It’s only a day…

Except to me. Today is the day that my life, my children’s and my husband’s life changed forever. Today is the anniversary of the day I was told I had advanced breast cancer. The day my lump was confirmed as an invasive ductal carcinoma.

They knew it was bad, but not even the medical professionals knew how bad until all the tests were back. It was about two weeks later that I knew it was triple negative. A few days before this I had read about triple negative and what that meant for the future of patients with this rare form of breast cancer. So when they obtusely revealed that the tumour was oestrogen, progesterone and HER2 negative, I was able to say to my oncologist “so I’m triple negative then?”. He knew, by my knowledge and question that I knew what that meant. Trouble is not many other people do.

About six months after the 15th May 2018 I was confirmed as having secondary cancers in my contralateral (opposite) axilla (armpit). It had only been days since I finished my radiotherapy for my primary tumour. So since 15th May my treatment has just blurred into one long endurance test that keeps on coming. It is relentless.

Right at diagnosis I remember my breast surgeon telling me I’d have 18 weeks neo adjuvant chemo. 18 weeks – seemed like such a long time to put my life on hold for. I was trying to mentally calculate the client projects I’d have to juggle around this inconvenient blip. And yet here we are two years on and I’m still having chemo. My main concern now is running out of chemo options. I’ve now had eight chemo agents and one immunotherapy. Not including placebos. Each cycle is usually three weeks. That first bout was six cycles of three weeks. I’ve now lost count of the number of cycles of chemo I have had. It is the three week rhythm of my normal life. When it stops, I’ll have stopped.

I am now on my third line treatment (this is confusing terminology as its my fourth chemo combo, but they count from one when you get a secondary tumour). This is important as options reduce the more lines of treatment you have had. This is for a number of reasons:

  1. Physically running out of chemo agents for your cancer
  2. Strong indication of chemo resistant tumours
  3. Clinical trial eligibility – these pharma companies like their lab rats as ‘un-messed with’ as possible
  4. Cumulative side effects – there is only so much pummelling your body can take before your quality of life is so shit you say ‘enough, i’ll take my chance with the cancer, enjoy what time I have left.’

I have just finished cycle five of Atezolizumab and Eribulin. I don’t think it is working like it was. One more cycle and I will have done the same as that first 18 weeks of neo adjuvant chemo. Back in May 2018 it seemed like such a long time to put my life on hold for. Now it is my life. It is keeping me alive. It is holding the cancer train back. Just. I hope.

People are afraid of Covid-19 and friends and family worry about me having treatment in a Covid hospital two weeks out of every three, but the reality is my risk of dying of cancer is much higher. The maths is pretty easy. As a fellow metastatic Triple Negative Breast Cancer (mTNBC) friend of mine put it, the mortality rate for mTNBC is 100%, versus c3-4% for Covid-19 (or whatever they are quoting this week). Even without the figures, my eight year old gets the maths. She’s bright enough to know that despite me being on the extremely vulnerable list and us shielding, it is still better for me to go to the hospital and take the Covid risk. That said Covid and Cancer wouldn’t be a combo I’d relish.

I am very confused about how to feel today – my cancer-versary. I haven’t mentioned it to anyone (this post might be a giveaway). I didn’t stop crying yesterday. I went to bed at 5.45pm, which I’m sure was in anticipation of today. Earlier this week, my husband booked today off work. He said he fancied a break from work and wanted to get some jobs done in the house. I’m still in bed typing this, he’s in the homeschooling/housekeeper hot seat. I still don’t know if he has remembered or not, or if it even matters. Some people’s cancerversaries are celebrated as cancer is behind them, they are clear or have no evidence of active disease (NEAD). I’m not sure how to be on mine? I’m still in treatment. But that treatment is also keeping me alive.

Oncologists don’t like to talk about prognosis or estimated survival rates or the time you have left. It doesn’t really help and frankly they don’t know. I’m bucking the trend for average survival after secondary diagnosis, so maybe I’ll surprise everyone. On that basis today should be a celebration that I am still here. I am very much ALIVE! Despite a lot of pain, side effects and increasing disability in my right side, I do feel lucky.

Tired, emotional, but lucky. So let’s celebrate that.

15th May 2020

4 thoughts on “It’s only a day…

  1. Dear Claire, I was thinking about this being the 2 year anniversary of your diagnosis and Mark, standing on our doorstep to collect Tom and telling us the bad news. Claire, you are an inspiration to me and my family. I don’t know anyone like you, for your ‘not giving up, we can do this’ attitude. I know I don’t have your strength of mind and, when the chips are down, I know I am privileged to know you. I have drawn strength from you, Claire. I don’t know how you do it, but you do and I really love and admire you for that! Down, but in no way out! Go girl!! Xxx

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  2. Another thoughtful painful but incredibly powerful piece, Claire.
    You manage to tell the truth unflinchingly and at the same time find the positive upside in every deeply testing situation you face. I can only marvel at and admire your strength and resolve and send you all the best and lots of love as you continue to inspire me and all of us x

    Like

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