Hi Nicola,

How are you doing?
My mom starts her radiotherapy from tomorrow onwards, she took the expensive treatment which doctor told her that will have less side effect, I hope it does. She told me that her upper neck near her ear have a big swollen there, is that normal?
and can i know that is it completely recover after the radiotherapy? 

Hope you are fine there.

Take care!

Ping

Hi Nicola,

How did your ultrasound scan go? I assume that there was no problem?

Ping - If the swelling you mention is a swollen lymph gland then you may well find that it reduces in size during the radiotherapy. I had an initial swelling that was a swollen lymph node - this was removed for biopsy. Then another one swelled up to the size of half an egg. It slowly disappeared when I was about half-way through the treatment.

Guzzle - Everyone recovers from radiotherapy at different rates. Personally I would not have been comfortable travelling just a few weeks after the treatment had finished but then everyone is different. I couldn't eat, drink or talk for a few weeks and my PEG tube wasn't removed for four months. You may well be fine. I know a lot of people who have sailed through the recovery. Radiation to the head and neck is a funny old business and can do strange things to eating and sleeping habits. As I said, I would not have gone abroad but you may well be okay. You will need to tell your travel insurance company about your situation though.

Simon xx

Hi Nicola,

Good to hear from you and I'm glad that things are moving in the right direction. I think you'll find that having your tube removed is a bit of a milestone for you - it was for me. It felt wonderful not to have it dangling about. It was a lifesaver though. Like you, I'm surprised that Guzzle hasn't been given one. Gary - I would ask for one straight away if and when you start to have difficultly swallowing.

It's a shame about the fatigue, Nicola. Five months post treatment was the point for me where I felt that the fatigue had reduced to near normal so maybe you'll see an improvement in the next few weeks.

My phantom tooth has been diagnosed as, wait for it......... osteoradionecrosis! I didn't know what it was either. Apparently it's bone that has been killed by the radiotherapy and started growing through my lower right mandible. I'm to see yet another consultant to get it sorted out. I'm still having the night-sweats about 4 or 5 times a week and the next port of call for this is the endocrinology department to get my hormones checked. I'm certainly getting my monies worth from the good old NHS - imagine if we had to pay!

Good luck Guzzle and get that curry down you while you can - I used to love vindaloo but it's a dim and distant memory nowadays.

Simon.   

Sorry to hear that mate. Hopefully specialist can fix it soon. Regards Gary

Hello Friends

Haven't visited in ages due to a really full-on month - back to work, a wedding, elderly mum in hospital for 2 weeks, then sickness bug followed by a cold,so have been feeling pretty whacked!

Other than that I'm doing fine, having had my monthly check-up this morning.  The only disappointment was I'd been told they might take my PEG out today if I'd maintained my weight.  Well I knew I hadn't with the sickness bug and all the rushing around taking turns with hospital visiting and staying over with our soon-to-be 90 Dad (I'd lost another 8 lbs) but I thought they might take that into account.  However turns out I have to wait for an appointment from a different department anyway, so hopefully it won't be too long.  At my previous check-up I got a gentle ticking-off for not trying hard enough to eat.  Because I wasn't enjoying anything savoury I had given up trying and was only eating puddings and supplementing with overnight pump feeds.  So two days after that appointment I just bit the bullet, stopped using the PEG completely and forced myself to eat normally, just washing everything down with copious quantities of milk.  Apart from spicy stuff (I miss my curries too!) I'm pretty much eating normally as before, just smaller quantities - I can never clear my plate though. Changed days from when I was an absolute gannet, would have seconds if they was enough and hoover up leftovers on the rest of the family's plates - no wonder I was over 13st!  I'm now 11st 6lbs which is hardly lightweight so it just feels so weird that they are concerned with me not losing any more weight.

I started work at the beginning of this month at 3 hours per day, some days at home, some in the office and have gradually built up my hours until this week when I've done 2 days at my normal 6.5 hours a day.  Am pretty tired by finishing time but coping so far.  Hopefully my Mum will get home from hospital soon which will make life much easier.  She dislocated one of her artificial hips two days before my nephew's wedding, so she missed seeing her grandson get married, which was a real shame. I really enjoyed the wedding, ate quite well and even enjoyed a couple of drinkies - have discovered I like bacardi and coke again with my new taste for sweeter stuff.  I also had a bit of a bop round the dancefloor and even managed a very energetic 'strip the willow' (a poplar Scottish reel with lots of 'birling') with a burly policeman - we showed the youngsters how to do it properly!

Good to catch-up with all your news and hear of your progress.  Gary, best of luck with the rest of your treatment and don't forget to ask about a PEG if you start to have difficulty eating.  They are much maligned in many ways but I think we all agree them to be a godsend too.  Nichola - let me know how you get on getting yours out, i.e. what's involved?  I'm sure I read somewhere they just yank it out but surely there's a bit of local anaesthetic?!?!?!  Simon bad luck re the osteoradionecrosis - sounds really grim!  Hope they get that sorted out soon for you.

Best wishes to everyone else on this thread not mentioned above, especially Jo and Debs.    It's lovely to read that some of you are meeting up - wish I wasn't quite so far away!

Irene

Hi Irene,

From my experience the PEG removal is nothing to worry about. My first one was held in by a disk about 5/8 of an inch in diameter.

The doctor did just yank it out , a bit of blood but no pain. Since then the following ones had a small deflatable baoon for retention.

They deflate it and the tube comes out easliy.  I now gave one called a button which has the baloon. This has no external tube, just

a port onto which a tube can be locked. I can swim or do almost anything with no problems.  I change this myself when necessary.

I have mine for life and apart from the drag of sitting there for about an hour three times a day it has no drawbacks.

Good luck.

Colin

Hi Irene, hope your parents etc all good and glad to hear you had a jig/drink and you are getting back to work. Met a few people who said pegs coming out were no probs.Im on week 2. Early days but little jog today, little bike ride yesterday. The first chemo last week doesn't seem to have hit me and had a curry last night but not complacent as early days. Still eating a lot so far! Discussed peg with Dr. She said as they were only zapping one side if I couldn't eat she would have me in the ward with a nasal tube to suppliment what I could get down with pain meds but does not seem for the peg in my case. Have been stocking up on softer foods high in cals. Who knew that a can of mac cheese has 400 cals or cream of chicken soup 300? Weight being maintained but at a push can lose a few stone although this would make me skinny? Trying to say as active as poss without overdoing it. Thinking of you Simon. There are people on CSN who have got through this really well and a guy who is just about to have surgery (US site Leo from Branchial thread used for research). They are a friendly bunch and may be able to give you some experience. Rooting for you.

Nicola you hit Paris yet! In waiting for your report! Colin where in France are you? I always imagine you on a terrace in the South somewhere! G.

Hi all

It's good to hear that you are all doing ok.

I hadn't realised you weren't having a peg tube! I only had treatment on one side but perhaps it depends on the particular spot the rt takes place.

Nicola, I hope you start to feel better soon. I too started to improve after 4 months after the treatment ended and by 6 months I felt pretty good. I suppose the fact that you are so slim may mean it will take a little longer.

My friends dad had mouth cancer 10 years ago and is still doing fine. However my friend asked me if I too had been told not to drink again! Eek! No one has ever said that to me nor to Irene with her Bacardi! Were any of you told that? I don't want to give up my vodka, lime and soda!!

Keep going all of you - it does get easier!

Debbie

X

Im sure if its well diluted its fine! It would only have the same Alcohol as a beer? Ive been told to keep away from neat spirits but even in treatment I can have the odd beer if I feel like it. Had one with my curry last night before my buds get frazzled!

Hi Gary,

I live in southern France about 10 miles from Limoux. It is nice open countysdie with a good view of the Pyrenees.

We moved here at the end of 2002 when I retired. The exchange rate then was 1.6 euros to the £. Its now 1.2

which has somewhat diminished our pension value.  The roads are nice and clear compared to the UK, which

is good for my blood pressure. The food and wine is excellent (which I enjoyed for the first 5 years) and the

health service is magic.

I imagine the nasal tube will be no problem. I had an endoscope up my nose and saw my throat and vocal chords etc.

Very interesting and no discomfort at all. Good to hear you are getting on so well.

Colin

If I get over there next year with family will drop you a line and shout you lunch! How do you cope with the heat after radiotherapy?

Hi Debbie,

No one told me not to drink.

As Guzzle mentioned, I think that neat spirits are best avoided (not that I could manage a neat spirit at the moment anyway). I have a couple of small beers most evenings and they slip down okay. I have had the odd whiskey or Jack Daniels and non-cold coke and that is fine too as long as it's not mixed too strong. The last few days have been really positive for me - mouth just a little sore and the usual issues with a lack of saliva but I feel more awake than I have since the treatment finished. I haven't had night-sweats for 5 days now and I really hoping that I've turned the corner. The mouth/facial consultant looked at my osteradioecrosis issue (dead bone in the jaw, apparently) today and said that it appears to be slowly resolving itself.

Take care everyone.

Simon XX 

Hi Debbie,

No one told me not to drink.

As Guzzle mentioned, I think that neat spirits are best avoided (not that I could manage a neat spirit at the moment anyway). I have a couple of small beers most evenings and they slip down okay. I have had the odd whiskey or Jack Daniels and non-cold coke and that is fine too as long as it's not mixed too strong. The last few days have been really positive for me - mouth just a little sore and the usual issues with a lack of saliva but I feel more awake than I have since the treatment finished. I haven't had night-sweats for 5 days now and I really hoping that I've turned the corner. The mouth/facial consultant looked at my osteradioecrosis issue (dead bone in the jaw, apparently) today and said that it appears to be slowly resolving itself.

Take care everyone.

Simon XX 

Simon truly delighted for you my friend!That is excellent news. Im at the end week two. Been for lunch/bike ride. Been invited with family over to Munich for Xmas markets in December. What do you think based on your recovery? Doable? I know the worst is yet to come but all OK so far. Feeling ravenous all the time!  So glad you don't have to get your jaw fixed buddy. G.

That's great news, Simon. You do get used to the dry throat - I wake up in the night, have some water and am then ok. It hasn't got any worse.

You'll be fine by Christmas, Guzzle! You may struggle to get affordable travel insurance though!

Keep going !

Debbie

Hi Guzzle,

I agree with Debbie - based on my progress you should be fit enough for the trip by December. You might not be able to manage neat spirits or wine but you can make up for that with the beer!

Cheers (hic),

Simon.