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Stories From Ireland, CLL Patient Remains Hopeful

Stories From Ireland, CLL Patient Remains Hopeful
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Published on July 16, 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 fourth post in a series of journal entries we have been sharing. Her first post can be found here: Greetings From My Cocoon.

Stories From Ireland, CLL Patient Remains Hopeful

I Needed to Leave the Cocoon…
May 6, 2020

I had a blood test. The big day involved wearing daytime clothes.

It was my first time outside in a long time… getting into the car, seeing the roads and the people, returning to the hospital that has always been my ‘safe place’.

This time it didn’t feel like a safe place… Things have changed. People are masked.

It was a fast and efficient appointment. I met only one other human. The phlebotomist. He was the first person I’ve had real non-virtual communication with, outside of the cocoon, in many weeks.

The conversation was brief and friendly between two masked humans.

The eyes say it all…. 

Is this how it will be from now on?

Roadmap: Back to The Future…

Where we’re going there are no roads.

Then Leo’s big announcement came on Friday. We gather as a family for these now regular addresses to our nation. Well, it’s something to do.

And there is always the hope that it’s all been a big mistake or a joke or the cure is here.

Despite the fact people are still dying every day and our ICUs are still filling up with COVID patients we are ploughing ahead with a plan to exit lockdown. We Irish are an optimistic bunch.

We have been given a roadmap back to the future. Phases of life on a slow-release program.

If all goes well we might be back in the business of life by the end of the summer.

And the big news: those who have been cocooning can go out. But only if they can do so safely.

Do not touch anybody or anything and stay two meters away from people. Let’s not go too crazy now. However, tempted you may be to embrace the first humans you encounter you must resist.

So the dystopian novelesque existence goes on. I took a walk.

My hairy dogs were grateful. We kept it short, aimed for wide footpaths, avoided people as best we could. No sniffing of other dogs’ derrieres allowed. The dogs will adapt.

And the Advocacy Work Continues…

Behind our screens, the CLL Ireland team are still busying away.

Please let us know if there are ways in which we can help.

The information keeps changing, it’s hard to keep up.

Maybe face masks are a good idea.

The much anticipated CLL17 trial has been postponed for now but hopefully will go ahead later in the year. So if you are waiting on this or any other clinical trial it would be really great if you could just press the pause button on your disease! Read the roadmap… Check it for timing!

I’ve been watching some of the CLL groups and how they are managing in other countries. While we have to be mindful that some of the international information is not applicable to us, there are some sites that are worth a look.

As always our good friend Dr. Brian Koffman from the US has a wealth of information on his CLL Society website. Brian is both a CLL patient and a doctor so he knows this disease from both perspectives.

Patient Power is also doing a great job with insightful articles and interviews with hematologists and experts.

Here at home, the Irish Cancer Society is really working hard at supporting our cancer community. Their free Nurseline is operating a new psychological support service. Please make contact if you are struggling.

Be brave. Ask for support. It’s not a sign of weakness.

These are extraordinary times.

Three Little Birds

The nest of baby starlings in my kitchen extension roof is bringing endless entertainment to the family bubble — who needs Disney+

The parent birds are working their little beaks off trying to feed their young and protect them from the circling magpies above.

We find ourselves humming along to the song Three Little Birds by Bob Marley, you know the one…

One day soon our little birds will leave their nest.

I hope they make it. I think they will.

I think we will all make it. 

~Jan Rynne

Originally published by Chronic Lymphocytic Leukaemia (CLL) Ireland on May 6, 2020.

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