Ringing the Bell…

Oh, how I have waited to use that title! And then some, as weirdly since it happening, I’ve almost forgotten to tell people about it. When Poppy was first diagnosed, I thought we’d be shouting it from the rooftops when she finally rang the bell, but as it happens, we’ve retreated into ourselves more than ever. Helped along by Covid-19 restrictions of course, but we have enjoyed the opportunity to enjoy the moment to ourselves, before the inevitable healing and processing begins.

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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.

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I composed this one a couple of weeks ago when we returned home, but haven’t been back to edit it or brave enough to post it. Some parts have been extraordinarily difficult to confront x

We’re home. Despite lockdown, it feels like utter freedom after being confined to just one room! There is nowhere we would rather be.  Home is comforting, familiar and most importantly it’s together. We’ve all spent the last two and a half weeks aching for the other half of our family and it is such a relief to be back together again.

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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.

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What does it feel like to be an oncology parent?

Cancelling plans, an uncertain future, washing your hands, keeping cleanliness a priority, minimising visitors into your home, avoiding high risk areas for germs, isolating yourselves when needed, living in your own bubble, ultimately aiming to keep a loved one safe at all costs…I could go on, but I expect this probably sounds very relatable to everyone on the planet at the moment!

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This year…

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.

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I wrote this during half term, but haven’t found the time to edit and post it until now, so here’s an update on some of Poppy’s school experiences so far…

Tuesday 29th October 2019

Poppy’s achievements in her first half term of school have been astonishing – she is managing full days and has acclimatised very quickly to school life. As previously mentioned she has also learnt to ride her bike, and most recently restarted much longed for ballet lessons. To say we are surprised that she is capable of a full day at school followed by a ballet lesson is an understatement. I initially booked the taster session to let her find out for herself that it may be too tiring, but as ever, she has grasped the opportunity and been rewarded with the leotard, ballet shoes and twirly skirt she has waited 19 months for. A fact not lost on her, as in the car home she had the following to say: “Do you remember that I used to do ballet and then I got poorly and couldn’t go? That uniform was pink but this one is lilac and I love it even more. I love it 5 times as much!”

In one of my first blog posts, I remember saying that I hoped one day we would look back on Poppy’s illness absorbed along with other family memories, hoping that though it would be a part of our lives, it wouldn’t completely define it. The way in which Poppy started that sentence with “Do you remember…” fills me with hope that this will still be the case. As if I could have forgotten how much we thought had been taken from Poppy. And that’s the difference now. At the time of Poppy’s diagnosis, it was moments like the abrupt halt of preschool and ballet lessons that felt like a childhood cruelly snatched away. We couldn’t possibly have foreseen that she would make up for those moments and more, all whilst still undergoing active treatment. I sometimes think Poppy’s bravery does her a disservice as people don’t always realise what she continues to go through as she often does it with such a huge smile on her face! Around the time of steroids, I feel tearful daily walking her into school knowing how much she is achieving simply by being there. I had genuinely expected  Poppy to manage half days at school at the most, and certainly wasn’t expecting her to go at all during steroids week. In her first half term of school, she has missed one morning and one afternoon session, and left one hour early on two other days one of which was due to a hospital appointment. Her attendance therefore stands at around ninety seven percent. A figure which when added to the total of two courses of steroids, two doses of monthly vincristine, daily oral chemotherapy, weekly methotrexate, a visit to clinic and a weekend stay in hospital for IV antibiotics is pretty remarkable.

Last Friday, Poppy came out of school muddy, wet and exhausted wearing her PE kit and her biggest smile yet. Her teacher asked for a word with me, and proceeded to tell me how proud Poppy had made her that day. It turned out the whole school had participated in the Daily Mile Big Day, and after receiving a dose of Chemotherapy treatment in hospital the day before and two doses of steroids so far, Poppy was determined to take part alongside everyone else! This achievement is right up there with some of our proudest moments, namely because of Poppy’s positive attitude, which is incredibly inspiring. We are so thankful to the school and her teacher, for giving her that opportunity and making it possible for her to join in. It would have been so easy for them to let her sit it out, but instead they treated her like everyone else and that’s exactly what we were hoping for when she started school. Opportunity is such a wonderful gift, and without it, we would have no idea how capable Poppy is. 

It can be so hard to strike the right balance between making allowances for Poppy’s illness and encouraging her to challenge the perceived stumbling blocks in her way. Around the time of the school settling in sessions, I had a meeting with Poppy’s nurse and her soon to be reception teacher. I found myself wavering constantly between explaining how special she is but also asking them to make sure she didn’t feel different to anyone else! Poppy has always had a very good grasp of her capabilities, and will seek to rest when she has reached her limit. Therefore, the ball lies in her court, and we have always actively encouraged her to take opportunities, but listened when she has had enough or on occasion, when it’s simply not been the day for it. My fear with starting school was that decisions would be made on her behalf and also that she would be sent home at the drop of a hat, or rather the flop of a Poppy! I needn’t  have worried, as the school have got to know Poppy very quickly and her recent parents evening verified that. Seven weeks which we are all very proud of. Full of hope and inspiration.

Now to half term holidays! And it’s already gone slightly wonky, with a hot Poppy in hospital with a temperature spike. The surprise tickets we have booked to see ‘The Stickman’ will still be used for a treat with Daisy and her first trip to the theatre no less. The reason for the surprise? Because we never quite know if we will get there! And this way, having known nothing of the trip, any disappointment is only shouldered by us and not Poppy. Of course, she’s likely to find out afterwards that Daisy went, but by then the moment has passed somewhat, and we’ll look forward to something else instead. Despite feeling disappointed that Poppy won’t be joining us, I am glad that Daisy will still be getting to enjoy a special time. Graham has gone in to hospital to stay with Poppy this time, in order that I can still take Daisy.  It’s odd being the one at home, waiting for news and not really feeling complete. It gives me some idea of what Daisy and all the other siblings go through. They are often the forgotten ones in this and as such, I will relish the opportunity to spend some special time enjoying a treat with her tomorrow.

The hope is that Poppy will be out in time for a few days break away courtesy of Eva’s Angels, but as ever, her health will come first and what will be, will be. In the meantime, I’ll be keeping myself busy, attempting to pack for a holiday that I don’t know when or if we’re going on! x

Poppy’s sticker of honour hanging proudly on the fridge x

Happy and sad tears

I must have been about 7 years old the first time I recall seeing an adult cry. The adult in question was my Nanny Evelyn and it was on Christmas Day at my cousin’s house. I remember asking my mum with deep concern: “Why is nanny crying?” only to be met with the frankly bonkers answer that “Nanny is crying because she’s happy.” Seeing an adult crying was baffling enough, but the concept of happy tears was well beyond me at that age. I have become well versed in it since, inheriting this strange phenomenon from my nanny, as well as my beloved auntie Eileen whose house we were visiting that December.

Poppy starting school has definitely brought out the happy tears in me. We had a lovely, relaxed and happy summer, and tried to keep the countdown to school light, even though we were secretly feeling that it was a pretty big deal to be starting school, aged 4, whilst facing childhood cancer. Part of that came from not knowing if Poppy would be well enough to attend as planned on the first day, and that’s the place the first happy tears sprung from…walking her in to the school gates and waving her off, I turned away and was hit by a huge wave of relief and happiness that we got to experience the start of school, exactly as it should be along with everyone else, without our day marked with cancer. Something that was simply unimaginable back in March 2018, and has still been hard to picture at many times since.

Over the summer, I heard of many woes from parents feeling that school would steal their children from them, that they’d hardly see them, that they were still so tiny.  All valid worries, and ones I may have felt myself before we were dealt our childhood cancer diagnosis. My overriding feeling now is that starting school is an absolute privilege. Not only to be living in a country which offers free education and to girls at that, but because our eyes have been opened to the flip side of childhood cancer. To the children who are too poorly to attend school alongside their peers. Or worse, the children no longer with us, leaving a gaping hole in their parents lives, as they come to terms with the flood of back to school photos every September, knowing their child was not one of the lucky ones. Because that’s what we are. Despite treading this tricky path, we are the lucky ones. The ones still receiving treatment and the ones still heading in the right direction towards that end of treatment bell. It’s thinking of those families not so fortunate that has stopped me writing about Poppy’s experience of starting school. Because I can’t quite fathom the gap between where I thought we would be, and where we actually are right now. And because I feel so desperately sad for all the families facing that reality in reverse.

We were so caught up in the moment of Poppy starting school that I didn’t find a chance to write. The wave of relief I felt at Poppy completing her first day, soon became disbelief when she managed the next two days in succession too. Somehow we had arrived at the weekend, which was due to be quiet and restful to counter balance the busy week, but somehow turned into learning to ride a pedal bike at Westonbirt Arboretum! As if Poppy hadn’t amazed us enough with her determination to conquer starting school, she also mastered cycling that same week with her beautiful gift from Cyclists Facing Cancer. Daisy was gifted a balance bike by them too, in a warm gesture which ensures siblings are recognised for their part in this crazy dance too.

The following week we joined the daily school run, and Poppy managed every morning alongside her classmates. Unbelievable. Slightly more believable is her spiking a temperature on Friday evening and spending the weekend in hospital. Her kidneys were struggling, which was suspected to be the change of water intake in the excitement of starting school and not drinking as much as she would at home. So began a fluid challenge, which Poppy aced and therefore overnight IV fluids were deemed unnecessary. IV antibiotics would continue and it was likely we would be allowed home on Sunday, when I was due to complete my first triathlon. Graham regularly competes in triathlons, and has been trying to get me interested for years. He managed to find one in Cheltenham with a swim in the Lido (the open water aspect of the swim has always been my stumbling block) Not only that but his trump card was that this one was raising money for LINC. I agreed. The girls handing me my medal at my first 10K earlier this year was a proud moment, and I love that they see both mummy and daddy being capable of sporting achievements.

Last year, we were privileged to be the first beneficiaries of an artisan craft charity fair, alongside another family in our town. Our worlds collided when our daughters were diagnosed with cancer within 5 days of each other. Devastatingly, that night in hospital we received the news that Eleri had passed away earlier in the day. She was 8 years old.

Any fears I had about completing the triathlon, vanished in the wake of this heartbreaking news, in addition to the hospital setting in which I heard it. My worries had been mostly logistical – about getting lost or not knowing which way to go, rather than whether I could complete the course. As it happened, I found the run harder than expected, and as I gritted my teeth to get to the finish line, I thought about how lucky I was to be alive and to be given the choice to face my fears that day. The children facing childhood cancer have anything but. They have no control, no choice, no say in the treatment they are given in the hope of saving their lives. Or rather if they do, it’s in the minor details, such as “which yucky medicine do you want to take first?”

None of us know what is around the corner. Facing a serious illness has helped us take stock of what we have, and as such, made us feel very grateful for each day. That doesn’t mean we’re happy all the time, rather that we’re learning when to embrace the sadness and when to let it go, and also how to celebrate achievements and milestones in the moment they occur.

Last weekend we were back at the craft fair, running the cake stall and raising money for two different local causes, one of which was Shine Bright Support. During Eleri’s treatment, her family set up this charity dedicated to supporting families facing childhood cancer. Their mission is simple: to provide the much needed gaps in support services required to navigate the trauma of childhood cancer by funding mental health nurses, counselling and packages of care.  They are a small charity with big plans, and they are already making waves in an area which is so desperately needed and so very close to our hearts. Earlier this year, Poppy was invited to design a T-shirt for them to help raise funds – you can buy one here or make a straightforward donation here. Your generosity is as ever, much appreciated x