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.

So how did it happen? As many of you know, Poppy was originally scheduled to finish treatment in May 2020. Chicken Pox put paid to that and the end of oral chemo passed by insignificantly, barely noticeable amongst the beeping of life saving machines and the replacement of it with an alternative cocktail of medication. Poppy left the hospital with seven daily lotions and potions to take and apply several times a day for the next month. She also ended up back in hospital three times as we desperately tried to get on top of her inability to keep any food down. Once we were able to tackle the vomiting, she was consistently on the up, improving and gaining strength daily. Each week, I felt like Poppy was finally back to full strength only to look back on the week just gone and realise how much improved she was yet again. It was a long slow process, coupled with the end of oral chemotherapy which had it’s own effects, such as the outbreak of a withdrawal rash. Yes, after two plus years of chemotherapy, Poppy’s body was struggling with the concept of going cold turkey and her face and neck were covered with a red, sore and itchy inflamed rash which has thankfully now died down with the help of another wonder cream! Poppy today is cheeky, full of energy and delighted to be freed from the shackles of the hospital. Highlighted in a sweet exchange with her sister, when Daisy enquired “Are you feeling poorly Poppy?” and she replied: “I’m not poorly anymore. I’m just Poppy.”

A few months ago, we were worried about how Poppy would cope with the end of treatment. For the first time since treatment began, she showed signs of distress at the thought of having her Port removed and the loss of treatment as a huge part of her life. A totally different experience when framed from her point of view. We saw her Port as a medically necessary device; the removal of which would be so important, not only signalling that it was no longer necessary but also limiting another constant risk of infection. For Poppy however, it was a part of her. She has no memory of not having it, and has always coupled it’s importance with not requiring a cannula (a traumatic early memory for all of us) For her, it was as significant as being told you no longer need your arm anymore, so we’re going to remove it. I’m sure the simultaneous start of lockdown also contributed to any worries she had. Life as she knew it had literally changed overnight and any constant at all had been completely removed, only for us to be contemplating further changes with treatment ending as well. Rather a lot to be coping with all at once, and it was really hard to know how to help her. Life took hold though, and in the hospital itself and that final, rather terrifying chapter, Poppy seemed to process it all in her own way. Perhaps the extra time allowed her to gather her thoughts, as well as the end of oral chemotherapy already happening meaning that it was more of a gradual process than it would have been otherwise but she seemed in a much happier place overall when the rescheduled date for her port removal came through. I think in some ways we all benefited from the extra time. It certainly allowed me to get my head around it a lot more and after initially feeling that I might be sad waving goodbye to the hospital, after our final extended stay, I was certainly ready to wave them off.

We felt a little in limbo waiting for our final appointment to come through. Treatment felt all but finished by then, but there was still the small matter of a final anaesthetic, lumbar puncture and surgery to remove the Port all in one go. The night before, I felt all over the place packing Poppy’s all important packed lunch for when she returned from theatre. The hospital of course provide her food, but after being nil by mouth, it’s always been our tradition to take her favourite foods to wake up to as smoked salmon sandwiches aren’t on the hospital menu as yet!

I woke before Poppy and had my own breakfast before we realised the car battery was flat. Always one last drama! Our kind neighbour helped us jump start the car and with that, we were on our way. Just Poppy and I due to Covid restrictions still in place. Poppy was the only one on the theatre list, so the morning passed quickly with many nurses popping in to wish us well. The Play Specialist also popped in not long before we were due to go down to theatre and raised the question of whether we’d like to set a date to ring the bell. Although no-one had done so yet, she said the plan for socially distanced bell ringing was for it to take place outside the hospital. We hadn’t expected for this to be possible, so had already arranged with the End of Treatment Bells charity to loan us a bell to ring at home. It had arrived the day before and we’d planned to ring it in the garden with just the 4 of us present. Poppy was aware of this but decided spontaneously that she liked the idea of ringing it outside the hospital and asked if we could do it later that day! The Play Specialist clearly wasn’t expecting that answer, but leapt into action, organising bunting, balloons and a gap in the Consultant’s schedule for it to take place later that afternoon. I played my part too, contacting Graham with the change of plan and ensuring him and Daisy could make it for the allotted time, as well as inviting grandparents, all at Poppy’s request. It gave me something to do whilst Poppy was in theatre! Usually I would wait outside in the waiting room, but Covid restrictions meant I was returned to her room and notified once she was in recovery that I could go back to see her. It was such a relief to receive that call and know that all had gone well. It took Poppy a little longer than usual to come round properly. She had a slightly different anaesthetic this time to ensure it lasted long enough to carry out the lumbar puncture and intrathecal chemotherapy, as well as remove her Port afterwards. Food worked wonders though and after 30 mins, she was her usual, happy, chatty self. Good thing too, as just another 30 minutes after that, it was time for the bell to ring!

We had packed a special dress for Poppy to leave the hospital in. It was bought to ring the bell in, but I thought it might be nice for her to wave off the hospital in it too. Serendipitous that we packed it ahead of time, as it meant she was party ready. I wasn’t! After dressing in the dark in hospital appropriate scruffs for the day ahead, Graham was bringing me a change of clothes but the chance to change was missed and it really didn’t matter. I did change afterwards in the car for a photo or two though! The girls looked beautiful – Poppy in her special, blue rainbow dress and Daisy in her favourite golden yellow dress. The smiles on everyone’s faces is what I’ll remember though. A crowd of hospital personnel arrived to share the moment with us, many of whom have played a huge role in Poppy’s care. The grins on their faces and tears in their eyes said it all about how happy they were for us all. The hardest part was not being able to hug anyone. That and reading out the end of treatment poem! I hadn’t expected that job to fall to me, and as I began reading “Ring this bell…” a wave of emotion overtook me and I needed a moment to compose myself before I could continue…”Ring this bell three times well, its toll to clearly say, my treatment’s done, this course is run and I am on my way!” Cheers and congratulations rang out and Poppy smiled happily while waiting patiently for her moment, needing some encouragement to know it was time. Loud cries of “Ring the bell Poppy!”, “Ring it really loudly!” followed and ring it, she did! The nurses and doctors took their turn to congratulate Poppy, with her consultant emphasising what a star she has been throughout treatment, and as the crowd safely dispersed, we were left to enjoy the moment further with our parents. The first time since lockdown that we’ve all been together, albeit at a distance. They really know how to rock a spontaneous celebration too, bringing bunches of flowers for the girls (which even coincidentally matched their dresses) as well as ice creams on the lawn and a glass of bubbles for the grown ups.

What a day. A sleepless night, early start, lack of food, theatre trip. and all the worry and emotion that carries, only to finish with a truly joyous and spontaneous afternoon.Ā  Driving home, I was hit with another wave of emotion, having remained mostly composed for the majority of the day. It all felt utterly surreal and still hasn’t sunk in some two weeks later.Ā 

We know that there will be a lot of healing still to come for all of us, but for now, we are thoroughly enjoying this moment together. We’ve always been warned that the end of treatment can be tricky to navigate, and I think the anticipation of it was, but now that we’re actually here, we’re all doing much better than we expected. Poppy is changing by the day, growing in confidence and it’s already evident how much her medication affected her, both physically and emotionally. She also recovered from surgery much better than we expected and was actually out cycling again the next day! Our cautiously planned celebrations were able to go ahead in the form of a fairy and flower festival at home, complete with a fairy afternoon tea and a magical tipi which arrived in the living room mid-afternoon containing a box of new books and an invitation to sleep the night downstairs, which was all met with the delight it was intended to spark. We spent the rest of the week having lots of fun together, whilst soaking up the moment and all that it means for our family.

Our first out-patient clinic appointment is already on the horizon next week, so the goodbye to the hospital was short-lived but it’s through a different set of doors and no longer accessed through the oncology unit, which makes a change. As for it feeling like the end of treatment, there is a lot to celebrate and be proud of, but our next steps will be cautious ones as we get used to those follow-up appointments every 4-6 weeks. A new chapter has begun for sure, but we haven’t finished writing this story yet!

Thank you all for sharing this adventure of a different kind with us so far. We’re over-joyed to be here in this moment, able to share it with you x

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5 thoughts on “Ringing the Bell…

  1. WOW !! šŸ˜ƒšŸ˜šŸŽ‰šŸŒŸšŸ„ŖšŸ˜ƒšŸ¤—šŸŒˆšŸŒˆšŸŒˆšŸŒˆ
    I have just caught up on this fabulous news,….
    reading from the chicken pox episode; + what a rollercoaster ride!! The emoji for the salmon sandwich is not very delicate, but it played its vital role ! šŸ˜ƒ
    Poppy looks amazing in her rainbow party dress…. With that very important bell šŸ¤—
    Well done, to you + all your family. So thrilled for you all . Love and best wishes,
    Norma Atkinson. ā¤ļøšŸ˜ƒšŸŒˆšŸŒˆšŸŒˆšŸŒˆ

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  2. So amazing to hear Poppy doing so well, she truly is a star. I read this smiling as I think of how far you have come. But I must admit I giggled when Daisy asked if Poppy was poorly, and the response of “I’m not poorly anymore. I’m just Poppy”. Pure delight ā­šŸ’–šŸŒˆ

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  3. I read this post with a smile of pure joy: the ringing of the bell by Poppy and the words of the poem signalled a hallelujah moment for you all. You have travelled the long months of treatment with courage and hope, strengthened by your love for one another and that of your families and friends for you. It was a privilege to share your journey. Thank you, Steph, for making that possible. My love to you all, Margaret x

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