A few weeks ago, I shared on my Dear Melanoma Facebook page that I had made an appointment to go and see one of the psychologists at the Cancer Council office in Brisbane. I shared this piece of very personal information because I wanted other people to know that I am not this crazy strong young woman that you might think I am from reading my blog or interacting with me online. And, although my treatment is going well, I still struggle with living every day knowing that my time is short. I needed to see a psychologist to have a good cry to and work out how I am going to navigate life with a terminal diagnosis.
When asked by the psychologist at my first session what I wanted help with, I told her that I was struggling with balancing living each day like its my last and living a life where I look forward and plan for the future… but a short future. I needed to know how to navigate a life in limbo.
This may be a difficult dilemma to comprehend, but it is a dilemma shared by many, especially young people, who have a terminal illness.
My life is in limbo.
In January, I was planning my death. My treatment was not working and we did not know if I would gain access to a clinical trial, or even respond to the treatment. I had met with a palliative care team. We discussed how I wanted to die. We spoke about how I would prioritise saying my goodbyes – did I want to say goodbye to everyone or spend my weeks with my family and closest friends. We went on a family holiday to Hamilton Island, thinking it would be our last chance.
And by far the most difficult part was when I started to plan what I would leave for my husband, parents, sisters, family and friends.
I started collecting my favourite Twigseed cards and hiding them away. These would be my gift to Serge. Letters to open on important anniversaries, letters planned for his next ‘Great Love’, letters for when he has children. My wedding and engagement bands would go to my sisters and mum. I planned to start collecting my favourite children’s books to give to my nieces and nephews, books that would teach them all the things that I would have hoped to teach them myself.
The list goes on. I needed to be ready. I had planned my goodbyes. I had planned my death.
Some of the many Twigseed cards I have put aside for Serge.
Serge stopped working so that we could spend as much time together as possible. We went on romantic weekends away. We would go out and enjoy meals together. We would live each day as it was the last.
But things changed. I started responding to treatment. This was absolutely fantastic news! I wasn’t given a cure, but I was given much needed time with my new husband, family and friends.
Almost 10 months on, I am still here and I am still responding to treatment. There is no sign that things are going to deteriorate any time soon.
This is where the life in limbo begins to take its toll. I had planned my life thinking that I only had months to live. What happens when you find out you may have a few years in you? Do I go back to my pre-cancer plans or do I continue living in the moment?
I can tell you now, although Serge and I get to do lots of fun stuff together, living in the moment isn’t as good as it sounds! Some of you may have read my blog about my dreaded bucket list. Like I said in that blog post, every time I would ‘live in the moment’ and do something fun, it was a constant reminder that I was doing this because I am dying. It gets tiring!
But, on the other hand, the alternative that I imagined would be that I would just go back to how life was pre-cancer. I would go back to university and study or I would work. And then my mind would tick over and remind me that being stressed at university or doing a job ‘just because’ is no way to spend your last years.
So, welcome to my life in limbo!
I am embarrassed to say, but sometimes I think about how it was easier knowing a time frame. I felt I could plan for that time. People ask if I am glad that I asked my doctor for my prognosis, and I have no hesitation in answering. I do not regret finding out that, if this next treatment option didn’t work, I would only have months.
How do you navigate life with a terminal diagnosis? How do you plan for the future, a future that is so unsure? How do you balance having fun, with being real? What does living in limbo mean for me?
I do not have the answers to these questions, nor does my psychologist, but I can hope to somehow manage the emotions that come with living in limbo.
Ralph, our new puppy, was an addition to our little family in hope that he could bring a purpose to my days. Someone that I could take care of. Someone that does not see me as Emma with cancer, but just Emma. We have only had Ralph a few months, but he is everything I hoped him to be.
My blog, Dear Melanoma, as well as my work raising awareness and funds for melanoma has kept me busy. I love writing my blog and engaging with complete strangers on Facebook. Planning events and working with Melanoma Institute Australia keeps my braining ticking and utilising skills from my previous study.
With these things, I do feel like I have purpose and something to add to the world. They are things that I can do now and aren’t dependent on planning far in the future. Serge and I continue to have our days where we do live in the moment. We travel when we can, we go on dates together, and we just enjoy life in general. If there is something we want to do we don’t dwell on it, we just do it.
I am managing living in limbo the best I can, I don’t try and solve this dilemma, but I try my hardest to work with it.
To all of those people who are living a life in limbo, I hope this can bring you some ease. You are not alone on this journey. You have been faced with some thing that not many people can truly comprehend.