Hello everyone. It has been a long time since I posted on here as I was diagnosed with another tumour in my skull towards the end of last year. I had a course of radiotherapy and suffered the usual side-effects. As the tumour was behind my left eye and nudging my brain the r/t was aimed a bit higher than my mouth and, thankfully, I didn't have the swallowing and saliva problems that most of you have experienced. I was extremely tired and nauseous and of course my skin was burnt. After about a month I suddenly felt very much better - the redness went away and my energy levels returned - fantastic! But now, two and a half months since the treatment finished, I am sleeping practically all day long and have a feeling of nausea most of the time. Some hair fell out after two months - fortunately I can disguise the gaps! Does this sound familiar to anyone else?? My quality of lfe is 'ziltch' and I am losing weight due to feeling sickly all the time. I have seen my GP and he has arranged for blood tests but I have no results yet. It just seems odd that all this is happening so long after the r/t sessions have finished.

(Great to see you back on the board Vicki).
Brenda

Hello Brenda,
I've followed some of your posts on here and its good to see you back.
I'm sorry about all you've been through.
I was still vommiting every day up to about 2&half - 3 months after my R/T finnished. & ended up being admitted to hospital for malnourishment and dehydration. At that point my quality of life was zero too. & to be honest i thought it would never improve again!I thought "great! This is it"! A weeks stay and a truck load of antiemetics later and i managed to stop being sick. Gradually. I think for me it was breaking the cycle, switching to a pump feed over night, which took the preassure off trying to get enough in the old RIG tube. & then getting enough nutrition allowed the rest to finally begin to heal.
I found the majority of my sickness was in my head though. & that doesn't make it any less real!
I hope you start to feel it ease up soon. I do think we expect too much of ourselves to try and recover so quickly. But hey!
As for the hair loss, i lost some from chemo, but i also lost a band of about an inch accross the nape of my neck from R/T. Along with my "side burns" *lol*
I finnished treatment in december and its now about an inch & half long. It's curly and soft like baby hair!
I hope you start to feel some relief soon Brenda. I can really empathise with how terrible you are feeling.
All the best,
Michelle

Brenda,

I'm sorry to hear that you have had a rough time. I think it's really easy to underate the side effects of Radiotherapy. I thought I would be back at work inside of a month! I ended up having chemo & radio concurrently and I was sick for months afterwards. I lost 3 stone in about 3 months, as I literally did not eat a thing. Eventually I was given the steroid that you get after chemo, and I took that for a few months, as it was the only thing that stopped me from feeling sick. When I was able to eat I started to recover, but it has taken me about 15 months before I have (nearly) fully regained my strength. I slept more than my cat during most of this time. The trick is to try and do something you enjoy whilsat you are awake, whatever the time is, and ask others to help you with the boring tasks of life. Ortherwise there really is no enjoyment in life. I was outside in my garden at 6:00 a.m. last year, as I only had an hour of avctivity in me before I fell asleep again. It will get better in the end, but you need to let the body recover at its own pace, and not expect too much in the early days.

It's really strange dealling with your hair after radio, mine has just about grown out again, as I lost all the hair from the top of my ear down From the chemo my hair thinned out generally, and the regrowth is strange, as that hair is now about 4 inches long, and the rest of my hair is longer. It takes careful styling to disguise it, but I'm just grateful that I can.

All the best Brenda, it will be hard work, but the tiredness is normal. I know I convinced myself that the tiredness and loss of weight were signs of the cancer coming back, and I'm sure this is the back of all of our minds when we are feeling low, but it is just the side effects of the treatment you have had. If you have any worries then phone the macmillan nurses, as they can offer lots of advice and care that could help. Its really tough when you switch from the daily monitoring that you get during radiotherapy to suddenly only seeing a medical professional once every few months, so do keep in contact with the hospital, and let them know the problems you are having.

Many thanks to both of you for your reassuring words. It's good to know you are both now 'on the mend' after such a long battle. As you say Jenni, the first thoughts are that the cancer is on the march again, but after reading your posts I can calm down and just let things take their course. You are right Michelle that getting the right foods down is vital to the healing process - I now have two lots of anti-emetics to take and they are helping me to face food again! Not doing much for the tiredness though!!

All these side-effects coincided with the arrival of my first grandchild - Eva Rose - and I desperately want to be fit enough to babysit and enjoy some time with her. One smile from her is a great tonic!

Thanks again for your helpful words and all good wishes to both of you. Brenda x

Congrats on the birth ofyour grandchild!
Children really are great for making you "put on a face".
Whenever my sisters step son came around i managed to muster the energy to play a little with him. Good news on the antiemetics!
Take care!

I lost a patch of hair during RT and when it grew back it was curly,the rest of my hair is really straight lol lol.