post surgery recovery

[Rosegarden100]

I had lung surgery five weeks ago, lower left hand lobe

The tumour was removed completely and the test results came back that it hasn’t spread to the lymph nodes which is fantastic news

The problem I’m having is, I am still in excruciating pain in the area where the chest drain was , at the hospital they said I should be able to drive after four weeks, but that would be impossible because the amount of pain I’m in is this normal after five weeks?

My breathing is good but because of the excessive pain, I’m not moving about very well. Any slight movement really hurts. .

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Rosegarden100

Welcome to the forum, and sorry to hear you have had surgery for lung cancer. It is not unusual to have some discomfort for a few weeks after surgery, however as you are having ongoing severe pain, we would advise that you have this reassessed. It may be that your pain killers need adjusting or changed.

If you have any redness, swelling , or leakage at the chest drain site, or if you have a temperature do let the doctors know in case of infection.

There can be nerve pain from surgery and there can be more targeted pain killers to ease this, you may wish to consider discussing with your lung cancer nurse specialist or GP.

This link will take you to our lung surgery booklet, where it contains timelines to recovery: roycastle.org/app/uploads/2...

Everyone is different in their pain levels and recovery. If you would like to discuss anything you can call the ask the nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

We have online support groups if you are interested in these and can register through this link: roycastle.org/help-and-supp...

Hope you feel better soon.

The Roy Castle Support Team

[Justbreathe55]

Good morning I had the same as you 8 weeks ago this Thursday and unfortunately my drain site is still sore. Mine stayed in longer than normal and then the wound didn't heal so I did expect it to last a bit longer. I'm on a fb forum and there's lots of ppl whos pain lasts alot longer than predicted. Hospital advised me to carry on with the gabapentin. If the wound is red or weeping as suggested then seek advise from your lung team. I hope it eases soon it's so frustrating isn't it? I'm just starting to feel myself again and now I'm starting chemo 😢x

[Rosegarden100 in reply to Justbreathe55]

Good morning thank you for your reply

I must say, it’s quite reassuring to know that it’s not just me who is having this longer than expected recovery

I’m so sorry you’re having to go through chemo the test that they did after mycame back as clear, and it hadn’t spread which was a huge relief

What’s the name of the forum on Facebook Also, if you want to add me on Facebook as a friend I’m Rachel Mulcahy

Xxx

[Justbreathe55 in reply to Rosegarden100]

Mine was all clear too but the tumour had grown outside their safe limits so my oncologist recommended I have mop up chemo. I'm also egfr positive so it's recommended to have targeted therapy after. I will send you the link of the fb page x

[JanetteR57]

Sorry to hear you're still in pain after your lung surgery. did you have open surgery (thoracotomy) or keyhole (VATS)? I found the removal of the drain more painful than the main wound after my thoracotomy in Dec 2010 and my main wound started to reopen at its base so had to have it packed by practice nurse and go back on painkillers that I'd stopped (fearing addiction). She explained the optimum pain management method on painkillers as I'd been unable to have morphine due to a nasty reaction so had a combination of long lasting painkillers and short term/action killers - she said pain comes in waves and the combination of both (from different 'families') manages the pain at a steady state rather than waiting for it to peak then fall after medication. Talk to your nurse or consultant or pharmacist how this might be better managed.

It is important to start being active as not being so will prevent the remaining half of the lung from redeveloping fully. Mine was the upper left lobe that was removed and like you, the tumour (7cm) fully removed. I walked a little every day - around the house to start with, then to the local postbox to post letters/thank you cards to those who'd sent 'get well' wishes - making a point of a separate trip for each one to improve my stamina/breathing. My surgeon said that recovery was up to me that if I sat/lay around, recovery would be slower and not as good as keeping active which would re inflate the lung and develop it, although not to fill the space entirely, it would enlarge like a balloon. I went onto swim much further than I ever had with 2 full lungs and I was already a regular distance swimmer. Many patients give up on moving about after treatment not appreciating that there will be discomfort/pain and breathlessness on exertion but it's important to build up stamina and endurance.

hope you get some relief soon to enable you to start being more active which can help you physically and mentally. good luck.

[Rosegarden100]

thank you for your message. It is most enlightening . Much appreciated. X

[Oldseacook]

Hi Rosegarden100,

I’m sorry to read you are still experiencing so much pain from the drain site.

I had an upper left lobectomy at the end of May which went well and the cancer was totally removed hopefully it will be only 6 monthly checks from now on.

The pain from drain removal was horrendous, I never knew pain that bad before.

I was still experiencing horrible pain well into July around the main wound and drain site, they started weeping pus leading to a course of antibiotics which I did not react well to.

By the end of July the pain began to recede. I walked a little everyday gradually increasing the distance, making sure there were resting points along the route.

After 3 months I started a weekly seated exercise class at Maggies In Kirkcaldy I am now doing an Active move class through Maggies at my local sports centre.

With underlying copd and pulmonary fibrosis my recovery is going to be longer. I still struggle with shortness of breath but with the exercises I found the pain going away.

I am on gabapentin daily and dyhyracodeine as required.

I hope you improve as the weeks pass. Don’t be afraid to speak up to your medical team.

[Rosegarden100 in reply to Oldseacook]

Thank you so much for your response. It’s quite reassuring here from others and knowing that it’s not just me that’s been through this terrible situation. I felt that I was doing something wrong, but reading what others have said, I seem to be doing everything right but it’s a slow process.

Rachel

[Oldseacook in reply to Rosegarden100]

Hi Rachel,

At times I felt the same, I must be doing something wrong.

Having always been active it is very frustrating adjusting to the new reality. Trying to persuade the brain you’re 64 not 18 is possibly the biggest challenge at the moment.

Mark