So many people have this fear of morphine and thats a real shame.Morphine when used for chronic and acute pain is completely harmless and as Hagg says just does its job efficiently.People who use morphine when they dont have pain or for some stupid recreational reason are the ones who get all the zombie doping effects.Robin was taking 240mg a day at one point and he was alert and rational but pain free.He was even allowed a drink or two and it didn't cause a problem.Its like most drugs,used correctly for the right purpose its a godsend.

I eventually had to allow myself the morphine I needed and went up to the current regime of a 75mcg patch and 10mls of Oramorph every 2 hours if needed.

However, since I finished radiotherapy three weeks ago, I have been in so much MORE pain. I was told it would be worse for the two weeks following the end of treatment, but I thought I would then start getting a little bit better.

I still can't eat much as my throat is so painful and I've tried taking Oramorph before I eat but it doesn't make any difference. I'm wondering if it no longer has any effect on me as when I just take Paracetamol it feels better although very short lived.
I'm trying not to get down but I really want to eat and i crave loads of foods but when I try them they just hurt and food is becoming a big issue with my husband as he's always on at me to try and eat. Maybe it would have been better if I'd had a PEG.
Everything is taking so long and i can't see any difference. Surely by now I should be feeling slighly better?

Also I'm so scared that when I have my scan - if it is clear - how will I know that means anything, if a year later I find out it has come back somewhere else.

Sorry to moan on but I guess I am feeling a bit down today, but thanks for reading.
Cheers
Sandy

Hi Sandy
'Things will get worse for two weeks and then you'll be better'. The standard parting message from radiographers when they send you on your way after cooking you for seven weeks or so. I wonder why they do that because all it does is cause more anxiety when you find yourself feeling worse weeks later.
In our experience, Trevor took more like 7 or 8 weeks before he started to pick up and we worried so much during that time that something was wrong. Not what you need after all you have been through.
If your pain isn't being covered by your current medication Sandy, you need to talk to your dr and get it upped. Don't suffer when you don't need to.
You sound just as Trevor did in relation to food. It was such a major issue and depressed him terribly when he couldn't join the family to enjoy a meal. Of course, he had a PEG and in the end he used to sit at the table to have his 'meal' so that he could enjoy the sight and smell of the food at least and take part in the social aspect of eating. It IS very tough and the whole eating issue is very, very difficult for your husband too. He feels responsible and helpless and frustrated since he's your carer and just doesn't know what he can do to make things OK for you. No doubt about it, it's an awful time. Try to take things day at a time and honestly once you get back to eating and feeling a bit better, you will be surprised at how quickly the time has passed (that sounds really stupid but it's true)
On the subject of your scan. You may very well get a clear result (and how good will that be!) and you may well discover in a year that your cancer is back (or maybe you'll even have a different one) but whatever your result, you won't have to worry about that until (if) it happens. There is absolutely nothing you can do about it and at least you will be monitored and if there are any issues you will get to have them checked out quickly due to your Ca history. Put your energies into getting through your current situation, Sandy and when you're on top of things you'll have a renewed appreciation of EVERYTHING and EVERYONE. Make the most of every single minute because the truth is that not one of us is here forever. Time and life is finite so make sure your's is full of the things that matter to you.
I hope I don't sound harsh because I don't feel that way. Your post took me back and I felt all that raw emotion and pain all over again, I do know what you're going through and what a struggle it is.
I can't wait to hear when things are picking up for you.
Love
Deborah

Sanjan,

Your pain will get better and you will begin to eat better. All I can say is the past two weekends I had steak before this chemo. So you will eat again give it time. And don't worry about scans remember no stress. If you sit and worry what may happen your not going to enjoy things, don't worry your life away enjoy things as they are and foods will change you will eat again as I know I will be back to eating here in a few days as I was after this chemo wears down. We have to give our bodies time to adjust.

Pam

Hi Deborah and Pam

Thank you so much for your support. Pam - I could just eat a big juicy steak now! (in my mind anyway!)

Deborah - Your reply really moved me - I felt quite tearful but also I know you are right and I must get through "now" and not dwell on what may or may not happen.Unfortunately that's what I'm like, I always think of all possibilities and drive my husband mad.
Since my last posting, I do feel more reassured about my progress. I have spoken to my Specialist Nurse and she said around 6 weeks after treatment is the average time for people to start noticing any difference not two weeks.

When I look back over the last week, if I'm really honest I can see tiny improvements, such as not wanting to stay in bed all day, but get out in the sun, and also my neck looks as though nothing has happened to it as it's healed so well so that's a positive.

The main and worst problem as I mentioned is not being able to eat when I really want to. In between eating,I feel I'm getting better, but lately when I try to eat something, it immediately gives me loads of little ulcers that look like tiny pearls. They appear immediately and burn and stop me eating as they are everywhere in my mouth,then after an hour or so they seem so fade away and the pain goes until the next time! It doesn't seem to make any difference what I try to eat, they just appear. They are completely different to the "normal" mucositis stretches of sore tissue.
Does anyone know what these are? and am I making things worse by continuing to try and eat - would I be better off sticking to Esure milkshakes for a while?

Cheers

Sandy

Hi
Following on from my previous posting, I have just had my first ENT appointment since end of treatment.The Consultant was very pleased with my progress and said I was healing extremely well. I asked him about a lump that is still on my neck,(much smaller and long rather than round like the original)and he said it is probably scar tissue but if it is still there in a months time he will arrange a scan. Is it likely that it is just scar tissue? I really can't bear the thought of going through further radiotherapy if he didn't get it all the first time.
Cheers
Sandy