Liz,

Another point I would like to mention perhaps was one of those things that just happened to hit me during Tx and that is constipation! A couple of my Oncology nurses mentioned it somewhat in passing but didn't emphasize it nearly enough as it applied to me. It seems that heavy pain meds will tend to cause this as the meds actually block (not to be gross) the ever so slight signals/pain associated with normal bowel activity. In other words, the brain fails to get the normal sensory signals that normally tell one when to head to the loo!

Just something to mention that you folks might want to keep in mind.

Bill D.

Adding to Bill's post, I found constipation to be the worst side effect of them all. Pain can be managed, they did a lousy job with constipation and it can really make you suffer, especially when homeostasis stops. The pain meds are the culprit; dietary fiber, staying hydrated, stool softeners, Reglan, fruit in your diet all help. Talk to your nutritionist.

Oh Dear
Iam really not sure that either Robin or myself are gonna get through this experience!!! At the moment we are at t-4days.Radiotherapy starts on March 1st.Thursday we went to the hospital for the last simulator session and we had to hang about for ages.Robins stress levels just went through the roof!It minded me of when my children were small.I feel like turning him over my knee and paddling his bum.Nothing that anyone says or does is right .Its like he feels the world is ganging up on him .He seems to be deliberately trying to either hurt my feelings or provoke a confrontation so that he can ultimately say to me "stuff the radiotherapy,i am not going to have it "Every medication that he is given to try to help ends up in the bin and everything the doctors say is rubbish.God help us both!
It is a little difficult being a member from England because although you wonderful Americans are as supportive as i have ever seen in a group,treatment here is different in some respects,and medications is very different.No mention has been made of any provision being made rgarding a peg or any feeding advice(maybe they will do that as and when)I have already been told that these great pain patches you get are not available in this country which seems a great shame to me also there seems not much choice in pain relief availability between codeine and paracetamol and morphine.Nevertheless i am researching everything you tell me to see what our equivilants are and i think i am practically as prepared as i can be.As for the emotional preparation,ONE DAY AT A TIME lol.
Thanks again my friends
god blessyou all in your fight with this wretched disease
Liz

If Robin continues to work in his chosen profession, it is absolutely IMPERATIVE that you find some way of separating his neck from the slime, mold and general corrosion a plumber inevitably comes in contact with. I am a nurse, and am facing the same issues. Ideally, Tegaderm or Op-cite would be the answer, but once you glue those thin pieces of adhesive plastic on, you must ultimately tear them off. BAD SCENE! You want to hear SCREAMING? So the best thing would be to get some Silvadene or Zinc Oxide and goop his neck up, then put an ABD pad or gauze dressing over top and try to find some place that doesn't hurt to stick the tape to. Then a turtleneck shirt or sweater. Just keep the radiation site from getting an infection in it.

Best of luck, I am now 9 treatments away from being done.

Andrea

Hi Liz,
I am also in the UK, North West and am about to start week 6 (finish a week today, hoorah!) of radiotherapy and weekly chemo. I had a bilateral neck dissection & free flap surgery at the start of December -Radiotherapy/chemo began third week in Jan. I have followed many postings here and carefully read all of the advice, invaluable. However, as everyone says, we all respond differently to the treatments and in many respects, mine has passed okay so far. I hope that the journey for you and Robin will be as smooth as possible. My own experiences may not be comparable, but...
I have, so far, had 22 treatments to each side of the neck, mouth and throat and for the final 8 treatments, just each side of my face. As a result, the neck is now a little sore post radiatin, but not relly burnt. I wake up several times in the night to plaster myself with E45 cream and also use Radiance Gel which I bought on-line (Bristol Cancer Centre) very soothing and cooling. The sides of my mouth and the neck scar are the most tender but a little Aloe Vera gel has helped the mouth. I have also been drinking a cup of camomile with Manuka Honey 15 mins before and after radiotherpay as anectdotal evidence suggests this can reduce mucositis and I believe for me it has. The flip side is that with teeth being at risk from the treatment, scrupulous brushing and mouthwashing are imperative! Christies in Manchester are trialling the use of Manuka Honey for H&N patients, so I thought it was worth a try! I have a PEG fitted but haven't had to use it and although eating isn't really a pleasure at the moment, I have taken the advice to view food as medicine and eaten what and when I can, even if it tastes of very little. To be honest the taste aspect changes day by day. Week 3 I thought I wouldn't be be able to manage to eat for much longer, but that passed and I found some savoury foods ok. Sweet taste is now lost, but I am taking Zinc as I read that this helps with getting taste back, eventually.
As for tiredness, it comes and goes. I am 36 and am not used to having to give in to sleepiness, but for the last week, I have accepted that it's essential to rest as much as I can, when I feel tired. No medals for shaking off the fatigue! That said, I have been relieved not to to be utterly overwhelmed all the time:)
I drink water as much as I can, even when not remotely thirsty, as everyone who has gone through this advised; I think it helps.
As for pain relief, I was given a liquid paracetamol solution to use 4 times a day - before eating is best - and this has been fine, although it stings a bit when your mouth is sore. Also Difflam mouth wash, watered down though, as it is quite strong. The hospital also recommend Bicarb and salt mouth wash.
I don't know if this of any help, however, good luck to you both and your family inthe weeks ahead. It does pass faster than you might imagine and you're right, posters her are so very helpful and supportive, which is great for us.
Georgia

Hi Georgia
nice to meet a fellow countryman on this great site,and how good it was to hear your experience and treatment in the Uk.You seem to be coping very well with your radiotherapy and i will find it easier to source some of the products you recommended as i know they will be available here.It is very interesting to see the differences in cancer management in our two countries and i get the impression that patients in the US are a lot more involved in the whole process of diagnosis and treatment,and possibly have many more options in pain managent and more input into the whole procedure.
thanks again to you all

Hi Liz,

Just like you and Georgia, I am also in the UK, it does seem that the treatment and medication on offer are diffrent in the States, however the advise and support has been just what I have needed.

The biggest problem Mum and I have come across is people not wanting to tell her how things are, it is like they do not think she will cope with the info, what they do not know is she a stronge cookie and if they don't tell her she thinks that is because it is bad, often it has not been as bad as she will have prepared herself for.

Mum had lymph nodes 1 - 4 removed 23.1.07 good recovery from the operation, but low red blood cells meant she was short of breath and at risk of aspiration, everything now goes via the PEG and apart from WANTING a cup of tea, she is coping very well. The PEG will mean she does get her 2000 calories a day plus all the water she needs.
Go for a PEG if you can, you may be glad of the option later on.

The best thing we have found for the pain is a combination of MST (slow release morphine) every 12 hours plus Gabapentine (slow release for the nerve pain) every 8 hours plus paracetamel every 4 hpurs during the day, most of the time Mum is pain free. I say we because seeing her suffer breaks my heart.

Mum has her 1st of 34 radiotheraphy treatments today. I am concerned that her red blood count will get worse throughout the treatment, and we are trying to avoid her going back to hospital due to the pain managment not being dealt with last time she was in there. Has anyone out there be offered EPO, I have asked for it and been told it is not avaiable on the NHS and probably not worth me paying for it.

Thanks everyone for all you support.

Andrea Eve

Liz,

Tell Robin to just settle down, put on his big boy knickers and take the prescribed treatment in stride! I know it is difficult not to be mad at the world when we have to face such challenges but things do happen. I felt somewhat the same way when diagnosed last April and went through a few days of shock, self-pity and mad at everyone including myself as a smoker for 40 years. I then had to come to grips with the fact that all of the emotions in the world would not rid my body of this horrible disease. I then realized it was time to get on the offensive and "slay the dragon". Robin may think that he just doesn't have the time or patience to deal with this but remind him and stress to him the fact that any other available options are not all that attractive.

Good luck and let us know how things progress.

Bill D.

Oh Bill how i chuckled as i read your words"big boy knickers" thanks for putting a smile on my face for the first time in days.He seems to have settled down for now so lets hope it stays that way.