Talking to family and friends about cancer diagnoses

by Kinda Youssef Allamaa

After leaving the breast care clinic, my husband and I debated on when we should share our dreadful news with our close family and friends. My husband’s argument was: sharing early would lead to having more support when needed, especially with this dreaded news, while I didn’t want to drag anyone into our blind panic and worry until we knew exactly what we were dealing with.

I knew that the minute I started telling people, there would be lots of questions and lots of pressure because everyone would be hovering around me waiting for me to tell them how I felt and what I needed. But the thing is I wasn’t ready to open that floodgate, I didn’t know how to do this, I didn’t know how to be this person, I didn’t know who this person was or what she needed. I didn’t have any of the answers.

We talked about it for weeks on end, and we agreed in the end not to tell anyone until we got our head around the diagnoses ourselves first. To do so we needed to know more about the cancer and the treatment plan before we can start telling people. How did this happen? How did we end up here? And where do we go from here? And most importantly, what should I/we tell our daughters?

My MacMillan breast care nurse explained to us that children are generally less frightened if they know what’s happening, even if they don’t fully understand. Gave us few tips on when and how to tell them and introduced me to Fruitfly Collective - who runs Parenting with Cancer coaching program that help parents navigate their cancer journey through parenthood.

Once the diagnosis was complete and we had a treatment plan in place, we started telling close family and friends. I think there is no easy way to tell anyone that you have cancer, but the hardest thing that you ever have to do is tell your kids.It just adds an additional layer of stress and anxiety to an already traumatic situation. Followed by having to navigate cancer treatment whilst raising a family. I have one daughter and two step daughters and they were at the age of 11, 12 & 16 when I was diagnosed.

So when my husband and I made the decision to tell them two months after my diagnosis, we knew they were old enough to comprehend the severity of the meaning of the word cancer, but didn’t yet have any experience or understanding of the impact that cancer could have on a person or the family.

We thought long and hard about what to tell them, how and when and what impact the news might have on what they have going on in their lives at the time. Our eldest was going through her GCSEs and the youngest was going through her SATs exams at the time, so we waited until after they finished their exams before we sat all three of them down and told them together, allowing them to ask as many questions as they needed.

We chose to be open and honest with our daughters because we felt if there are gaps in our story, they are most likely going to fill the gaps themselves by jumping to worst case scenarios and speculating over what that might be. Telling my daughter that I have breast cancer is by far the hardest thing I ever have to do in my life.

We told them that I had found a lump and that it was a bad lump containing cancer. We also explained how important it was that we’d found it early, so it was treatable, and that doctors could do something about it quickly. They were obviously very distressed and saddened by the news but also very inquisitive. For a few weeks after we shared the news with them, they asked a lot of questions while they were processing the information, and I was able to respond honestly and openly since I had most of the answers by then to help reduce their worries and anxiety.

Our eldest understood very clearly the meaning of the diagnosis as a school friend had been recently diagnosed with cancer, but the younger ones were fearful and were more concerned about what changes to expect, their fears were not clearly expressed but it was clear that the upcoming changes to my appearance, due to the cancer treatment were at the forefront of their questions.

I was very happy for them to talk to anyone they needed to if it gave them the support they needed, close friends, family or school teachers. But I also wanted them to be able to speak to me directly. It was really important that they could tell me how they felt without fear of upsetting me. It helped me to help them understand.

With our family and close friends, my husband and my brother created a couple of whatsapp groups before I went into surgery to help keep everyone updated. This way I didn’t have to respond to the messages straight out of surgery. This helped to keep me focused on recovery and not feel overwhelmed by the need to reply to all the messages.

It’s hard when you are feeling so ill and know that everyone cares and wants to know you are going to be ok. But sometimes you just do not feel ok, and the thought of having to put on a brave face is too much, so don’t feel too guilty if you don’t reply to the messages or return the phone calls straight away, take your time and be kind to yourself. You are dealing with enough yourself and need to focus on you and prioritise you. I know it sounds harsh and maybe a bit selfish but this is what I wish I could tell the newly diagnosed me who spent a lot of time worrying about upsetting others.

It wasn’t until I lost my hair to chemotherapy that I shared my news on my social media platforms. I didn’t want to have to repeat my story every time I ran into an old friend, a mum at the school gate or a work colleague. I found that losing my hair was one of the most difficult parts of my cancer journey because it was an announcement to the world that I was sick. It wasn’t my choice anymore who to tell and when, besides if by sharing my news I brought awareness to the importance of self checking and made others who might be going through a similar experience feel less lonely, then my sharing this will have meant something.

If you are still in shock at the news of your diagnoses and worried about breaking it to your loved ones, please know you are not alone. Lean on the cancer charities out there to support you navigate your diagnoses and treatment journey.

Here are some tips that I hope you find helpful when talking to children about cancer:

  • Use simple, clear language and short sentences.
  • Keep information relevant to the current situation, rather than things that may happen in the future.
  • If you have young children, let them know that cancer is not like having germs that you cab catch - you can still sit close, hug and kiss.
  • Let them know that they can always ask you questions and talk to you about how they feel.
  • Be honest and tell them that you may not know all the answers to their questions, but you will try to find out and will tell them when you know.
  • Allow the conversation to be directed by your children’s reactions and the questions they ask.
  • It may be worth telling your child’s nursery, school or college as teachers and staff may be able to support them.