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About this blog


About this blog

"I still, and will never stop, feeling so lucky and thankful that Vega has finished her cancer treatment. That first Christmas, chemo-free, will stay in my memory forever." Kathi, Vega’s mum, tells their story.

  • Patient Name: Vega
  • Cancer Type: Acute lymphoblastic leukaemia (ALL)
  • Age when diagnosed: 3

Christmas after chemo blog

18th November 2019

Christmas after chemo: Going back to normal is not easy

I still, and will never stop, feeling so lucky and thankful that Vega has finished her cancer treatment. That first Christmas, chemo-free, will stay in my memory forever. A Christmas with no waiting in hospital or having tests; a Christmas not spent struggling to remember it was Christmas.

But very quickly after treatment ends, the support systems we had relied on seemed to vanish. The message was clear: Vega is better. You are normal. Everything is normal. Go back to normal. But the impact of cancer on a family is not only felt whilst a child is receiving treatment – it lingers for many more years afterwards.

Going back to normal is not easy. There are the side effects from toxic treatments, the psychological trauma on the child, and there is the remaining, unrelenting fear in us parents, jumping to the worst conclusions at the smallest sign of illness.

vega girl looking at camera

Vega’s side effects

Vega has some side effects from her treatment. She had major gastro issues during treatment, mostly ulcers caused by the oral chemotherapy and the steroids and her digestive system is still very vulnerable even years after. She is suffering from chronic stomach pains and is having a bad time at the moment.

The treatment also affected her mobility a lot and while on treatment she was unable to walk for quite a while, suffering from bad neuropathy in her lower legs and feet, as well as hands.

It took a while for this to improve after treatment and she had difficulties with handwriting and balance. She still experiences neuropathy pains now – five years after her end of treatment date – and is really struggling to learn how to ride a bike because her balance is poor and her muscle strength in her legs is pretty weak too.

vega and her sister two girls with headbands

Part of the long term follow up ‘club’

We’ve recently joined the long term follow up service. You join the ‘club’ after five years in remission i.e. five years since the end of active treatment with no relapse. This is very good. A good club to be a member of (if you have to be a member of a club in the first place).
After years of ‘fighting’, curing and looking out for cancer, our first appointment in the long term follow up clinic was not at all about cancer. The long term follow up specialist nurse introduced herself to us and talked us through what these clinics are for. Not at all about looking out for signs that the cancer has come back, but instead looking forward to living with the history of a cancer. After years of addressing merely issues that related to Vega’s initial diagnosis and treatment, we are now with a team that, in comparison with the oncology team, has a much more holistic approach.

 

 

Vega girl with red scarf

Parent survey

We were presented with a ‘Paediatric Worry & Memory Thermometer’, one for her one for me. A two-page survey to complete which asks questions like ‘How have you felt today, yesterday and last week? Tick all that apply.’ and then offers options like happy or worried or angry.

The parent survey also included questions about what I am worried about- myself? my partner? my other children? I found myself thinking that these questions seem rather late. I feel as if I have spent five years putting myself together again, in a somewhat makeshift form, something that resembles my former self but really only looks like it rather than feels or functions like it.

Once we completed the surveys we were seen by the long term follow up doctor, who discussed our responses. We also talked about Vega’s stamina and lack of leg strength and balance issues. Long term follow up is all about long term side effects which are a large part of surviving cancer treatment, so we were presented with a Care Plan that summarised all of Vega’s treatment and outlined possible long term effects by organ- pretty much.

Worry and memory thermometer papers

Alongside all the anxiety is immense pride

As we talked through the plan, and I saw before me all the medications again, black on white, names I haven’t thought about for quite some time now, dates of administering, interventions, treatment protocols… I suddenly felt really dizzy. I was glad I filled out that worry survey before, because now I feel like I suffer from PTS.

But both Vega and I have become good at getting on with it and so we do. And alongside all the anxiety and dizziness is immense pride. Pride for everything Vega has weathered and the child she is today and for the splendid job we have done to put ourselves back together again.

Vega blog