Hello
I was diagnosed with terminal lung cancer last October. The left upper lobe of my lung had collapsed and had a 10cm tumour, this was partially blocking the lower lobe and caused it to overexpand. I had two sessions of palliative radiotherapy at the end of November to help keep the lower lobe functional, which did help my breathing. I am lucky as I have no pain other than occasional episodes which disappear within days. I am on no treatment or prescriptions, but was given Oramorph to help with my breathing and have protein shakes to help regain lost weight as my appetite was non-existent.
From April onwards I started feeling much better. My breathing has improved, my taste is returning (everything tasted foul previously) and my appetite has returned. A cancer nurse telephones me for my progress every few weeks so I asked her if I could see my xray, as I had some discomfort in my upper chest when I bent over or laid down and wondered what it was, also to query why I was feeling much better (but very grateful for it). She arranged for me to see the respiratory consultant who sent me for a new xray. Joy of joys, the xray looked pretty much normal as my upper lobe has reinflated although the cancer still shows as a shadow. The consultant thinks the radiotherapy was more effective than expected. Due to the unexpected improvement I asked if I would have 6 monthly reviews but was told to 'see how I feel'.
I am one of those silly people who never thinks of questions at the time, and am too afraid of being a nuisance to ask questions afterwards, so I hope I can receive some guidance here to avoid me making myself look an idiot with the cancer nurse or consultant.
Should I receive a regular review? I expected a report of the new xray to be sent to my GP, but there is nothing on the online records. I hoped a report would answer most of my questions.
Has the tumour reduced? It is hard to tell from an xray, but something must have changed for me to feel so much better. Could further radiotherapy help me?
Once cancer has been diagnosed as terminal and no treatment recommended, does this mean I will not receive any ongoing monitoring, even if things appear to be improving? I don't want to get my hopes up but I don't want to ignore the possibility of extending my life either.
I know the NHS is over busy. Is there anything I should be doing, or requesting, and how likely am I to get further help, or am I just wasting the NHS's time and money and making their problems worse?
