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

Hi Colin,

Good to hear from you.  My RT sounds similar yours although I only had the one side too. The machine seemed to zap me from the far side, then keep moving over until it was directly above my head, stopping to zap me as it made it's way. So it zapped me from five or six different positions. Each one was a few seconds but I remember counting the zaps and in total came to around 90 seconds. Then I always knew it was time to be let out from the mask! A couple of times the machine broke down which was frustrating. I have the mask at home now as I wanted to keep it however I got it out of the cupboard recently after three months of not seeing it and I must say, it stirred up some horrible emotions.

Two sessions a day sounds harsh! That must have stepped up the side effects for you. I'm shocked that Gary hasn't been offered a PEG as we were, I hope he can manage to eat without too much pain. I remember that you said you still have yours, I'm due to have mine out soon and I think it will feel strange not to have it!

Speak soon,

Nicola

Good to hear from you Nicola. Glad centre was helpful. Only had v. Mild nausea but still eating and meds ok. Going to attempt another curry tonight! Apparently you eventually get your curry buds back! It just takes time and maybe you develop milder tastes. Try to bulk up a bit that should help fatigue. I guess Im adjusting to not running etc but inevatably will start to lose weight. A few people have said they can get a bit down when they finish treatment so keep your chin up. G.

Hi Nicola,

Good to hear from you and I'm glad that things are moving in the right direction. I think you'll find that having your tube removed is a bit of a milestone for you - it was for me. It felt wonderful not to have it dangling about. It was a lifesaver though. Like you, I'm surprised that Guzzle hasn't been given one. Gary - I would ask for one straight away if and when you start to have difficultly swallowing.

It's a shame about the fatigue, Nicola. Five months post treatment was the point for me where I felt that the fatigue had reduced to near normal so maybe you'll see an improvement in the next few weeks.

My phantom tooth has been diagnosed as, wait for it......... osteoradionecrosis! I didn't know what it was either. Apparently it's bone that has been killed by the radiotherapy and started growing through my lower right mandible. I'm to see yet another consultant to get it sorted out. I'm still having the night-sweats about 4 or 5 times a week and the next port of call for this is the endocrinology department to get my hormones checked. I'm certainly getting my monies worth from the good old NHS - imagine if we had to pay!

Good luck Guzzle and get that curry down you while you can - I used to love vindaloo but it's a dim and distant memory nowadays.

Simon.   

Sorry to hear that mate. Hopefully specialist can fix it soon. Regards Gary