Living with Uncertainty: Life in the "Grey Zone" after cancer treatment

I finished my two year course of immunotherapy in February 2025. It's now all about recovery, "watching and waiting" and continuing to live with uncertainty. It's about living in "The Grey Zone" but with colour, sparkle and maybe a bit of leopard print.

How many times do people say “The answer isn’t straightforward, it's not black or white - it’s a grey area?” This "grey area" is that bit in the middle, a place of no right or wrongs, a place of uncertainty where it “could go one way or another” a place where everything is finishes with “ish.”

I have been living in a “grey area” or this "Grey Zone" since I was diagnosed with melanoma. Often, there isn’t a definite answer to questions or results. Sometimes results need further investigation or it’s a case of "watch and wait." There are times when the answer is definite, when biopsies and scans give certainty but most of the time, I live in an uncertain place.

Finishing cancer treatment is not easy. When I finished adjuvant treatment in 2023 after the initial relief and joy of no longer taking medication everyday, I felt anxious. I felt like the comfort blanket that I had wrapped around me had been taken away. When I look back, the comfort blanket was still very much there but not wrapped around me so tightly. The scans were still done and the medical teams, especially the skin cancer nurses, were always there for me to contact if I needed to.

Finishing treatment to Stage 4, feels a little different. The treatment has been for longer and the side effects have been more difficult. I will be honest, at times during this treatment I have felt traumatised and scared about the future. There have been times when there were doubts about whether immunotherapy was working and whether I would be able to have SRS/gamma knife to the lesions on my brain. There have been long, anxious waits for scans and results and side effects that have been difficult to manage.

This time, I'm anxious about finishing treatment because I worry that somewhere melanoma cells that have been hiding away will suddenly start to organise “a bit of a do” somewhere in my body. Or that my body will make more melanoma cells - it has been good at that in the past - and my immune system won't recognise them. What I have to remember is that this treatment has charged up my immune system so much, sometimes too much, and that this hopefully has done the trick and stopped malingering melanoma cells in their tracks. If not, I hold onto the fact that I am being scanned regularly and help is only a phone call away.

My diary will be strange without the regular infusions of immunotherapy. I remember being anxious for the first one, a bit like my first day in a new school or job – not really knowing where to go but now the receptionists know my name and I feels welcoming and familiar. I have adapted to having treatment and going to appointments – I always have a book, a fully charged phone, headphones and snacks. 

When I finished adjuvant treatment in 2023, a lovely consultant said to me “go out and enjoy” and I look back and hold that advice close. She had treated me, dealt with the side effects so that I could go out and do things, go and live my life. My recovery didn’t go as smoothly as I wanted it – it was by no means linear, but I did feel eventually feel a lot better and in my usual style hoped for the best and prepared for the worse.

This time, I know it will take longer to recover and I need to take that on board much more than I did last time. Finishing treatment is definitely not the end of the marathon, I need to rest and recover and process a lot of what has happened. I now have type 1 Diabetes due to my immunotherapy and inject myself with insulin before I eat, I have rheumatoid arthritis because my immune system is attacking my joints and I will be giving myself a weekly injection to suppress my immune cells. Tomorrow I am having blood tests to see if my adrenal glands are working properly. There is a lot to think about and it is overwhelming at times.

I am really fortunate because the hospital that takes care of me runs a Late Effects Clinic and they are helping me adapt and get treatment for my side effects. I feel sometimes like I am collecting "ologies" - oncology, endocrinology and rheumatology and I now have cancer nurses, rheumatology nurses and diabetes nurses. I'm so grateful that there is so much help for me and that I am feeling more confident of managing things because of the support. I wouldn't be here without the care of the oncology team. I never ask for my prognosis but I do know that I am alive today because of immunotherapy.

I know when I tell people that my treatment is over, I will get messages of “congratulations” and that will be wonderful, support from friends and family is what has got me through. I have felt so loved and cared for. I'll be asked “Have you got the all clear ” or “is that it, no more cancer or treatment?”. I’ll explain that at Stage 4 I am hoping that my scans show No Evidence of Disease for as long as possible, but there is always a significant chance that melanoma will come back, so no I won't ever get "the all clear." At the moment things are stable, the "lesions" in my lungs and brain can still be seen on scans but we hope that this is scar tissue as they aren't growing. That's good, it means things have been controlled and treated. I’m under no illusions that it won’t reappear, my hope is that cancer keeps away for a long while. I will be monitored for a long time and some side effects will possibly stay with me long-term (I’m looking at you diabetes and arthritis.) I have just had scans - for the moment they are every 3 months - so I hope that these will continue to show good news. We live in little 3 month blocks.

The anxiety for me and my loved ones will be there for a very long time, maybe forever. I am learning to "conserve my energy" and spend it wisely and continue my nan-nan naps - often joined by my little dog. I want to be able to spend the energy I have with my family and friends and be there for them, spend time getting the message out there about skin cancer and how to prevent it and on doctor's orders (and my mum's) recovering and being patient with my body.

Life in "The Grey Zone" isn't always miserable and full of anxiety, please don't feel pity for me; I try to live in this place of uncertainly with colour, sparkle and yes, maybe a bit of leopard print (even my dog now has a leopard print coat!) because I'm here and that's bloody brilliant!

Lots of love as always and thank you for reading x