Update of survival

Small update from yesterdays appointment.
As many of you know I have fought tooth and nail for a very long time to get any kind of health care and have made many written complaints to the NHS.
I saw Mr Ali who does not work in oncology but specialises in cranio maxillofacial deformaties.
He was beyond disgusted that Lincoln hospital had rejected the referral he he done for me to the head and neck cancer team. He had sent my notes three times and three times they had denied receiving them then after four months rejected them.
I was armed and fired with a folder full of notes.
The first thing that he said to me was that with adenoid cystic carcinoma you should have life long monitoring. Halle(bloody)luja.Somebody listened.
Urgent referral to head and neck oncology at Sheffield.
Urgent mri scan.
Urgent referral back to restorative dentist.
Mr Ali will see me again at the same time as I see head and neck oncolgy.
He is a superstar.
Some of the other consultants that I have seen at Sheffield have been disgusting in thier attitude towards ACC and I have in the past even been offered cognitive behaviour therapy so that I can "get over it"
Busy weeks ahead.
Original Post
We are running an amazing competition here in rural wet and windy Lincolnshire with some awesome prizes.
You could win the chance to go and spot some seals in the very cold North Sea.
You could win a ride in a classic Ford Fusion.
And as an extra we are giving away £2.50 spending money but you have to answer these questions ...
When will Janet get to see oncologist?
A..February
B..March
C..Sometime never
Question 2
When will Janet get mri results?
A.. April
B..May
C..December
Question 3.
When will Janet get help from restorative dentistry?
A..Never
B..2017
C..2020
Question 4
When will Richard have hip replacement surgery?
A..February
B..,March
C...Sometime in 2017
Please text your answer to 1234 and ask the bill payers permission or call 0123456789. Calls will be charged at £2.50 per second and calls will take 40 minutes,
Who could resist such awesome prizes?
If you get all of the answers correct we may even throw in a chance to jump in a muddy puddle with a large dog.
Or email to pissed off with the nhs.co.uk. for added bonuses.
Great contest! Is it open to those of us in the US.?

Here are my answers:
Q1: C
Q2: Answer cloudy--try again
Q3: A, but only if you're very good, say your prayers and eat your greens.
Q4: A, of course. Not to treat him would be criminal (never mind that he's paraplegic)

In the event of a tie, is there a skills testing question or an interpretive dance-off?

Julia
Dear Rosie, I am so sorry that you are still having problems and that all your referrals are not going as planned,at least I think that was what you were saying in your last email, I suppose all you can do is to keep on pushing and pushing, and it doesn't matter how much you do as its you suffering and its your life affected. Have you been to see your local MP or contacting your local newspaper, they may be interested in your story or how about putting it on Twitter/Facebook it's surprising how things are picked up.
I am going back to see the dietitian in York next month due to my weight loss, I tried to explain that I thought it was probably due to the fact that my mouth is closing up after the second surgery and it is so painful all of the time and that eating just makes it worse, but I manage breakfast and an evening meal of sorts, but I am not sure if my consultant took this on board, so it's another trip away from home. Still I feel lucky to be alive and try to be positive.
Emmy
I am now tube fed and this is because fibrosis has closed the throat and paralysed the tongue. The deterioration has been over the last year but accelerated since September. Currently I am only just over 8 stone (should be 10)and it is going to take a very long time to get back to anything like. No strength or energy. I was only just managing very fine porage and the right consistency purée - and only just at that. I have not actually swallowed anything since January 18th.
Following on from my post from 29th January:-
Urgent mri scan was done 6th March. I don't get results until 5th May as they have cancelled appointment for 14th April.
Urgent appointment with oncology is now also 5th May.
Restorative dental appointment...still waiting to hear.
Was seen at pain clinic on 18th November 2015 and would get a follow up in 4 months. Still waiting but that one wont help so I will write that off.
Still alive.
Hello Petronel

How did you get on with the visit too the dietician. You need to make sure that you get sufficient nourishment even though you have a problem with swallowing. Please read Ananth's story for it details his problem with swallowing when his oesophagus tightened up.

Do let us know how you are getting on. Your presence here is appreciated.

Best wishes
Vinod
Hello Rosie

It shouldn't take that long for the MRI results to be available. Ask what the issue is. It might be that someone you should be seeing isn't available for the earlier date. If critical, someone else should be able to see you.

Regarding restorative treatment, try writing direct to CEO of relevant NHS trust if not getting any reply. It sometimes works wonders!

Best wishes
Vinod
Thank you very much for your input Dr.Joshi. I do appreciate you taking the time to reply and will take your comments onboard. My MRI is not red flagged as extremely urgent and I do need to see two consultants together to get a treatment plan. I would still like to know but no answers will be given over the phone.

Petronel.. you are very much missed on this forum and I would love to know how you are getting on with PEG tube
I am beginning to gain weight - very slowly. I might be up to 8st 3lbs. It has been quite interesting working out the rate at which - and what sort of - food can be pumped in. If the tube was in the stomach the amount wouldn't be quite so difficult, but in the Winchester neck of the woods the jejunum is a lesser known quantity and, of course, the reason it isn't a straight PEG is that the tube wouldn't go down my throat because the fibrosis is closing in...... And that was when they had to devise the odd method of anaesthetising me. Not pleasant at all.

I am having the tube changed on the 19th as this one is particularly uncomfortable (they never said it was going to be easy) and they seem to think that my gut is trying to 'digest' the balloon that is stopping the wretched thing from falling out.

However, my really main problem is mucus/saliva overproduction. It is actually quite frightening as all of a sudden there can be a mass of the stuff at the back of my throat threatening to suffocate me and it is hard work - and sore - getting it forward enough to be able to dispose of it. I now have a suction machine, which is a great help, but I can still wake in the middle of the night in a choking panic.

Life's a bitch - then it has puppies.
Thank you for the suggestions. Mucodyne had absolutely no effect and the last time I tried pineapple (admittedly it was a small chunk of pineapple) it was incredibly painful. I should try using just a bit as a mouthwash. A very dilute solution of blackcurrant and apple can help a bit but then I need to dry my mouth out before I can talk at all.
Some advice from Cookie in May 2009:
quote:
The age old Soda/salt water rinses are hard to beat.One teaspoon of baking soda/one teaspoon salt topped up with warm water helps to cut through the mucous,which becomes stringy and tenacious during and for some time after radiotherapy.you can use this solution as often as you need.

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