A previously unpublished post from September


I wrote this post some time ago in mid September, but left it unpublished. I think it’s an important part of our transition from Delayed Intensification to Maintenance, so hopefully it’ll fill a few gaps and explain a little bit more about the Maintenance phase involves. Please note that I’ve left this post in the present tense it was originally written in so Poppy is not currently in hospital as you may think when reading it, but rather playing happily at her grandparents house with Daisy! x 

Saturday 15th September:

I was going to go to bed at 9pm tonight, but yet here I am two hours later, still wide awake with swirling, whirling thoughts churning around my mind. Thoughts that I thought I was too tired to write about, but actually thoughts that I need to release before sleep can take over. Twice this week, I’ve written late at night but left my thoughts unpublished. Words don’t seem to be stringing themselves together as neatly as I’d like at the moment, another sign that things aren’t quite as they seem in our household.

It’s been a funny sort of week. The end of Delayed Intensification has been followed by a sort of limbo…there’s a week built in as a recovery period, but it’s expected that most children will need longer than this before the final phase of treatment can begin. Poppy has a blood test at least once a week to see how each component of her blood is doing. The medication aims to keep her blood counts within a certain range and if they fall too low, treatment grinds to a halt until they rise back up again. Poppy is currently neutropenic – in fact, her neutrophils are lower than they’ve ever been and are almost non-existent. She is bouncing around and smiling from ear to ear, so all day I’ve heard from people commenting on how well she looks. That’s true – she does look well, but unfortunately her bouncing persona doesn’t tell the whole story, and underneath that smile lurks a great risk of infection and a high chance that we’ll end up in hospital soon with a high temperature.

With each new phase of treatment, I’ve had a bit of a wobble. There’s a huge sense of relief in having completed another stage, but also fear of what is still to come and all the unknowns that brings. I need to find a better word to describe this limbo – the weeks when medication stops and treatment halts. People often fill the gap caused by my hesitation with “a bit of a break”, but that doesn’t do it justice. Physically yes, I guess there is a break from treatment, but emotionally there is no break, no holiday from all this, no forgetting about cancer. I feel the same way about the end of treatment. Yes, that’s true that treatment will one day end, but is it ever really the end of cancer? We’ll move to a new goal then…the magical all clear at being 5 years past the end of treatment. Poppy will be 5 when treatment finishes and 10 when she receives the all clear. I’ve only just realised that myself. 10. Two years and three months of treatment sounded long enough. Of course, the frequency of check ups, tests and hospital visits will be much reduced from what it is now, but it’ll still be there. Almost until the end of her primary school education. Nothing else to do here but acknowledge that fact and move on. There is no use dwelling on any of this, it won’t change the outcome.

Maintenance begins with steroids, another reason my stomach is churning. The horror of steroids seems like a distant memory when we’re a few weeks past them, but the devastation they leave in their wake is truly unimaginable. Poppy still needs to endure a course of steroids another 21 times. Daily oral chemotherapy will continue for over 600 days and there’s around 90 weekends of antibiotics left to go. In addition to weekly methotrexate, vincristine once a month and a lumbar puncture every 3 months. Of course, these are just the scheduled events. Only time will tell how many unexpected visits to hospital we’ll end up having, how many late night wake ups there will be, how many sleepless nights filled with worry and machines buzzing.

The truth is that with each new goal we set ourselves, the goalposts move again. At the start of treatment, reaching maintenance felt like a huge accomplishment. It definitely still feels that way and we’ve celebrated as such. But I didn’t expect to feel quite so lost again now. Maintenance certainly brings things down a notch, but there will be other hurdles to leap across – Poppy restarting preschool and Graham eventually returning to full-time work. Perhaps this might explain why we take things day by day. Seeing these numbers is overwhelming, so instead we take each day as it comes and make decisions on the day based on Poppy’s health and the well being of all of us and what we need in that very moment. Right now, I think we all need a holiday. A chance to recuperate and appreciate how far we’ve come on this journey so far by spending some precious time together making memories.

A little longer to wait before that’s feasible though. Poppy was admitted to hospital this afternoon with the high temperature we have been anticipating since her blood results, along with a racing heart rate, a cough and a suspected ear infection. Unusually, Graham has taken her in, whilst I have stayed behind to spend some precious time with Daisy. In those early weeks I thought I’d never leave Poppy’s side again. I thought I’d be at every hospital appointment and hold her hand through every moment of her treatment. As her mummy, it felt like it was my responsibility to bear this with her too. As time has gone on, I know there is so much more to it than that. That letting go of her a little is another hurdle to leap over, and one that is so important for her too. To spend some time away from me, to spread her wings and gain some new experiences.

Not looking after myself won’t take this away from Poppy. I have no control over that. I can’t control her cancer, but I can have an effect on her happiness and well being. Daisy’s too. They are both at their happiest when the people around them are at their happiest too. That does mean taking time for myself sometimes. I’m writing this for my own benefit, so I’ll look back on it when the guilt washes over me, and know that there’s a good reason why I’m doing it…x

2 thoughts on “A previously unpublished post from September

  1. This was a truly awful time for you and Graham, and as I read about what the future treatment involves, I could only marvel at your courage in even setting it all out in black and white. Once you have acknowledged the scale of the illness, quite rightly, you can only handle events in small chunks. You are coping, and by caring for your own health, you remain the best wife and Mum for your lovely family. Margaret x

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  2. Wow. I think you’ve just reminded me and given me insight into the difference between what we expect of other people and what we expect of ourselves… Of course, it’s totally normal to feel wobbly in a situation where one has minimal control. Sometimes unbearably so. But what you have just said about self-care is so vivid, and so vital. The saying: “You can’t pour from an empty cup,” comes to mind. It is often counter intuitive to be ‘selfish’ or self-focused, (particularly for women in our culture I think). But stuff it. Sometimes one needs to be allowed to be flexible, or even flaky with arrangements. To listen to the quiet voice that says, ‘I just don’t want to.’ Those who matter will understand. They will still love you and everything you stand for. As for the guilt, well I can’t begin to imagine what that’s like. However, in the long game it is only wise to make some space for yourself to ‘take a holiday.’ It’s the only way to have something to pour from.

    That being said, there will be a freaking end to this. It is not forever. Only for now. And what’s more, you are not alone.
    Hxoxo

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