January 2026 Updates

"I’m Julie and I’m one of the patient partners in the Limbo Land film. As patients, we agreed that Limbo Land is where we end up when we’re waiting but unable to do anything. It is the space between knowing and not knowing, between fear and hope. I wanted to be part of this film because there were many times during my treatment that were incredibly challenging but there were things I did that helped me. I wanted to share my experience in the hope that it would help somebody who was also having a difficult time in Limbo Land. When I was asked to introduce the film today, I began thinking about the times during my cancer treatment when I’ve found myself in that place.

The first time I experienced Limbo Land was right after my diagnosis. It was late on a Friday afternoon when I was told I had breast cancer. I received my oestrogen and progesterone results — both negative — while my HER2 result was still pending. My clinical nurse specialist explained that it was likely to be negative too, which would mean I had triple negative breast cancer.

I was told not to Google and to use only trusted sites. I turned to Breast Cancer Now and Macmillan, and what I read, terrified me. Those next five days became my first real visit to Limbo Land, although I didn’t yet know it had a name. I couldn’t sleep. I felt panicked. I cried. I was convinced I was going to die. The following Wednesday, the HER2 result came back negative. Those five days in Limbo Land had been filled with anxiety, fear and dread. I struggled to carry on with normal life because everything felt so uncertain and there was absolutely nothing I could do.

My next visit to Limbo Land came while waiting for the histology results after my first surgery. For four long weeks, my anxiety grew. I couldn’t sleep and lay awake at night with my own thoughts, knowing there was nothing I could do except wait. Limbo Land is a very lonely place and scenarios played out in my mind. I don’t think I realised how anxious I had become until I finally heard the words “your results are excellent” and everything was explained to me. I remember almost collapsing with relief.

The third time that stands out for me, and the most challenging time I experienced, were the four or five hours between having my bloods taken at pre‑chemo and waiting for a phone call — or no phone call — to say whether chemo would be delayed. Being triple negative, it felt as though chemo was the only thing I had, and every delay hit me hard. Those few hours of waiting each week were truly awful.

Although my active treatment is now complete, Limbo Land hasn’t disappeared. I find myself there when I am waiting and have no control over an outcome. I sometimes experience similar intense feelings such as those I had when in Limbo Land during my treatment and this can make aspects of life challenging.

All of us patients in the film have experienced Limbo Land. We have shared what it means to us, how it makes us feel and what we try to do when we find ourselves there.

Limbo Land is different for everyone, and hearing many voices — both patient and professional — offers a range of perspectives. Unfortunately, Limbo Land is a reality for many of us. Our hope is that anyone who watches this film will feel reassured that although Limbo Land can be a lonely place, it is a place many of us have been and many of us continue to be.

Most of all, we want to say that it is okay not to be okay."

This did appear to start off the day well and many people came to find me afterwards to thank me for sharing my lived experience.

I finally had my sinus surgery and tooth extraction on Friday. Although I'm still blocked up and I have a mouthful of ulcers, I can tell that it is already better than it was. I can't smell or taste infection. I'm now trying not to think about osteonecrosis of the jaw - the MAXFAX people said that I have less than 1% chance of developing this so fingers crossed!.