Any tips for recovery please

[xinte60]

Had 2/3 of my right lung removed beginning of January for yet unknown lung cancer (Will see consultant for pathology this week) I coped alone with recovery but was do able. 2 Weeks ago after visiting A&E and a CT scan, I was found to have Pulmonary Embolisms in both lungs and Pneumonia in surgery lung, It has now been 2 weeks after this diagnosis and I am so very fatigued and unable to function normally, I understand that my body has been through a lot but I still cannot stay awake for more than 2 hours at a time, just sleeping away most of my life, I'm not in pain any longer so not taking sedating pain killers, I eat okay and keep hydrated but do not have any energy whatsoever. Has anyone who has been through the recovery process found any tips or advice that have helped you regain your energy and move on with life? Any supplements etc? Although I know that pneumonia can be a complication of lung surgery, I can pinpoint the moment my little grand daughter coughed in my face and I got some cold bug which I think resulted in the pneumonia. This has left me with an irrational terror of stepping outside my home and coming into contact with bacteria and virus's as I feel that now I cannot fight them, I even make excuses not to see my grand daughter, which I know is terrible, but all I replay in my mind is being so very ill, unable to breath in A&E, thank you for reading x

[jillygirl]

Hi there sorry to hear your diagnosis after your surgery

Have they given you any medication? as I would have though the embolisms would need immediate attention and probably antibiotics or steroids for the pneumonia, I am no expert but I would have a word with your own GP and get advice, otherwise sit tight and see what the consultant says

You could always call the helpline on this forum. I have met 2 of the nurses who are lovely and may be could advise you. healthunlocked.com/user/Roy...

I wish you well and hope all gets sorted 😊x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear xinte60

So sorry to hear you have had such a tough time from your surgery. I am assuming they kept you in with the pulmonary embolisms and to have pneumonia on top of it all.

It is no wonder you are extremely fatigued and have no energy, however, it may be worth contacting your GP and be reassessed. The fatigue can certainly be normal, not just post surgery but everything else that has happened to compromise your recovery.

You may wish to consider contacting the oncology team to explain how you are feeling, you could either contact the lung cancer nurse specialist or the oncologist secretary via the switchboard, and hopefully you will see them this week face to face for the results and for them to assess you.

If you develop any sudden acute breathlessness, cough, palpitations, light headiness with sweating, do call an ambulance.

Your anxiety is understandable and perhaps your family can consider wearing a mask whilst they are there, or discuss with your grand daughters parents, am sure they will understand and will want to make any visit risk free, and you could see your grand daughter when you start to feel better.

It sounds like the experience of being unable to breathe is usually indicative of the pulmonary embolism which can make you feel quite acutely ill, whereas the pneumonia can make you more short of breath.

This has been quite a set back for you and things can improve as time goes on, once you speak to the oncology team you may start to feel a little better.

This link will take you to our lung surgery booklet, and for some people it can take up to 6 months to feel more like themselves again. You have had the unfortunate complications of both the embolism and the pneumonia which in itself can leave you feeling exhausted. There are timelines and tips on recovery in the booklet: roycastle.org/app/uploads/2...

It is encouraging that you are able to eat and keep hydrated and it is listening to your body, when it needs to rest, allow it to and recovery will come.

You are welcome to contact ask us on the nurse on their free phone helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

Hope you start to feel better soon.

Kind regards

The Roy Castle Support Team

[Anotherbadname]

sorry to hear about your troubles. Ive had a double pulmonary embolism when i was 62. It knocks the legs from under you for a few months. I am a runner and I found once I felt fit enough exercise helps to clear the embolism away. Since I've had a lower left lobe removed 3 years ago. That has made it a lot harder exercising but my oncologist said the exercise helps to build up your remaining lung. I find it a lot harder since my lung removal but the main thing is not to just sit back and do nothing. You will need alot of rest to recover but soon as your body feels fit enough it's important to push yourself to exercise. It will also help your immune system as well. Take it nice and steady and listen to your body. Small steps often will get you there quicker. I think it is very important to eat a healthy diet. I don't bother with supplements lots of fruit and veg. Porridg every morning with a handful of nuts blueberries, strawberries, cherries with a tablespoon of Kefir yogurt on top. Good luck and I hope you feel better soon. Tom 71❤️

[JanetteR57]

Gosh you've been through it..... surgery on its own can take weeks/months to recover fully from. pneumonia and embolisms take a long time to recover too. Be kind to yourself - our minds often want us up and about and it's important after lung surgery to be as active as you can - not running marathons of course but gentle walking around the house, garden, area and getting up in the day. Lying around doesn't help clear any phlegm/mucous in the lungs or redevelop them properly.

It's luck of the draw about picking up germs/infections/viruses but one thing I've noticed (my open lobectomy was in Dec 2010) is that the more time I spend working from homeand not exposing myself to people/society, the more frequently I go down with something when I do - had a run of chest infections since December 2022 and ending up in hospital for almost 3 weeks last autumn. I've started to wear a mask when I'm in crowded places and on public transport. It is important to get out and not become a recluse as our minds can then dwell on things that otherwise might be distracted and kept busy.

Children including grandchildren are exposed to many germs at school or play but it's part of our immune system response to rebuild but I totally get what you mean as when swimming I avoid the sessions when kids may be there (like this week's half term!) It's not irrational to want to protect your health after such hard knocks but little by little, as we did after the pandemic, it's important to step back out into the world. Counselling may help too.

Regarding supplements etc, there's little evidence currently but you may find a couple of books helpful - both suggest a more holistic approach to life - getting enough sleep, keeping active, having a balanced diet, having enough social contact with friends/loved ones, keeping mind active etc. Both helped me and I often recommend them - 'cancer is a word not a sentence' by Dr Rob Buckman and 'anti-cancer a new way of life' by Dr Servan Schreiber. Although over 10 years old, both contain highly relevant information written in terminology that's understandable despite both authors being doctors.

Hopefully once you get the results from your consultant about the pathology, things may become clearer about any follow on treatment and how you can make the most of your recovery. I walked locally and increased amounts as my stamina improved - it is natural to be breathless on exertion especially after pneumonia and lung surgery but just as important to work through that, slow down, breathe more deeply - use inhalers if you have them as the benefit of keeping active is so good. Even healthy people get breathless when exerting themselves, it's a natural reaction but for many with respiratory issues, they give up at this point which can lead to weight gain, making it harder to exercise/move about in future and setting up a vicious cycle that can make us feel down. Ask your consultant whether there is any pulmonary rehabilitation classes or service that you could be referred to as that may help your recovery or alternatively breathing exercises to improve your overall lung function. Good luck.

[ConnectRoyCastle Administrator Roy Castle]

Hi xinte60,

I am sorry that you are having such a horrid time of it, some great comments below. I'd just like to say that we have a surgery support group which is starting on Tuesday the 19th of march and will take place online over Zoom. It may be a good way to meet and chat to others.. Contact me if you like the sound of this or if you would just like to have a chat - I really hope things improve for you.

Best wishes,

Ellen

[e-mail]

07950 857 819