Hello G

I know exactly what you mean - I didn't feel at all ill either! 

At least you now know what you're facing by way of treatment.  I was lucky on the dental front, I didn't need any teeth removed.  I know my dental care is good but I have had masses of amalgam fillings over the years and I thought those might be an issue, especially as almost every other person whose posts I have read on here seem to have had extractions.  So good luck with that - it will be a bonus I'm sure if the dentist gives you the thumbs up.  At least my eating difficulties are not because I can't chew!  In fact I can see an improvements every week now, even though my weight has dropped a tiny bit further (I was about 3 stones overweight to start with).  I just need to manage larger quantities now and need to maintain my weight before they will agree to take my PEG out. 

Best of luck

Irene

Hi Nicola,

I have been in the States for three months and returned a week ago.   So pleased to see your progress, especially that it was a false

alarm with the benign lump. Can you feel the new part of your tongue like the rest of it?

I remember your trepidation at the thought of a PEG. I think everyone who has one becomes a believer.

Simon,

Seeing your bit about whisky I thought I would try it.  'OUCH' it was like liquid fire.  After 7 years I have progressed to light beer

and a small wine half and half with water.  About 2 weeks into my RT one session was different. Instead of 30 second bursts

there were about 3 or 4 second ones. I think they forgot to change from the last patient. There seemed no point in persuing it

after the event. Perhaps that is why I still suffer badly with mucus.

I hope you continue to progress well.

Regards

Colin

Hi all.

Just an update....I saw my speech therapist and dietician last week and I've lost 1lb :0( but as I'm now on one of the milkshakes per day instead of three my dietician wasn't worried and said this was to be expected and she is happy for my PEG to come out! I saw my consultant yesterday for my monthly oral check up and he is now going to do the referral, hallelujah! I'm still suffering a lot with fatigue and my speech therapist kindly sent me details of a fatigue combatting course for cancer patients which apparently is very good. So I will certainly look into that.

Guzzle, I hope the mask/mould went well today. It certainly gives you an insight as to what to expect during RT. glad to hear you're feeling so well, any news on the PEG?

Irene, really pleased that your return to work is going well. I'm eating pretty well now, it was cottage pie, broccoli and gravy for lunch today and beef stew for tea. Lasagne last night! I've also found that I can manage a Kit Kat without too much pain! I'm sure you will eventually enjoy some of these things too.

Colin, my new half of tongue is numb, I have a little bit of feeling along the edge of the graft, where the new part joins the old and it's painful. It's also quite tender and sometimes sore down in the corner of my mouth, especially after a check up with my consultant! He's quite aggressive when he prods around in there! I hope you've had a great time in the US, do you find it easy to get travel insurance following cancer? I'm hoping to go to the US or Australia next year and I'm expecting a hefty travel insurance quote!

I hope all is well with Simon, as he was waiting on more results.

Speak soon,

Nicola

Nicola. Glad things going well . Best insurance company I could find were insure with who are very helpful and seem more reasonable than others. Actually enjoyed mask fitting! Like a twisted beauty therapy. They even gave me moisturizer to go! Need a manbag to fully embrace metrosexual therapy! And maybe a wee blanket  for the chemo days so I can have a little nap. You sound like you are eating really well. I have maintained weight post op but have been eating like a horse! Therapy is going to be like man v. Food!

Hi Irene,

Glad your first week back to work has been good. I was lucky enough to have a phased return over 3 weeks (though I was back in the classroom from week 1!)

How has your phased return been planned for you. Hopefully your gradual build up of hours will allow your 'working' stamina to increase.

Take it steady though. By about week 4 I was 'running' when I should have been kinder to myself and paced myself more!!

Take care and relish those weekends!

Love Jo xx

Hi Nicola,

Great to read what you're able to eat these days! It doesn't seem many months ago that you were only managing small amounts of 'smooth' food!

Look at you now!

I hope the fatigue combatting course is successful for you. It sounds very interesting - when you find out more, do let us know any tips!

Guzzle, so glad your mask fitting went well. I loved your comparison of the procedure to that of a beauty therapy session!

By the way, can I recommend John Lewis for a man bag? Im sure they also do a nice line in little rugs!

Love and hugs to all on the thread, Jo xx

Hi Nicola,

Yes we had a good time in Florida, although the weather was cooler than usual. The States in general

suffered a heavy winter this year.

When I first had cancer I think my insurance was in the area of £250.  It is now £700 plus as I am

over 75.  Last year I developed pneumonia and was put off the plane home, so had to stay

3 days extra.  We made our first claim in 20 years. I guess that didn't help.

It may be that you will not be covered for an existing illness. IE. cancer.

Good luck

Colin

Hi Nicola,

Glad to hear that you're still making good progress. It sounds as if things are moving in the right direction for you. I've come to accept that the long road to recovery is full of ups and downs and that, in time, the former will outweigh the later.  I definitely feel better than I did a month ago but not always better than the day before (if you know what I mean). The PEG coming out was a big milestone for me and I bet it will be for you too - especially since yours gave you such hassle in the early days.

My latest visit to the haematology consultant was good news in that the PET scan didn't through up anything unpleasant and neither did the bone marrow test. The negative aspect from this is that I still don't know what's causing the night sweats. These do not seem to be quite as severe as they once were so maybe I just need to be patient - it could be a through-back to the chemotherapy. Time will tell. Next step is a visit to a hormone specialist (in case it's the male menopause!).

Colin. Good to hear from you, mate - I wondered where you'd gone. Sorry to hear that Scotch doesn't  work for you. I used to love red wine but I have't chanced that yet. My mouth is slowly becoming less sore so maybe one day.

Good luck to everyone here - it's quite a gang now.

Simon xx

Jo they have also given me moiturizer ! What next highlights. Me thinks NHS have taken on Gok Won as a consultant. A bit of grooming wont do me any harm.

Simon have you managed to run again yet? I will really miss it. After ct/rt I just want to be able to excercise and travel! I will also miss the odd scoth and reg wine. On the upside Access from Branchial thread reckons his taste for beer was undiminished.

regards. Gary