“I really wish they would use a different name for palliative care.
I remember when my oncologist told the nurse to refer me to the hospice for palliative care. I thought ‘What the hell?! I’m being sent off to die.
My whole world just came crashing down at that point. I wasn’t ready for this. I didn’t want to die. There was still too much to do. It didn’t make any sense.
I now know that palliative care is very different to end of life care.
I had been on a treatment regime of the immunotherapy, Pembrolizumab and Carboplatin along with Pemetrexed Chemotherapy for 3 cycles over 3-week intervals. This was then followed by maintenance of Pembrolizumab with Pemetrexed every 3 weeks for up to 2 years.
After eight rounds of treatment, I had to stop. My immune system had gone into overdrive and caused ulcerated colitis, an inflammatory bowel disease that causes inflammation and ulcers in your digestive tract. The colitis took around a year to subside, even with a very high dose of steroids and two infusions of infliximab. I was then told I couldn’t resume my lung cancer treatment as it was far too dangerous.
I felt like the ground had been taken away from me again. The treatment had reduced my tumour by about 85% so the fact that I could no longer have it was terrifying. It felt like a death sentence all over again, thinking my cancer was growing and nobody was doing anything.
My oncologist assured me that she has other patients that also had to stop treatment and remained stable a couple of years down the line. Despite this, I still expected the worst so when my first follow up scan came back stable, I was relieved, but it didn’t stop that nagging feeling.
Another three months passed. Then another and the scans were still ok. I was starting to feel a bit calmer, but certainly not complacent. I think that fear, that scanxiety, never goes away whether you’re on treatment or not. I’ve learnt that you have to trust your medical team and stay hopeful.
On the plus side…
There are some benefits of being on a watch and wait regime. My body is not being pumped full of chemicals. I see other people on treatment and they’re having a really hard time. Their bodies are going through so much. I just count myself lucky that my cancer is ok for now. It’s not better, but it’s not worse either. It’s ok.
It’s not been easy, and I know there are lots of people who will be in the same situation as me. The best advice I can give is to keep talking. Get a counsellor. Ring the Roy Castle Lung Cancer Foundation support team. It’s terrifying and it’s traumatic but you don’t have to go through it alone.
I also found some hope in reading the stories of other people who have had their treatment stopped, so I hope my experience has helped someone too.
I feel I’ve come to terms with the situation now and things feels normal again – well as much as they can when you’ve got lung cancer. I’ve continued to work ever since my diagnosis and now I’m fully up to date with my Covid jabs, I’m enjoying planning things again. I am so appreciative of everything I get to do and there’s an element of freedom of not being tied to a treatment regime and I am loving discovering the world one holiday at a time!”