Friday, 25 January 2013

Sibling donor stem cell transplant ( Suleika's story)

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.

Suleika Jaouad with her brother Adam.

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 — 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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Friday, 18 January 2013

A new year, but how do we plan now?

As most of my friends will tell you I am not really into massive celebrations, unless it is football related! So if I am honest, much as I enjoy the family and friend time of Christmas and the New Year, it never really feels like a time of celebration. I always have the same hope each year, which is that the coming year is an improvement on the previous ones. Of course, it never works like that, and in recent times, I have had some massive highs, followed by some very bad lows, never really quite sure what will happen next!

So I am really going to tempt fate now! I am starting to feel positive, and this is usually where things start to go wrong, but I have seen it before, so know what to expect.The only thing I normally plan for the future is my football season ticket, and I only buy one season at a time! But it feels different now.There are some really interesting projects for me to do, with things appearing for later in the year. How do I approach this then?

Going on past experience, my health gets unreliable each year, just when I think things are going well. But I have actually agreed to take on some fixed commitments for this year. They are interesting opportunities, that come round rarely in life, so I decided to 'go for it' and although there is a lot of preparation to be done, I have my fingers crossed that I am well enough, to do them.

This made me think about how different my life planning, is since my diagnosis, but I have also noticed massive changes in our society,that seem to be affecting everyone with their planning too. I now live my life very much day to day, as I have found it very demoralising, making future plans and being unwell, and therefore unable to achieve them. Psychologically, I get a feeling of failure.

But there are many things that have happened in the world, that have meant it is now difficult for most of us to make many long term plans. Things like, the economy, pensions and investments, the job market, to name but a few. It seems that we all feel a lot more insecure than we did. So although we will know the direction that we want our life to go, we will never be sure of the exact route, as things happen, to cause us to change direction.

Gone are the days when we got a job, worked for one or two companies through our lifetime and retired with a lovely pension.Most people will change jobs frequently, and are unable to save adequately for their retirement. More people are renting, as they are unable to afford their own house, so are unable to feel the element of security that a lot of my generation are benefiting from.

My friends and I, and others of this age group, are feeling the 'economic winds of change' and it makes us feel uncomfortable. However, I have spoken to many young people, my sons included, that have now become accustomed to this way of life, but they seem to have the 'worry about it tomorrow' attitude. They know, that unless they have a remarkable slice of luck in their life, they will never own large houses, and retire, financially comfortable.

If I look on my household calendar, it is completed with various social functions throughout the year, my wife completes our social diary, with military precision. However if I ask my boys what they are doing at the weekend, they never know until Friday night! That said, they are very relaxed about things, and in many ways I am quite envious of that attitude. I don't think I ever had that, even when I was younger.

In summary, it seems that although my life planning ability has changed, everyone else's has  too, for different reasons, and we are now slowly having to adapt to short term planning. It is very difficult to change the habits of a lifetime, so many people are struggling to come to terms with what is happening.

I have found it extremely difficult to adapt, and if I am honest, still struggle with it, but the positive is that I am never sure what tomorrow will bring, good or bad, so life is never predictable! I know that I would be thinking differently if I was in the work place, but I guess I am very much 'old school.'

Have you always had long term plans, or are you used to just turning up and letting it happen? Are you now having to adjust the way you think about things? Has an unexpected 'health issue' turned your life upside down? What does the New Year have in store for you? I look forward to hearing from you.

Friday, 11 January 2013

My own thoughts on the 'power' of cancer.

Today, felt very much like a 'writing day.' I am home alone, and it is freezing outside, so just having my computer for company, is normally a recipe for things to flow! However, the phone rang, a pal popped round, and a couple of articles landed in my inbox, so my focus was diverted.But as usual, after reading and chatting for the last few days, my subject matter for this post duly arrived.

I am certainly aware of the effects caused by cancer, to my own life and the thousands of other people I have had the great pleasure to have come into contact with, but I then started to look at the bigger picture.My first thoughts were towards our main treatments of cancer, which are surgery, chemotherapy, and radiotherapy.

In my lifetime, I have seen some amazing things, including man walking on the moon, mobile phones, and the Internet. Fantastic advances in technology. This made me look at how we dealt with cancer in the past. It seems that the first recorded cancer surgery, was in 1846.Radiotherapy has been used for in excess of 100 years, and chemotherapy, has been used since the 1940s. Of course, all of those methods have improved, and are much more 'targeted' than they were, but considering how long we have been trying to treat cancer this way, the outcomes are still very much unsure

We now have very powerful scanners, that can tell us a lot more about the cancer. There is robotic surgery, and fantastically accurate radiotherapy that we can even use on brain tumours. Now we can also use genome data to help target treatment more accurately, but still cancer continues to wreak havoc in our society.Maybe it is our 'awareness raising' that is working effectively, but rarely a day goes by without a major news article regarding cancer.It still feels very much like a modern day plague.

The battle with cancer, has succeeded where politics and religion fail, and that is to unify people around the world, to work together to find a cure. Investment in drugs and research is happening in every country,people all trying to unpick the lock. Millions of pounds and man hours all trying to find a cure. As each year goes by, another ground breaking discovery happens, but it still feels like we are an age away from the cure we all seek.Is cancer getting cleverer? When we find new drugs, does it eventually find it's own immunity to them?

I have mentioned briefly above, the power of the disease, but I would also like to mention the power that it also seems to give people.In my numerous voluntary roles, I meet and talk to so many people who's lives have been touched by cancer and want to do something positive. From fund raising, to raising awareness, people stretch themselves beyond the call of duty. They seem to find strength, talents and endurance, which they never realised they had.Climbing mountains, making films, writing books.These are just a few of the things that people are prompted to do, when touched by cancer.

It seems to encourage many people to step outside their normal comfort zone. So many people that I know, have had their entire life changed, including a change of career, and are devoting a majority of their time to cancer related projects. We have 1000s of cancer charities around the world, staffed with volunteers, helping people affected by cancer in many diverse ways, both directly and indirectly.

Young, old, black or white, we are all united in a fight against cancer. Millions of people and millions of pounds, working to improve things around the world. I am struggling to think of anything else that has so much common resource fighting it. This demonstrates, the power that this beast has. There are many important issues in the world, but they are generally localised, maybe to one or two countries or regions. Very few that cross the globe like cancer.

How does cancer have that power? For some it gives strength, for others, fear. It makes strong people weak, but also weak people strong. Is it us that gives it the power, in our minds? Is it the fear of the unknown? There is an element of fear in even saying the word.It can't even be persuaded by money, that is how powerful it is!

It is the first time for a long time that I have really sat and thought about some of the complexities of my disease. I didn't sign up voluntarily, I was conscripted, but now I am a member, I am going to do my best to bring about a change in power!!

Sunday, 6 January 2013

Young people and cancer. (Sam's Story)

As I have mentioned in a previous post, I have become very aware of the growing needs for support, on behalf of young people dealing with a cancer diagnosis.I also know from the feedback that I am receiving, that this blog is getting an increasing younger audience now, which is fantastic.

Of course, social media is just one part of the story, but it's importance is growing rapidly. It enables like minded people to be able to communicate, share experiences, and support each other. It is also helping organisations stay in touch, with the people that need them. My experience with this blog has shown how sharing experiences has helped many readers deal with some of their own issues. In fact what we have all found is that writing things down for others to read can be very satisfying.

Sam was directed to this blog via Twitter and we have been communicating since. We both agree that we would like to encourage more young people to share their stories, so Sam decided to write this inspiring post

"Living with lymphoma isn't the funnest experience I've had in my 19 years of living. I would say that my lucky experiences with travelling were my favourite and most enjoyable. I've been to Disney world, Disneyland, Rome, the Caribbean, Portugal, Paris, Pisa. I've been fortunate enough (or spoilt) to go to see some amazing sights. The Colosseum in Rome, sea turtles in Barbados, Woody and Buzz in Disney world, the list goes on. Being fortunate enough to see so much of the world from a young age, gave me a bit of a travel bug. After going on a cruise in the Caribbean and always loving the ocean, I decided the Royal Navy was my latest "what I want to be when I grow up".

Moving a few years on, I went to college having forgotten my Naval dreams, & I studied sports in the hope it would get me into Camp America, and I could go and make some friends from all over and see some beautiful sights in the US. By the time I'd finished, I had plans to go to university to study psychology of sport (never knew what I was thinking at all!). So I did my year at university and I hated it, and early on in 2012 my desire to join the Royal Navy seemed more realistic, and a lot of fun. In the summer I spoke to a Royal Navy officer and got my application pack, and looked for a job in the mean time. I'd had a cold for a while so it was taking me a while to get the ball rolling.

Then I found my lump and my tests began and by mid August I started to get worried I had something that was on the medical bars list for the Navy and I lost it, throwing things around my room and crying - I thought my dreams had been shattered. So when I was actually diagnosed with Hodgkin's lymphoma on the 22nd of August, went into a weird mode in my brain. It didn't really twig I had cancer,except for the times I thought about the Royal Navy, and how cancer was on the medical bars list, (unless you're considered cured for a certain amount of time you can't join).

Since my treatment, and knowing that I'm one of the lucky cancer patients that has a time scale on their chemo, and hopefully remission at the end of that, I've again been "fortunate" enough to plan my time after February. Yes I will have check ups and tests and such, but I'll have my life back. I'll be free to go out in public more, and party and travel! And that is exactly what I plan on doing. Me and my girlfriend are planning a weekend away to Disney Land Paris, I keep getting majorly excited because I love Disney land and she's never been so it'll be great to take her.

This post all comes down to one thing. Despite the fact I am ill and I have cancer,and I'm only 19 and I've never really had a job, and don't have one for at the end of my treatment - I am lucky! I am so lucky you wouldn't believe. In our youth cancer community, I talk to so many people who have it worse off than me. Don't get me wrong it's NOT a breeze, it's incredibly hard but I find some sort of self comfort in the fact that it's not as bad for me as it is for some of my fellow sufferers.

I have hope, love, I don't have to pay for my treatment and I'm well supported by charities and the government. I've spoke to terminally ill people, people who have to pay for their medical treatment, people who can't work and can't claim for money and don't have the support they need financially or emotionally in some cases. And it's an incredibly sad state of affairs.

But if a good thing comes from any of our cancer experiences it's an increased sense of compassion we behold. I know that even though I'm lucky enough to go travelling and have my life at the end of this, I'm going to do everything I can to raise money for Macmillan Cancer Support, Clic Sargent, Teenage Cancer Trust, Lymphoma Association, Cancer Research UK and maybe even smaller charities such and Reubens Retreat & Richards Wish.

It's the least I can do after the help and support I have had from them.Worthwhile causes that mean a lot to me and my family, will benefit from the fact I had a crap 6 months that they helped me through. Everyone's a winner (sort of)."

I would like to thank Sam for sharing her story and you can follow her progress through her own blog .If you would like to share your experience, please feel free to contact me by leaving a comment below or through Twitter @christheeagle1