Waiting and Wishing

I’ve just found this draft post which I had seemingly forgotten about! It was written about a month ago on June 20th so here it is to bridge the gap between Poppy recovering from her illness and and waiting for the last part of active treatment x 

There have been times when it feels like every invitation we’ve received has been countered by “I’m not sure how Poppy will be”. I’m rarely inclined to commit to any event, especially one in advance. Looking back at the last year of Poppy’s treatment, I’ve realised that she has actually stayed extraordinarily well for the majority of that time. However, my fear levels never really adjusted from the initial six months when we were in hospital 3-4 days a week with additional stays on top of that.

The last year has often meant things being okay, until they’re suddenly not okay. Poppy’s recent illness was a perfect illustration of this. We started the week thinking we were going to be sent home straight home, only for her to be speeding to Bristol in an ambulance a mere six days later. Just the day before, I was already thinking that Poppy was poorlier than I had seen her in a very long time. She hadn’t eaten for the entire stay so far. That didn’t stop her from commenting at the end of that day: “I’ve had a great day today.” For context, she had spent the majority of the day wearing an oxygen mask with numerous prods, pokes and medicine. We did however have a dream team of nurse and health care assistant looking after us, neither of whom we have met before, who helped us navigate each moment. Communication was excellent, and I actually kind of understand why Poppy felt it was a great day. It was still an extraordinary observation and reminded me so much of her very first chemotherapy treatment when she thanked the play specialist for having us and said she’d had a lovely time.

Heading out of active treatment means adjusting again. I’ve been so preoccupied by Poppy’s recent spell of illness that despite the delay, end of treatment feels like it has really crept up. We’ve been in a strange sort of limbo, with the end of oral chemo replaced by such a tremendous amount of medicine, that we hadn’t even really noticed, bar the fact that we don’t need to wear gloves for this. We also haven’t had a date for her last lumbar puncture and port removal, so after priming ourselves for May 2020 for so long, it suddenly feels as if we’ve had extra miles added to our race at the very last corner.

After years of having weekly blood tests, we were slowly edged into these coming to an end by Covid-19 which meant some patients were deemed eligible for fortnightly blood tests to reduce the amount of contact Poppy has, as well as the workload of already over stretched staff.

I can’t quite believe I wrote that update from Bristol on the night we arrived. It felt much like at diagnosis when I just wanted people to know as soon as possible. I can’t explain it, but I just needed to blurt it out. I was terrified of receiving an innocuous text along the lines of “How are you?” only to have to reply with “Well, actually….” I don’t know why that thought was so terrifying, but I guess it comes down to being able to control small elements of an uncontrollable situation and being able to tell people on our own terms rather than it being found out another way. I also didn’t know what to do with myself at that point of the evening, I think I was in shock at how things had escalated. Again, finishing up much like we started in those scary, early days when we were desperately trying to process what was happening and hope for the absolute best.

So what now? What next? We have just received a date for Poppy’s last lumbar puncture and port removal next month. Once she has recovered from that op, we intend to have a long awaited celebration for the four of us at home. A homemade fairy festival, featuring many of our favourite things; books, music, dancing, laughter and to round off – a teepee sleepover in the living room. I’ve already contacted End of Treatment Bells charity to request a bell to ring at home. They’ve been kindly lending out the same bells they send to hospitals for people to mark their end of treatment during lockdown. I know many of you had May 21st marked on your calendars to celebrate with us, and we’ll let you know when our new celebration day will be so you still can.

Does it feel like the end? Not really. Our lives have been irrevocably changed by childhood cancer, and I can’t imagine we’ll ever shed the day by day living or other ways our lives have adapted. Much like I hope the lessons you’ve learned from staying at home will stay with you, we are strangely grateful for the spirit in which our lives will be forever lived. When Poppy was first diagnosed, any agenda except health and happiness was firmly on pause and we’ve experienced much of the same this time during this pause, our only difference being that you are all paused too.

We’ve been advised for school and work not to return until September at the earliest, so we’ll be adjusting at home, finding joyous moments in the ordinary. By the time, Poppy can return to school, her immune system should be on the way to recovery and things may well feel different. At the moment, I can’t quite imagine shedding the fear but I hope it will fade in time. I always said this would be a year of healing and adjusting, I just hadn’t counted on quite how much! x

 

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