Published on June 15, 2020
Jan Rynne was diagnosed with chronic lymphocytic leukemia in 2011, when she was just 39 years old. She and her husband Michael are founding members of CLL Ireland and live in Dublin with their four children who were under 11 years old at time of diagnosis. She started a trial with ibrutinib in 2014, and her bone marrow went from 96 percent cancer to .01 percent today and CLL remains stable.
Jan has been documenting her experience as a CLL patient during the coronavirus pandemic. This is the first in a series of journal entries we will be sharing.
Greetings From My Cocoon
March 21, 2020
So the world has turned upside down in just a few short weeks, and I find myself wanting to record the experience.
Maybe it will help others in a similar situation, maybe it will be helpful on the other side of this to remind us the lessons we are learning, maybe I’ll give up as soon as I start…
The one certainty we all have is that nothing is certain.
As a CLL patient and member of the ‘vulnerable’ community that we’ve been hearing a lot about, my family and I have been slightly ahead of all this in terms of infection control. Since I live with a compromised immune system already, I was that strange lady wiping shopping trolleys and bringing my hand sanitizer to public places.
My husband and four children have learned to be painfully aware not to hug me if they’re unwell. Generally, I avoid places that are crowded unless I weigh up the risks versus benefits and every visit or every outing is considered.
But this … this is a whole new existence.
This week I was relieved to learn that the novel therapy drug, which I receive via a clinical trial in the UK, will be posted to me.
This is an enormous relief. I have been waiting for the courier since yesterday. My stocks are running low and I can’t contemplate not having this drug available to me.
Ibrutinib (Imbruvica) has been my best friend for six years now … we disagree sometimes like all friendships, but it polices my dodgy B cells and looks after me and for that, I am very grateful.
…then bad news
The other treatment which I have learned to rely on is my IVIG (Intravenous Immunoglobulin). These infusions have been, for me, a monthly regularity for many years. They keep my levels up and help me fight infection. I get a lot of infections. I take a lot of antibiotics. This treatment helps.
But yesterday (Friday 20 March) I was told that stocks are running low as it also helps people with Covid-19.
So, for now, my IVIG treatments are cancelled.
Clearly, not the news I wanted to receive (especially on my birthday) and for all of us receiving IVIGs in Ireland this could be a scary new development.
And we need to “Cocoon” soon
But for the most part, I have already been doing that with my family – especially since the schools closed.
The only exception is that my husband sometimes ventures out shopping for our supplies. He takes precautions, and when he returns, we wipe all purchases with antiseptic wipes.
I find myself asking if this is extreme? Or is it even enough?
So for now and the foreseeable future the six of us will be spending lots of family time together.
The teenagers are not happy and were resistant at first. Now more of their friends are staying home and FOMO (fear of missing out) is not as strong.
We find ourselves watching lots of movies and cooking more (no takeaways here either… or again is this too extreme?). Even conversations have been known to happen. So, some positives at least.
But in addition to being a patient – I’ve now become a teacher, a counsellor, chief cook and bottlewasher, wife, mother, and daughter to a now physically separated elderly mother.
The challenges are frequent and daily… but I’m sure that I’m not alone in our CLL community in that.
Originally published by Chronic Lymphocytic Leukaemia (CLL) Ireland on March 21, 2020.
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