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 Colin,

Good to hear from you.  My RT sounds similar yours although I only had the one side too. The machine seemed to zap me from the far side, then keep moving over until it was directly above my head, stopping to zap me as it made it's way. So it zapped me from five or six different positions. Each one was a few seconds but I remember counting the zaps and in total came to around 90 seconds. Then I always knew it was time to be let out from the mask! A couple of times the machine broke down which was frustrating. I have the mask at home now as I wanted to keep it however I got it out of the cupboard recently after three months of not seeing it and I must say, it stirred up some horrible emotions.

Two sessions a day sounds harsh! That must have stepped up the side effects for you. I'm shocked that Gary hasn't been offered a PEG as we were, I hope he can manage to eat without too much pain. I remember that you said you still have yours, I'm due to have mine out soon and I think it will feel strange not to have it!

Speak soon,

Nicola

Good to hear from you Nicola. Glad centre was helpful. Only had v. Mild nausea but still eating and meds ok. Going to attempt another curry tonight! Apparently you eventually get your curry buds back! It just takes time and maybe you develop milder tastes. Try to bulk up a bit that should help fatigue. I guess Im adjusting to not running etc but inevatably will start to lose weight. A few people have said they can get a bit down when they finish treatment so keep your chin up. G.

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

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 Gary,

Munich should be good. I worked there for a year in the late 90's. The market at Marianplatz (probably misspelt)

was very good. In the winter you could get a glass of hot mead. I found the people to be very friendly.

If you do come over next year you are welcome to visit. The weather is often similar to southern England although

some years it can be, say 5 degrees warmer.  I don't remember problems with the heat when I had my rt and it

was in July and August of 07.

I worked for a few weeks at the Fords Halewood plant when it first opened in the early 60's.  I remember the

Pink Parrot nightclub (seedy) and the Mecca ballroom.

Simon,  Pleased things seem to be improving for you. If your jawbone selfheals that be will be a bonus.

They removed part of mine in case it was infected.

Rgards

Colin

Colin  pink parrot still a bar! But Liverpool changed a lot. I will show you around if you visit. Only been to Bavaria in summer so Xmas looks good for markets. You travelled a bit with work! G.

Hi all,

Thanks for everyone's replies.

Simon, glad to hear that the jaw bone issue is resolving itself, I think this is the condition I was warned about when I was advised to have my teeth extracted before radiotherapy. How is it resolving itself? Good to know you still suffered with fatigue at this stage too, Debbie too (good as in that's comforting to know) as I was beginning to feel like I'll never get back to my old self. I arranged to see my head and neck nurse this week as I'm really struggling with the fatigue and my emotions after all that's happened. She was very reassuring and told me that four months post treatment is too soon to be thinking about not yet being back to normal. I have been signed off of work for another two months and my GP thinks I may need more time afterwards. Also pleased to hear that the night sweats have become less frequent, I really do hope you have turned a corner with those as I can imagine they are very frustrating for you.

Guzzle, off to Paris next month, although five days in euro disney is going to be difficult what with this fatigue issue. Had I of known I'd still be suffering I think I would have delayed the trip but too late now. I read macmillan's book on fatigue and it described me perfectly. Now I don't feel so daft. As the others have said, I'm sure you'll be ok come christmas time. You'll be further down the line in terms of recovery than I am now and I think it does us good to have something to look forward to. As my head and neck nurse said "if we don't deserve a holiday after all that we've been through then she doesn't know who does"!! Keep going with the treatment, week three was a turning point for me, side effects began to become more noticeable. Eat as much as you can this week!

Irene, good to hear from you and a massive well done for coping with so much recently as well as returning to work. You're superwoman!! I don't know how you've done it. I will update you on the removal of my peg, I'm currently waiting on an appointment to have it removed but looks like I've been forgotten! I hear they do pull it out or they cut it and leave the inner bit to be passed. Not sure which I'd prefer?! I'm dreading it though after the problems I had with it from the start. Sounds like you're finding your feet with eating again, it's so daunting isn't it. I feel I've reached a point that I know what I can comfortably eat.

I'm having a restful weekend and saving all of my energy for a couple of days time. It's my daughters third birthday on Tuesday and she's having a party on Monday. Seventeen kids, food and a soft play is going to take all of my energy so I'm going to keep some in reserve and try and put my feet up a bit tomorrow! Enjoy your bank holiday weekend everyone.

Speak soon,

Nicola xx

Nicola 17 littluns would tire any body! Just think you have a month more to recover for e Disney and its a holiday. You can take a break when you need one. Are you going unto Paris? I feel fine end week 2 but have been warned week 3 can be a grueller so not complacent! If your hotel has wi fi send us all an e post card! You'll have a great time. G.

Hi Nicola,

It's official. My fatigue is well under control - I occasionally get a bit tired late in the afternoon but it really isn't a problem. This bodes well for your trip, Nicola, as you are just a few weeks behind me. Everyone is of course different but many of our experiences have been very similar. The 17 children might be a bit of a challenge though - can you enlist some support from the other parents or are they going to drop them off and run for the hills?

The jaw bone issue is good - the consultant had a good poke around and said that I had done his job for him. I snapped off the exposed dead bone (sounds a bit extreme I know but I poked at it with my fingernail and it snapped off). It was about the size of a very small pea. It was painful at first but the pain has now gone. The consultant said that pink tissue has now begun to grow over the exposed bone and that it would not do so if the bone was dead, therefore he was fairly confident that the dead bone has been removed and things should resolve over time.

Good luck for the party and look forward to your trip.

Simon XX

Simon. So pleased for you mate. Ive just had a zap to start week 3. Can feel slight sore throat coming in the side ive been getting zapped but was out on bike this morning. Got co codemol on hand for pain when it comes. Glad your energy levels on way up.

Regards   G.

Good luck Guzzle,

It was at about the stage that you are at now that things started to get a bit tricky for me.

Be prepared to:

1. Ask for stronger pain relief if the need arises (I found that Oramorph was the Rolls Royce of painkillers - everything else was a Ford Cortina in comparison).

2. Ask for a PEG tube if swallowing gets very problematic.

Hopefully you won't need either of the above but be prepared to ask / demand if necessary.

Simon.

Simon week three seems to be the one if you follow the consensus! I wont be shy about painkillers but got some co codemol stocked for starters! Does the rolls royce stuff make you groggy? Not really big on pain killers but realize they  will be essential. Just don't want to be a zombie - at least any more than usual! My Dr. Seems not to be for the peg but if she advises I will do whatever she says to get through. She says if it comes to it she will use nasal tube. What worries me there is in Clatterbridge this means staying in which I just don't fancy one bit. They are keeping me in for my 3 chemo days. Done one overnight and whilst the facility is excellent I just didn't like it. So being stuck in for days / weeks with a tube up.my hooter does not sound like fun! Are you using light excercise to increase energy? And how many beers have you achieved now that you are back in training!

Regards,G.

Hi guzzle

I agree with Simon that oramorph is the best painkiller (as it's morphine!) but I suffered horrendous constipation with it so I'd try to delay taking it for as long as you can!

Happy days!!

Debbie