Things you could do and say by those who know

Please don’t…

• Do nothing and ignore me “because I didn’t know what to say.” I would rather people say the wrong thing than saying nothing at all.
• Excuse not texting because you think ‘we have a lot on.’
• Ignore my other children. It is lovely that you ask how my child with cancer is and how I am but please also think about my other children and my partner.
• Say, “we have been following your child’s daily plight on Facebook”. We don’t journal extensively on Facebook so I know that it’s just a platitude.
• Say “let us know the next time your child is in the hospital as we would like to visit.” And then not turn up.
• Say, “Well I didn’t want to bother you because you seem like you have loads on …”
• Tell me stories about grandparents, uncles, acquaintances you know who had cancer which is totally unrelated and who aren’t children.
• Say, “don’t worry it will all be fine, he will be fine, he is a fighter.” I know you say it because you don’t know what else to say but no one can see the future where cancer is concerned.

What surprised me …

• I thought were my closest friend but you haven’t been there … not even a text. People who I didn’t really know have been amazing.
• A journey like this has shown me who my real friends are and it has also introduced me to new friends.
• My friends of 20 years never once helped me or popped in to make sure I was OK. I found those who I’ve known longer didn’t want to be there.
• Someone very close to me never asked how my child was doing but a new friend from school came to the hospital and brought a goody bag of little things for my child and her sibling which filled them with delight. That meant a whole lot.
• You get to see the true colours of friends and family.
• The friends and family we thought would be there for us have been nowhere to be seen. No phone calls or texts.
• It’s been a very interesting learning experience of people’s behaviour. As others have said, I have been amazed at the kindness and generosity of people – some who were friends and some who we hardly knew. I have also felt a little disappointed/surprised by others, but luckily that’s in the minority.

In summary, here are a few wishes …

• I wish friends and family would just ‘do’ rather than wait to be asked. We have so much to think about, we don’t really know what we want. Plus (for us as a family) we don’t find asking for help easy as it makes us feel like we’re failing in some way. Simple things like cooking a meal, offering to babysit, hospital visits, listening to us rant, cards through the post, actually getting in contact rather than a ‘we are always thinking of you’.
• Please be more proactive and specific, not vague. Some friends said, “hope to see you soon” whereas others said, “when can I visit? Tues, Wed or Fri are good for me.” Guess which one I text back first and arranged to see?
• If you are offering to help, please don’t be too polite. I haven’t got the time or energy to encourage people to come or worry if they’ve been pushed out of line in the pecking order of visitors.
• Please understand that when we say we are OK we aren’t. Little things make all the difference. Normal life goes out the window. At the beginning, I was so busy concentrating on what was happening I forgot to eat.
• When you visit me in the hospital, turn up with food! One visitor brought me a big box of mince pies. If I’d popped into the shop myself I’d probably not have chosen them because making decisions about what to eat when your poorly child can’t eat anything without vomiting is difficult. Those mince pies were lovely.
  Some friends/coworkers are afraid to bug me because I must be so busy. In actuality, during treatment, there is lots of waiting and downtime that are better filled with connecting with people than more worrying. Stay connected with me!
• When our child was diagnosed, my head was spinning with thousands of things that needed to be done. Ask me for a list!
• Don’t forget the siblings.
• I really wish some people would have texted more often just to see how we were or to chat for a little about anything. It was pretty lonely being in there with little interaction with the outside world.
• I’m not gonna ask for help, so offer to do something specific, on a specific day. Then I can just say yes please or no thanks.
• Keep asking how my child and family are doing. Being over a year into treatment my child *looks* “normal” but if anything I am finally coming out of the fog of just getting by during that first year of treatment and still need support. I am eternally grateful for the people who always check in on me regularly because sometimes, they check on that one day when I really needed to know I’m not alone.
• Invite me to normal social events.
• So what do we need…company. Either in the ward or drop by the house when we are low in energy. We crave actual conversation & laughter but also for you to listen and develop an actual understanding of this world.
• The thing I would’ve loved most is a few homemade dishes sent up in Tupperware to the hospital as I got completely fed up with the limited choices and fast food.
• DO anything, something, whenever… send a note (send one a month), let us know we are on your mind even if we don’t know you (friend of a friend sent the nicest card), keep sending notes months/years past diagnosis, acknowledge that THIS SUCKS every part of it sucks, every part. I have been so blessed and let’s not kid ourselves money has helped the most with copays, food, and gas etc. but I have been most touched by the personal notes and stories of encouragement that seem to appear at just the right time.

Thank you to everyone who has contributed to this blog so openly and honestly.
Many of us are on a long, bumpy road and we would like to thank everyone who has and continues to support and love us.
We couldn’t do it without you!

This article was reproduced by with permission from author, [Kerry] and was originally published at: mrsbrown.me
10.04.18

Want to share your story? Please email mystory@childrenwithcancer.org.uk