Dad not sleeping after Lobectomy - The Roy Castle Lu...

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Dad not sleeping after Lobectomy

Concerned2021 profile image
29 Replies

Hello all

My dad had a Lobectomy on Aug 24th (right upper lobe ) he has pain more so at night ( has morphine and is dosing up etc ) has a V pillow to help . Is this common as the lack of sleep doesn’t help on top of having the surgery ? I believe from what I’ve read within the forums this can occur ? Just don’t like the thought of him not getting the rest he needs

Thanks xx

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Concerned2021
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29 Replies
Hopeforthebest profile image
Hopeforthebest

Hi sorry to hear about your dad’s pain. I had left lower lobectomy (5 years ago!) and . found sleeping in a bed impossible for 6-. Weeks or so. The first month particularly so as when I naturally moved in my sleep the mattress “moved” too obviously and caused pain which immediately woke me up if that makes sense at all .i found sleeping on a firm sofa downstairs helped , propped up with a bed slope (argos £10 ) plus an arrangement of pillows/cushions (acceptable arrangement found by trial and error). Also, a sleeping tablet (zoplicone 3.75). On top of that - oxycodone . my oxycodone routine was adjusted so that i took it nearer bedtime . I think I was lucky in that my surgeon believed that the key was strong pain relief and kept adjusting it it until it was correct. A friend coincidentally also had a lobectomy last year and hired a hospital bed (which adjusts ) for a month. The biggest help was the bed slope to be honest - cheap and effective x

Concerned2021 profile image
Concerned2021 in reply to Hopeforthebest

Thanks for your reply . It’s good to know it’s normal albeit not nice . I’m wondering whether a sleeping pill may help . It’s very early days though as will be only 2 weeks this Wednesday since he’s had it done . I bought him a V pillow but now wondering as per another reply I’ve had whether to get him a full body one or a wedge one so it has the slope ?

Xx

Hopeforthebest profile image
Hopeforthebest in reply to Concerned2021

The argos metal bed slope is excellent. Come to think of it I had to (sadly) have a second operation a year later (VATS - the first one was open tborocotomy) and it was this second time that I used the slope as the “prop” for my pillows. Wish I’d had it first time round. The second op by the way found nothing at all wrong! Good luck and give it time. It does improve x

Eglingham profile image
Eglingham

Hi, this is normal it takes some time to find comfort, was the surgery keyhole or open? V pillow is good but I found a full body pillow was just what the doctor ordered. Hope your dad gets some rest soon. X

Concerned2021 profile image
Concerned2021 in reply to Eglingham

Thanks for your reply . It was keyhole . The pain is all around the right side . So maybe I need to bug him a full body pillow then ? He also went for a walk yesterday but he definitely over did it as was looking pale etc . It was also a hot day yesterday. We have nagged him to take it more easy . It’s not even 2 weeks since the op and it will take time to recover as he is now missing part of his lung xx

Eglingham profile image
Eglingham in reply to Concerned2021

Yes he needs to take it slow, I just did little walks around the garden to build up then bought a Cross trainer which was great. It is a major surgery and takes a lot of recovery internally, if you over do things your delaying the recovery, yes you need to build the lung but gradually. Heat also takes it's toll on you. A body pillow is perfect for him to find a comfort spot. Good luck and hope he recovers soon. X

Concerned2021 profile image
Concerned2021 in reply to Eglingham

Yes I think as keyhole people assume will be all plain sailing and no pain, but it’s still major surgery and will take a while to get strength back . Hope you continue to do well also xx

simlut profile image
simlut

The Queen Rose pregnancy pillow is amazing. I have Spina Bifida and since my last surgery to fuse my spine 2 years ago, I’ve slept cocooned in mine and it takes all the pressure off my body.You can put a regular pillow under the top of it and it raises your head too.

I hope your dad can find something to help him get comfortable enough to sleep xxx

Concerned2021 profile image
Concerned2021 in reply to simlut

Thanks for your reply , I have just googled the pillow and it looks so comfy ! A worthwhile investment xx

simlut profile image
simlut in reply to Concerned2021

The good thing is you can take it anywhere with you, so you can use it on the sofa too.I even vacuum bag mine and take it abroad with me.

You can change it’s position easily to get you comfortable and even hug it to take the pressure off you if the pains particularly high at any time.

This is how I use it on the sofa, fold it round itself then sit back into it and it is so comfortable xxx

Full body pillow on sofa
Concerned2021 profile image
Concerned2021 in reply to simlut

You know looking at that I wouldn’t mind one for myself either ! Looks very comfortable xx

simlut profile image
simlut in reply to Concerned2021

They are amazing.Wowcher have some on offer at the moment too!

Body pillow
Concerned2021 profile image
Concerned2021 in reply to simlut

Fab, thanks ! Xx

Denzie profile image
Denzie

After lung surgery many find it more restful to sleep in a reclining chair with pillows tucked around their ribs to support them. Also a small pillow available to hug if he feels a sneeze or cough coming on.

A wedge pillow is a good second choice (as the OP mentioned) with an arrangement of pillows for support.

Concerned2021 profile image
Concerned2021 in reply to Denzie

Thanks so much for your advice. Time for pillowShopping I think ! Xx

JanetteR57 profile image
JanetteR57

Sorry to hear of your dad's pain after his op. I had open surgery (thoracotomy) for upper left lung in Dec 2010. I found sitting up propped in bed with pillows was the best way for me to drift off... he will sleep/rest when needed. Pain relief should help - I'd not encourage sleeping tablets but know where you're coming from - also he needs to keep active - moving around, walking a little around the home/garden/street are encouraged - it's not a question of overdoing it but the lung needs to redevelop its capacity and won't achieve that sitting/lying around all the time. although he's had part of his lung removed - the right lung has 3 lobes, the left 2 - that's a third of his right lung and some people have a whole lung removed (it was common treatment for TB) and go onto live a full life... I swam before my op for years but went onto swim much much further after my op but recovery takes time. This booklet may help you about his situation now and expected average milestones - it was put together by my local specialist thoracic surgical centre then updated by Roy Castle lung cancer foundation and is regularly updated including with hints and tips from its patient panel. it's important to support him but moving about will also help him tire physically rather than medicating to sleep.... hope this helps you both. thinking of you both... roycastle.org/app/uploads/2...

Concerned2021 profile image
Concerned2021 in reply to JanetteR57

Thanks again Janette and for the literature . He was given such little information from the hospital upon discharge. He has been walking around the house since the operation but yesterday was the first time he has left the house for a walk to the shops which is a good 10min walk . So when he got to his destination he didn’t feel the greatest . But it was also 26c in Suffolk yesterday as well . Think as well as that he’s only 6 months past having a double heart bypass as well xx

JanetteR57 profile image
JanetteR57

wow - he's certainly had a lot to content with... my first walk was to the postbox which now takes me 6 minutes there and back but I remember my first walk to post a letter to thank somebody for get well card took around 20 minutes each way and making several stops - that was a few days after surgery. I tried to do that little walk each day - deliberately making separate journeys when I had several letters then I built it up to a little walk up the street then ventured into the park at the back of our house that I'd never really visited but after a month or two was able to do several circuits of it... slowly and steadily. You're right that the heat and humidity also won't be helping him - encourage a little activity every day but doesn't need to be a marathon. I didn't restart my swimming until the march (stopped in Oct when I went to A&E and misdiagnosed as uncontrolled asthma) but restarted on 31/3 and was back to my 130 lengths by the end of June when I next saw the consultant - with the water supporting my weight it wasn't easy and the consultant said I should have returned sooner as the muscles/nerves/rib were cut in open surgery (hence why majority now keyhole in the UK) and trying to lift my arm for crawl was nigh on impossible for a few trips but little by little, increasing each visit was how I did it but went onto do much more than that.... I think the knack is regular activity rather than overdoing it then having to rest up due to doing too much - steady Eddie and all that.... good luck to you

Concerned2021 profile image
Concerned2021 in reply to JanetteR57

Thanks very much , you’re right he basically went from not leaving the house to that first big walk ! He underestimated how out of breath he would be . I will encourage him to do the shorter walks to start with maybe a couple of times a day ? Xx

JanetteR57 profile image
JanetteR57

sounds a good plan - there are also breathing exercises and other physical exercises to do on Roy Castle lung cancer foundation website as well as British Lung foundation....

Concerned2021 profile image
Concerned2021 in reply to JanetteR57

Thanks I will look into those as well , we can’t fault the surgeon in that we were lucky it was keyhole etc but like I said the discharge information was just non existent x

JanetteR57 profile image
JanetteR57

I had the same - keyhole didn't exist when I had mine done - left lung means half the lung is removed - no lung nurse - didn't know they existed until 3 years later - my surgeon was great but otherwise not - no surgical socks on discharge, hadn't been told not to shower every day so wound started reopening... etc etc.... that booklet didn't exist which is why I now try to help with patient literature/information to help others... but lived experience also shows that people recover at different rates as we're often at different levels of fitness/health to begin with.... take care.

Concerned2021 profile image
Concerned2021 in reply to JanetteR57

Thanks Janette you’ve been such a great help along with others on this forum xx

JanetteR57 profile image
JanetteR57

it's why we're here.... there will be ups and downs - in his recovery - so being prepared for that mentally is also a good idea - sometimes he'll just have to accept he needs to rest but others he may have more energy/spirit.... good luck to you both.

Concerned2021 profile image
Concerned2021 in reply to JanetteR57

I’ve seen him today and said maybe his first walk was a bit too adventurous so will still have walks but will start off gently xx

JanetteR57 profile image
JanetteR57

That sounds good - btw stairs/inclines can be tiring/a strain at the start so keeping walks on the level and building up is a good idea too then add in inclines when the body has adjusted a little.... little and often better than too much then slumping... encourage him that we all overdo it in that place where our head says we're ready but our body says otherwise.... all I know is that my surgeon told me it was important to keep active and moving to redevelop the remaining lungs and sitting/lying around would prevent that/slow recovery.

Concerned2021 profile image
Concerned2021

Well I told him and part nagged . He laughed and rolled his eyes at me ! But he’s a stubborn one ! I’ve passed on the advice from you all as well xx

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hello Concerned2021.

I am sorry to hear that your father is having trouble sleeping after his surgery, so many helpful replies about positioning and pain control, JanetteR57 has given you some very good advice on exercise and breathing techniques. Other things that also help is cutting down on caffeine which is a stimulant so avoiding tea, coffee and hot chocolate in the evenings, herbal teas such as chamomile can be relaxing, although not everyone likes these.

Before bed a warm bath or shower can help relax muscles and relive tension. A nice clean bedroom routine no computers, mobile phone etc which can stimulate your mind, read a book or try meditation techniques to help relax. Essential oils such as lavender, chamomile and frankincense can also promote relaxation and sleep.

Try to eat the evening meal at least 2 hours before bedtime and avoid spicy or fatty foods which can cause heartburn and indigestion when lying down, reducing fluid intake in the evening can also help with night time toilet trips.

If there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Concerned2021 profile image
Concerned2021 in reply to RoyCastleHelpline

Thankyou yet again for your excellent advice and help as always xx

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