Published on June 22, 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 the 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 second in a series of journal entries we will be sharing. Her first post can be found here: Greetings From My Cocoon.
Clarity, Hope and the New ‘Normal’
March 28, 2020
In the cocoon the days are long, the hours and minutes tick slowly by but in the outside world the COVID-19 crisis is moving at breakneck speed and it seems the information I took time to learn yesterday is rendered irrelevant for today.
The Search For Good Information
I spent a lot of time this week seeking out information that might clarify just how medically vulnerable I am considered. A ‘risk analysis’ if you will... it seems that scouring literature from other countries may well lead us down rabbit holes.
The information we had been looking for came from our own HSE (Ireland’s Health Services) last night.
In the section that reads ‘what do we mean by extremely medically vulnerable’…
“3 b. people with cancers of the blood or bone marrow such as leukemia, lymphoma, or myeloma who are at any stage of treatment.”
So two weeks into the search for a definitive answer it seems that we took the correct approach to cocoon and I will now be second-guessing those few occasions when hubby had to leave the house and trusting that he took all the necessary precautions.
The decision for us as a family is now that no one will leave our house for any reason, not even that one lonely walk that ‘regular’ people are allowed…and we will need a plan around the groceries, etc.
But Help Is Coming…
Fortunately, help is already on the way it seems.
A friendly Garda called yesterday to offer help in this regard. We’ve been registered as a vulnerable house. And our first online food shop was ordered a few days ago and is due to be delivered today. So, we will not starve.
Six people with very little else to do, eat a lot!
I wonder does the Garda knows what he's offering. In the old days, before COVID, I had the freedom to shop as we needed. Now it must be planned. My head is not in planning mode. But I will try.
…And My Magic Pills Arrived
Thanks to the fabulous team in the NHS and the trials team in Leeds, the magic pills arrived this week. I am so grateful. My thoughts are with them and all healthcare workers around the world. In Ireland, we lost a healthcare worker this week. Thank you, Hozier, for your rendition of the parting glass last night.
Such relief in such a small package. A three-month supply of ibrutinib.
… and it makes me wonder, where will I be, where will the world be when I get to the last pills in the last bottle… what will 3 months do for us?
And I had a phone consultation with my UK trial doctor.
The most pressing question… 'are you staying inside?'… yes. Good. Keep it that way. Stay Home. Cue the ominous music.
Panic and Promises
Of course, there was a little cough this week. And of course, my mind went to that horrible place. And then I reminded myself that I often get coughs and sniffles. I take prophylactic antibiotics to help with that. And an occasional inhaler. So I talked myself off the ledge.
And in this new way of living, I make a lot of promises…
- Yes we will celebrate ALL our birthdays after this.
- Yes I will bring you to that restaurant after all this.
- Yes you can have all the lads over for a massive big playdate/party of the century...after all this…
- Oh for sure we’ll see the new James Bond movie...after all this.
And This is How We Do Death Now
A lifelong friend lost her father this week.
How different is this new place where we can't have a packed church and a wake and singsong afterwards… and an embrace?
How do we now 'do death'? I watched the little service on my laptop, live-streamed from the church.
I’m not sure if I like this voyeuristic approach.
I sent a virtual hug. Sometimes virtual hugs just don’t cut it.
I hate that the real thing has to wait.
This Too Shall Pass
But the sun did shine some this week, and the garden is starting to look like a garden again.
And I took my coffee outside and looked at the sky and it is still blue. And a little nest of starlings has made their home in the roof of my kitchen extension.
There are reminders all around us that this time is temporary and that these days too shall pass.
Originally published by Chronic Lymphocytic Leukaemia (CLL) Ireland on March 28, 2020.
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