It’s official: chemo is done.
I didn’t expect to feel like a leaky faucet that can’t turn off.
The message is: you did it!
How I feel is: my body couldn’t take any more. And there is a long road still to go.
That is the reality I am still living in.
The neuropathy is better, but not better enough. In the last two days, I’ve seen a marked improvement, feeling like I’ve gone from about 50% sensation in my feet to more like 75%, which is fantastic.
I’ve been able to carry Rose up and down the stairs again confidently, which is a huge benefit.
But I do still really need a cane for public transport, crowded places, or uneven surfaces. I just can’t feel the ground well enough. And my fingers are still feeling the motor deficit effects as well.
I thought this might be a grey area, but as soon as my oncologist heard this, she said with absolutely clarity: ‘We’re stopping’.
She was very clearly that the harm outweighs the benefit of proceeding in these circumstances.
My body simply can’t tolerate any more. And to push past this point carries a serious risk of long term damage.
I do think stopping is the right decision. But there are a lot of complicated emotions present.
To risk serious disability for a marginal increase in lack of recurrence is not a reasonable trade off. Especially given that there are things besides chemotherapy open to me to manage my cancer risk.
The nurse specialist who sat in on the appointment walked me out. (She has been a wonderful comfort and hand to hold since the beginning of this journey.) made a comment about quality of life: without use of my hands and my feet, ‘what kind of life would that be?’
My answer: not ideal, but a liveable one. A year ago, I probably would have agree with her. Not anymore.
While I don’t want to risk nerve damage I could carry with me for the rest of my life, there is no question in my mind that it would be a life worth living. The key word remains: ‘alive’.
I told my oncologist I was relieved to be done, would need to meditate of the feelings around this. I’m finding it hard to let go of the fear of missing out on those final two Taxol treatments. (Not to mention, the two additional cycles of TCHP that will never be.)
My doctor told me: ‘Go throw a party! Have a good time, celebrate, get drunk! That’s what we do here!’ (While this might sound a bit callous written down, in the moment it was touching, warm, and funny.) Given the short notice, we settled for delicious coconut curry sent by a new friend who stocked our freezer in an act of unbelievable kindness, and root beer floats on the patio. Which felt about right.
My oncologist rightfully wants to recognise how much I have gone through, and give me the chance to get back to normal life.
But this actually feels terrifying to me. Between the exhaustion, my malfunctioning hands and feet, the brain fog, the fact that I still have chemo drugs actively working in my system, I am absolutely shellshocked. I’ll also be starting years of hormonal therapy in a couple of weeks on top of the immunotherapy I’ll need to carry on with for an additional nine months.
It feels like I’ve only completed leg 2 of a pentathalon. Even if the next stages are easier, I need to keep going.
And that stamina got tested today.
This morning, while I was getting lovely congratulations text from my wonderful family about being done, I was also packing my bag to go to the chemo suite.
Because even though yesterday I was christened ‘done’, today I had to go in for my immunotherapy infusion of Herceptin.
You know what? The process of getting it feels exactly like chemo.
I still got pre-meds that made me woozy and sleepy. I still had to go through the process of having port access and dragging a pole with me to use the bathroom. I still felt the vague sense of panic I have never been able to shake when sitting in that chair, even though things like good friends, food, and knitting can take my mind off of it.
I know that from here forward I will likely avoid the unpleasant merry-go-round of side effects that accompanies drugs classed as ‘chemotherapy’. That is indeed a blessing. But I will be on serious enough treatment that I need to go for a heart scan every three months to make sure I am not incurring permanent damage.
At every turn there have been surprises. As I step into something new, I can’t help but be nervous about what lurks around the corner.
I’m also scared that now I need to step back into daily life. I am not really up to that yet. So many things got swept to the side or fell through the cracks when I was ill. It becomes an even more daunting task.
There is a deep feeling that now it is time to pull my own weight again.
I’m scared that I don’t deserve any more support because I’m not technically ‘on chemo’ any more.
My family, friends and community have rallied around me. It has been mind boggling and unbelievably touching to see who shows up, and the incredible creativity and generosity people have in sharing themselves and their gifts.
I feel like I still need support to put my life back together. Does this change meaning chemo is ‘done’ mean that I am no longer entitled to it?
It is only in these last few weeks that I managed to turn chemo into a process that doesn’t completely devastate my body and my life. I was hoping to start gradually putting the pieces together bit by bit during these last 3 cycles. I was planning to start laying the groundwork so I could move gently back into normal life.
Now I feel like I’ve been thrown into the deep end.
I don’t remember how to swim.
There are so many people who have gone above and beyond for me. I want to return that favour and prove my worth. But in my brain, assuming the responsibilities of my previous reality calls up images of trauma – avalanches, crushing waterfalls, deep undertows.
Today, I have cried and cried. My wonderful husband pulled me together, and went back to the house for the pills I forgot to take, because I cried so long this morning I didn’t have enough time to eat breakfast, which is the normal routine where I take them. He called me from work to take five deep breaths together.
I am grateful to be done.
I want to be celebrating.
But the reality that feels most truthful to me is the one I mentioned at the beginning of this post.
My body has given out, and I cannot take any more.
I want to have a party, but maybe at the point when I actually feel done.
That is the time to celebrate.
I will know when it comes.