Hello All, I am 60 on the 1st January 2024 and I am having an upper lobectomy 2 days after.
Cancer was picked up by the targeted lung cancer team initiative CT scan and confirmed by PET scan, luckily it seems to have been picked up early and not spread elsewhere
I live alone and don't have a support system and I have a extremely limited budget and I am really terrified about how I will cope , at my pre-op the nurses said I may have a longer stay in hospital due to my circumstances
Has anyone else been in my situation and been able to cope both physically and mentally? I had breast cancer in 2008 and remember only too clearly how terrifically difficult it was , but i wasn't alone then and the surgery wasn't painful, the chemo and radiotherapy was though.
I want so much to back out of this lung surgery as I'm so scared, but I also dont want to die as I have 2 elderly little dogs who need me, is there hope? thank you for reading
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I appreciate how scary this must seem to face this alone but there is definitely hope especially when it has been found so early. My husband was in similar position earlier this year and had upper right lobe removed. He was 71 at the time. He was discharged from hospital after 5 days and obviously I was there but in truth I didn’t actually have to do much for him. He was able to shower alone even in hospital and when home and was pretty mobile even with chest drain in. Think about the practical things now and cook and freeze some meals ahead? I’d say it’s important to get on top of the pain medication when discharged as there was definitely a difference between the hospital (liquid morphine) and the codeine tablets but the nurse from my husband’s gp surgery actually came to visit him when we called concerned and she prescribed stronger painkillers and explained it was important to get on top of that as without that you won’t be able to do the breathing exercises and they really are key to longer term recovery. The hospital will ensure you are mobile before they discharge you though and you will be able to get out for short walks with your dogs sooner than you think.
Thank you for taking the time to reply Hopeful51, Your husband's experience is very encouraging, he was so fortunate to have you take such good care of him, I'm hoping that I can access meals on wheels type of service whilst I am in the hospital, apparantly they can't arrange it beforehand, they need to see if I can manage on my own before I am discharged, I don't react well to codeine or morphine, so hopefully there will be alternatives
Hi, it is a scary process I myself had lung surgery twice in 6wks and it was open surgery not key hole. It is important to control pain for recovery but honestly it is not as scary as you think. You should have a nurse specialist who goes through the process with you and will have info on a maggie's centre you can contact, you can go and sit with them and they will cover everything you need to support you through the process even financially. A positive mind is key so contact your nurse and get the info you need. Here if you have any questions or just need a chat.
Thank you Eglingham for your reply, I can't imagine how very hard it was for you to go through what you have and that you can look back on it positively, it gives me hope, Unfortunately there isnt a Maggie's centre within 2-3 hours drive from me, so don't think I will be able to manage that, there are MacMillan nurses but so far they've not been very helpful and any questions I ask are brushed off, and don't seem to work independently of the consultants
Unsure if my comments will help, but the site contacted me. Any cancer diagnosis is scary and difficult to come to terms with. From what you say your prognosis is good, I was very similar to you I had an upper lobectomy there was no spread. and there was no key-hole surgery then. I was fortunate in not having any other treatment other than the surgery. You will be able to cope both phisically and mentally, that's what we do! Your saviour will be your dogs they will help you cope mentally and later with your fitness. I was 42 when I was diagnosed I'm 78 next month so nearly 35 years down the line I'm still here. Good luck with your treatment.
I had pain for a long time after my operation. Still get the odd twinge, my wife calls it my “war wound. “ There are people on this site who will give you tremendous support. Good luck
It's natural to feel scared for surgery and as you had a previous cancer diagnosis and treatment, this will also be influencing your thoughts. I 'd had neither when I faced this 13 years ago..... apart from my partner who hates hospitals as both his parents died a year apart in the same one suddenly and unexpectedly, I had no support. He is also virtually deaf so I have to be his ears so attended all my appointments alone apart from the one where the surgeon told me I had to lose half my left lung and the 'large mass' which at that point was unidentified/undiagnosed but large, clearly showing on 3 different types of images and symptomatic as I'd turned up in A&E with symptoms when it was found on a chest x-ray but then ignored and misdiagnosed/mistreated as uncontrolled asthma.
I was 52 at the time and like you not ready to give up. I had open surgery on 16/12 and came home on 22/12 but it took until 13/1 to receive news of what I'd had. They'd sent the resected lobe off to the lab for pathology. That's when I learnt it had been adenocarcinoma - a type of non small lung cancer which as a never smoker was quite a shock. I had open surgery as keyhole didn't exist back then.
I remember thinking that Xmas would be my last and from what I'd found online back then, it didn't look good. Things have changed beyond recognition since then and I've been involved in cancer research for 10 years now including part of the NHSE group that works on the very targeted lung health checks that have allowed early detection of your tumour.
Not everyone has chemotherapy or follow up interventional treatment - my follow up was 'surveillance' or 'vigilance' on the part of the surgeon/hospital. All cancers are different and there are many types of lung cancer. Plus we're all at different stages of health and fitness when we have surgery or other treatments so how people react can differ wildly. I also couldn't tolerate morphine although I had no idea of that but was given alternative painkillers diclofenac which worked for me. I got up and showered each day and kept up for as long as I could and walked around the house/stairs and did the suggested exercises. I was also given an incentivising spirometer toy to encourage different breathing which helped no end.
I was back at work and swimming by the end of March but did some work in the February for which I flew up to Edinburgh to train some engineers at the University amongst other work mainly reading and commenting online for various NHS committees I was on at the time. I have met many LC survivors - one is 34 years since his treatment and others had also survived decades on other treatments before the newer ones were available. Sites like this and online closed Facebook groups weren't around at the time but can be invaluable although not all are clinically moderated or supported but can be a real boon to hear from others with lived experience. Surgery is usually undertaken for lung cancer with curative intent - other types of treatment mostly apply when the cancer has spread beyond the lung so I certainly wouldn't be opting out of such an opportunity - although understand your fear.
Since my surgery, our local tertiary surgical centre came up with a detailed book (and DVD) about the surgery with suggested milestones/recovery targets which can answer many of your questions and has been reviewed by a patient panel. their literature is regularly updated by clinicians but as things change so rapidly in terms of new treatments for more advanced lung cancer where surgery isn't possible, even they cannot keep up.
Our area also does not have any Maggie's Centres but many areas do have cancer support groups or charities - ask your local hospital or cancer nurse specialist if you are allocated one - I wasn't and access to them although recommended can vary across the country.
Once I became involved and learnt how few people were clinically eligible for surgery, I became even more appreciative of my treatment and care than I had been previously. Good luck with your surgery and recovery.
Hi Janette, It has been very enlightening to read your story and to learn how much things have changed in 13 years and I'm very very encouraged that the fact that I have been offered surgery means that there is a strong possibility I'll come out the other side of this, When I had breast cancer , it's odd but I had no fear whatsoever in the removal of my breasts , yes, due to having the BRac1 gene, the other was removed too, because firstly they weren't bodily parts that were necessary for life and secondly they weren't "inside" my body, so it didn't feel so invasive even though it was 3 very aggressive large tumours, chemo almost killed me, rads not so bad apart from the 2 hour each way travel every day for 37 days! Your recovery from open surgery also gives me hope that I can do this, as I said earlier I havent been able to build any kind of relationship with the MacMillan nurses I have been assigned as they are so disinterested and unhelpful, but I have phoned the MacMillian website once, it was ok but I guess what I really wanted was a hug and my late husband x
Hi again Janette, forgot to mention that I had Diclofenac for kidney stones and they were amazing and I didn't have any side effects, unfortunately they were only available as suppositories as it seems oral pills have now been discontinued, but if that's the only form available I would certainly use them again , and thank you for the great booklet
Keep reading the comments on this site, it’s fantastic how much people care and offer their support. You can do this, you will be back walking your dogs in no time.
I haven’t got a dog but during the build up to my operation 5 Dec I wished I had borrowed my nieces now and again, they take your mind off things a great source of comfort and strength.
Thank you Sally, my dogs do give me strength but also a lot of worry as they do need me so much, but now that an animal sanctuary have reached out to help me by having them whilst I have surgery, has helped massively with the worry, I will keep reading all the comments as it makes me feel part of something
I too live alone and was 65 when diagnosed with Stage 4 NSCLC with brain and adrenal mets. I do have two daughters but both live and work in London and sadly my daughters wife was diagnosed with breast cancer the same month in 2018 so torrid time for us as a family. Surgery was not an option for me a) because of mets and b) because I’d already had a bi-lobectomy and lost two ribs so had chest wall reconstruction in 2008 - for what was a mis diagnosis I did not have cancer at all back then however I was biopsied thoroughly, at the same hospital, second time around! Getting over that surgery physically took several months - all I would advise is listen to you pr body and rest when you can also speak up if your pain relief isn't being adequately control
I was absolutely petrified when it happened and I was given a very poor prognosis - however as you can see I’m five years down the road now. My brain mets were discovered before I’d had my biopsy so my brain mets have been treated with steriotatic radio surgery- which is very high dose radiation targeted at the lesions in the brain - I had no pain from the treatment, only needed one session for both lesions, I did suffer a n exhausting tiredness some weeks after. I was treated with immunotherapy Pembrolizumab for my lung and one year in my consultant referred me to radiotherapy for r SABR which is steriotatic ablative radiotherapy - again this high dose targeted to the tumour, I had this every day for 5 days in November 2019 - no pain from the treatment bit sore but never felt pain.
I totally understand you anxiety - it’s such a lot to take in and being on your own is daunting but do seek help when you need it also for your mental strength as this helped me enormously after my surgery and the second time having a very real cancer diagnosis.
Hi Elt79, Thank you for taking the time to reply and sharing your amazing journey, you truly are a fighter! you've been through so much bless you. It's true being alone and not having anyone to try to allay your fears ,causes thoughts to spiral into panic and uncertainty, but knowing that people here who have been kind enough to reply have got through this, helps a lot
Sorry to read this.any surgery is exhausting ...physically and mentally....I would suggest you start to stock up with easy meals .if you have a freezer ..maybe pop a couple of home made meals in.....you can freeze milk. .....the weather in January can be cold ...so get a scarf to wrap up in.....but please do try and have a little walk every day .....and phone the help line too......who will look after your dogs.....Good luck
Thank you Ceibach for replying, I only have a small freezer so have a limited amount of space, but I'm trying to stock up on tins of soup etc, I have phoned around so many people to have my dogs but because they are elderly and have medical conditions, unless I pay extortionate amounts I couldn't find anyone until I reached out to an animal sanctuary who will take them and let me pay in installments so that's helped me have peace of mind
It is not unusual to feel overwhelmed at the prospect of your lobectomy , especially when you are alone and have a significant birthday just prior to your surgery . It is encouraging that your CT and PET scan have not shown disease any where else. I hope that although you feel alone you will find some support and encouragement from the responses to you message on this forum . As suggested if you can it would be good to do some meal prep prior to surgery and ensure you have everything you will need at home in preparation for your discharge . If you continue to feel overwhelmed please contact your GP , clinical nurse specialist or surgeons secretary so you can discuss this further. If you still have questions and want to talk to someone you can call our ask the nurse service on 08003587200 or email: lungcancerhelp@roycastle.org.
Thank you RoyCastleHelpline, I really appreciate your reply and your suggestions, You are right in that the fact that people took the time to reply is very helpful and reassuring with some great tips, thank you for the contact info
Hi I'm sorry your going through this alone. Lots of good advice from the others I found a triangle pillow helped as I was discharged with a drain which was really uncomfortable. If you can get some help from Mcmillan they might be able to sort meals on wheels as it is uncomfortable to move around at first and maybe your gp can sort a district nurse to check on you. Hopefully the hospital will allow you to stay as an inpatient until they feel its safe for you to go home alone. Good luck.
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