When a year passes with nothing to report, you know it has been a good year for someone whose cancer is in remission.
We had Vega’s most recent appointment at the Marsden for, what now truly is a well fitting name, her long term follow up. 10 years since diagnosis, 7 years in remission, appointments now every 2 years. When you are a child or young person, much changes in two years. Vega was just starting secondary school, mid pandemic to boot, two years ago. Barely reached my shoulder. Now in Y9, making GCSE choices and my height, but at the Marsden not that much has changed. The receptionists are the same and are amazed at Vega’s size. I love that they always remember us, because even with all the horrible things associated with the hospital, these people feel like family somehow. I do want to be remembered and I want those comments about how tall Vega is, how much she has changed. They are evidence that she is well and we are moving forward.
While the Marsden remains as we remember it, much changes in follow up in two years- it was only last time we had an appointment that we were moved along to young persons services, and now Vega’s next appointment will be just before her 16th birthday which meant we are transitioning to adult care before long. I anticipated this a little when I asked Vega on the drive to the Marsden whether she would prefer me to not come in with her anymore, and told her that she absolutely has the choice now. She wanted to do this one together still, but as part of our appointment this time, our long term follow up nurse did talk Vega through her care plan. Very slowly over the next few years, Vega will have to take ownership over her long term follow up and along with that, her medical history. It is quite an odd thing, and I think I have written about this before, how this will be part of her whole life. Every medical questionnaire, life insurance policy applications, pregnancies… how often do you find yourself ticking those boxes about existing health conditions?
When the nurse spoke to Vega about the care plan, I had to remind myself that to me this all makes sense- I remember the medications and chemotherapy drugs, and even remember the side effects- but for Vega it must be very odd to now learn about all the things that have been done to her and her body those years ago. Of course we didn’t withhold any information from her, but a ‘magic sleep’ is a very different thing than intrathecal methotrexate, or a shot of poison in your spinal cord and brain.
In the past I looked at that care plan, and thought this isn’t what happened. The briefness and matter of factness of it held none of our pain and suffering. Gastro-intestinal issues translate into hours and hours of vomiting, diarrhoea, ulcers, bleeding and pain- oh so much pain- chemo therapy translates into weeks spent away from her own bed and family, missing school and friends. There is no record of how many doses of antibiotics she was given, how many x-rays, CT scans and port accesses, how often she cried. The care plan, on those 6 pages of A4 paper, made Vega’s treatment look like a walk in the park. And it wasn’t. It was years of horrendous, horrible shit. I know that, and Vega knows that too, somewhere deep in her body’s memory.
But now, I look at that care plan being handed over to my teenage daughter and I am glad it does not have all of that trauma spelled out. There is no need. There is no need to dredge it up every time you go to the GP, or the dentist. We have given enough of our sanity over to this and so I am grateful for the brevity of it now.
Vega took it as well as one can expect from her- she was quiet but answered all questions about her understanding of this confidently. Not every teenager has to consider fertility questions and talk about heart health so I am proud of her understated acceptance, not too dissimilar of how she accepted every intervention during her treatment as a small person.
I wonder if, at some point in the future, this will hit her like a brick, like it hits me every time I am in the Marsden. Or maybe it won’t and she will have gained nothing but more resilience along the road of this ordeal.
For now, that is it. One transition after another, as is life, with the very few and far between visit to the Oncology ward. Long term.
Ps: It is Black Friday in the UK today and everyone will be asking us for money. It feels really nice to support a charity on a day like today, when it is all about buying stuff. We continue to support Children with Cancer UK, do check out their video https://youtu.be/zjkqHH–sE4. Vega was part of an MRD trial and while she still continued her treatment on a high risk regime, the trial has made a huge difference to outcomes and long term effects for children receiving treatment for cancer.