Lobectomy 4 months on

Hi Mash sorry for the delay in answering. I used to have a lot of pain but that’s practically gone now and as I had my op before you I’m sur your pain will go as well… I am also having CBT counselli over the phone as I was getting very anxious about going out and getting breathless or meeting friends and not being able to walk to the restaurant… that’s improving as well  The consultant told me I have moderate Emphysema and yet up until the first lockdown I was as fit as a fiddle… I am on 2 inhalers and I do breathing exercises that are on YouTube… I don’t wheeze orough but I am so short of breath after any exertion… I hope you get some answers to your questions and the breathing gets better. How are you managing to walk a mile? That’s my dream

Hi Nannyto6, no worries - walking a mile well I do half a mile and then rest. My breathing is real hard work but I have to really push myself it's so unpleasant and I slow down or pause if I need to. Takes a really long time for my breath to return to some kind of normal after each half mile. I have an appt to look at inhalers, but my big thing is that for two weeks after surgery my breathing was so much better and then suddenly changed. Identifying why may give us some answers either for treatment or at least what the cause is and something to talk to patients about. Currently though I feel as if we survive surgery you tick a box and no one seems particularly interested in the quality of life we're left with and we have to really push to get support to deal with any problems we have. I specifically asked about breathlessness before I had surgery as I knew I'd really struggle with that, it was glossed over. As I say though it's the massive change in week 3 from doing ok to having to work really hard to get enough breath without an explanation. Good luck our perseverance will get us through

Hi Mash do you think that for the first couple of weeks you weren’t moving much cos I know I wasn’t …. I had a lot of pain and District Nurses were coming in to change the drains…the first time I acally walked was when I went for my post op appointment with the surgeon and that wasn’t far as the hospital porter took me to X-ray… I still have fluid on the lung which the surgeon did say happenedarely, do you think you may have that as well? As you say I’m sure we will come out the other side

Hi Nannyto6,

I was going for weekly checks on the drain at the hospital and made sure I walked to x-ray, the pharmacy and drain clinic - wanted to test myself, in our hospital that's quite a long way. The second week I was really surprised that my breathing was so good and even commented on it to my daughter. The following week one morning I woke up in more pain than usual and went to make a cuppa and found I was really struggling to get my breath and despite exercising and walking I can't get it much better. It's so unpleasant and such hsrd work it even sounds wrong somehow even with my blue inhaler. Will be going for a review for my inhaler with GP but have insisted on a follow up with the surgeon which will be in a couple of weeks. I did have a lot of fluid for ages theyve not told me exactly what my CT shows so could still be some fluid. My pneumothorax went on for 4 weeks and I was still shedding fluid as well as air at that time I asked about removing the drain while so much fluid was coming out and they said they were only really bothered about the air. 

I have looked at the stats for lung function recovery and most happens between months 3-6 but there is still further incremental improvements over the next 6-9 months but most in the first year. Obviously the fitter before surgery the quicker the recovery. So I'm sure we will see improvements over time - fingers crossed - Good luck

Hi Mash I completely agree on your recovery timelines and I hope both our breathing problems improve…like you I was wary of the drain coming out when it was still draining fluids but who are we??  Good luck  

You too!

Had my scan on Monday and got the results yesterday.  Everything is good from both and lung cancer and lymphoma point of view.

I still get random pains on the left side of my chest and they can be quite intense at times.  I also need to start working on building up condition - even putting my arms above my head for the CT scan on Monday left me in pain for the following couple of days.