Sleep

General advice
1

Hello Everyone

How are you all?

I recently had a few days of bad sleep and wondered how you all find SLEEP in general and with pending changes to shielding?

Is challenges with sleep something you experience?
Have you found your sleep has been affected by treatment/SCT?
Is the shielding and changes in the guidance having an impact on your sleep?

I have always had difficulties with sleep during my chemotherapy and immune therapy treatments, especially when on high dose steroids and post SCT. I wondered if there was anything others do to try and help them selves with sleep challenges that they would like to share?

As I have had issues with sleep for a number of years I wanted to take this opportunity to share some of the things I do. Although some may seem generalised or generic I may have found something that works for me that others have not tried. Similarly there may be something you guys do that know one, including myself has tried before.

I thought this would be a good time to share our experience, hints and tips.

So I remember my sleep problems really becoming an issue in early 2017 after my first chemotherapy cycle and being moved on to different, higher dose steroids. This caused my sleep pattern to change a lot. From going to bed really later and getting up really late, which was not an issue because I still got 8 to 10 hours a night. I found the longer I was on the high dose steroids the more my sleep pattern changed. I began not sleeping until the early hours of the morning and was only getting a couple of hours sleep a night. It didn’t help I had added issues with anxiety, agitation, restlessness and feeling ‘wired’ all the time.

Initially I fell into the trap of only sleeping the hours my body would let me have but realised it was having an impact on my ability to concentrate, communicate and cope with day to day life including treatment. So I got help from my GP with Sleep hygiene and started a journey on how to help my self.

I tried creating a bed time routine to encourage my internal body clock to recognise when it was time to sleep but I found the impact of treatment and where I was at with treatment was winning. I was overwhelmed with knowing that I needed a Stem cell transplant and this is when Insomnia become an issue. During this time I found the following things worked for me. I’m hoping by sharing this challenge I had pre-transplant, during and post will help others:

  • I developed a simple bed time routine starting with turning the TV off at a specific time
  • I normally turn my TV off an hour before bed
  • using this time to tidy and wind down the racing thoughts in my mind
  • I then took a shower
  • made a hot drink (hot chocolate of course)
  • putting an audio book or podcast on
  • dimming the lights
  • I found due to being in hospital so much I needed noise to sleep (a lesson I learned in time) So I went to bed with some calming music on.
  • also used a lavender scent on my pillow which is calming

There are lots of other things that people try to support good Sleep hygiene some being;

  • cooler room temperature in you bedroom
  • create a calm environment
  • try not to use your phone/Ipad/laptop in bed and avoid blue light
  • go to bed and get up at the same time every day
  • try not to spend all night in bed tossing and turning. I found that If I wasn’t asleep within an hour of going to bed getting up and removing myself or putting the audio book back on I was less likely to get frustrated.
  • I tried to spend less time in my bedroom, although I can appreciate it is hard with Chronic fatigue. With my ongoing chronic fatigue it is easy to opt for resting on the bed but I found I didn’t sleep so well those nights and made the move to rest on the sofa with a comfy blanket.
  • if you are able to freshen up your bed linen this is always a win for me! nothing beats a fresh set of bedding

The other important things I would suggest is trying to reduce caffeine intake in the evening. I’m not keen on coffee but I did go through a period of drinking a lot of Pepsi once I reduced this I found resting was easier.

What do you to try and help your self sleep? Do you have any tips or tricks that might help others? maybe you have challenges you wish to discuss!

All the best,

Michelle
Online Community Champion

2

Hi Michelle

Hope you are doing well.

Being a teenager during lockdown, I started to progressively to go to bed later and get up later since I had no school or commitments. I was starting to not like this because I would wake up, get ready and it would be lunch time and half the day was gone. So when I had to start to think about next year and what I am going to do regarding university preparation, I started getting up early and get that stuff done so I had the rest of the day to do my own thing.

What I found was by doing this, I was becoming more tired at night and this helped my sleep better as my mind was active throughout the day.

As for sleeping during hospital stays, I found it to be very rare for myself to get a full night sleep, as I was always linked up to some machine that would bleep during the night. One thing I found worked really well was as you said getting into the mind set of going to bed. For me, this was after the nurses had handed over to the night shift which was around half 8 each night. From there, I would get ready for bed and watch a movie or a TV series and settle down. I know it does not sound like much of a routine but this is what worked for me. Also, being a heavy sleeper was really helpful as there was times I slept through machines going off while my parents would wake up from it.

Everyone reacts to chemo and treatments in different ways and this goes for ways to try get more sleep. My best bit of advice is trial and error and see what works.

Hope this helped

Cameron

Online Community Champion

3

Hello Cameron

Nice to hear from you.

I appreciate your input.

As a younger person you certainly would experience it differently. I can see that during lock down all our routines changed. I think your right in mentioning skeeo routines being trial and error what works for one may not necessarily work for others.

I can relate to the hospital stay sleep routine and sleep consistnecy. Being in hospital the environment can be quite noisy and disruptive. Espcially during a SCT with a combination of IV’s. I had a 24 hour pain pump which was changed during the night. That was unhelpful but cruicial. My stay in hospital during SCT i slept for 3 and half months. It was hard for nurses to wake me. That was due to a complication. When i was more awake i did what you did and settled down after hand over and watched TV.

I think you prove a really good point when you mention your sleep routine changing during lock down and identifying it and making a change. I think sometimes especially as an SCT patient and recovery it can be easy to rest all the time. But if we are active in the smallest way in the day it can help aid tiredness and the need to sleep at night.

Thank you for your insight on this subject

All the best

Michelle

Online community champion

4

Morning all.

When I first went into hospital I found sleeping really difficult. I guess it was still the worry of my diagnosis initially as I was admitted to hospital within days of being diagnosed. The surroundings were unfamiliar too as I’ve never been in hospital overnight before, and was initially in a 4 bed bay until being transferred into a side room, then to the transplant unit only a couple of days after being admitted due to my immune system being so low.

During my pre-transplant treatment my stays in hospital alternated between the transplant unit and the haematolgy ward, dependant on whether there was a transplant room available. When I was on the ward sleeping was very difficult due to the constant noise going on, and other patients getting treatment at all hours. Time became irrelevant though so I just slept whenever I could, whether it was daytime or night. Things were better in the transplant unit as I was in my own room, with TV and Wifi, and had the freedom to move around the unit a little during my chemo. I tried to keep busy during the day, writing my blog, editing the book I’d written before my illness, reading magazines, and keeping in touch with people through phone or social media.

Immediately after my transplant I felt so poorly that I found sleeping was good way for the hours to pass. I spent a lot of time in bed anyway as I was very weak, so spent the days and nights either watching TV or sleeping. Being confined to my room there really wasn’t much else I could do anyway.

I found sleeping a real struggle when I came out of hospital following my transplant, not least because of the high dose steroids I was on when my GvHD kicked in. But I also found my own bed a strange place to be. I found the bedroom really dark at night, possibly because I was used to sleeping in a ward where there was always some form of light switched on. My wife had also adjusted to not having me in bed at the side of her and had taken to sleeping sprawled out across the bed, (and had also developed a loud snore!), so it was strange from that perspective too.

I found myself going to bed at a normal time but not being able to sleep, tossing and turning, until eventually through fear of disturbing my wife I’d get up and go downstairs to watch TV. Often I’d nod off on the sofa and wake up when my wife got up in the morning.

When my GvHD started I found sleeping even more difficult. The GvHD affected my skin which was incessantly itchy. My bedtime routine became a long soak (for a couple of hours) in a hot bath with E45 bath oil. This moisturised my skin and cut down the itching which helped me relax and go to sleep, but the maximum dose of prednisolone that I was on didn’t help again so I still found difficulty sleeping.

To me it seemed like I was getting next to no sleep, but the sleep tracker on my fitbit actually told me different and I was at least getting a few hours of sleep each night.

I suppose the advantage I had was that during the day I was able to snooze throughout the day as my boys were at school and my wife at work, so one way or another I got some sleep.

Things did improve as I adjusted to life out of hospital and back at home. My GvHD took a long time to conquer through ECP so I was on steroids a long time, though the dose gradually reduced.

These days I find my sleep is better. My wife tends to go to bed early, around 9pm, so I stay and watch TV for a while but usually end up falling asleep on the sofa by 10pm, waking up at 2am to go to the toilet and then to bed. Probably not conventional but it works for me.

This week I’ve returned to work in my office so I’m up at 6am each morning and I’m therefore trying to get back to some structure as far as going to bed is concerned, with a target to be in bed by 11pm. Time will tell if this works and how I feel at the end of the week.

Cheers,

Steve