I guess you could say “Moving On” that’s a bit of an oxymoron when it comes to a stage 4 cancer diagnosis. Sometimes I wonder is it something expected of me, or something I expect of myself.
For those looking on as time passes and I haven’t passed, it can seem like all is well in the world. They see me walking in the neighbourhood, or at the local pool for my swim. I socialise and I travel, people comment ” you always seem busy” if you look at my Facebook page, it certainly looks that way. But what’s it really like to live in my world?
Truth is I spend a lot of time on my own, I spend far too much time on social media!! But I can’t blame anyone except myself for that one. Having stage 4 cancer can be bloody boring in between hospital appointments if you’re not feeling up to much what’s there to do. It’s also not healthy mentally to live from appointment to appointment.
In the winter time, it can be especially hard long dreary wet days when it’s not even possible to get out for that walk. Cancer often lives inside your head not as some mass visible on a scan but as a feeling, a barrier to what we know as “normal life”. Maybe there are things I am still capable of doing even with the side effects of treatment and time I require for hospital appointments.
With the last few years I have thrown myself into advocacy, I love it there is a sense of purpose, doing something worthwhile, keeping busy but it was still all about my nemesis. Earlier this year I thought about what it would be like to try something different, but what could I do, I worried about what would happen if I tried. Sometimes I now find it difficult to remember what was before Stage 4 it’s been so long, what was it like to go to work to look forward; weird reminders jolt me on a daily basis at the beginning I didn’t want to buy any new clothes, now I realise as I load the washing machine everything I own is a post-diagnosis purchase, conversations with strangers asking what I do for a living, how do I answer. I never imagined at the beginning it would be this long. There’s no roadmap for longterm survival at stage 4.
I had a long internal battle about what I could do, I had a professional consultation and it was suggested I should get a job somewhere part-time where no one knew about me or my diagnosis. It would give me headspace or at least that was the assumption. I couldn’t visualise myself having that conversation with a prospective employer ” Oh just to let you know, I have stage 4 cancer”. I would I thought in fairness have to let them know if only from a health and safety perspective. I couldn’t imagine anyone wanting to employ someone in my situation and to be fair a quick google would have revealed my secret.
When I have that moment with someone I haven’t met before it’s difficult to verbalise the words even in my own head, it still sounds totally abnormal that I’m going to be saying it. There’s normally one of two reactions; the person opposite bursts into tears or the conversation suddenly becomes very uncomfortable for them or me. Recently I got stuck in a European airport because of a flight cancellation, there was a huge scrum so I couldn’t get close to the desk and explain my situation. I could have pushed forward shouted out “I have Cancer let me through” but I couldn’t verbalise why I thought I should get priority for rebooking, I froze sat down and waited till the big scrum was over, it meant a long reroute when I eventually got rebooked. Why when I can write so freely about having cancer couldn’t I say the word out loud. Why did I have a problem with how strangers viewed me or was it more to do with how I view myself now. Was it OK to pick when I wanted to be a patient and when I didn’t being a “well” stage 4 patient brings its own challenges?
I came up with a plan B, as an alternative to the job suggestion which I didn’t feel was that practical, making a decision to apply for an adult continuing education ACE course at UCC. I had debated going back to do a full-time honour degree, but the commitment time-wise was too much. I thought about how I would feel if I invested all that time and I got sick and couldn’t finish. I don’t think I have ever seen anyone respond to those what would you do if you only had a year to live questionnaires by saying sit in a classroom Monday to Friday. Although I have met someone recently in a similar position to me doing exactly that because it was always their dream to go to college, I have so much admiration for their determination.
I also thought about whether it was a waste of money, after all, I realistically won’t get to have a career in my chosen field like my classmates, if and when I get to graduate. All these questions swirl around in my head when I let them have space. Also swirling around in there is that realisation of how incredibly lucky I am to even have these opportunities after almost four years of stage 4. So many wonderful people I have gotten to know in that time have passed away from this disease. If I let those thoughts dominate I wouldn’t get out of bed in the morning. So I dumped those thoughts and joined the class. I was going to get a different benefit from participating it would be a distraction from my other reality.
People like to remind me “sure nobody knows what will happen”, there is some truth to that, but I have a different degree of certainty of WHAT will happen but the anxiety lies in when, so, that makes it hard to move on with your life. But living every day like it’s your last isn’t very practical and it’s certainly not the normality I crave after this length of time I’ve tried it and its tiring and the people you care about will find it hard to join in on the great adventure, so it’s not much fun on your own. Children have to be looked after, bills have to be paid, meals prepared, clothes washed, everyday stuff might be mundane but its also necessary, normal.
At ESMO in October “Life After Cancer” session I trudged in feeling there wasn’t anything I’d be interested in, after all, I could never visualise myself having a life after cancer. It was a very factually interesting presentation by Dr Dumas on the “Right To Be Forgotten” but Isabelle Lebrocquy whose personal perspective was really powerful highlighted the problems faced by survivors of childhood cancer. These young people who had endured the traumatic experience of cancer at such a young vulnerable age were also finding it difficult “moving on” because now they still faced the aftermath of a cancer diagnosis and it was still dictating what they could do with their lives. They were finding huge barriers to get mortgages, life insurance, adoption (remember the fertility issues relating to treatment).
I wondered what will happen to patients that are diagnosed in the future with Melanoma. Potentially cured by improved treatments, it’s our greatest hope that might be more rule, rather than the exception. Will there be a time when the “Right To Be Forgotten” becomes relevant to them. Will, they be allowed to move on treated with equity or always be labelled “Survivors”
There are so many fears and barriers associated with a cancer diagnosis, but living in a perpetual limbo where it feels the world moves on around you, without you, even though you are still very much here is particularly difficult, so I could really empathise with those young patients plight. I left the session feeling annoyed at the problems they face but with a deep admiration for the movement that is taking place driven by these young people, please have a look at their website to see what they are up to https://www.youthcancereurope.org
Maybe I will never truly escape the feeling of spinning on a roulette wheel wondering if the next time it stops I will be out of the game permanently, so while I still have some lady luck left, I will continue to try and live it in the humdrum of a normal life, like everyone else, not the boredom and fear of waiting for the inevitable final spin of the wheel