Recovery after treatment of lung cancer.

[_Bimbo80]

To share my feelings about having cancer and having my surgery on my left lung 50pc taking away. I have tried to find any groups that I could attend and speak to others who have had cancer but find their is none. I’ve joined the Roy castle lung foundation but I am not sure how it works. These last two weeks I cried so many tears as I feel I’ve not had any support since I got out of hospital. Would be good to hear from anyone who feels the same. Thanks Joan

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Joan

Welcome to the forum and hope you hear from others who have been through the same. It can feel quite isolating and lonely and it is not unusual to feel very emotional.

This link from Macmillan support may be of help: macmillan.org.uk/cancer-inf...

I believe we have already been in contact today, but please do not hesitate to contact us if you would like to discuss anything, our email to ask the nurse is [e-mail] and our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

Kind regards

The Roy Castle Support Team

[Kanafapot]

Hi there,

I felt very emotional for a while after the removal of the top lobe of the right lung. I found great difficulty in staying asleep, partly because of the post operative discomfort and partly just feeling out of sorts. Not sleeping was not helpful. I think I was also grieving for the loss of my previous life. Eventually, I contacted my GP and had a discussion with her about my progress and lack of sleep. (I’m a lucky lady in that I’ve seen the same GP for anxiety for many years). She suggested I may be helped by a course of my previous antidepressants or a different type. I decided on the known antidepressants. They certainly helped me to get back to better sleeping patterns, although I do still wake in the night if I lie on my right side.

Six months after the procedure I’m feeling a lot better. Next month I need my first post operative scan to check I have no further hotspots. Then an appointment with the clinic in December. I admit I try not to think about it as I feel rather anxious about the outcome. It’s that feeling of the unknown and waiting.

Anyway, I hoped I’ve helped a bit talking about my feelings and experiences. Please get in touch if you want to chat. I hope you’re feeling better soon and I’m sending you some virtual hugs and some flowers💐.

With love xxx

[Mauranne]

Hi Joan

I’m 77 in November and I had a lower left lobectomy for adenocarcinoma of the lung almost four years ago. I don’t know where in the UK you live but presumably you were given details of specialist nurses you can contact? I found the Roy Castle Lung Foundation helpful reading of other peoples’ stories and although it is remote, I found some reassurance in the forums learning how others dealt with their feelings. Cancer is frightening but gradually you will come to terms with that fear and move it to the back of your mind. When I was diagnosed I was also being treated for another quite different and unconnected cancer and it came as a shock to learn I would need this surgery urgently. Fortunately it was discovered early because of the monitoring I was receiving for my other cancer. You will be monitored closely now with regular scans for about 5 years to watch for any changes. It is normal to be anxious about this especially in the early days.

My advice to you is to talk about the way you feel with your friends and family, explore other avenues like MacMillan. There may be a group near to you where you can meet other cancer sufferers. I remember crying and feeling low like you but this is quite normal and will fade as you recover from the surgery. Be kind to yourself, your body and mind have been assaulted. I hope this helps you. Best wishes Mauranne x

[Ianhick]

Hi Joan, sorry to hear you've had little support since your operation.

I had a top lobectomy on my right lung just over two weeks ago and also haven't heard from anybody. Fortunately my wife has been a rock and helped me so much, I've also had amazing family and friends supporting me. You don't say if you have family or friends supporting you, but if you do I'd encourage you to talk to them about your feelings and issues. Also get in touch with the lung cancer specialist nurses and speak too them about how you feel and emotional support. I must admit that it wasn't until I contacted my nurse team, that they made contact. But they are under so much pressure, it must be difficult to keep track of all their patients.

Have you tried to see if there's a general cancer support group in your area? Whilst not specifically lung specialists, the emotional support would be helpful.

I only dip in and out of the forum, but everyone wants to help each other on here. Also have you tried some mindfulness, I find it really useful when I'm feeling down, especially after the initial diagnosis. Ask at your GP surgery about support as well.

Stay strong, think positively.

[_Bimbo80 in reply to Ianhick]

hi Ianhick. Thanks for your reply yes I have got good family support my husband is a rock for me as well as my sister who visit’s everyday i do talk to them about it but I feel they don’t understand as they haven’t had it i feel talking to someone who has been through the same thing as myself would be a good thing. My sister has been taking me out to the shop’s for a couple of hours and for a coffee which I enjoy just getting out the house i got some mail today giving me some phone numbers and dates for drop ins Hoping to get to some drop in. Thanks again x

[Ianhick in reply to _Bimbo80]

HI Joan, that's good you've got support from your family. JanetteR57 gives some good advice below, as I'm only a few months along the journey, she's in a far better position to advise you. I did contact the Macmillan support line not long after my first consultation with the respiratory team and found them very helpful, this was before I knew about the Roy Castle Foundation, in fact I think it was the support line that told me.

Ian.

[JanetteR57]

Sorry to read of you feeling so isolated and upset after your surgery - I felt the same when I had my surgery 12 years ago in December but thought it was due to the poor weather/snow and being shunted to a private hospital on the NHS then follow ups being in my local district general hospital that there wasn't support.

I've been involved with Roy castle lung cancer foundation since 2011 in different ways and there are many ways to get involved. Right now, I'd suggest you have a look at their support pages and find a way that might help you - they have a nurse led helpline, online group sessions, telephone buddy scheme and in person groups in some areas.

Through fundraising for them, I was invited to a conference in Birmingham in 2012 which was the first time I met other patients and their relatives and listening to them realised I'd had such a different experience - I'd never heard of a lung clinical nurse specialist and certainly hadn't been offered one (think due to fragmented service mentioned previously) so when I asked my consultant if the Trust had any, they introduced me to 2 of them and I had a chat and asked if I could access counselling. This really helped me.

Being self employed, I'd rushed back to work and having done some work in the February was back full time by the end of March - when I next saw the consultant and he asked me about my swimming I told him I hadn't yet gone back so he pulled a face saying the muscles would be painful as they'd have shortened (I was a regular distance swimmer) and to resume it if I could. I went the next day and although painful was determined to recover my fitness and went onto swim much further, building it up a little each day - which is what I'd done with walking after my surgery to regain fitness. I found walking a little in my local area (there's a park nearby) enabled me to see the same people walking their dogs, watch the seasons and generally appreciate life itself after the shock of the diagnosis and treatment.

I think what you're describing is common - it's part of grief - grieving for the life we thought we might have had, what things we imagine might not be possible now, and for how differently things might have been. I became involved in lung cancer research at the end of 2013 and was shocked how few patients are detected when surgery is possible in the UK so that made me even more appreciative for every day.

distraction and helping others always helps me think less of myself and my situation which makes it easier for me... and many others who befriend/buddy patients or offer help and experience via this and similar forums are here to hopefully help you at your time of struggle. hope this helps. thinking of you. good luck with your continued recovery. roycastle.org/help-and-supp...