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

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

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, I had a check up this week with my dietician and head and neck nurse and the good news is I've put on 1.5lbs since last month and I no longer need any Fortisip drinks! Wahoooo! I thought I would be on those damn drinks forever so I'm really pleased about that. I do however have to try a new calorie supplement called Calogen. It's 30mls three times each day and as I'm still waiting for my appointment to have my peg removed, I'm going to use it for the Calogen as they are pretty grim. They are purely a calorie booster so not a substitute for food as the Fortisips were but I tried them once before and they didn't agree with me. I'll give them another go and see how I get on.

Irene, I hope yesterday went well and I look forward to hearing from you about how it went. Many happy returns for today, I hope you I have a lovely day with your sisters, god knows you so deserve it! I bet it feels strange with no peg anymore but in a good way. I'm still waiting for my appointment, it's taken over a month so far! I've reminded my head and neck nurse this week so hopefully I'll hear something soon. Apparently I have the new brand of peg which is the suitable type to be 'yanked' out too! I really hope this isn't the case as I think I would prefer the sedative route. Apparently I don't get a say in which way they go about it, they will tell me on the day! Eek! Let us know how you're going, you're very brave for opting to have it removed that way.

Simon, pleased to hear that all is well. I too was warned that the gums/jaw cannot always heal themselves well after radiotherapy to the mouth which is why I was advised to have all eight teeth removed before my treatment started. That way if I do encounter problems in the future, there will be no teeth extraction wounds to deal with. How are the night sweats? Have they eased off anymore? Will you still be having hormone tests? Are you eating pretty normally now? I'm struggling to find a lot I enjoy at the moment although there are some meals I know I can eat well and get some enjoyment from.  I did manage to get some spaghetti (from a spaghetti bolognaise) stuck in my throat this week due to the dryness, that was a bit scary! I managed to enjoy a couple of glasses of wine last night with a meal out with friends, but I started to feel a bit sick. My stomach just isn't used to it anymore!

Gary, you're half way there!! It really will fly by now. How are you for pain and discomfort? I understand what Colin was saying, I didn't experience any real pain either until right at the end and it was more of a case of my mouth feeling so disgusting rather than painful as to why I needed my peg. I also found I was too exhausted to eat with no appetite so the peg was very handy (as much as I hated it back then!) are you managing to eat and drink ok? Any pain relief yet?

Debbie, I forgot to mention in my last post but I wasn't warned off of alcohol either. I have attempted a few glasses of wine recently but I find my mouth can't handle too much as it gets sore. I'm also having to add lemonade to rosé wine to sweeten it, it seems I've lost my sweeter taste buds. How are things with you? I recall you needing more surgery this year, is that still going ahead? Do you ever look back to this time twelve months ago and think "wow!" It must feel like you've come so far.

The kids party was ok by the way but I did need a couple of days to get over it!! Damn this fatigue!! Euro Disney is another month away so I have time to build myself up a little more, I'll be nearly six months post treatment by then so hopefully I'll see an improvement.

Enjoy your weekend everyone,

Nicola xx

Hi all, I had a check up this week with my dietician and head and neck nurse and the good news is I've put on 1.5lbs since last month and I no longer need any Fortisip drinks! Wahoooo! I thought I would be on those damn drinks forever so I'm really pleased about that. I do however have to try a new calorie supplement called Calogen. It's 30mls three times each day and as I'm still waiting for my appointment to have my peg removed, I'm going to use it for the Calogen as they are pretty grim. They are purely a calorie booster so not a substitute for food as the Fortisips were but I tried them once before and they didn't agree with me. I'll give them another go and see how I get on.

Irene, I hope yesterday went well and I look forward to hearing from you about how it went. Many happy returns for today, I hope you I have a lovely day with your sisters, god knows you so deserve it! I bet it feels strange with no peg anymore but in a good way. I'm still waiting for my appointment, it's taken over a month so far! I've reminded my head and neck nurse this week so hopefully I'll hear something soon. Apparently I have the new brand of peg which is the suitable type to be 'yanked' out too! I really hope this isn't the case as I think I would prefer the sedative route. Apparently I don't get a say in which way they go about it, they will tell me on the day! Eek! Let us know how you're going, you're very brave for opting to have it removed that way.

Simon, pleased to hear that all is well. I too was warned that the gums/jaw cannot always heal themselves well after radiotherapy to the mouth which is why I was advised to have all eight teeth removed before my treatment started. That way if I do encounter problems in the future, there will be no teeth extraction wounds to deal with. How are the night sweats? Have they eased off anymore? Will you still be having hormone tests? Are you eating pretty normally now? I'm struggling to find a lot I enjoy at the moment although there are some meals I know I can eat well and get some enjoyment from.  I did manage to get some spaghetti (from a spaghetti bolognaise) stuck in my throat this week due to the dryness, that was a bit scary! I managed to enjoy a couple of glasses of wine last night with a meal out with friends, but I started to feel a bit sick. My stomach just isn't used to it anymore!

Gary, you're half way there!! It really will fly by now. How are you for pain and discomfort? I understand what Colin was saying, I didn't experience any real pain either until right at the end and it was more of a case of my mouth feeling so disgusting rather than painful as to why I needed my peg. I also found I was too exhausted to eat with no appetite so the peg was very handy (as much as I hated it back then!) are you managing to eat and drink ok? Any pain relief yet?

Debbie, I forgot to mention in my last post but I wasn't warned off of alcohol either. I have attempted a few glasses of wine recently but I find my mouth can't handle too much as it gets sore. I'm also having to add lemonade to rosé wine to sweeten it, it seems I've lost my sweeter taste buds. How are things with you? I recall you needing more surgery this year, is that still going ahead? Do you ever look back to this time twelve months ago and think "wow!" It must feel like you've come so far.

The kids party was ok by the way but I did need a couple of days to get over it!! Damn this fatigue!! Euro Disney is another month away so I have time to build myself up a little more, I'll be nearly six months post treatment by then so hopefully I'll see an improvement.

Enjoy your weekend everyone,

Nicola xx

Hi Nicola, pleased to see that you are resuming your relationship with wine! Im sure that you will get comfortable with each other again now that you are reaquainted Im still having a bit of a jog , bike ride etc. But throat started to feel sore mainly on side being zapped. Still eating well and not on painkillers yet but have co codemol on hand. In overnight Monday for second of 3 chemo blasts. Will be halfway Tue.Also been given benzyadime? Mouthwash and gelclair which apparently puts a coating over any sore areas in moth. Dr gave me these in case pain hits over the weekend. Anybody used these? Pleased you managed kideggadon party and excited for you for Paris trip. Hope you get the chance to become bimble into Paris. Keep trying with the vino?

Regards, Gary.

Hi Nicola,

I am so pleased that things are still slowly moving in the right direction for you. You are pretty much how I was a few weeks back. It is slow going and sometimes you don't notice any change for a couple of weeks, and then you realise that you are slightly better than you were a month ago.

I still get the night-sweats one or twice a week. I'm due to see the hormone consultant on 27th June. Seems a long way into the future but maybe he's a busy guy (or maybe they hope I'll be better by then!). My jaw still aches from the osteradiocrosis but I hoping that fades with time too. I'll be glad to see the back of all this. I have the regular monthly tube-up-the-nose check-up on Thursday - if I don't go to the hospital at least once a week I get withdrawal symptoms!

I'm glad that your daughters party went well. It was a good test for you - judging by how I was I think that your fatigue should really start to reduce noticeably over the next few weeks.

Good luck Nicola - think how good you're going to feel when summer gets here.

Simon XX