Fear of the unknown

We’re almost at the end of Poppy’s 1st phase of treatment, already 32 days into this initial 5 week schedule of care. A few days ago, we returned to Bristol for the MRD Test – another bone marrow aspirate to discover the level of Leukaemia cells left in Poppy’s body.

It felt strange to be back in Bristol. Only a few weeks ago, I was scared to leave the safety net of the hospital and couldn’t comprehend the idea of caring for Poppy at home. It has however, become our new normal. Twice weekly visits to Gloucester hospital, with a weekly visit from the CLIC community nurse.

Day 29 of treatment has been heralded as a big one since the very beginning.  Poppy’s 3rd bone marrow aspirate, following one at diagnosis and one on Day 8. The results of those first two were delivered the following day, but there’s a longer wait for this one as it’s examined in much closer detail and will determine what the next phase of treatment will look like.

There are two options – continuing with Regimen A or moving to Regimen C. We’re hoping for A. That would signal that Poppy has responded well to the initial phase of treatment and no leukaemia cells can be seen in her blood or bone marrow when looked at under a microscope. The doctors are keen to point out that we shouldn’t see C as a failure. It just means that they’ve learnt more about what they’re dealing with and need to try a different tactic. A highly tested different approach. I’ve learnt so much about Leukaemia in recent weeks and one of the main positives is that so much is known about it and how to treat it.

This week has been emotional, draining and exhausting. It feels like those very early days again, the ones between being admitted to hospital and receiving Poppy’s diagnosis. A short space of time between Saturday and Wednesday, but so much to absorb and understand. My thoughts and feelings are swirling again this week, at the same rate as my anxious tummy, trying desperately not to think of the results or what they’ll mean. It’s the unknown feeling which makes this all consuming. The sensible thing to do would be to put this completely out of my mind until the phone rings with some actual facts. Easier said than done of course, as I’m sure any fellow worriers will know. Backwards and forwards, what if this happens or that happens. A complete loss of control. I’m used to tests which you can study for, read up on your subject and make a difference to the outcome. I have no control here. No matter what I say or do, or how much I hope or think positively, these results have a mind of their own. In short, they will be what they will be.

Whatever happens, we’ll be back to having a plan. A detailed schedule of care, which will feel proactive and give us a clear path to follow. Taking each day in sequence, we will know the schedule of medicine and procedures to come for these next few weeks, though not the impact each one will have. That bit is a waiting game and part of the great unknown as this adventure unfolds.

I have fond memories of my extended family in Liverpool turning to song to express themselves, so it feels appropriate to end with one here. I can still picture my much loved Grandad and two fantastic Great Uncles swaying to the sound of the music (and the odd pint of Bitter) as their lilting tones carried this tune…

“Que Sera Sera, Whatever will be, will be. The future’s not ours to see, Que Sera Sera, What will be, will be” x

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