been one to dwell on my cancer and when able have had a smile on my face and a joke in my mouth even at my own expense. To cut what is already a long story short the 3 girls managed to badger/persuade the surgeon to operate that day. This was done I got home that night, hooray.

But that was not all, the P E G nurse Lorraine also managed to get my throat procedure organized, which is going to happen next Friday. I have spoken of my concerns on the procedure and the following dilation in the coming weeks and again she has been incredible, On my initial meeting with my treatment team I was introduced to 2 specialist nurse who were there to help with any problems, answer any questions and hopefully allay any fear I might have on any aspects of my impending treatment. That’s a joke. So now thanks to Lorraine things I hopefully moving towards a conclusion to this cancer and its horrendous treatment.

I also received to lots of files relating to my case, not complete by any means but enough to discover that I had 10 more radiation treatments than I should have. Oops that is a no no. But that’s another matter, how anybody can make sense of hospital records is beyond me, they are mostly written by doctors who we all know cannot write so the rest of us mortals can actually read it. We live in the 21st century, my local GP’s is all computerized, once I had a password I could download my complete medical records and more importantly read them.  Mistakes must be made when other people have to decipher what the consultants have written.

Anyway I have prattled on long enough, I not sure yet what to do about the radiation overdose, I shall see how the throat dilation goes. If I can drink some beers and then some more beers at Christmas, I might just  make an informal complaint and leave it at that.

One has to look on the bright side; I have given up smoking, lost 2 and half stone, saved enough money to build a very fast PC oh and I was given the all clear and I have become a much nicer person. More laid back, not so argumentative and strangely enough , hairier, my beard prior to radiation was white, I have had to re-grow it and its now dark and I have a hairy chest, never did before. So every cloud etc etc.

Thanks for reading, look after yourselves and have a good Christmas.

stevessister
Posted by

HI havse to say I loved the joke about God and the consultant.  cheered me up.

vodcoke
Posted by

who is it you ask if you want to see your case files

Gengiscant
Posted by

The simplest way is to go to your local Citizens Advice Bureau and speak to someone there and they should be able to provide you with the necessary form.

Or you can write directly to hospital's Patients Services Manager or Medical Records Officer, You will need proof of identity and the minimum charge is £10, though they can charge more.