Hi Chris hows things going ... small but some real improvemnts i hope

As for me well i am trying to pull myself off of the flipping nebuliser ... all these things that make me feel different from when i was normal i am trying to get rid of ... to once again become normal.

I am getting there but my god the gunk that still comes up from my throat in the morning is vile but manageable.

My voice is still crap about 5% of what it should be and if i talk too much at work during the day it will go in the evening ... which my kids love as it means i cant shout at them

All in on i really feel that I amon the mend now, but I am far from being mended. I am still very weak, but i can now emback on some sporting activities to improve that.

I am still not putting on weight and I am eating like a teenage, but I am not loosing it

so tell me all about whats been going on with you

Hello Irene.  Its been a while since I last posted.  I have been unwell and on a course of antibiotics just as a precaution.  I had another video done of my swallow function last month and was told it is still not back so I am still feeding and "drinking" through the tube with swallowing exercises using water only.  I also had a gland in my neck enlarge (same place as before which was what prompted me to have it investigated - diagnosis throat cancer and treatment etc) so you can imagine I was terrified.  However when I mentioned this at my appointment with the local community head and neck team (CHANT) and they informed me it was probably Lymphoedema which is incurable and a result of radiotherapy.  Great!  This treatment just keeps on "giving".  But it was not properly diagnosed.  I knew I was due for a PET scan on 18th February and an appointment with the consultant for the results a week after that, so would mention this gland enlargement then.  The good news is that I was told that tthe cancer appears to have gone and that nothing seemed to show up the enlarged gland.  However the consultant arranged for me to return to Guys for an ultrasound and possible biopsy 2 days later.  It would appear that the enlarged lymph node is most probably a damaged salivary gland, but to still wear the collar that I was provided with for lymphoedema.  It is quite painful and has not changed so I am very fed up with this.  Still having the tube in after 15 weeks post treatment is a big disappointment for me and has sent me into a spiral of depression again but there is nothing I can do about it except wait.  I am terrified I will have the tube forever.  I have forgotton what it feels like to eat and taste food, although nothing tastes the same as before anyway apparently.  It is just a game of "wait and see" I guess.  I am due to go back to for a follow up appointment in three months.  Lets hope the tube has gone by then.  I was told that I had the most severe case of reactions to the radiotherapy she had seen, which did nothing to  cheer me up at all.  This treatment is truly brutal.  Anyway, I hope you are keeping well and that your parents are in better health now that Spring is on its way.  I will keep you posted on my recovery and hope to hear from you.  Kind regards.  Chris x

Hello Gary.  Been a while since I last communicated. I am having loads of problems with my laptop and the Internet (which is not helped by me being a complete technophobe) and have posted a reply to Irene (isjheatherlea11) with my progress (or not) and hope that you can read that.  Nutshell - PET scan shows cancer seems to have gone, I still have the nasogastric tube 15 weeks post treatment, with no end in sight and have probably developed lymphadoema in my neck as a result of radiotherapy treatment, which is incurable, or it may be a damaged saliva gland.  Still have no saliva, plenty of mucus and nil by mouth except for sips of water to do swallowing exercises as swallow function not returned.  Im glad to hear that you are not losing weight, even though you cant put it on at the moment.  My voice is the same as yours, sometimes not too bad, but will cease at the drop of a hat.  I hope your recovery continues to improve.  By the way, thanks for your jokes, even though they were some of the corniest ever!..There is one corny joke that I heard many years ago that always remains in my memory (unfortunately), but still makes me smile.  Here it is.  "A young boy goes into the Pet Shop and walks up to the counter.  'Yes, young man. How can I help you' said the shopkeeper.  'Well' says the boy ' I would like to buy a wasp please'.  'Sorry son' says the shopkeeper 'but we don't sell wasps'.  To which the boy replied 'Well, you've got two in the window' !  You can add that one to your repetoire, if its not there already.  I will keep you posted on my recovery, such as it is so far.  Best wishes and kind regards.  Chris.

Hi Chris

Lovely to hear from you but sorry you've been unwell (over and above everything else that life has thrown at you)!  You must have been scared about the enlarged gland in your neck but thankfully it is 'only' lymphoedema which sounds like it's pretty common for anyone who has had RT to the neck. When I complained to my oncology nurse about my bigger-than-previously double chin she described it as a 'dewlap' (a bit like a rabbit!) and also said I'd be unlikely to get rid of it.  She gave me some exercises to try and smooth the lymph fluid away but I couldn't see it making any difference so just gave up.

I hope you can hang on to the great and most important news that your scan shows you are clear of cancer, but I can appreciate you are feeling pretty hacked off with both the collar and tube.  I keep my fingers tightly crossed for you that by your next appointment in 3 months time, they are both long gone.  

I am fine thanks and recently beginning to notice an improvement in my enjoyment of food, i.e. my taste buds seem to be performing better.   I still avoid very dry food like bread/sandwiches and need lots of milk to wash down anything which doesn't have lashings of gravy/sauce, but I am tasting more than I was (still not chocolate though, which is probably a good thing!).

My parents are ticking along not too badly, thanks.  Dad grows increasingly frail  but he is hanging on in there and does seem to have bounced back from where he was a month or so back.  

I wonder if you've seen on the other thread that I am meeting up with Gary (Vatch) and a few other friends made on this forum in London on 25th April?  I appreciate you are still having issues with your voice, but if you feel up to it and are free that day, we would love to meet you.  

Try to keep positive, take it a day at a time, and stay in touch.  

Irene x 

PS Loved your wasp joke!

Hi there Chris hows things

sorry I have not been in touch for a while but I have been busy at work .... I suppose that's a good thing that I have the energy to be so busy

So how are things getting better i hope

Im getting there and have noticed a massive improvement in the last 3 months I am still not back to normal but if this is it then I can go forward with life as it

My taste is still all over the place and some foods I am still finding bland but edible. I still have a lot of problem with chips potatoes anbread and pizzeria but I can get them down with a glass of something

my favourite thing at the moment is dunking digestive biscuits in my coffee

i have managed to stay away from this flu thing everyone has had but picked up a bit of a chesty cough nothing bad but it's just made the normal hunky mucus I get in the morning 10 times worse

so hows your after treatment going getting better and hows your liquid intake going

catch up soon 

Hi Chris

Happy Easter!  I was just posting a reply to Vatch and also Mary who is a 'newbie' on Nicola's thread, which made me wonder how you're getting along.  I'm hoping that the last month has seen things gradually moving in the right direction for you? Hopefully some better weather on the horizon will also help give you a boost. Love from Irene.

Hello Irene.  Been a while since I last posted.  Thank you for your Easter greetings.  Well here I am - 20 weeks post treatment and I still have the nasogastric tube with no end in sight.  I am very disheartened and depressed at the moment as my swallow function has not returned and I now doubt that it ever will.  I definitely have lymphoedema now in my neck and face.  This is never ending and I do sometimes doubt why I bothered with the treatment as my whole life is now nothing like it was.  I am inhibited in going out because of the nasogastric tube.  It is human nature for people to do a double take when walking past me - we all would - but I feel conspicuous.  It is making it difficult for me to go out, so I only do when absolutely necessary.  As for any kind of socialising, forget it - cant eat or drink and the embarassment of the tube makes it impossible for me.  I am at a full stop at the moment with no improvement at all.  Anyway, I hope you are keeping well and improving.  I am going to try and meet with someone who has had the nasogastric tube experience so that I can speak with someone who has firsthand experience of all that this entails and perhaps might give me some hope for the future.  I will be in touch with progress.  Kind regards and best wishes.  Chris x

Hello Gary.  Its been a while since I last made contact.  Unfortunately, things have not moved forward for me and I still have the nasogastric tube for feeding and drinking.  I am losing hope of ever improving and getting back to any sort of normality.  It is now 5 months since my treatment ended and I never once envisaged still being in this position after all this time.  Hope is fading fast for me to expect any kind of improvement.  I am told that apparently I experienced all of the side effects very seriously (which was 'a shame' - their words, but my words are 'completely devastating'.)  I'm not really in a very good place at the moment and so perhaps will make contact again if I have anything positive to report.  I hope you and your family had a good Easter break and that your recovery continues to improve.  With kind regards and best wishes.  Chris

Hi Chris, really sorry to hear that you are feeling so low at the moment and that progress is frustratingly slow for you.  Please don't give up hope though.  I sincerely hope you manage to meet someone else who has gone/is going through the same experience with the nasogastric tube.  I am delighted to report that on Saturday I met Gary (Vatch) in person along with three other friends from this forum (Nicola's thread).  They all helped me so much when I was feeling at my worst and it was wonderful to meet them all in person.  Gary Guzzle brought along a friend who has also suffered cancer, a truly inspiring girl who has been through major facial reconstruction and emerged smiling.   One of the key points she made was that she found very little support for people who have been through her experience and so she is hoping to start her own charity.  I hope you manage to find better support and that life soon begins to get better for you.  Keep in touch, best wishes, Irene x