When Poppy was diagnosed in March 2018, I couldn’t imagine reaching the end of that year, let alone the next one. Now here we are arriving in the year when Poppy’s treatment will finally come to an end. An abrupt end too, as far as oral chemotherapy is concerned. May 21st 2020. Exactly two years to the day when Poppy began Interim Maintenance; the third of her five phases of treatment. That’s how the end of oral chemotherapy treatment date is calculated. There’s no end of a cycle, of a course, or even of a week! May 21st falls on a Thursday. We’ll give her last dose at home and will be hoping beyond hope that it really is her last ever ever ever dose of chemotherapy. There will be plenty of hospital visits and other medication and vaccinations to come, but as far as the gloves, the sharps bin, and the cytotoxic medicine go, these will be ceremoniously removed from our household.
Our favourite Christmas card this year spoke of the hope that this would be our last chemo Christmas. I hadn’t thought of it that way. Surprisingly, as I definitely calculated time in that way to begin with. Knowing that the two years plus of treatment to come would incorporate two Christmases, and two birthdays on active treatment. Now, just one of those milestones remains and it’s next month.
Having said all of this, I’m getting way ahead of myself. So many people have talked to us recently about how close we are to the end of treatment, but it actually doesn’t feel that way to us. Poppy has 5 months of chemotherapy treatment remaining. 140 days. At the very least, 200 beads of courage still to earn and one fifth of her treatment still to tolerate. And while I recognise that there is so much less to come than there has been, it still feels like a very long way to go. I feel lost when I look too far ahead. A future that is so uncertain it becomes scary to contemplate.
I like to think that we live most of our lives in hope. We see the value in grasping opportunities and recognise that life is for living. Whatever that may mean. Occasionally though, I still get lost to the fear. Paralysed by it and unable to find the joy. I think special occasions magnify that. It might sound strange, as you would think that every special occasion would be marked extra specially. But actually, the special occasions add pressure. And uncertainty. Nobody wants to wake up in hospital on Christmas Day, as a family divided. That didn’t happen to us, but I felt unsettled by the fact that it could for most of December. I didn’t fully breath a sigh of relief until Christmas morning. Because whatever happened after that, at least we had woken in our own beds and all been together to start the day. Weirdly, it wasn’t even the thought of being in hospital that concerned me the most. The hospital environment is as nice as it could possibly be given the circumstances we would be finding ourselves there, and I know that the nurses would have made our day as special as they could. For me, it was all about the uncertainty. The unknowing. For someone who used to manage a stationery store and looked forward to the blank page of a new diary, the lack of control and lack of planning is sometimes hard to bear. If we were going to end up in hospital, I’d rather have had it scheduled in than have to face the many on the spot decisions which an unexpected visit would bring. Who would go and who would stay? Would stockings travel (and how?!) Would we attempt to transport a Christmas dinner or eat whatever the hospital provided? Would we have a Christmas Day in hospital or hold off until we were out? I still don’t know the answers to these questions and luckily we didn’t have to make these decisions. I hope we never do. Sometimes there is no telling how you’ll feel until the actual situation presents itself, but unfortunately that doesn’t stop the worry swirling every now and then, like a dripping tap which you can’t turn off.
If I could sum up my expectations of this year in one sentence, I think it will be a year of healing. The first half will be all about getting Poppy over the finish line of the end of her treatment, and the second half will be about how we heal as a family. I know the healing process will take time, and certainly won’t be as abrupt as the end of the chemotherapy treatment. Poppy will take time to recover from the toxic drugs her body has been tolerating for so long, and the rest of us will be learning to adapt to another new normal alongside her. One with a goal further ahead than May 2020, which has been our aim for so long now.
Right now, what I need is to get back in the present. To feel the feels and push on through the fear to find the joy again. Get back to feeling whimsical and spontaneous. To dancing in the rain and not caring what anyone else thinks of us, as long as we’re still smiling. Because being alive and being happy are really the only things that matter. That’s how Christmas 2018 felt, and it was my favourite festive season ever. This time around, fear, pressure and uncertainty crept in and I haven’t felt myself since a fateful evening at Maggie’s when I learnt the devastating news of another family we know. It’s overwhelmed me since and I feel I’ve stumbled through December, feeling fed up of the impact of cancer on the many families in our world. Tonight, however is the first night I have felt hopeful again and that feels like progress in itself. January 2nd. An evening worth celebrating! A Thursday…
Happy new year everyone! Wishing you all heaps of good health and happy adventures. Thanks to everyone who has been by our side in 2019 and continues to help us strive towards May 2020 and beyond x