Dr Shara Cohen has long been involved in the world of medicine — in fact, her brother’s rare disease prompted her to train as a scientist in the hope of finding a cure. She is a committee member of FDUK, a charity that supports families who have members with familial dysautonomia, a rare disease occurring only in Ashkenazi Jews. She also has a niece with a rare genetic disease and has founded a charity, Rarecare UK, in response. But in 2013, her career took an unexpected turn. She was working on working on the effects of cord blood as an alternative for stem cells for transplantation when she was diagnosed with breast cancer.
“People didn’t know what to say to me,” she says. “Some people avoided me completely and one even said ‘I wish you hadn’t told me’. I was thrown into a whirlwind of hospital visits, tests and discussions, with little time to step back and think about what I actually needed to make day-to-day life.
“When I went into hospital, people were generous and brought me lots of gifts. I was grateful but it felt strange. It wasn’t my birthday or Chanucah and I didn’t want to be pampered. I wanted to get on with being treated and needed things that would help me on my way. But I understood. If you’ve never had cancer, how can you know what’s needed? And that’s why I founded Cancer Care Parcel.”
Her website offers gifts for people with cancer, whether just diagnosed, going through treatment, or convalescing. There are special boxes for children, women and men, as well as various themed boxes. “The parcels are carefully considered,” says Cohen. “Not only do they provide practical help for those going through treatment but they also give loved ones an ideal way to reach out to someone who’s just been diagnosed, when they might not know exactly what to say. It’s a different way to say ‘I’m thinking of you’ and to show you do care even if you can’t find the right words.”
The boxes may cost a little more than grapes or magazines but they are good value.
For instance, the The All-Purpose Cancer Present For Adults costs £34.79 (its contents are worth more than £40) and contains a water bottle (hydration is important); earphones through which to play relaxing music or block our hospital surroundings; an adult colouring book and pencils as a relaxing distraction; an eye mask; a reading light; bed socks; fun catchable bubbles and a neck cushion. Some boxes relate to a particular treatment, such as chemotherapy, or are designed specifically for people with breast, male or childhood cancer, for instance.
But the Cancer Care Parcel is about more than gifts. It also provides information for people who have cancer and their friends/family. “For example, advice on why your friend might be eating differently or on practical things that you can do to help” says Cohen.
What would she say to someone diagnosed with cancer today? “What is good advice for some people may not be good for others, so this is a very hard question. I would say that if it helps, there should be many people who have had the diagnosis that you have. If you seek them out and ask them questions, it may ease your journey. This helped me. But also be aware that each person’s journey is different.”
If a family member has recently been diagnosed, “the most important things you can give a person who has cancer is your time and a listening ear. Try to listen and don’t expect them to be anything (unhappy, brave, etc). There is no right or wrong way to approach cancer. Let them talk about it in their own time and only if they want to. And please don’t try to impose your views about cancer on them while they are trying to get to grips with the difficult journey that is facing them.
“I suggest you don’t tell people to stay strong or to keep fighting because if they ‘lose the fight’ the implication is that it’s their fault. Sometimes it’s a struggle to be strong depending on the diagnosis and it can be a burden to stay strong for others. It’s better to let them know that you will be with them for the journey, whatever that journey entails. One person said to me ‘I am sorry you have to go through this’ and I appreciated that very much.”