I posted before two weeks ago when I heard that my bowel cancer has now spread to my lungs. I was in with the consultant to hear how radio chemotherapy had worked on my bowel cancer only to be told that it’s spread to both lungs and given approx 2 years “statistically”.
The whole meeting and bombshell news was around 10 mins and to be honest I couldn’t even take in the news let alone speak much. I do remember asking the consultant what they would do if they were me and her saying she would go do everything she wanted to before starting palliative chemo. I really didn’t want to start palliative chemo as on a previous chemo I had so many bad reactions, almost ending up dying twice in hospital so the thought of chemo immediately was a no no.
The lack of preparation for the meeting on her part was dreadful. Giving someone a terminal diagnosis with not one ounce of hope. We were the ones who had to ask about trials and any other possible treatments and it was my husband who asked as we walked out, when the next scan would be and she said she would arrange one for 3 months.
Since then we have paid for a private consultation with the Royal Marsden who said the information on my CT scan results showing lung nodules was insufficient and not detailed enough. I discussed my chemo worries and generally felt much more informed than I had with my own consultant. They stressed the importance that I should have a scan no later 6-8 weeks following my last scan showing the nodules to see how quickly they had grown in that time and I would be in a better position to make a decision on chemo and start quickly if so.
Unfortunately my oncologist refused another scan before the 3 months. I have contacted the local hospital where I started my original bowel cancer journey to see if I can transfer back there as it’s much more convenient for me and I had a good relationship with the oncologist there. They will also not do a scan saying it’s not necessary and to wait for my next 3 month scan. Apparently my current oncologist also told them I did not want palliative chemo which is not really her business to say and surely I have the right to change my mind about things?
Obviously since the initial diagnosis meeting I have done lots of soul searching and despite not wanting to have chemo again, feel it’s my best chance of being with my family longer. It is a huge thing I’m having to do here and it feels like I can’t get any professional NHS help. I am struggling to get to see anyone again and discuss my questions, fears and feelings. I do honestly feel abandoned and feel like they don’t actually care about me and my diagnosis For the past 4 years I’ve had to push for scans, blood tests and operations and due to various delays, some understandable ie COVID, and others not ie hospital errors and delays. I am so tired of having to do this and need my strength to make decisions and keep well.
I also think that if a new scan shows further growth that it will be the mental push I need to start chemo. The reasons for no in between scan on the NHS is resources which breaks my heart. I have been told I am dying; have incurable cancer but still they don’t want to help me.
Sorry for the rant; I needed to get it out. I am struggling mentally when usually I am so strong.
thank you
