To hear the words you have cancer is devastating for a young person and the whole family surrounding them. There will be an overwhelming feeling of shock and thoughts of ‘how can this be happening to us?’ Each member of the family will be dealing with different emotions ranging from denial, shock, rage, disbelief, sadness, fear and loss. Parents will be trying to be strong when inside they will be struggling to breathe; siblings may feel jealous of all the attention their brother or sister is getting; grandparents are feeling for their own children having to go through this as well as watching their grandchild dealing with the treatment. It is a very complex time for families and each family deals with it differently.
Many families will be told by well-wishers to stay positive and they know what it is like as their mother had cancer. It is NOT the same at all! Unless you have actually had a child with cancer you cannot even imagine what it is like. How could anyone understand? So who is there to talk to? Will your friends try to understand? Will they stay away for fear of saying the wrong thing?
But what about the young person? Who is there for them?
Not only have they had the trauma of a cancer diagnosis, aggressive treatments, and isolation they then have to watch their friends move on with their lives whilst it feels like their own life has stopped in its tracks and looks like it will take a very different path.
Teenagers and young people are already going through emotional and developmental changes therefore they are hit hardest psychologically. As Tom said in his Royal Albert Hall speech, teenagers are a very different species to children and to the older generation. They have very specific needs and their brains are still developing so each interprets their diagnosis and treatment differently. Many will be going through puberty and experience unique psycho-social impacts. This can affect their identity, sense of self and body image. Many are beginning to explore relationships and need interactions with their peer groups.
So what is the problem?
Every young person, especially during the pandemic has suffered some sort of social isolation but none more so than those with cancer. Each one is vulnerable to life-threatening infections and it is imperative they are kept safe. However, this leads to an increase in anxiety and loneliness. There is a real worry that the lack of psychological support will affect their long-term health. There is a call for ongoing access to vital support services to help alleviate this problem. So many youngsters have had to stay in hospital alone which is incredibly isolating and stressful – not just for the young person but also the parent. I cannot imagine having to let Tom go into hospital to receive treatment without me glued to his side. And he needed me as much as I needed him. This whole situation is unthinkable.
How does The Tom Bowdidge Youth Cancer Foundation provide emotional support?
- It creates environments where young people receive their treatment in an age-appropriate facility where friends and family can visit freely. This is especially important where they cannot access specialist teenage and young adult units. We look for where a room can be set aside and decorated with an appropriate feel. Mood lighting, furniture and Smart T.Vs all help with setting the scene. Staff should encourage the young person to bring in things from home to make them feel as comfortable as possible. This is not quite as easy if they are just in a hospital bay.
- It provides mobile phones so that young people have a lifeline to peers and family through text, phone calls and WhatsApp groups. Social networking sites are also a vital point of contact and help them stay connected so they don’t feel left out of the loop.
- Obviously it is important they can access the internet to allow this. Tom thought his right arm had been cut off when he was in the old Colchester hospital because there was no internet!! It just added to his stress levels.
- It provides laptops and iPads so that the young person can access schoolwork and courses. This has been proven to give them a reason to live because they can see they do have a future ahead of them and they will be able to pick up their life where they left off. It allows them to access support groups where they can talk through their issues with others going through the same thing. It allows them to play computer games online with their friends just like they would ‘normally’.
- It works in conjunction with Teens Unite and SCOR, its corporate supporter to put on specialist workshops. Thes workshops called ‘What’s Next? are designed to look at the young person’s strengths and build on those taking them out into the world. The young people leave armed with skills on how to present, create C.V’s and a belief in themselves again. The aim is to demonstrate to them that they are employable and have as much, if not more, to offer than someone who has not had cancer.
- The Foundation is open to any member of the family that needs support. No-one is better placed to talk through issues, worries and thoughts than Richard and Nikki. Parents are free to ring, email and in some cases meet face to face. Sometimes they just want an ear to listen and other times they just want advice. What the Foundation can be sure of is that it has two people that know first-hand just what they are going through.
