Two and a half weeks post upper right... - The Roy Castle Lu...

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Two and a half weeks post upper right lobectomy.

Kanafapot profile image

Hello all,

I’m finding lack of pain control in the middle of the night is preventing me from getting a full night’s sleep. I’m fine during the day although the stiffness in my back and side is always present. I’m gradually increasing the amount of walking and activity at home. I take rests when I need them, sometimes having a short sleep after lunchtime. I’m following the medication directions I’ve been given although my GP suggested I should try to reduce the amount of morphine gradually. The morphine leaves a rather unpleasant taste in my mouth and I feel nauseous so I’m rather happy to do this.

I’m using a triangular pillow wedge to keep me more upright at night but I’m generally waking about 2.00am and sleeping or dozing until 5.00am. I generally give up then and make tea and breakfast about 6.00am. I’m beginning to feel very weary and I’ve been wondering if there are any different pain killers I might take in the depths of the night so that I can get a decent sleep.

I’m pretty sure I should be asking advice from my GP but it’s just such a hassle trying to speak to someone when you’re not feeling up to much.

Any comments very welcome please.

Love xx

49 Replies

Hello Kanafapot, I’m now 5 weeks post upper left lobectomy and lower wedge resection. Iam still being told it’s early days and be kind to yourself. I am back to doing most things, walking 6000 steps a day, a challenge with stairs as we live in a bungalow so have a exercise step, which takes me back to when I did step classes and actually I start back to work part time, today pending chemo, I manage my pain with paracetamol and codiene, gave up on the morphine very early as It’s short acting and gave me a headache. Now only taking paracetamol 500mgs in the morning with codiene and paracetamol at bedtime. Due to neuropathic pain in the back and shoulder caused by the tumours I was on gabapetin I have now reduced this down to 100mgs three times a day, this does help a lot. I do manage to sleep till about 6.30, on my affected side propted up. I actually think I felt worst at about 3 weeks, probably because of trying to do too much. I did feel like a giant cloud lifted post surgery mentally which again helped. So be kind to yourself, rest and chat to your GP re different options. One thing which has been really amazing for me I haven’t seen my GP for 2.5 years, I was very wheezy last week and my CNS asked me to get the GP to check it out. Well I ended up in A&E for 3 hours, referred by 5he GP to ENT, no comment.

Take Care

BW

Hopexx

Kanafapot profile image
Kanafapot in reply to Hope2782

Thank you for that. I’m getting bloods done today and will make an appointment to talk to my GP about pain meds. I’ve been having mild headaches as well so that seems another reason to get off the morphine. I may invest in a step counter but the step idea seems very good. I’m in a ground floor flat so that would add a new dimension to the exercise regime.

Good luck with your treatments xx

Dear Kanafapot,

I am sorry to hear that you have not been sleeping well, this will be exhausting for you, Two and a half weeks after surgery your body will still be healing and during the night lying in the same position you may get stiff and the pain increases, this in turn can make it difficult to sleep. I would defiantly get back in touch with your Gp to review your current analgesia, there may be a different type of painkiller that will help.

There are some easy things which can help, most of them I am sure you are doing, cutting down on caffeine, carbonated soda, tea, coffee and surprisingly Hot Chocolate these all contain varying amounts of caffeine which is a stimulant and can keep you awake. Avoid watching TV or looking at computer screen, trying to wind down in the evenings, taking a warm bath to relax and reading a book. Essential oils such a lavender and chamomile can also be relaxing and aid sleep. I have added links from MacMillan and NHS both these pages have great advice on dealing with insomnia

macmillan.org.uk/cancer-inf...

nhs.uk/conditions/insomnia/

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

Thank you. I’ve now managed to make an appointment with one of the GPs to talk about pain management on Thursday afternoon. As I was on 1.5 paracetamol 4 times a day, I’ve managed to save 0.5 x 4 paracetamol over today thus saving 2 paracetamol for the middle of the night. I’ll just have to see if this helps. Xx

Hi Kanafapot

I can’t comment as I had very a different treatment plan but by the sounds of it your doing amazing!!! Just be kind to yourself and give yourself lots of time.

Take care xx

Kanafapot profile image
Kanafapot in reply to Locket39

Thank you Locket. I managed to walk to and from the doctor’s today. It’s only ten minutes each way but feel like progress. The nurse removed my stitches and did an EEG. She said it looked normal then changed it to some other wording. She also took some blood to test kidney function. Every step is a step forward. I’m so looking forward to feeling a bit more normal and enjoying some food, rather than having to force it down.

I’m finally relaxing in bed now. It’s a bit of a relief tbh.

I hope your treatment is going to plan xxx

Locket39 profile image
Locket39 in reply to Kanafapot

Aww I am so happy for you!! You should be super proud of yourself with everything you have been through!!

I had one goal and that was to do the race for life this year!! I completed it on Sunday and raised 1500 for cancer research. I want to help find a cure for us all…..

Hope you continue to get better xxx

Kanafapot profile image
Kanafapot in reply to Locket39

You’ve done so well. Many congratulations xxx

sassassas profile image
sassassas in reply to Locket39

How brilliant Locket39. You must have felt amazing 😍

Locket39 profile image
Locket39 in reply to sassassas

It Was amazing! Xx

Tike3 profile image
Tike3 in reply to Locket39

Well done Locket, amazing. 🏃‍♂️

Locket39 profile image
Locket39 in reply to Tike3

Awww bless you thanks xx

Hi Kanafapot, I'm sorry I have no experience to share but I can see lots of others have shared their stories. I just wanted to say how inspirational you and others going through this are. I hope you feel stronger very soon 💜

Happy to hear you are starting to feel better. My husband had a left lower lobectomy done and started to feel better once the stitches were removed. He put vitamin E oil on the incisions and they healed up quite nicely and quickly. For pain management and sleep he started taking CBD oil during the day a THC oil at night to help with sleeping. He continued both through chemo as well. It really helped him with his mood as well.

Where did he get the CBD and THC, please? This could be worth a try and thank you for the information xx

Hi Kanafapot, he got a prescription from a found a former oncologist who now prescribes medical cannabis here in Edmonton, Alberta Canada. It can also be ordered online from a company called Legacy 420. He has been getting the CBD oil from them and the THC from Cannabis Shopper's Drugmart. Not sure if this helps, hope it does.

Currently medical cannabis here is severely restricted although CBD oil of unknown efficacy is available at health food shops. THC is not allowed here in the UK. I’m glad your husband has found something that works for him. Xx

Sorry to hear that it is restricted. Are you able to try Melatonin? It's natural and may help you with sleeping at night.

I may ask my daughter about it. She’s very much into alternative medicines and has taken it herself. Thank you x

HelloIt interesting to read your post and the pain your going through, it's excruciating at times isn't it, mines not due to the lung itself but muscles around the vertebrae where there's a small area of the cancer

I try my best like you to increase walking but its hard, especially in the middle of the night!

I've just took delivery of a triangular pillow and hoping to get some relief. My consultant has put me on Pregabalin Zentiva 25mg for the pain, nothing like not sleeping.

I know I take more morphine than I should, and my consultant said I could have a morphine overdose at this rate I'm hoping Pregabalin Zentiva will help tonight, I'll let you know

Sending love and best wishes

Pam

Kanafapot profile image
Kanafapot in reply to Tike3

Thanks Pam. The daytime isn’t too bad but it’s night time when sleep seems far away at 2.00 am and the discomfort is large. I’ve been napping after lunch to make up for the lack of nighttime sleep. I’ve rearranged my medication so now can take 2 paracetamol in the middle of the night. Still, I’m talking to one of the GPs tomorrow to see if he can suggest some sort of alternative or additional help. It’s all making me a bit grumpy right now. I hope your new medication helps and you’ll be able to cut down gradually on the morphine.Love xxx

Tike3 profile image
Tike3 in reply to Kanafapot

Hi Kanafapot

The nights are so long aren't they when your in so much discomfort. I'm sure your pain is much worse than mine. Like you say catching up in the day is the only thing you can do. That will make a difference changing your medication dose around.

My night wasn't too bad, the Pregabalin, took one just before bed and it made me quite sleepy. The triangular cushion was comfy too! I'm leaving the morphine alone, the doctor scared me!!

Let hope your GP has some ideas, and by the way your allowed to be grumpy!!

Take care

Pam

xx

Kanafapot profile image
Kanafapot in reply to Tike3

I’m glad about being grumpy! I’ve seriously not slept but maybe dozed since just after 1.30 am. I think I might just go to sleep shortly having had some food and the currently prescribed meds. I’ve given up the wedge pillow since last night and managed sleeping on my non operation side for a while with a pillow behind my back. I have some anti histamine prescribed by the hospital that says it will make you drowsy. If all else fails I may just take one in the middle of the night to see if it will put me back to sleep.

So glad your night wasn’t too bad and the new pillow and drugs seem to be helpful. Xxx

Tike3 profile image
Tike3 in reply to Kanafapot

We have to try everything don't we. Doctor came today prescribed me diazapam for muscle relaxant and liquid morphine, I've been told off for taking too much but still gave it me. I'll try again to sleep but the night are long and lonely.

Thinking of you

Pam

Kanafapot profile image
Kanafapot in reply to Tike3

The nights are the absolute worst. It gives imagination free reign and seems to encourage more pain. I suppose it’s because there are less distractions. It’s also so lonely. I’m sleeping on my own so I don’t disturb anyone if I can’t sleep. Anyway, I hope they manage to find the right mixture of pain relief for you. Love xxx

Tike3 profile image
Tike3 in reply to Kanafapot

Your awake early doors like me kanafapot, it's horrible isn't it. I also sleep on my own. There's just me and my husband both 66. I download relaxing music but I doesn't work because the pain distracts from it.I hope you have a peaceful night away from pain.

Sending love

Kanafapot profile image
Kanafapot in reply to Tike3

This morning I slept through until 4.45 and felt so much better. It’s amazing how much better you feel after a good sleep. Neither myself nor my husband are sleeping well but he’s been like it for years with a bad back. I don’t know how he manages to go on with the continual underlying ache.Any way, love xxx

Tike3 profile image
Tike3 in reply to Kanafapot

Bad back's are one of the worst and like you say go on for years. My brother in law used to sleep on a board an then he had a major op done, had to be put in an induced coma.I've resorted to a sleeping pill which helps but take it a late as I can. I sound like you've got medication under contro

Hope you sleep better, nite nite

Pam

Just an update. Talked to my GP. I’m now off the heart pills and I’m free to play with my dosages of morphine and paracetamol within the prescribed limits and to continue to reduce dosage as soon as possible.

Feeling happier now but nevertheless looking forward to my bed, a bit earlier than usual

Hi Kanafapot, I started to get pain in my back and shoulders and suffered many sleepless nights due to this . I spoke to my Oncologist who sent me for a MRI scan which discovered small mets on my spine. I was sent for Radiotherapy ( one treatment) to control the pain , it took about 4 weeks to work but I now only need pain control once or twice a day.

I was diagnosed stage 4 NSCC nearly 3 years ago and had 22 rounds of chemotherapy which was discontinued due to fatigue last October.

I am due a CT scan soon to see if my Lung Cancer is still stable .

Keep well and good luck for the future.😌

Kanafapot profile image
Kanafapot in reply to Davemack05

I’m glad you’re in less pain now. I’ve been told I may need mop up chemo but I won’t know for a bit. I’m concentrating on recuperating and just need some decent sleep. Well, if this doesn’t work I’ll be back on to the GP to help me out.As far as I know it’s just post operative pain and will improve over time. The sooner the better, I hope

Tike3 profile image
Tike3 in reply to Davemack05

Just read your post Davemack, very similar pain to mine, agony isn't it. I have small mets on some vertebrae. I'm hoping next week they will do something about them when I've finished chemo for NSCLC Stage 4 lung cancer.Keep well and best wishes

Pam

Davemack05 profile image
Davemack05 in reply to Tike3

Hi Pam , I had 22 rounds of chemo 18 of them were maintenance and not high doses. The real pain 9out 10 stuff started 3 months after chemo stopped,that is why I had the Radiotherapy last month which as I said has done it’s job,highest pain level now 3to 4 out of 10 . I try to keep busy around house and garden and have 6 grandkids 2 years up to 17 years old who keep me on my toes.I really believe in the one day at a time ideal and we are going on as many breaks as possible now that everything has opened up again.

Look after yourself and keep well .

Dave.

Tike3 profile image
Tike3 in reply to Davemack05

Hello Dave

Thank you for your reply. It's reassuring to me that your pain level decreased, nothing like pain to pull you down.

I've been in touch with my consultant and she says once chemotherapy is completed she will do radiotherapy on the vertebrae but I may find improvement after chemo also.

Six grandkids! You can't be idle then can you! And yes one day at a time.

Thanks for taking time to reply I appreciate it. This is a brilliant site isn't it.

Best wishes

Pam

Tike3 profile image
Tike3 in reply to Davemack05

Hi Dave again!

Can I ask why you had so much chemo, I only have 4 but only had two up to now because the immunotherapy I originally started on caused diverticulitis so they had to sort that out first. I'm having my remaining 2 starting next week. It just doesn't seem many I'm having but I'm sure they know what's what. Sometimes I get confused as to what they do. Last December I had 2 brain mets which they zapped with radiotherapy but my recent brain scan showed another has come on opposite side but they say they are leaving it because it is asymptomatic? As for radiotherapy on vertebrae is don't know.

Sorry to ramble on Dave

Keep well

Pam

Beatless profile image
Beatless in reply to Tike3

Tike3, butting in, how is the left leg? any sign of improvement, please reply on usual thread

John

Tike3 profile image
Tike3 in reply to Beatless

Hiya John How you doing

No improvement left leg. Originally told probably never be able to get full use, say its either due to brain mets which they did radiotherapy on in December and was successful or vertebrae which has compressed. I just would like something done about it, bad enough having lung cancer but not being to walk as well is unbearable. How are you, any improvement, think you were having something done. Let me know.

I'm now struggling with shoulder pain and tingling down left arm, Dr says it's muscle spasm coming from vertebrae that has cancer.

Please keep in touch

Pam

Davemack05 profile image
Davemack05 in reply to Tike3

HiPam , the largest of my 3 tumours was only 5 or 6 mm and it was found early due to a chest X-ray when I was diagnosed with Copd by a respiratory nurse who spotted a small shadow that everyone else had missed . After going through the 3 different scans within 6 weeks plus a biopsy on the primary tumour I went on to chemotherapy starting with 4 rounds of carmoplatnum and permotrexred . After 3 months I had a further CT scan and was told that the 2 tumours on my lung seemed to have pinked and shrunk slightly and the one on my pelvis looked like it was healing. I was advised by my Oncologist that the best long term treatment may be maintenance chemotherapy using permotrexted , the dose was relatively small and I had infusions every 3 weeks. The reason they stopped treatment was it was taking more and more out of me each time .

The last chemo I had was October and the first Radiotherapy was last month so that makes a total of 23 treatments and if I’m honest the Copd is more bother than the cancer.

Hope all that makes sense and I get regular spasms usually out of the blue or when I am relaxing or lying down.

Keep Well,

Dave🙂

Tike3 profile image
Tike3 in reply to Davemack05

Hiya Dave Thank you for your reply.

My tumour was 1.5cm and I'm on pemetrexed and carboplatin too. I start my last two on Thursday, I only had 4 in total but my last 2 were delayed due to previous Immunotherapy causing diverticulitis.

Did treatment take a lot out of you Dave like tiredness. You've had so much treatment, hard to imagine how you stayed positive.I don't know if or when I'll have radiotherapy but they surely will do something about the pain the vertebrae is causing.These spasms are unbearable, doctor gave me pregabalin, diazapam and Morphine, pregabalin only twice a day but I'm going to up it to 3 times.

Is you cancer under control Dave, that's what I wonder when they say your ok now. I hate this road we've been put on.

Thanks for sharing Dave it means such a lot.

Take care

Pam

Tike3 profile image
Tike3 in reply to Davemack05

Hi DaveJust wanted your advice.

We see consultant with view to completing last 2 chemo none done for 9 months

She said no chemo need CT scan to rule out compression of spine due to vertebrae, scan was scan. When I said can I continue with chemo she said no your too weak and not fit enough

I asked her how things had progressed with all results back . She said tumour slightly bigger,nodes or something round liver affected and of course brain met which she didn't even mention.

I feel that going this length of time without chemo won't have any effect and its the end of the road. Considering a second opinion but Christie's are supposed to be one of the best

How are you Dave how your walking as well.

Best wishes Dave and thanks for listening.

Pam

Tikki3 Sorry no improvement for you, must keep trying/cheerful.

My Oncologist said on Wednesday that he did not think brain radiotherapy would help walking, which is non existent. But we will see, said It would do a holding job, just got to hope.

I will keep positive & hope to keep in contact

Regards

John C

Tike3 profile image
Tike3 in reply to Beatless

Hello John It's so hard to stay positive isn't it, you'd think something could be done. We'll see what radiotherapy does but I can't have it until my chemos finished. Perhaps the chemo may help.

Stay strong

Pam

Understand your concerns but what you're describing post surgery is to be expected - did you have keyhole or open surgery? Either way the body has to heal inside and out and our minds have to catch up with the physical recovery. If you're trying to lie on the side of your surgery it will be painful for some time - I found sleeping propped up with pillows behind me (I'm a side sleeper usually) helped me - walking a little more each day, trying not to nap in the day time but to have rest periods of not doing much at times but did crosswords/read to keep mind active (stop dozing off) so I was tired when I went to bed. I also struggled by trying to come off pain meds too soon and a month was pleased I'd dropped the dosage of the diclofenac and paracetamol but then when my wound started reopening I was sent to the practice nurse to have it packed and she specialised in pain management. She explained why we need 2 different types of painkillers - one to stay in the bloodstream and one a more rapid 'hit' like paracetamol. I usually don't take headache tablets but after her advice I was a little more philosophical as the painkillers can reduce the inflammation going inside our bodies as all the parts that were disturbed including muscle, nerves etc knit back together. Are you on any steroids or inhalers for your wheezing as these can often interfere with sleep? spray lavender on your pillow, drink soothing drinks (not caffeine) e.g. milk, camomile tea etc at night.... and if all else fails, get up and do something else - sleep will eventually come. I managed getting through some difficult times like that by knowing it would pass eventually. I've just read a really good book called 'doctors get cancer too' by Dr Philippa Kaye who explains how even as a GP/TV medic she had no real idea what patients went through mentally until she had her own bowel cancer diagnosis and uncertainty awaiting scans, results, whether or not to have adjuvent chemo, how low the odds were for all that effort and how we can feel much stronger at times than our bodies do.... good luck with your recovery - sounds as if you're doing all the right things... just keep on keeping on, it will get easier. lack of sleep can make us miserable at the best of times so be kind to yourself. ..

Kanafapot profile image
Kanafapot in reply to JanetteR57

Hi JanetteI had VATS surgery. I’m surprised now at how far I’ve progressed in 9 days. I’m sleeping so much better now. I’m not sleeping propped up with the triangular cushion anymore. Instead I have a soft pillow under my right side (the site of the operation) that allows me to sleep on my left hand side whilst stopping me from rolling onto my back. For the last 3 nights I’ve slept almost through the night. This has been such a relief. If I can’t sleep I listen to an audio book or running water with birds. It quite often lulls me off either to sleep more or catnap.

I walked to the shop for the first time today and did some trolley shopping. My lovely husband paid for it and packed it whilst I went to sit in the car to wait. He also unpacked it and put it away. I did have a nap this afternoon as I felt tired but went for another short walk later on.

I went to see my GP yesterday as I thought I might have a chest infection. It’s very difficult to know when there’s no normal yet. Anyway, he was very reassuring, my chest is fine, the wounds are healing well and my heart is back to normal so no more heart pills. I had AF whilst in hospital due to a chest infection which they resolved before I was discharged.

I’ve been avoiding caffeine at night for many years but thank you for the suggestions. Any new ideas are always welcome.

I appreciate your support and just looking back those 9 days show how much life has improved already. Daily it’s slow progress but over time it’s heartening.

Anyway, thank you again xxx

JanetteR57 profile image
JanetteR57 in reply to Kanafapot

Sounds to me as if you're making good progress.. and as you say (and Philippa in her book too and in my memory) it can often look quite bleak but a few days later, things can improve significantly as you've already found. It's good your GP is on board - and keeping an eye out for chest infection is important - as quick intervention with treatment can make such a difference to that. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me as did 'anticancer a new way of life' by Dr Servan Schreiber where he approaches the whole of his life with a new 'holistic' manner - work-life balance, better diet, exercise, mental rest as well as stimulation after a brain tumour.... so much to learn I think from how others have managed.... I'm unsure if you downloaded the booklet on roy Castle website which my local tertiary centre (where my surgeon worked) helped devise this some years ago and it was updated during the pandemic but the suggested milestones may help.... moving about, keeping active can all help with the healing.... I'm certain the stretching and swimming (which I'd done since 1990 but went onto swim much further after my surgery despite the 6 month break for A&E admission/surgery/recovery) helped as during the pandemic sitting hunched over the computer has made me much more conscious of posture and how it affects our diaphragm and lungs.... good luck with your continued recovery.... roycastle.org/app/uploads/2...

Kanafapot profile image
Kanafapot in reply to JanetteR57

Hi, yes my hospital issued the booklet and I check with it to compare progress. It’s been very useful as have my GPs. My surgeon said no gardening at present and swimming is not my thing so walking and building up my stamina is the place for me. I’m gentle with myself by doing a bit then resting for a bit etc. My body right now is the great dictator and let’s me know when it’s time to rest.Slept well again which is so helpful x

JanetteR57 profile image
JanetteR57 in reply to Kanafapot

all sounds good to me - keep on keeping on.... x

Hello KanafapotHope things progressing

Just wanted to keep you updates on my back.

Went for blood's and see consultant yesterday hoping to have last two chemos but first they wanted to do a CT scan to rule out compression of spine fro vertebrae. They did that and it came back clear just wear a tear they said. The lung cancer nurse and consultant came in nurse did most of the talking, when I said can I start my chemo as planned the day after she said no it could kill you your to unwell and its spread to some node at side of liver. I feel like they've wrote me off. Any help appreciated

Thanks Pam

Oh Tike, they sound so business like and unsympathetic. IMO this is not helpful for you right now. Surely there must be some plan for your future to help you? Do you have a dedicated nurse? It seems you need someone to talk about all this. I’m sorry but I just don’t have any experience other than being able to listen. Maybe chat to Roy Castle or MacMillan nurse who could help you.

I can only send you love and wish you some resolution. With love 💐💐

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