It is logical of course, but how good does it feel when you are able to talk to someone who has experienced very similar issues to yourself? Sure, it doesn't change your own situation, but you certainly feel a lot more comfortable knowing that the person you are communicating with really 'gets' what you are talking about.
Our passions are raised, when we are talking about football, music, cars, women, men, politics or religion, with like minded people.We can really bare our souls to them, because we know that they really understand and share our emotions.I know when talking on some of the previously mentioned subjects, I can talk for ever, with passion, if I know that we are sharing common ground.
What about when we have been ill? Sharing experiences is somehow very therapeutic. I don't know why that is! It doesn't make anyone feel better physically. It doesn't change your prognosis, yet communicating with someone who has similar experiences to you makes you feel a bit better about things.I know it does, I have the proof! It certainly works for me, and I know from my blogging and personal work which I am involved with, it works for others.
The reason, I have concluded, is that people truly understand the issues, you face, as they share them. You don't have to waste time explaining things, as they understand immediately. They are not just being polite, and they also are truly grateful to be able to share their problems, with a 'brother in arms.'
So how does the 'cancer thing' work then? Most of us are lucky enough to have family and friends around for support when we need it.We are certainly very grateful for that. We have nurses, doctors etc for when we are unwell, and even counsellors if things get very tough.But unless they have similar experience, how can they understand.Put simply, it would be like me talking to a pregnant lady about the issues surrounding childbirth. I could certainly have sympathy with everything involved, but I couldn't pretend to understand what she was going through.
Since my illness I have spent a lot of time establishing the most effective means of communication, in the 'cancer world' When I started my quest, I firmly believed that there was no substitute for 'eye to eye' contact.But I realised that it was difficult to reach many people with that method. Then I started using social media, and the world became my oyster. Now people are communicating with each other around the world, sharing experiences and knowledge.
In the last few weeks I have been able to communicate with many wonderful people, all comfortable with sharing their unique experiences with me, and me with them.None of this would be possible with out social media being the 'conduit' that we needed.But the key to the 'comfortable' communication is our 'common bond' Patients are linking with doctors and support services, almost organically.
All this has made me think, about our large health institutions, particularly the N.H.S. They do what they do, really well on the whole, but I am trying to imagine if I went to them and said
"I have a good idea. I think we should let everyone communicate with each other and start forming their own support groups. We can do this across the world, and anyone can join in!"
Can you imagine what the answer would be? It would certainly include Health and Safety, Risk Assessment, and confidentiality issues. If we were lucky we would just about have formed a focus group to look into it!
In all seriousness I really do understand all the issues involved in social media and health care, but from what I have experienced in the last few years, is that the patient has many more alternative areas of support now, and is creating some answers themselves.I also appreciate that it cannot replace personal contact, but is a fantastic way to share experiences, both near and far. If you are lucky enough, you will get to meet, in 'real life' to enhance your 'virtual' relationship.
I consider myself very privileged to be a part of a growing online cancer community. We know it's not perfect, but it is a whole lot better than it was. It means that we can communicate with people that really do understand!
Todays post is an incredibly moving story from an inspirational young lady who is a writer in America. As you will know by now, I am the very grateful recipient of a life saving stem cell transplant.I have mentioned previously, about some of the emotions that people face, and this story, paints a very accurate picture regarding family relationships and more, when facing a life threatening illness.I would like to thank Suleika, for allowing me to share her story through this blog, and I know it will be of tremendous benefit for anyone facing similar issues.
There are a lot of things about having cancer in your 20s that feel absurd. One of those instances was when I found myself calling my brother Adam on Skype while he was studying abroad in Argentina to tell him that I had just been diagnosed with leukaemia and that — no pressure — he was my only hope for a cure.
Today, my brother and I share almost identical DNA, the result of a successful bone marrow transplant I had last April using his healthy stem cells. But Adam and I couldn’t be more different. Like a lot of siblings, we got along swimmingly at one moment and were in each other’s hair the next. My younger brother by two years, he said I was a bossy older sister. I, of course, thought I knew best for my little brother and wanted him to see the world how I did. My brother is quieter, more reflective. I’m a chronic social butterfly who is probably a bit too impulsive and self-serious. I dreamed of dancing in the New York City Ballet, and he imagined himself playing in the N.B.A. While the sounds of the rapper Mos Def blared from Adam’s room growing up, I practised for concerto competitions. Friends joked that one of us had to be adopted. We even look different, some people say. But really, we’re just siblings like any others.
When I was diagnosed with cancer at age 22, I learned just how much cancer affects families when it affects individuals. My doctors informed me that I had a high-risk form of leukaemia and that a bone marrow transplant was my only shot at a cure. ‘Did I have any siblings?’ the doctors asked immediately. That would be my best chance to find a bone marrow match. Suddenly, everyone in our family was leaning on the little brother. He was in his last semester of college, and while his friends were applying to jobs and partying the final weeks of the school year away, he was soon shuttling from upstate New York to New York City for appointments with the transplant doctors.
I’d heard of organ transplants before, but what was a bone marrow transplant? The extent of my knowledge about bone marrow came from French cuisine: the fancy dish occasionally served with a side of toasted baguette.
Jokes aside, I learned that cancer patients become quick studies in the human body and how cancer treatment works. The thought of going through a bone marrow transplant, which in my case called for a life-threatening dose of chemotherapy followed by a total replacement of my body’s bone marrow, was scary enough. But then I learned that finding a donor can be the scariest part of all.
It turns out that not all transplants are created equal. Without a match, the path to a cure becomes much less certain, in many cases even impossible. This is particularly true for minorities and people from mixed ethnic backgrounds, groups that are severely underrepresented in bone marrow registries. As a first generation American, the child of a Swiss mother and Tunisian father, I suddenly found myself in a scary place. My doctors worried that a global, harried search for a bone marrow match would delay critical treatment for my fast-moving leukaemia.
That meant that my younger brother was my best hope — but my doctors were careful to measure hope with reality. Siblings are the best chance for a match, but a match only happens about 25 percent of the time.
To our relief, results showed that my brother was a perfect match: a 10-out-of-10 on the donor scale. It was only then that it struck me how lucky I had been. Doctors never said it this way, but without a match, my chances of living through the next year were low. I have met many people since who, after dozens of efforts to encourage potential bone marrow donors to sign up, still have not found a match. Adding your name to the bone marrow registry is quick, easy and painless — you can sign up at marrow.org — and it just takes a swab of a Q-tip to get your DNA. For cancer patients around the world, it could mean a cure.
The bone marrow transplant procedure itself can be dangerous, but it is swift, which makes it feel strangely anti-climactic. On “Day Zero,” my brother’s stem cells dripped into my veins from a hanging I.V. bag, and it was all over in minutes. Doctors tell me that the hardest part of the transplant is recovering from it. I’ve found that to be true, and I’ve also recognised that the same is true for Adam. As I slowly grow stronger, my little brother has assumed a caretaker role in my life. I carry his blood cells — the ones keeping me alive — and he is carrying the responsibility, and often fear and anxiety, of the loving onlooker. He tells me I’m still a bossy older sister. But our relationship is now changed forever. I have to look to him for support and guidance more than I ever have. He’ll always be my little brother, but he’s growing up fast.
For more information regarding stem cell transplants etc in the UK/Europe please contact Anthony Nolan
Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 24-year-old writer who lives in New York City. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears regularly on Well. Follow @suleikajaouad on Twitter.
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