Hi Nicola

Sl glad that the PEG is finally gone (if not quite forgotten).  Having put up with it for so long it will obviously take a little time to get used to not having.  Also glad that is was very simple.  Do not blame if you you did sleep after having gone through so much.  Such a shame the doctor was miserable and unfriendly - may be you got him on a bad day.  That said even on a bad day you can stil be friendly.

Just a suggestion with the Rose wine.  Instead of lemonade why not try soda water.  It is not quite as fizzy or sweet as lemonade.  I do hope the taste gets back to something close to normal soon.

Did my first full day at work and was glad that my daughter who is home fro Uni did the cooking even though she is working full time.  All being well I will be back full time next week which surpised everyone but me.  My boss kept chekcing up on me this afternoon to make sure I was ok. 

Best wishes and virtual hugs.

Gill

Chums, forgot to say loved liver story. Actually had liver and onion gravy a few days ago. It didn't taste ofull {spelling!). It tasted like it did before treatment!

Hi Nicola,

I'm really pleased that the PEG removal went well. Funny but the doctor that took mine out was a bit of a miserable git as well. Maybe it's an unpopular task....

You must be on the up now - no tube and slowly but surely making progress. What a long ride it's been. I'd like to say that soon it'll just be a dim and distant memory but I think the truth is that it will always be with us. Although the lingering side-effects will slowly diminish with time, one or two are likely to linger in one form or another. I guess that's our new normality and we must just be thankful that things didn't turn out worse for us. I monitor a couple of USA head and neck cancer groups and I do notice that sufferers in the States seem to have an even rougher time than we in the UK tend to - a bit of a generalisation I know but when you dip into their message boards you quickly find some really harrowing stories concerning people who on the face of it would appear to be very similar to ourselves in terms of diagnosis. Some of the the side-effects I experienced in the few weeks after treatment seem to be accepted as the new 'normality' for many H&N cancer survivors Stateside. Maybe we should count our lucky stars and be thankful for the good old NHS.

Guzzle's progress is nothing short of amazing. During my last week of treatment and for a while thereafter I could barely walk, never mind ride a bike. I remember describing you, Nicola, as superhuman some time back - Guzzle probably wears a Superman outfit when he's riding his bike!

Good luck to everyone.

Simon xx

Simon. Ive Ive just been lucky so far. Any experiences about return to work? I look at CSN in the states. A lot of people spend energy dealing with bills and insurance companies!

Hi Guzzle,

I returned to work in February having been off sick since July 2013. This was significant for me because I had never been off sick before (apart from when I fancied a day off of school in 1976).

I initially started working from home via a computer link-up with work - I could review papers, dial into meetings etc. I then returned to work on 4 or 5 hours per day. This was fairly exhausting and I did still have several health issues. I try to do all of my eating at home if possible. I am conscious of the need to clean my teeth quickly after eating (due to the lack of saliva), and this can sometimes be awkward or inconvenient at work. Also, I like to take my time over preparing and eating and it is far simpler to do this at home. I am now up to 8 hours but I am very careful not to go over this - I am still suffering from fatigue but this is slowly improving.

My throat still gives me some problems so I refrain from chairing lengthy meetings or giving presentations where I have to talk a lot.

Work have been really good and I have been able to adjust my working hours to my needs - I tend to be in the office by around 6am and then aim to leave at about 2pm. This enables me to have breakfast before I leave (porridge) and a light snack (noodles or similar) when I get home. I then have a largish main meal in the evening.

I try to ensure that I keep a bottle of water with me. I also keep some suitable food at work in case I need it (the canteen would struggle to serve me stuff that would be suitable - i.e. without spices or black pepper, and soft or runny). My bottom drawer has a supply of pot noodles, instant porridge and the good old NHS Fresubin food.

Hope this helps mate.

Simon.

Simon, thanks mate. Im targetting eng aug on staged return. Gonna  book a week or 2 at a work canvalescent centre which I can use to build strength and fitness. I can eat most things although not all taste good. Had bigmac today. They were awful before though. Walked 8.5 miles to Liverpool and just needed to eat something! How did you function mentally i.e. With concentration etc. Heard a lot about problems post treatment?

Hi Guzzle,

Not too bad mentally although the fatigue was a real issue at first. I found that work helped to move my focus away from my condition which was good. I did have a lot of different symptoms and side-effects and if you're not careful you find yourself thinking about these constantly.

There were occasions when I felt a type of depression creeping in, even fairly soon after the first all clear. It was a strange feeling, almost like the main fight is over so what now? Hard to explain really.

Simon.

Hi guzzle

I suffered with poor concentration and memory at first. I struggled with remembering words and would stop mid sentence but fortunately it only lasted a few months which was lucky because I work as a lawyer so need words! I stopped ringing people because of it and just dealt with everything by letter/email. There are ways round any side effect!

I was worried it was the brain tumour but then I heard about "chemo brain" and it is a side effect of chemotherapy.

I can't believe you're tucking into a Big Mac already!

Debbie

Deb theyvtasted awful before