Worried about starting radiotherapy

Hi Elaine .Radiation fatigue is like a wave hitting you and knocking you i over  is easiest way to describe it. I found you can’t fight it it’s a case if listening to your body lTo be totally honest it took me 3 years to stop having / needing my naps ok I got them down after a year to 20 min power naps. Just remember your body’s taken a battering  there’s no quick fix ,the more you try to fight it the harder it can be. Don’t get me wrong i was back to my bike rides fairly quickly but only small ones took time to build up to what I can do now. Todays ride was 60 km in 25 degree heat,plenty of water and factor 50.As you  may  gather we’re away at the minute..Ring the bell on Friday then go home and curl up in a ball and recover.

Hazel 

Are you having nasal tube or PEG (stomach one) I wonder? Here in southampton, they don’t offer PEG one initially so I tried nasal but I have strong gag reflex and couldn’t tolerate it. I asked for PEG and they put me on waiting list but now I’m in week 5, I doubt it is an option. So, despite them ‘strongly advising’ the nasal tube reinsertion I am refusing and continuing to eat what I can (shakes, soups etc)  albeit not enough calorie wise but enough to keep me hydrated, feeling fairly well and upbeat. 

Sorry, just read the thread and can see it is the PEG. 

Thanks Hazel

just been reading about radiation fatigue, it certainly seemed to hit out of the blue this morning! I sort of expected it sooner I suppose but yeah I’ll go with the flow and rest up when I need to. Thanks  

Thanks Elaine, it certainly seems like there's a lot going on, and it is just so great to get all this support - but even more important - to talk to others who have been there and done that!  Thank you!  Andrew

Hi Jo I start radiotherapy Monday and also am petrified.

Hi Muffin Stick with us we will all help if we can. Take  it one day  at a time don’t think too far in advance 

Hazel 

Hello Muffin and welcome. If you feel you can,  tell us a bit about yourself 

Radiotherapy is a pretty aggressive treatment and always worst in the sensitive area of the throat. 
Nobody gets all the side effects and the ones you will get are easily mitigated to make you comfortable. 
Yes it’s a difficult ride but there’s lots of help available from your team and masses if support from all of us here who’ve done it, survived and are living well years later. 
A day at a time. 

Hi Muffin and welcome  

My very first session Monday is 8hrs of Chemo - a long long day ahead - i think dread the chemo more than the radiotherapy

Jo

X

Hi Jo The chemo side effects with cisplatin are manageable, remember take all the anti sickness meds and if you feel they aren’t working tell the team straight away. We all get started in the cheapest anti sickness meds, I’ve a friend who took 8 different ones before she finally got sorted. Your hair with cisplatin won’t fall out unlike many other types if chemo.lThe reason for the long day is yiu will have several hours if saline pumped into you so frequent trips  to loo the the actual bag of chemo which is mixed up specific to your height and weight nothing generic about that the chemist on site mixes it each time. The actual chemo probably takes 90 mins,then  another few hours of saline. Intermixed with that will be yiur first radiotherapy session well in my case it was after chemo during last saline infusion. 
My day started waving hime at 0645 finally back at 2030 then uo at 0600 next morning for 2 nd radio.lTake a long phone cable with you I took iPad with several tv programmes downloaded plus my own tea bags kindle and a flask of  ice cubes to try to suck while chemo was going in ( well I would have taken ice cubes but left flask in kitchen unit ) 

Youll get through it I did 

Hazel x