The last Vincristine and Dex

I’m on a roll with forgotten posts! I’ve just found this one too. I think it says a lot about how I’ve been feeling the last few months that I was writing but not posting. This one is particularly telling in hindsight, with talk of celebrations feeling slightly too early. Little did we know then that Chicken Pox was just around the corner x 

It’s been a long time since I needed to write in the middle of the night! 3.30am and sleep alludes me. I read an article yesterday about the mementos people have been keeping of this time and how important diary entries will be in years to come to piece together what it felt like to live through Covid-19. The play specialist at the hospital today even suggested it will be a topic children learn about at school one day.

So yes, it was hospital today for Poppy’s routine monthly appointment. The last one of this kind. A surprise wave-by from Poppy’s reception teacher greeted us on arrival. I knew she was planning to time a run to go past our appointment, but didn’t know she was actually running her cancelled half marathon today. A poignant day for it, with all the money she has raised going to CLIC Sargent, at a time when they need monetary support more than ever. Poppy was delighted to see her (from a very safe distance!) and it made a happy start to an otherwise surreal experience. The hospital is much changed, even from a month ago when we last attended. All staff are now in full PPE and it’s actually quite hard to recognise people, even those we know very well. 

Our day started, as it usually does with Daisy waking first and as Graham and I headed downstairs with her, her first question was “What month is this?” I looked at Graham in confusion, thinking he must have prepped her but he shook his head. It’s the first time I’ve ever known Daisy to ask this and it seemed so funny that she should ask that question on the first day of a new month, especially the first of this particular month! May 2020. How many times those words have tripped off my tongue, usually in a glum tone representing the time left of treatment. And yet, here we are. May 2020.

We were prepared early on that end of treatment doesn’t always feel like you might expect. That the celebrations you’ve imagined for so long are tinged with a mixture of emotions. Some families experience a low feeling, which seemed unimaginable at the start. One thing we’ve certainly learnt is that there is no use in planning ahead! The date we had in mind for Poppy finishing treatment has actually moved a number of times and most recently today. The only remaining scheduled hospital appointment is for her final intra-thecal chemotherapy and the removal of her port. As of today and a slight revision to her medication schedule, that day will now signify the end of all treatment. Her oral chemotherapy will now finish the day before, which feels a more fitting end to treatment as her last day of treatment will now be in the hospital itself. It will however feel very emotional as only one parent can accompany her.

There’s been lots of talk of postponed celebrations, a reassurance from those around us that this will pass. We do know that and we also know that anything is possible if we want to. The thing is, what we’re celebrating is a moment in time. That moment is in May 2020. We can’t just pick it up and shift it. Yes, there may be things we wait for and one day, we will go on holiday again. But it’ll be a holiday of whatever that moment is, not a postponed end of treatment holiday. The time for celebrating is in the here and now. Many of you might be experiencing other celebrations during lockdown…birthdays, anniversaries. Those celebrations will also be different this year to usual, but I imagine you are celebrating those as they happen, not storing them up for when your favourite place outside your home might open.  Our celebrations will most likely take place spontaneously, as and when they are needed, much like we have done throughout Poppy’s treatment. We asked Poppy how she wanted to celebrate and her requests are no surprise…with party food and craft activities. The freezer is well stocked, and the Fairy Box has had a much needed boost of supplies, ready for when the time is right.

Ringing the bell? Personally, I’d rather Poppy did ring that on her last day of treatment. But only if the four of us can be there together. Many, many, many special people have played a important role in all of this, but having the four of us together is the very minimum we need to have together for that moment.

Throughout all of this, rainbows have played a special part. They have always felt like a special symbol of hope – linked right back to the day Poppy was diagnosed and a special friend sent me photos of the many rainbows she’d seen that day. More in one day than she had ever seen before. Rainbows are often talked about as occurring after the storm. I love that analogy and would urge anyone who needs a moment of calm to read Charlie Mackesy’s The Boy, the Mole, the Fox and the Horse. To be ending treatment at a time when the NHS is being celebrated more than ever and so many rainbows abound feels fitting to say the least.

In some ways, I’d be reluctant to call this a storm though. We’ve spent so long making hospital and treatment a happy place, that for Poppy, the end of treatment is a massive loss to her life. Especially now, when all around her is changed, and the support networks we’ve built up can only be accessed from afar. To call it a storm feels an injustice in a way. Though, perhaps it is like a swirling, whirling tornado. It whipped into our life one day and threw everything we knew into the air. Everything was stripped back and the things that fell down and landed amongst our feet were only the important things. Family, friends, love. And most of all hope. Above all else that has got us through this time, it has been the hope of reaching May 2020 that has kept us going. Kept us stepping one foot in front of another.

Today was an anti-climax of sorts. An emotional day for many reasons, but we’re not quite in celebration mode just yet. For a start, we have the last course of steroids to get through first!

We’re not quite there, but nearly… x

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