Hi all, I had a right lower open surgery lobectomy last July and fortunately advised they removed the mass completely and no further treatment required. It was found to be non-small-cell lung cancer – squamous cell carcinoma. I have since had several scans due to chest infections and a cough which does not go completely, all is clear and my 6 month check was all ok.
I wanted to know if anyone else has had these post things such as a cough, chest infections and some tightness along the lobectomy scar? I also am unable to sleep on my right side anymore!
I also wondered if anyone else is going through mixed emotions still and not know if you are dealing with them or not? Don’t get me wrong, I am so grateful to be alive and this caught so early, but just wondered if anyone else had these issues? I just can’t believe it happened.
I’m dealing with the coughing by taking antihistamine tablets daily as I did take the codeine cough linctus mentioned in other posts, but stopped as I was scared of getting addicted to it. The meds have helped me probably about 65% but I still have the odd coughing fit a couple of times a week. Anyone have any tips? I know I have to live with the chest infections as I am obviously prone to this now and can cope with the antibiotics, but it’s the coughing, bad sleep pattern and the emotions that’s got me.
Thanks in advance x
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GillBo
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Hi, I had a right Bilobectomy last March then a completion pneumonectomy in May both open surgery, also no further treatment and up to now scans are good. I have luckily not had any chest infections yet but I do have episodes of coughing especially in the morning,, I also do still get some discomfort, I could not rest on my surgery side for a long time but that is OK now. The good thing to buy is a full length body cushion Amazing! My mood and emotions can be up and down and if I think to much I do get upset so I tell my self how lucky I am that this was caught early as some people are not so lucky. I walk a lot which is great for your physical and mental health. Recovery takes time but you will get there I promise. Stay positive and when we are all able to live a normal life grab it and enjoy it. Sending virtual hugs and positivity.
Thank you so much for your lovely response. I do use a v cushion currently which I now sleep with, along with 2 pillows. I will check out the longer full body cushion to see if that helps.I do need to lose weight and get some get up and go to start exercising and returning to swimming is what I am keen on doing again, once the restrictions are relaxed.
I have found that returning to work has done some good. I am happy to be part time and it’s working out quite well.
I did speak with a councillor at the beginning of my diagnosis but not since. It may be useful for me to find someone to let it all out and some tips on how to deal with my emotions.
Sending a big hug back to you and lots of positive thoughts x
I had a curative VATS lobectomy, about 18 months ago now, and I can still relate to your sense of unreality. I feel that part of the difficulty in dealing with it emotionally has been that a lot of the follow up care has sought to minimise my condition before I have fully processed it. I am extremely grateful, and positive, but that doesn't mean that I can or should ignore the fact that I have had a very serious illness and must live with a constant background awareness of the possibility of recurrence. I have sought counselling for the emotional side from a cancer charity, and found that helped, but I feel my understanding and processing of the medical side has been frustratingly difficult due to the rushed and dismissive attitude of my medical team. I think people need to be allowed to grieve the loss of health and "certainty" in their own way and that some medical approaches don't allow for that important part of healing. I am in the process of changing consultants for this reason.
I have not had a cough, but have got occasional tightness in the scar - it is getting better with time. I wonder if you might find help with the cough from herbal medicine - there are well qualified professional herbalists out there with great skill in helping support body functions. A good place to look is nimh.org.uk for a members list - some practitioners are doing online consultations these days. Perhaps there are people on the forum who have tried various alterative/complementary therapies and would be willing to report back.
Thank you very much for your kind response. To be honest, I hadn’t thought about herbal medicine, but I will take a look at the link for the members list and look in to this further.I do struggle with emotions and have always been a soft and sensitive person, which probably doesn’t help with my situation! I’ve actually found, thinking about it, that I have become a stronger person through this. I’ve had a lot of support from family but I still do have some emotional stuff that will continue.
Thank you again for your response and I’ll keep you posted on how I’m doing x
I had a left lower open lobectomy in September. I had terrible trouble, the lung didn't seal for two weeks and I had surgical emphysema around the drain that was in for nearly 4 weeks. I was in agony for weeks after the drain was finally removed. Lots of coughing and phlegm. I couldn't sleep on my favourite side either. I am a runner age 68 so I decided that exercise would perhaps help. Whilst doing a run walk over a mile I was in agony on every breath but the day after I noticed that the pain wasn't as bad so I persevered. Now 5 months later I ran 42 miles last week. A lot slower than I used to do but hardly any pain still coughing up phlegm a bit. No infections on chest and generally feeling good. Mentally it's difficult but enjoy what I've got. So my recommendation is try to exercise little and often allowing recovery in between.
Thank you very much for your lovely reply. I need to get exercising again and will start up swimming when able to. I will also start walking first as we are able to at the moment, during lockdown.I do feel better since returning to work part time and it has made me feel more normal but my emotions are still a bit all over the place, but I think the key of this is to start exercising to help, as everyone has said in this feed.
What you're experiencing is perfectly natural and normal and there is also a mix of psychologically surrealism and survivors' guilt - I know I felt these when I learnt how few people are detected early enough for surgery to be possible. I also lost a dear friend suddenly within a few months of my left upper lobectomy (open surgery) which made me appreciate even more 'there but for the grace of.... etc'.... I had a couple of episodes about 18 months after my surgery that had me back in being scanned, bronchoscopy etc but turned out to be infection. I became determined that something good would come from what had happened and decided to resume my swimming in my dear friend's memory and raise funds for Roy Castle lung cancer foundation. this served so many purposes for me and lockdown has proved to me more than I probably already realised how important stretching torso/abdomen is and moving shoulders/arms etc that simple walking does not do... I agree with others, keeping active in some way offers an opportunity to thinking time, regaining fitness in the remaining lung and resetting/reconditioning - for me I prefer that to be in the water that supports my weight and has been my choice of hobby/fitness since 1990. We're all different and all recover differently from surgery but the numbness/occasional twinge along the scar line is also normal - I still prop myself up with pillows when I get an infection to stay off that side where I had surgery.... but most of the time I just get on with it. I found a couple of books helped me - online forums didn't exist specifically for lung cancer when I was treated and diagnosed except generic ones on Macmillan and I found 'anti-cancer - a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman both helped me put life back into some form of perspective albeit a different frame than it had been before. I also attended some counselling sessions offered by our Trust for cancer patients and found them really helpful to help explore what really mattered to me in life for the future.... I think it's similar to what many have gone through or are going through as a result of the pandemic - for me it felt as if life would. never be the same again. In some ways that's true and in others, it has led me into a world of people, work, knowledge and understanding that I didn't even know existed.... good luck with your continued recovery.
Thank you very much for your lovely message. I am just finding my feet with getting back to “normal “. I have returned to work part time as a receptionist which is what I am happy with. Before, I had a management role and worked full time, long hours and a lot of stress! I had the diagnosis while furloughed, then a week after returning to furlough I was made redundant. That stressed and upset me. I am much better now about the situation but it really put me back with my emotions, trust in people, etc. My husband and daughter were absolutely wonderful and still are in their support and love.I think returning to work and some kind of normality has done me good.
I will check out the books you’ve suggested and hope that these will help me in healing or to understand my emotions and learn to control them. I will also take up swimming again when able to.
I really appreciate your advice and wish you luck x
Hi Gillbo. I had Chemoradiation in 2018 followed by an upper right lobectomy via open surgery. I have experienced all the symptoms you describe and believe me it does get easier in time. For the cough, which I still have, I suck Bronchostop pastilles (available in Superdrug) and chew gum. I also drink loads. Since surgery I have done controlled breathing exercises every day as recommended by the post op physio, which have really helped (you can find instructions on line). Daily exercise helps both physically and mentally. I started walking short distances and gradually increased. Swimming is great and before lockdown I was going 3 or 4 times a week, this really helped me mentally and I have made friends at the pool who supported me as I gradually increased my swimming post surgery. For the scar discomfort I use bio oil every and have found a way to apply it up my back myself!! I also was prescribed amytriptaline for the nerve pain. It took quite a while before I could sleep on surgery side but that will come in time. I hope you have found some useful tips from the replies you have had.. I personally need daily exercise and fresh air now. I’ve also been doing Tai Chi during lockdown. Good luck with your recovery and best wishes.
Thank you very much for your reply and useful information. I have started using bio-oil on my scar, the smell actually feels calming! My sleep seems to be a bit better this week, although I seem to sleep on and off during the day too when I’m at home.I’ll go back to swimming when able to, as it was something I enjoyed and I’m sure it will do me wonders. I am overweight and need to get on and do something about it. It’s getting the motivation to do something about it.... I will do though.
I’m very grateful for yours and everyone else’s tips and help. Thank you and best wishes x
As you can see from the previous answers you are not alone and others are experiencing similar symptoms. Lack of sleep due to your cough at night can hinder you from thinking clearly making your emotions difficult to control. It might be worth speaking with your Gp to ask if there is anything else that can be prescribed, The dry, hot air that comes out of heaters can cause havoc with your airways if you have a cough, sometimes humidifiers can be helpful by keeping the air in the bedroom moist. A cough at night can be caused by lying horizontally as this allows mucus to pool at the back of the throat and, consequently, irritates it, when you go to bed, try propping yourself up with an extra pillow.
If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 72000
I had a right upper lobe removed July 2020 and have just had my first scan clear thank goodness..... its the feeling of dread coming up to it and waiting for results. I didnt fancy chemo then felt cheated when they said I didnt need it . What a range of emotions will it come back how would I know what should I look for ...it was picked up as a complete fluke so never had any symptons. Feel ok but hard , Numbess took ages to wear off and now aches at wound site. After initially planning funeral then so pleased to have surgery then trying to move on ...I am a work in progress lol but getting better a bit more accepting . I am sorry I have been of no use to you but you have helped me by just confirming I am not alone and my poor sleep and aches and pains are not unusual, Stay well
That’s a lovely message you’ve sent and you don’t know how much you’ve helped me with your lovely words. I just read it out to my husband and he said he thought I had written it!I’m getting the feeling that these emotions and other things linked to this is very common and most, if not all, go through it.
I think I felt worse after surgery whilst in hospital as the nursing was absolutely shocking and I hate to write this as most nursing are absolutely wonderful, but it really upset me. The surgeon & Drs were wonderful. I felt the follow up and cancer nursing was not particularly good either. I had more support from my previous employers critical illness cover which provided specialist nursing care.
I wish you lots of health and happiness and if ever you want a chat give me a shout x
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