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 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

Hi Simon,

I would have thought wine was less harsh than scotch. I assume its the alcohol content that burns.

The good thing for me is that I can taste it quite well. A lot of quite nice red is grown locally.

Do you run just for fitness or more competitively? I did quite a bit when younger and I think being fairly fit

helped me through recovery.

Colin

Hi Gary and Colin,

I used to run in the odd race a few years ago but my running was mainly to keep fit. Up until last June I was averaging 4 or 5 six-mile runs per week. I haven't been able to run since the treatment finsihed - my mouth and throat would dry instantly due to a lack of saliva. I now have a spinning cycle machine indoors which I use regularly - the trick for me is to do exercise that doesn't require me to open my mouth in order to breath. Like you, Colin, I think that my good level of fitness helped me cope with the RT/CT.

The real issue for me now is the ongoing night-sweats (which were back with a vengeance last night) - they are really beginning to get me down.

Good luck to you both.

Nicola - you're the leader of the gang!

Simon XX

Simon, I only run and cycle for fitness but done the ring of kerry on a bikevlast year and was training for Liverpool Rock n Roll marathon when diagnosed. Had lump, tonsil , partial neck dissection 2 and half weeks ago. Ran 5 miles today and cycled 20 earlier in week. Was walking two days post op. I don't think I will be doing this post radio/chemo but there are people out there who get back. It just appears to take time. Does running with a water bottle help? I may invest in a turbo trainer. I hope to take gentle excercise as long into therapy as I can even if its only a walk. I agree with Colin that fitness must help. But if you are active being laid up drives you mad ! I hope you get over night sweats mate. Is this common. Sounds a pain in the ***. And yes Nic is the leader. You are getting a little posse together. Post treatment Im hoping to get together with Access from Branchial cyst thread to buy him a beer. Will let you know where in case any of you fancy it.

Regards, Gary

Simon, I quite like the title of 'leader' !! I started this thread back in August when I was first diagnosed, never did I realise back then what a help this site would be. I've made many virtual friends and I found this site was a huge help to release and share thoughts and feelings and tips through the worst times.

It's lovely to hear that you will perhaps meet up with someone from the other thread Gary, I'm in Bristol. It's a shame that we're all probably so far apart as it would be good to have a support group going. I've often considered setting something up in Bristol for head and neck cancer patients as there appears to be nothing available at the moment.

I too believe that a good health and fitness to begin with aids recovery. I do not exercise as such but I used to and I'm a fairly active person being a single mum to a two year old. I firmly believe that my good health assisted my physical recovery from the surgery and also the chemo/RT. I had a mini celebration with friends last night to mark the end of a difficult time. I had a glass of champagne and a glass of wine, both tasted very sharp as everything does for me now, but I drank it anyway. I was determined! The tongue was fairly sore this morning though! Perhaps I'll try some red next time as Colin suggests. If anyone deserves to enjoy a drink it's us after all we have endured!

Nicola xx

Simon, sorry to hear that the night sweats are getting you down, I know that would get me down too, but it sounds as if this is being taken seriously. When I visited my GP about the sweating I was experiencing I was told that its just one of those things and they wouldn't investigate as it could be caused by anything such as being too hot! As it appears to be on and off for me I haven't pursued it yet but I will if I need to. I suppose a through back to the chemo is a possibility but as your chemo finished some months ago you'd hope they would have settled down now. I really hope there is an answer for you and that this can be rectified. Glad to hear the PET scan was ok too - what a relief!

Colin and Gary, thanks for the insurance tips, somebody else on another thread also recommended Insure With so I will keep them in mind when the time comes.

Speak soon,

Nicola xx

Simon, sorry to hear that the night sweats are getting you down, I know that would get me down too, but it sounds as if this is being taken seriously. When I visited my GP about the sweating I was experiencing I was told that its just one of those things and they wouldn't investigate as it could be caused by anything such as being too hot! As it appears to be on and off for me I haven't pursued it yet but I will if I need to. I suppose a through back to the chemo is a possibility but as your chemo finished some months ago you'd hope they would have settled down now. I really hope there is an answer for you and that this can be rectified. Glad to hear the PET scan was ok too - what a relief!

Colin and Gary, thanks for the insurance tips, somebody else on another thread also recommended Insure With so I will keep them in mind when the time comes.

Speak soon,

Nicola xx

Hi Nicola. Champagne wow! Go girl. In going for a beer to watch the Liverpool game tomorrow. I don't know Ill feel like it much in therapy so will enjoy every drop. Been for s walk with some friends and kids along Formby coast. Ate like a horse as trying to bulk up before Rt and ct. hope I can still walk a little in treatment! Just for the fresh air. The guy I want to see lives in Sunderland but he has been a great help to me. And one thing I have atm is a bit of time although my trip may be in recovery post treatment. Me and some of the people from the thread are going to look at a centralish location.

Ive spent a bit of time in Bristol in the past and always enjoyed it as well as the surrounding areas. A lot of historical links with Liverpool which I wont bore you with.

I had unexplained night sweats last week. Minor I would imagine compared to yours and Simons but bloody annoying so I hope you get some relief. Ot gos without saying if any of you are in Liverpool with you familys shout me up and Ill show you around.

(ps fashion/grooming update obtained barbour manbag for therapy for moiturizer,books etc)

Regards, G.

Take your iPod as well mate , cos it gets boring listening to people complaining about transport and anything else to do with their treatment etc when we all get the most fantastic treatment for free !

Ferry

Ferry. Good point If anyone bleats too much I would direct them to a US discussion site. No insurance no treatment. Insurance companies constantly challenging Drs over need for scans etc. NHS ain't perfect but its there for all. I pod charged but think only doing 3 days ct. And got Netflix on phone. Hospital got Wi fi!

thanks

Hi Gary ,

This is true. I have been going to the states for about 25 years and worked in Washington for about 2 years.

The US medical system is all about making money and it shows. When I had pneumonia last year and went

to hospital, the first question was 'How are you going to pay?'.  My wife had pneumonia about 10 years ago.

She fainted while they were examining her.  We were walking out (I was more or less carrying her) and  were shouted

at. 'You haven't paid'.  The doctor complained 'your wife frightened my nurse'

This year I had 3 stiches removed from my back. A 5 minute job. 85 dollars! Paid up front before being allowed to see the nurse

I can't understand why the majority are against any form of national health service.

The CEO's of health insurance companies are paid on average between 10 and 20 million a year. I nearly said earned!

I wonder where all that money comes from!  Rhetorical

Colin

Colin, Im lucky enough never to have recieved medical care in the states. European countries and countries such as Canada prove there is a middle ground ( boring masters degree in public administration talking there!). The US system is totally marketized. On US chat groups it is common to hear of scans etc being refused by insurers against medical advice. Interestingly NHS is using more private contracters. PET scansare provided by a company called Alliance. We still have free at point of access care and it is an important principle. The US provides the best healthcare money can buy! Successive democratic presidents have thus far failed to reform US healthcare.

Nicola are you Eurostar or flight to Paris? I love the Eurostar, arriving in the city centre! Have a blast. You deserve it!

Ferry, I think radio 4 may be the way forward in chemo. It will either interest me or soothe me to sleep!

Forgot to say 25 bike miles. One choccy browny Yum!

Hi Guzzle,

Do you have a tablet (electronic device as opposed to the pill varity)? If so then I found that taking a couple of good movies to each chemo session helped to pass the time. I rented a few good ones from iTunes and that made the time fly by.

Nicola - How's your saliva situation? I'm not sure I've ever said that to a lady before...... The reason for asking is that on my way into work this morning it occurred to me that mine appears to be very slowly improving - it definitely feels slightly better than a month ago and I find myself needing to slurp water less frequently during the night. Although the night-sweats still wake me up I don't have that incredibly dry mouth as offen as a month or two ago. Hopefully this bodes well for the future and I hope that it does for you as well (as I'm a few weeks ahead of you in terms of treatment and recovery).

All the best.

Simon xx

Simon got a tablet/big phone and Netflix so hospital wi fi will take a battering. Glad you are on the mend. How is it being back in work? How long after treatment did you get back?

Liverpool won!

G.

Hi Guzzle,

Good luck with the NHS WIFI. I found it too slow for things like downloading or streaming, hence I downloaded movies prior to going to hospital. Your hospital may have better WIFI though.

I returned to work about 5 1/2 months after the treatment finished. I started to work from home at first and then returned on reduced hours. On the train on the way to work at the moment in fact.

Good luck.

Simon

Hope you are all having a lovely Easter. I start therapy next Tue with a zapping/chemo/overnight stay. Got my manbag full of essentials. Will be saying goodbye to beer/curry Sunday (for a while) watching Liverpool game. If the weather is like this it willl crack me up being stuck indoors. 

Hope Paris was a blast (if you,ve been yet). In going to enjoy every drop of warmth this weekend.

May be bending your ear for advice soon.

Cheers, Gary