6 months after treatment

Hi PG11, 

Welcome to the Macmillan online community. Your journey sounds very similar to my own, if you click on my username you’ll be able to read a bit about my story there.

Although we’re all slightly different I think considering what our bodies go through between the cancer itself, the mental stress that a diagnosis causes & the treatment, which although I’m eternally grateful that it offered me a cure from this awful disease, in itself is incredibly toxic, both on the chemo front & the radiation, so there’s no wonder at all that we suffer this fatigue is there? I would advise just trying to build up your stamina gradually & on days that you feel exhausted just try & accept it gracefully & rest (although I sometimes don’t practice what I preach lol). Maybe try & see a different GP that’s prepared to be a little more supportive about your insomnia, I can imagine that’s taking it’s toll also, there’s nothing worse than lack of sleep! Also have you tried the headspace app that you can download onto your phone/tablet etc.,? it’s aimed at relaxation, short meditation exercises & mindfulness, all which can be great for aiding sleep. 

Nicola

Thank you Nicola and thanks for sharing your story I should put mine out there as I know reading about other people going through the same scary worrying hideous painful time helps us all to get through it . You feel a little stronger when your part of a little armyI’ll get the head app and give it a go . I have an appointment tomorrow with Oncologist ( here in Liverpool ) so I’ll mention my concerns it’s been 6 months since I have seen any one  unfortunately had two appointments cancelled  so maybe I will feel reassured after appt . I hope so it’s my birthday  and I would like to start thinking far far ahead maybe ??? Good wishes to you Nicola and everyone else  x

You’re welcome PG11 & yes reading other people’s experiences & sharing your own does help in coping with the stresses that naturally come along with a cancer diagnosis & especially one as rare as ours!

My treatment was part of the PLATO trial & the trial has just come to an end, I was just discharged a couple of weeks ago from oncology as my oncologist had followed me up for 3 years in line with the trial protocol, I’ll now be followed up for 2 years by my surgeon & hopefully if I’m still NED I’ll be discharged completely. 

Sending you lots of good luck for your appointment tomorrow & wishing you a very, very happy birthday. 

Nicola 

HiPG11 and welcome to the group.  I suffer from insomnia on/off and have done so for many years, way before my cancer diagnosis.  If the suggestions Nicola has made don't work, then ask to speak to a different GP. Insomnia can be seriously debilitating.  My GP prescribes me a course of 14 days Zopiclone tablets to break the cycle of not sleeping and that works. Zopiclone tablets are nonbenzodiazepines and I was advised that there is a very low risk of addiction from using them for short periods of time. They break the cycle for me and I would say I usually have to only have  a couple of 2 week courses a year now.  Happy birthday for tomorrow! Bev 

Thank you Bev I shall ask firmly … at my appointment tomorrow  . What a birthday gift that would be a decent night sleep  . So kind of both you and Nicola to take the time to reply  . Have a lovely weekend  everyone