A few months ago, when the year 2024 was mentioned or I wrote down that date for future plans I often did a small internal happy dance. 2024 would put me in the yearned-for category of being in the, “ten-year all clear” post-cancer diagnosis group. A fabulous milestone to reach.
On the 22nd of August 2023, I was going to be nine years post-breast cancer clear.
Until I wasn’t.
Eight years of clear scans provide you with a small level of confidence. I had started to think about upcoming tests as almost routine, almost. I didn’t lose sleep the night before an annual mammogram. I didn’t have flashbacks or a sense of dread as I read the automated text message appointment reminders from the Radiology Company. Cancer was no longer at the forefront or in the background of my daily thoughts, plans, or conversations. I didn’t talk about it much as there were no longer any worries or concerns to unravel or debrief about. When I got asked, “How are you?” it was no longer followed by a deeply concerned expression on the face of the enquirer. The “How are you?” had become almost generic. I liked that. The breast cancer hormonal treatment side effects had got no worse or better and after nearly nine years you managed your pain, limitations, and your and others’ expectations.
Now, sadly my mortality and fear around cancer is right slap bang back in front of my face. And for those that may think, you could get hit by a bus tomorrow crossing the road so worrying about death is no different for everyone, well firstly that is not at all helpful or kind. Secondly, when crossing the road you can wait for hours if necessary to evaluate all risks, take preventative measures crawl on all fours if you must to guarantee a safe crossing. Cancer however is not a beast you see coming. And you can do everything “right” and yet still it comes at you. It is sneaky. It hides. This second tumour of mine would have been there for about 6 months. Growing in what I thought was a happy and healthy body. I had been doing a healthy eating plan for those 6 months. I had reduced my alcohol intake. All the while it was “there.” A small, aggressive cancer.
So how does all this make me feel?
I feel irritated.
I feel scared.
I feel my life is interrupted. Again.
I feel tired. Bone weary tired. Tired of my thoughts.
I feel lonely. Even with all the love and support in the world and I am so lucky to have lots of both, the weight of diagnosis is on my shoulders. I have to carry it no matter how heavy it gets.
So what do I know?
I know it is hard to move forward with cancer behind you, seemingly chasing you.
I know hormonal treatments as an adjunct therapy to “potentially” keeping cancer at bay, for me that means a tablet daily for 5 years, comes with many challenging, debilitating side effects.
I know, truly know, that I would rather have 10 years of wonderful than 20 years of nothing special due to drug side effects.
I know I need to protect myself from this being the thief of my joy. Don’t try and find a reason, a meaning, the why. Bad shit just happens.
So what do I do?
I put off nothing. All the big things I want to do I will do in the next 5 years. None of these “wait till we retire” plans.
I will continue seeing my Psychologist, Anne. It is so cathartic to speak completely freely, without any filter, and have someone not allow you to deflect the probing, pertinent questions. I will need her these coming months to work through a decision I have made.
So what have I decided?
I have decided to stop taking the hormonal treatment.
This is not a flip decision. It is not like deciding to never eat chocolate again. It is something I have spent a lot of time deep in thought about, largely alone because, at the end of the day, it is my decision.
My body.
My life.
I know I have the unconditional support of Andrew and my boys and that is all that matters to me. As I mentioned I will work through this decision more with Anne as I need to implement some strategies. If I am unlucky enough for cancer to return a third time I do not want to lay blame on myself or wonder about this decision. To that end, I did everything right last time, suffered greatly, and look where I am now? There are no “just do this” guarantees.
My radiation oncologist explained that I would be given an estimated two percent coverage by taking this hormonal drug for five years. An extra two percent chance of being here in ten years. I feel I can make other lifestyle changes that would equate to more than two percent and which will allow me to participate in life. Feel well. Feel happy.
This treatment so far has made me feel seedy, flat, unwell, anxious, tired, increased bone pain and I already have rheumatoid arthritis as a direct result of previous hormonal treatment. It affects sleep patterns, increased hot flashes (mine have been out of control), and just the mental load of taking that tiny tablet daily. I feel I am continually swallowing a time bomb.
I am in no way diminishing that two percent is a significant number and could mean a very big difference to other people’s diagnoses. This is just the right thing for me to do and we all walk our own, individual, unique paths.
So that’s my decision, my update. I am now extra excited that for my upcoming trip to the UK/Wales/Isle of Wight, I will be “cancer” medication-free. To be traveling with my brothers-in-law who are also living with significant, life-changing events will be so special. We have lots of memories to make together.
To be back in my favourite place in the world, the IOW with my family, it just doesn’t get any better than that. I was talking to my cousins Judith and Andy there last night and the serendipity of the timing of this trip.
My Dad and Mum were on the IOW as Judith and Andy awaited the birth of Adam, their second baby. On this trip we will now get to meet Adam and Cole’s own little baby, Mabel while his youngest sister, Lauren awaits the arrival of her second baby while we are there. On May 30th to be exact. My Matthews 24th birthday and my cousin, Aurelia’s 3rd birthday. I love these added family connections. (No pressure, Lauren.)
So much to look forward to already this year. Life goes on. Full circle in some ways but hopefully, just forward.
And hopefully, happy and healthy.
Lory Be 