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

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

Hi  All,

This pain at 3 weeks seems strange to me. I suffered no real pain for the duration of the 7 weeks. I had chemo on Fridays as well.

Perhaps I am just insensitive. Has anyone else been without pain?  The consultant told me I would feel discomfort but no real pian, and

so it proved. After the Op. they gave me morphine but it caused me to have hallucinations, so I asked them to stop. The only

problem I had was nightmares in the week or so following the Op. which made me afraid to go to sleep. 

They did remove rather a lot of the internals of my throat so perhaps there was not much left to hurt.

The only discomfort I had was in my bum from being in a semi reclining position for three weeks.

Colin

Colin only slight pain so far. I hope Im as tough as you! Most people report some pain towards end of treatment which can actually stop them from eating. IM hoping it wont get to that,

Regards, G.

Deb, will deffo avoid Oramorph as long as poss. Throat feels a bit better today. Constipation is a hassle U can live without! G

Hi Guzzle,

In answer to your questions....

1. No, Oramorph did not make me groggy. It did deal with the pain and the world seemed a much nicer place once I'd had some! I did get constipated but this may have been due to any one of the several types of medication I was on at the time, including the chemo - they all listed constipation as a side-effect.

2. I used to run between 20 and 30 miles a week. I gave that up during the treatment and I haven't been able to go back to it. No saliva means that I can't really do anything that involves puffing and panting. I bought an excellent cycle machine and I now use that for fitness.

3. I only have one or two small beers a day - that's enough for me. I didn't drink for several months after the treatment because I felt sick much of the time.

Good luck.

Simon.

Simon thanks for the comprehensive answers. Ive just jogged slow 3 miles but I do find it easier going out on my bike. Im only week 3 so Im sure the treatment will catch up with me and Ill slow to a walk if that. Just bough a hat with a flap at the back for the sun which looks ridiculous! Looking forward to getting where you are and enjoying a couple of small beers. G.

Just a quick update Nicola - I'm getting my PEG out this Friday afternoon.  They gave me the choice of 'yanking it out' which entails a couple of seconds of mild pain (some say 'is that it out then'? others describe it like a punch in the stomach) or waiting much longer for a theatre appointment to be put under, have the added risks of anaesthesia and inability to drive home etc etc.  I asked what the majority plump for and they said the former so I took a big breath and said OK let's go for it.  She assured me there would be no after-effects (it's my birthday the following day and my sisters are taking me out for the day), just as I had read, the hole heals up in a couple of hours and there should be no pain or complications at all.  Fingers crossed and will let you know how it went.  She did assure me it's a piece of cake compared to having it put in which I won't forget in a hurry!

Hi Irene,

Good luck on Friday, am sure it will all be fine and have a Happy Birthday on Saturday. Hope your sisters really spoil you.

Hugs

Annabel xx

Hi Irene,

Good luck with Friday. I think you made the right choice, especially to be OK for your birthday

I think the thing to do is to try and relax when they do it so that it can come out more easily.

Thats what they told me to do. Probably worth asking if they don't say.

Colin

Hi Irene,

Good luck with Friday. I think you made the right choice, especially to be OK for your birthday

I think the thing to do is to try and relax when they do it so that it can come out more easily.

Thats what they told me to do. Probably worth asking if they don't say.

Colin

Irene, Hope depegging is ok and that you have a wonderful birthday. Regards, G.

Hi Irene,

Friday will be a breeze, and you'll feel great when you don't have that tube hanging around.

It only takes a few seconds and it's no worse than a visit to the dentist.

Look forward to a tubeless weekend!

Simon XX

Hi Irene,

Happy birthday. I hope all went well yesterday.

Colin

Hi all,

Anyone heard how Irene fared with fer peg removal?

Colin

Hi Colin,

Maybe she's out partying and enjoying her newfound freedom........

Simon

Haha not quite Simon!  Just been very busy at work and a bit tired in the evenings so haven't been online so often.  Have been doing a bit more physical work this past week than my usual sitting at a desk all day.  I did enjoy my birthday though and ate probably the biggest meal I have since treatment.  It was a humungous bowl of lasagne with salad and chips.  It felt like I was eating forever and not making a huge impression but I ate two-thirds of the lasagne, all the salad but only managed one chip!  I enjoyed it a little, but not as much as I would have liked!

The PEG removal really was a breeze.  It took my breath away for a second or two but it literally was only that, over in no time.  The nurse congratulated me on not letting out a yell (apparently most people make some sort of exclamation!).  My main concern beforehand was 'what if it gets stuck'?  She literally gave it a wiggle about to make sure it was moving freely, cleaned around the area, cut the tube (letting some air in frees it up even more) then said OK on the count of 3 - 1, 2, 3 and that's it out!  It oozed a little for a couple of days but that was all, no after pain or side-effects so very glad I agreed to have it done that way.  I was in and out of the appointment in about 10 minutes!  So Nicola it really is worth having it done the quick way.  It's quite a sharp pain but over in a flash.

I have been feeling a bit hacked off about the continued lack of food enjoyment, but I am making good progress at eating bigger quantities - just shovelling it down with lots of milk.  Also I seem to have worse than ever glut in my throat which is so difficult to clear in the mornings and sometimes makes me retch.  As I had post-nasal-drip (PND) before I got cancer (they assure me there was no connection) which also meant excess mucus in my throat, and have also had a cold, I'm not sure which of the three is the culprit or possibly a combination.  I must ask at my next check-up re the PND thing since there are ENT specialists on my care team as well as oncologists.  I met someone through work recently who also had throat cancer 12 years ago.  He is fighting fit, which is great news, but he admitted he still doesn't enjoy his food the way he used to.  That sounded pretty depressing, but then I reminded myself that everyone is different and that may not necessarily be the case for me.  It prompted me to read back through the diary I kept during my treatment and through February and March, which was well worth doing as it made me realise just how much things have improved since then and hopefully will continue to do so.

Nicola I share your experience with wine - I must try the lemonade tip and see if it taste a bit nicer!

Colin and everybody else - thank you all for your messages of good luck and congratulations and wishing everyone continuing good recoveries.  Guzzle you will be in recovery soon too!

Love Irene

Hi Irene

Congratulations on your continued improvement! I'm sure your taste buds will gradually improve - I know mine did. I have found that my throat is very dry though - you get rid of the mucus and then you get a dry mouth! Still it's a small price to pay.

Glad the peg removal was quick and painless. I couldn't have mine pulled out - I had to be put out. Apparently it depends how it was inserted in the first place.

Keep positive - it really does get better all the time.

Xx

Hi everyone,

I'm still plodding along slowly with recovery and battling this fatigue but thought I would say hello. I started having three meals a day last week for the first time since I don't know when! I've noticed a bit of an improvement with the fatigue, probably to do with the extra food and I'm trying to get into a better sleeping routine again ie - getting back to normal! I haven't slept well since having the biopsy etc last year. I find I now sleep for longer during the night (when I can sleep) compared to before the cancer treatment which I recall Simon mentioning the same for him too. I've had an awful cold, cough and sore throat for two weeks now and I'm struggling to shift it. I'm thinking could all be to do with low immunity, fatigue, lack of food and energy, did anyone else suffer like this with small ailments following treatment?

Irene I am so pleased the peg removal went well, it doesn't sound so bad after all. It's good to know you didn't suffer very much afterwards either. I'm still waiting for my appointment, it's getting a bit silly now, I've been waiting for six weeks now. I hope it's soon as it's a big step towards normality too. Sounds like you enjoyed your birthday but please try not to get too down about food, it's still getting gradually better for me too. A month ago I would never of attempted, bacon, egg, sausage and tinned tomatoes for breakfast but I have managed to eat it three times in the past week! I'll admit that I didn't fully enjoy it like I used to but I enjoyed it enough to have it again. I also managed to cook it too which was a big thing for me as I'm really struggling with fatigue. I was exhausted afterwards, thank heavens for dishwashers! You made me laugh when you said you are shovelling food down, it does feel that way sometimes!

Simon, I agree with the withdrawal symptoms if I don't visit the hospital for a while too! I find myself scanning my diary as I feel like I must have forgotten some appointment or other! Glad to hear the night sweats are a little less for you, that does sound like a long time for you to wait for an appointment, lets hope it's because he's a popular and successful doctor! I compare myself on a month by month basis now too, that way I feel I'm moving forward, otherwise it gets depressing when I think about how far I still have to go. That's good advice.

Gary, hoping all is well with you, if you're anything like me it may begin to become a little hard now, energy wise. I hope you are ok and managing to eat. Are you finding it painful now? I was given Gel Clair too but never used it. I used Diflam mouthwash which was good, but the coating only lasted for about an hour. I am indeed hoping to get a day in Paris when I go to euro disney next month, quite fancy a spot of shopping and trying out some of the cafes. It will be a break from Mickey Mouse anyhow!

Good to hear from everyone else too, I hope you've all been enjoying this good weather, it's certainly lifted my spirits for the first time in a while.

Speak soon,

Nicola xx

Irene/Nicola, Loving these foody tales so well done. You are giving me the munchies! Just had plate of carbonara with tons if parmesan . Getting a sore throat but managing to eat. Irene delighted for you. Nicola hope you get over your bug. But you are both on the mend. Im week five. Had second chemo last week. Still getting light excercise. Nicola if you can force yourself to di some it could aid sleep? I know its tough. Also Ive been trying not to nap during day and having early nights. Seem to have a bit of energy in morning so tend to do a little jog/ride then. Nothing too much.Managing with soluable co codemol / aspirin swish but have Ora morph on hand. May be TMI but any tips on plumbing being bunged up would be appreciated! Not complacent but been lucky with aide effects so far. I know I will prob be hit son but your recovery and that of others here gives me hope. So thanks to all of you. Nicola enjoy Paris and buy yourself something fantastic! You deserve it. You have inspired me to have a full English tomorrow! And in honour of Irene will make a Lasagne for dinner. Shame cant have a glass of wine with it because of pain meds! Hows your social drinking going by the way?

All the best, G

Simon hows your jaw mate?

Hi to everyone.......

I hope that everyone is set up for the bank holiday weekend.

I'm glad to hear that Irene's PEG removal went okay - we were all getting a bit concerned. Next up will be Nicola's tube removal and I bet she's really looking forward to seeing the back of it. Nicola, I remember I was strangely reluctant to let it go and I felt like I was losing some sort of safety net, but once it was gone I felt a sense of having a new-found freedom. Weird really.

Guzzle, I've still got a second bit of bone slowly growing in my month. It's not too painful at the moment and I'll leave it until my next check-up and see what they think.

I'm still having the nightsweats 4 or 5 times a week. It's really getting tedious now. I hope that the hormone doctor can sort it out on 21st.

My fatigue is still decreasing and some days I almost feel normal, like I've never had cancer. My mouth, although still drier than it once was, is everso slightly more moist. I hope it's a good sign of things to come. I still can't do dry food like bread or chicken, or anything spicy, but I do think that there is some progress - albeit very slow. Nicola, hopefully you'll find the same as you are very close behind me in terms of timescale.

Best wishes to you all.

Simon xx