Cancer. Today is World Cancer Day 2020.
The very word strikes fear into our hearts and rightly so.
It’s a huge deal.
Every year 9.6 million people around the world die from cancer.
That’s more than HIV/AIDS, malaria and tuberculosis combined.
Di Barnett formed The Daniel Barnett Arts Foundation after her beloved son Daniel passed away aged 19. Daniel was a very talented artist. The arts and creativity helped him and his family to deal with the diagnosis and treatment journey that Daniel was on.
After seeing how art helped Daniel and herself deal with their terrible situation of treatments, tests, travel and so much more Di started the charity to help others use art to support their journey.
However the journey after diagnosis can often be a long and lonely for parents, siblings and grandparents. So we asked our founder for her Top Ten Tips for parents – What do you wish you knew then that you know now. What advice would you give to parents facing the journey you started Fifteen years ago?
What advice can you give on World Cancer Day 2020?
Di Barnett Tips for Parents and Families of Children Diagnosed with Cancer.
Keep them positive.
Mind over matter is hugely important so help your children to focus on a positive mindset. Maybe give a teenager a journal or diary and perhaps a scrap book for the younger children. Help them to fill it with adventures and memories that can be reflected upon with joy and gratitude. Encourage them to keep up with hobbies and things that they enjoyed prior to diagnosis as much as possible. One of my most prized possessions are the canvas prints we had taken as a family. We had a photo shoot for all the family and these prints hang with pride of place in my home. A reminder of a wonderful day of laughter. Daniel loved that day and that is why Daniel Barnett Arts Foundation offers Gifted Memories. The opportunity to have a photo shoot either on location, at home, or studio based with one of our registered photographers. The family receive a wonderful canvas print of their favourite shot and USB or access to other photographs of the day. If you would like to be considered for a Gifted Moment Experience or would like to nominate a family. Contact Di from Daniel Barnett Arts Foundation
Trust your Gut Instinct
If you have doubts or need more information: ask. As a worried mum I took Daniel for frequent visits to the doctors as I knew deep down inside that how his illness presented was more than just growing pains. I knew my boy, as parents we know our children better than anyone else so if you have a gut feeling or you want a second opinion ask for it. Keep asking and asking, never ever feel fobbed off. You are your childs voice and champion. Ask questions no matter how silly you think they are. Join groups for support and if there is something you are unsure of ask. Keep a journal or book of appointments and ensure if you keep a digital diary that it is backed up.
Education and Schooling
For Daniel education was important, he loved school and learning. He was very bright and wanted to continue to learn throughout his treatment.
I wish there had been more support for home education for children, teenagers and young people to carry on with their education during and after treatment. It may not always be possible for your child to attend school. But they will probably want to feel ‘normal’ and so we need more support for home education – As a charity we can help support by signposting, funding and offering advice around home tutoring and education.
Friendships and Social Groups
We were lucky our friends were all good towards us. There was no weirdness that I know can occur. Maybe from fear – not knowing what to say to the parent and child. But the best thing to be and do as a friend of a parent whose child has cancer is to be there. They do not want flowers or food parcels (although they may come in really handy for hospital sleepover or extended time visiting and treatments) They want a shoulder to cry on, a listening ear and often some respite from the situation. Offer to babysit for any other kids, pop over for a cup of tea and a chat. Or invite them to dinner. If they don’t feel able to come to you offer to cook at their house. Hold out your arms to catch, hold or support them. Keep the communication lines open. Don’t shut them down. Ask them how they want to play the friendship. Do they want to be left alone or do they want a bottle of wine and a good cry. The worst thing you can do is think that you don’t want to bother them. They may be feeling totally overwhelmed and scared with the situation and so a normal conversation could be just what they need.
Partners and Close Relationships
Speak to your partner or main support. My husband John and I have a good understanding and shared the overnight stays in hospital, offered unconditional support to each other and kept communication lines open. You will both deal with the situation differently and have different emotions. But it doesn’t mean you have to be in different camps. The only way to be there for your child is to put on a united front. To support each other through the good and the bad times. If you are a lone parent it may be tougher especially if there are other children to support too. It may be worth finding a support network that are there and have your back. Offer to baby sit if relevant, feed the dog, check for post, wash some clothes and maybe do the ironing. You are not alone find your tribe to offer support and help on the difficult days. Find other support networks for parents of children with cancer there are many cancer support groups and societies – Your hospital should be able to advise.
Ask for help from others especially your partner you do not have to be in this alone at all.
I found that extended family found the period after diagnosis and during treatment very difficult to deal with. Speak to them and ask them to still include the family in social events and celebrations. As a family you can decide not to attend but you should always be included. Keep them informed as much as you want to regarding the situation and treatments etc but do not feel you have to be the font of all knowledge and share every single details. Keep communication lines open and ask for support. Guide them how to you want the journey to be. Maybe people would just pop in unannounced before but now ask for a call or text to check it is ok. ️
Continue with hobbies and interests. Art played a huge impact in Daniel’s life. Daniel was an artist with a huge talent, I sang and my other sons are musical too. Using the arts has a therapeutic effect and helps with stress reduction and creating something gives a huge feeling of self-satisfaction. It also helped to give some normality and escapism so keep up with interests and hobbies.
That is why the charity was created to help others gain the relief and therapy that being involved with art did for Daniel and the family.
Daniel has younger brothers were young when he was having treatment and as much as they loved their brother they didn’t want to be at the hospital. Lets face it hospitals are not the most exciting place to be there is nothing much to do! Parents focus is on the sibling who is undergoing treatment. If you are a friend or a family member offer to have the siblings at their home or your place if you have something to keep them occupied. As a parent could one of you stay home to care for the other kids or ask a family member or friend to help out. Maybe there are afterschool clubs that could help. Counselling and support may also be needed for the siblings so ask for support groups for them and ensure they get the help and support that is needed for them.
Extended Family and Friends
Respect Family Time if a child is having a break from treatment. The family may want to go on holidays, take some short breaks or have some time out with no visitors. It is important to allow space for families to deal with the situation as well as they can. If that means giving them a couple of weeks breathing space – give it to them. Remember it is their journey. Di states they did enjoy family times together and it is important for others to understand that this time is needed for building relationships, having fun and simply forgetting that they are going through the cancer treatment. They wanted to behave like a normal family with trips, arguments and laughter just like normal family life. So grant some space and be there on return when needed.
Live Love and Laugh
So much harder in reality as there will be tears, frustration, anger and resentment of course but Di thanks Daniel for the lessons he taught her.
To enjoy life. Enjoy every day. In Daniels case their time together was short but Di has many happy memories and some wonderful artwork as a reminder of her precious boy.
Live each day with love and joy. As time is precious. Even after Daniel has gone Di imparts those lessons through the charity and the work.
Maybe you don’t have first hand experience of Cancer
What can you do On this World Cancer Day?
We can work together to learn more about cancer and to find a cure. More then one third of all cancer cases can be prevented and another third can be cured if they are detected early and treated properly.
There still needs to be more research around cancer and extra support needs to be available, so more lives can be improved and saved.
That’s why World Cancer Day on 4th February is so important.
So what can you do to help?
• Take ten minutes to educate yourself about how you can reduce your risk of cancer and the issues that people with cancer are facing. Is there a hereditary cancer in your family or does your lifestyle put you at risk of cancer. Many cancers can now be attributed to lifestyle. Is there a simply lifestyle change that could help to reduce your risk of cancer?
• Write to your local politicians asking them to pledge their support to increase cancer awareness. A proactive approach to research and awareness can only be a good thing.
• Post on your social media about World Cancer Day to help spread awareness and get your friends talking about cancer. Share this blog post to help those parents of children with cancer and spread the word about the wonderful work of the Daniel Barnett Arts Foundation.
• Donate here to Daniel Barnett Arts Foundation to help support our wonderful cause.