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. 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

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

Hi all,

I went to the Penny Brohn Centre this week, had a taster course. It's a cancer care centre for anyone (and their carers) living with or living after cancer. It's a lovely place with lots to offer, including residential courses for those that don't live so local, as its based in Bristol. I'll definitely be going back. They have a website, it's worth a look.

Simon, glad to hear your saliva issue is getting better, I was chuffed to read that as it gives me some hope. My saliva issue has got slightly better now you mention it. I didn't really notice before but compared to a month or two ago, my mouth is less dry and food has become more appetising as a result. My mouth is still very dry and I'm not keen on using the Biotine stuff (the artificial saliva) but I'm coping ok with it, better than before anyway. I've also almost completely come off of my painkillers. I think I've only taken them twice all week so I'm pleased with that. The hair on the back of my head is growing back too, but only on one side! The right side (the side of the cancer) is still bold! Eating normal foods takes some getting used to, as half of my tongue (the reconstructed part) is totally numb and I have no teeth on that side and I find that bits of stuff get stuck or stab me in the gums and I'm unable to use my tongue to clear away any food! I'll just have to make sure no food is involved if I ever get asked on a date, haha!

Guzzle, we are going to Paris by Eurostar, travelling with a toddler, should be fun - or not!

Things seem to be moving along quickly for you, why do you have to stay overnight at hospital? I remember my tongue feeling frazzled after my very first session of RT, I had a headache and was tired. I also remember feeling exhausted after my first chemo. As Simon mentioned before, be sure to have your anti sickness pills to take home with you. I'm yet to meet someone that didn't feel nauseous following the Cisplatin, but it's manageable. Good luck with it, I was still eating well into half way through treatment so you may manage a few more curries yet!

Hello to everyone else on the thread and thinking of you all.

Speak soon,

Nicola xx

Hi Nicola, Eurostar is great. Better than a plane for kids. Only takes a little over two hours. There is a Travelodge over the road if you want to stay over night prior. You are probably onto it but you can book a lot online before you go. Combined passes for travel , museums etc v.good. Nice just to stroll around

They are keeping me in for my convenience I think so they can zap me the following morning and then I scarper. Its about 30 / 40 miles. Got books and Netflix so all good. Will fill manbag! Still had no conversation about any type of tube. Suppose will have to wait and see. By sods law just coming down with a sniffle! Hopefully shift it. The centre you went to sounds great. Did you take your litteun? Glad your on the mend and hope Im as tough as you!

Will let you know how I get on. G

PS good to know may have a few weeks normal eating ahead!

Hi Gary,

      Good luck with your first treatment session.  I think most people find it a lot easier then they expected.

Nausea seems to be the only common problem but you should get pills for it anyway. I was lucky and

had almost no ill effects. I was weak to start with from a six and half hour Op and the bad blood infection

they managed to give me. But I improved as the treatment progressed.

After your beauty treatment are you sure its a manbag you have?.

Regards Colin  

Colin, even a metrosexual manbag is a revelation for me! Where did I put all my kit before! On balance prob fearing impact of rt over 6 weeks rather than the 3 days chemo. Just got to get through like the rest of you warriors! One revelation has been the amount of really nice people I have met through this. I plan to go and meet Access from the Branchial thread when I recover to have lunch and buy him a beer.  So as I have said before if you or any of the wise counsellors from this thread are ever in Liverpool drop me a line. It not quite France but is an interesting city. I am staying in overnight tomorrow.so lots of reading material. Thanks for your support, Regards, Gary

Hi Gary

Hope all went well with the first session (and the manbag!).

Let us know how you are.

Best wishes.

Gill

Thanks. Been waiting with canular in since 0930!

Hi all hope you are all good and Nicola hope u r feeling better. Anti nausea meds seem to be bearing nasty chemo. Just had piece of Welsh Black Beef (blue). Put on 8 pounds. Know it wont last! G.

Hi Gary,

Pleased to hear you got through your initiation relativly unscathed. A 6 hour wait for the chemo seems ridiculous.

You should live in France! I get blood test results the next day and never waited for more than half an hour

for treatment.

With luck you won't be too bothered by the rt.  i used to lay there and count the seconds of each burst.

There were 3 (left , front and right) of 30seconds each. I would be interested to know if your sessions are similar.

I had no problems with rt not even when I had two sessions per day for the last 10 days. (making 42 in all)

I have said before on this forum but it bears repeating. If you suffer from mucus it is a good idea to cough up

as much as possible prior to rt, as when you are bolted to the bench you don't want a throatful of gunge

They gave me some ointment to soothe the sunburn from the rt.

Good luck

Colin.

Cheers Colin. I am only getting one side done and got cream. Very slight mucus but may be down to chemo. RT seems ok but early doors! Ferry well done a year in. Thanks all.

Hi Guzzle,

Sounds as if you have survived your first week without too many problems! Well done. As Colin has said, the mucus issue does become a problem when your bolted down wearing the mask, cough up as much as you can beforehand, I didn't find this to be too much of a problem for me, only once I had to raise my hand for them to release me so I could have a good cough! The anti sickness meds are a God send, you have reminded me of that awful sticky feeling and I shuddered at the thought! I look back at those days with much sorrow as it was a difficult time. I hope you haven't suffered too much with the nausea.

Yes the Penny Brohn Centre was very good, I'm going back for a cooking demonstration soon, they give ideas for healthy eating and give samples of food. This will be useful to me as I still finding my feet with eating properly again. I've also got a meeting with a support person who will help me figure out what I need. I'm really struggling with the fatigue problem since treatment ended. I had hoped it would have got better by now as RT and chemo finished four months ago but as I was so tiny beforehand my consultant seems to think I'll suffer a little more fatigue. Typical! I didn't take the toddler to the centre though, she doesn't sit still for long!

Keep using the cream even if your neck isn't sore yet, it worked well for me but otherwise, keep going! Time will fly by from now and before you know it, it will all be over. Sounds as if your hospital are helpful with letting you stay in for the night. Also sounds as if Colin received some great treatment too although I have to say, I have no complaints with our NHS with the treatment I have received, it was brilliant.

I hope you've managed to eat well and have some more curries - I miss curry! Good for you with gaining 8lbs!

All the best for another week of zapping!

Nicola