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Stories from Ireland, CLL Patient Chooses Gratitude

Stories from Ireland, CLL Patient Chooses Gratitude
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Published on June 29, 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 the 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 third in a series of journal entries we will be sharing. Her first post can be found here: Greetings From My Cocoon.

Stories From Ireland, CLL Patient Chooses Gratitude

‘…if we winter this one out, we can summer anywhere’ - Seamus Heaney
April 15, 2020

Extended restrictions as announced by Leo Varadkar on Good Friday are now in place. And so, another three weeks, at least, of staying home for everybody.

Oh, that pill is bitter… but it’s for the best. Time for a stiff upper lip and an extra dose of resolve.

Deep breaths people… it will get better. Leo said so… and I believe him. At least I’m trying to.

An exact date would be nice but an impossible ask. So, we wait, and we hope.

Leaving Cert 2020

[Editor’s Note: The Leaving Certificate Examination is the final exam of the Irish secondary school system.]

The announcement about the Leaving Cert had the biggest impact for us this week.

Child number two is one of the ‘Class of 2020’. The ones that will never forget this summer.

They will have stories for the grandkids for sure. Right now, I think that is a small consolation for them.

So apparently Leaving Certificate Exams are going ahead as planned but at a later date… so really not as planned.

Maybe the end of July or early August... TBC.

Timetable… TBC.

Details... TBC.

Possibility of schools accommodating students for two weeks in advance of exams, but this is… TBC.

How will the practicalities of social distancing play out? Well, guess what, that too is TBC.

And if students themselves are immunocompromised, what are the practicalities of sitting the exams in isolation? And what if they live with someone who is vulnerable and cocooning?

How does a parent stay away from their child and not offer physical support, when they are experiencing probably the most defining moments of their educational and academic lives?

Well, I guess we will see.

It seems everything right now is To Be Considered, To Be Cancelled, To Be Continued or To Be Confirmed.

Basically, nothing is certain. A recurrent theme these days.

Lifting Restrictions and Losing Sleep…

And then there are other questions.

If restrictions are slowly lifted after 5 May, and the world needs the people I am cocooning with back in a functional capacity, then I will be at greater risk?

Other vulnerable groups will face similar challenges.

Right now, we are cocooning and it’s hard, but what happens when some of the caterpillars become butterflies and leave the cocoon?

So, this week these are the worries I’m losing my sleep to.

We’ve invested so much, mustered up so much camaraderie and resilience to face this challenge, it would be such a pity to jeopardize it all by ‘falling off the wagon’… starting back too soon.

Risking the unimaginable.

I know I’m not the only one thinking these thoughts.

Team CLL Ireland

Our small CLL Ireland team is busy working away virtually in the background, gathering pertinent information, answering emails from patients and seeking clarity from the clinical community to inform our CLL patient and care partner community.

This is no small task — we are Zooming, we are Skyping, we are probing for accurate information… but sometimes we draw a blank.

The questions are not easy and the answers not always forthcoming. But rest assured we are trying every day to encourage, inform, empower and support our Irish CLL patient community.

As with many things we look to our close geographical neighbors in the UK for answers we don’t find here.

But of course, in this situation the UK landscape is very different:

  • CLL patients in the UK at any stage of their CLL journey have been told to cocoon for 12 weeks;
  • They’ve received texts and letters from the NHS with instructions not to leave home; and
  • There is an income support scheme to aid patients and their care partners to cocoon.

It’s a dogmatic approach but probably necessary since politically the UK reacted differently than we did to the crisis.

We also hear that the pharmaceutical company Astra Zeneca have made their drug acalabrutinib (Calquence) available in a frontline setting to patients in the UK who require treatment now and for whom a chemotherapy regimen is considered too risky during the pandemic. This is very welcome news for our UK CLL friends.

But I wonder if similar will or could happen here for Irish patients?

A Spark of Hope

And while the questions keep on coming, the answers are not coming so easily.

So many are in hospital and dealing with health and bereavement challenges.

So many are facing financial worries on a large scale.

So many are dealing with mental health issues.

And for them, and the rest of us there is nothing certain, so we can only try to keep a little spark of hope alight.

And so every day I am grateful for the family who is driving me crazy, the friends who WhatsApp, the lovely people I know because we are all in the CLL club, the sunshine and the fact that I am at home and safe.

~Jan Rynne

Originally published by Chronic Lymphocytic Leukaemia (CLL) Ireland on April 15, 2020.

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