Hi my name is Clara, it took 9mths of a terrible dibilitating rash, repeatedly seeing doctors before the gates were opened to see a hospital consultant. Soon after I was diagnosed with stage 4 lung cancer. I feel l life is about quality not quantity, and opted for immunotherapy.
I was until recently always active and healthy, so I didn't have much to do with the NHS
I find now the NHS has changed beyond all recognition, and there is an apparent need for doctors to inform their patients of the difference between the the basic NHS health care and private.....as a 69 Yr old, and using the basic NHS system, I'm finding it a very poor watered down system, with minimal support, unless you request it via forms. Today I had a telephone call, an hr late, no apology, this was meant to be a consultation, in reality there was no face to face interaction, just a tick list, and little room for my questions to be answered.
So I'm looking for support from people in similar situations, who can help.
My biggest challenge is currently, as I found out today, I'm low in cortisol levels, not surprisingly having stopped taking steroids 3 days ago as requested. I'm forcing myself to eat, hair loss, fatigue, so sleeping more than I would want to during the day time, awake in the night.
Hi Warfy welcome to the group, but I am so sorry you have had to join us here. I feel your frustration with the NHS, they are extremely over stretched. I don’t know where you are in the UK, but I wonder if you have a maggies centre close to you? These are usually close to the main hospital, and are really great places to go for support.
I have been on this cancer journey since 2009 and incurable since 2014. I am lucky I have a wonderful oncologist now who I have face to face appointments with. I do get offered telephone consultations but I prefer face to face, maybe this is something you can request? Being in the system for so long though, I do recognise that it is very much the one that shouts the loudest that gets the help. For me it is not my oncologist that doesn’t listen, but my GP who is supposed to support me alongside my oncologist, but seems reminding about my disease repeatedly.
I have never experienced low cortisol before, but I know it can make you very tired. I hope that sorts itself soon for you. Good luck with the immunotherapy, we have had some very good success stories from people who have been on immunotherapy alone. I have been on this site so long that I was around when immunotherapy was first introduced as a trial drug for lung cancer, and now it’s a first line treatment.
