I thought I’d follow up from my previous post 6 months ago, Advice on Living with Leukaemia (healthunlocked.com/tenovus/... ). The hope is that even if I just help one other person going through something similar, I have contributed to improving the lives of others. There are so many articles out there offering advice to sufferers but I want to talk about the people around them. As a friend, partner or family member, you are emotionally invested in their recovery and not being able to help a loved one when they are in pain, can be heart breaking. Therefore, I want to discuss the best way that we can truly help those suffering with Leukaemia.
For those that don’t know already, my friend Simon was diagnosed with Myeloma (leukaemialymphomaresearch.o... ) in 2011 and is still fighting strong. I have found that my role as a friend is basically to listen and be there to lean on if he needs it, but mainly to help him have a fulfilling life that doesn't revolve around his illness. It may sound obvious but there are way too many people in his life constantly trying to help or spouting new research at him. I am pleased that he does often come to me for some time away from thinking about it. I try to arrange new activities or suggest new experiences to keep him motivated. Of course, there are some restrictions to physical activities depending on what array of symptoms he is experiencing that day. But you get the idea. Supporting your friends or family suffering from illness, no matter what it is, also requires the ability to lighten their spirits and distract them. Reminding them to live life is a very important role.
In terms of supporting him with his illness directly, I do also like to research any new alternative therapies (curingmyeloma.blogspot.co.u... ) or tips that he may not have tried. However, I never bring this up on a social occasion and tend to email him with these ideas. We have agreed the email subject ‘A HELPING HAND' for any emails I send with tips on managing his symptoms. That way he can choose to open them when he is in the right state of mind. There is nothing worse for him than having a friend just randomly start talking about his illness when he is finally in a head space that makes him feel good and ‘normal’, as he puts it. Agreeing a ‘code’ with your friend or asking them how they would prefer to receive that information is a great way to ensure you don’t cause any additional emotional distress at inappropriate times.
Every time I help Simon alleviate any pain or reduce symptoms I feel like I am at least contributing to giving him a better life. One of the tips that he tried recently was actually nothing to do with herbal remedies, medicines, diet or exercises. The tip that Simon most appreciated was to remember that:
“It’s not what happens to you but how you react to it that matters.”
I framed a picture with this quote and gave it to him to put on his desk at work. He said that reminding himself of this has made quite a difference to his general attitude. He has now pretty much resided to the fact that he will be persistently having chemotherapy for the remainder of his life. The more accepting he has become of a future with chemotherapy, the more wise and confident he seems to be. Every day he is learning to manage his symptoms, including his emotional response to the illness.
I would be interested to hear from others about their experience as someone on the outside and hear any tips on how I could support my friend better