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!

I genuinely believe the current climate gives the best idea so far of what life is like for an oncology family everyday. Our aim has always been to keep Poppy safe and our family as happy as can be. In that sense, nothing has changed, except that the threat is more pronounced now. It’s going to feel like a long few months trying to protect Poppy, particularly as there is so much unknown about how COVID-19 affects children. Her weakened immune system would usually qualify her as vulnerable, but the unfolding situation is currently unclear and continually developing. We hope to have more information soon, but we appreciate the pressure the services are currently under and will await further updates when the information is ready for us.

For now, we are following advice from Poppy’s Consultants to continue sending Poppy to school as usual, though we fully expect that to change, whether it’s through specific advice aimed at childhood cancer patients, or simply the fact that the schools will be closed. We are awaiting clarification as to whether the advice to isolate those with underlying health conditions for 12 weeks applies to children, as it’s not yet clear if this advice is aimed at adults with these health conditions. The oncology team are working hard to collate information and advise us as soon as they can.

12 weeks isolation sounds like a long time to most people, and I’d firmly agree with that. Facing that also gives you some idea of why we made certain decisions throughout Poppy’s treatment so far, such as sending her to nursery part-time and why we were keen for her to be able to start school as planned, as well as enjoy after school activities such as ballet. Because you still need to live a life. To build, develop and grow under these unusual circumstances. Of course it’s ironic, that having almost safely navigated towards the end of her lengthy treatment, ballet has stopped and schools will most likely close before too long. Luckily for us, we’re well set up for spending prolonged time at home and in the garden, as we prepared for the fact that Poppy might not be able to attend school full-time by making sure we had plenty of fun ways for her to learn through playing at home.

These uncertain times also throw up questions about her last few courses of treatment (there is a possibility that her final Lumbar Puncture won’t go ahead) It’s unknown as yet, so for now we will stay in this present moment, but we also have to trust that the team will do what is best at the time and we know they wouldn’t make that decision unless it was safe to do so. We’re somewhat fortunate to be approaching the end of treatment, with a certain degree more of flexibility than at the beginning when it was very important for certain things to happen on certain days without any stray from the protocol. It also throws celebration holidays and exactly when will be appropriate to ring the bell into question, but since we were unsure of when to celebrate anyway, we had already decided that October/November looked more likely, which is also when Graham and I will also be celebrating our 20th anniversary of being together! The reason for the delayed celebration is that it will take approximately 6 months for Poppy’s immune system to recover so the next few months were already likely to be no different from the precautions taken whilst on treatment, even before COVID-19 made an appearance.

Having experienced periods of isolation ourselves, I was hoping to finish by reminding you of some advice that has worked for us at these times:

  • Try not to think too far ahead. The situation is ever-evolving and it’s best to live today and focus on tomorrow when you get there.
  • Keep breathing! Fresh air if you can, even if that’s just to sit in your own garden for a while and reset yourself.
  • Ask for help if you need it. We’ve had so many new offers from people checking in on us at this time and there are always people willing to help if you let them. Be specific with what you need. People will only be too glad of a way to help.
  • Take time to rest and refill your empty cup, whether that’s a bath, reading a book, or doing some exercise (there are lots of online videos for anyone self-isolating)
  • Try to keep calm and only read information from reputable sources, so as not to cause further worry.
  • Try to keep your thoughts in perspective. There is a lot of worry around, but ultimately what else matters except people’s lives? We said at the beginning of treatment that nothing else mattered except Poppy surviving this. We would rebuild her life and ours afterwards if needed. The same will be true here, with the added fact that everyone is in the same circumstances and will be facing a reasonably level playing field when things do reopen and resume.

All simple advice, which most of you will know already, but I figured a reminder wouldn’t hurt, especially as I also have experience of being unable to think straight when the pressure of the unknown mounts!

Thinking of you all, keep safe and look after each other xx

PS Since drafting this post this afternoon, the further advice we have been waiting for has come through. The main headlines are that it is advised for Poppy to no longer attend school and to remain at home for at least 12 weeks along with the rest of our household….I make that the 10th June! Past the end of treatment. How very different to how we thought these months might be….but her safety remains paramount and we’ll do all we can to make this another just another step on our crazy adventure of a different kind x

The updated advice from the CCLG regarding guidance for children and young people undergoing treatment for cancer can be found here: CCLG Cornoavirus Update 17/03/2020

4 thoughts on “What does it feel like to be an oncology parent?

  1. You are all constantly in our thoughts, if there’s anything you want/need then please say xx Doug & Sue

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  2. Lovely post hon, and always thinking of your family. We look forward to the day when Poppy and Kaiden can play together again. Lots of love xxxx

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  3. Thank you for sharing tips to help get through the pandemic. My thoughts are with you more than ever as you face 12 weeks’ lockdown. Love to you all. Margaret x

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  4. Stephanie, I read this a while back + I didn’t get round to replying, sorry! …things kicked off didn’t they + yes now we have had a tiny sample of your experience over the last 2 years .. isolation / hygiene etc .
    However, but without the additional worry of protecting a child who is undergoing oncology treatment. What an amazing person you are, with your extra stress + yet still find time to help others with your insight. Xxx

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