Hi all, new to this group.
I have stage 4 metastatic GIST in my liver and peritoneum, there are more details on my diagnosis and treatment in my bio.
I’m relatively pain free and side effects of treatment have generally been manageable, my main issue now is with sleep and fatigue. I drop off to sleep ok but then it is very broken, as I’m waking several times in the night. Going to bed at 10pm, I’m lucky if I manage between 4-5 hours (going by my sports watch) It’s causing me to be severely tired during the day, I am managing 1-2 hour naps in the afternoon but still end up feeling ready for bed by 8pm.
Does anyone have any tips? I really want to avoid sleeping tablets as I don’t want to feel drowsy or groggy. Also I’m not laid awake worrying about my health I just can’t seem to manage any solid periods of sleep. This has mainly happened for the last 2-3 weeks. I spoke to my clinical trials team yesterday and they did offer sleeping tablets with the risk of feeling groggy during the day which is what I want to avoid
Just looking for any advice or tips from anyone suffering with similar issues. Thanks.
Hi, and a very warm welcome to our little family, though I'm so sorry you find yourself here. a place no one wants to be, but let's hope you can find some answers, along with the support and friendship the guys can offer, I went 18 months on 1 1/2 hours a night, and the things that worked for me was learning to relax by doing a psychologist led course at Maggies, stopping sleeping through the day, if I was tired I would power nap without sleeping which learning to relax made possible, not eating 3 hours before going to bed and making the bedroom was as dark and quiet as possible. If I couldn't sleep I'd get up for 15 mins and read a little then try again, and little things like classical music just loud enough to hear and the smell of lavender helped too. I also found going on the phone for half an hour often helped as well, even though the experts say otherwise. Today I sleep 5-7 hours most nights, which is more than I slept before I retired, I'm sure the guys will have lots of advice as well and my very best wishes for your trial my friend.
Eddie
Hi,
I too have broken sleep as I am up 2 to 3 times a night for the toilet, however I am asleep within seconds of getting back into bed. Is that the same for you or do you struggle to drop off? When I was in the army I taught myself to sleep at will, whereby even if not tired I could just decide I was going to have half an hour and would be asleep within seconds. The technique I use (which is contrary to what you will read elsewhere) is to use shallow breaths, in for a count of 4 and out for a count of 4. I don't know if it works for anyone else but it works for me.
Hope you manage to solve the problem.
Regards
Les
Hi
I had sleep problems before mainly due to work related stress. What I have learned is that
1 It is normal to wake up every 90 minutes or so , as that is the normal length of a sleep cycle.
2 Do not place too much importance on how much sleep you had. Because then you make it into a bigger deal and that stress you more, it becomes even more difficult to sleep. Try to carry on as normal during the day as possible so sleep is not dictating your life.
3 If I can’t sleep or wakes up at 2am. I will just say it is also nice to just rest and relax. It is absolutely fine not sleeping.
With all the treatments we have and stress comes with our situation, it is OK to have some sleeping issues. Main thing for me is : don’t give it too much power and try to do things I enjoy during the day instead.
Hope this helps
Stella x
Thanks for the advice. Pre pandemic I could easily get by with only 6 hours sleep. During lockdown and prolonged working from home this turned into 8-9 hours as I didn’t have the commute time. Fast forward to now and anything less than 6 hours feels like I’m struggling to function.
I have read about avoiding naps during the day but I’m struggling to avoid it. I’m getting out for walks to remain active but by mid afternoon I’m falling asleep on the sofa so do try go to bed for 1-2 hours.
I have also tried lavender pillow spray but it doesn’t appear to have helped.
I’ll look into relaxation techniques and Maggie’s courses.
Thanks for your help.
Thanks for your reply. Sometimes it is caused by needing the toilet a couple of times during the night but can also just be waking up randomly and then struggling to get back to sleep. Feels like every time I wake up it’s then taking a good 30 mins to an hour to drop off again.
I’ll try the breathing technique.
Thanks
Thanks for your reply. I have been guilty in the past of thinking too much about work which impacted my sleep. I’d switch off after work but as soon as my head hit the pillow I’d be thinking about things I didn’t get done that day and try plan in my head what I was doing tomorrow.
I’ve been off sick from work now since mid-April so don’t have those work stresses and the frustrating thing is I’m not thinking about my health when I’m laid in bed.
I think you’re right though that I am making a big deal about my sleep issues which then gets me worrying when I go to bed what kind of sleep I’m going to have.
Your welcome my friend, I'm glad your going to look into the relaxation course at Maggies, it's available live online as well, and you'd be surprised how different true relaxation is to what most people's ideas of it are.
Eddie
I had sessions with a clinical psychologist and his main point is not to make sleeping issues more than it is. I also find sleep school app very helpful. You can have a look at their website.
Hope this helps
I agree with that
If I can’t sleep I don’t stress about it I just lie there and think that I am still resting my body and enjoy the calm and peacefulness of the night
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