Barre Fitzpatrick interviewed me for the Decision Magazine, Summer 2012 edition and this is the result. What do you think? My blog is moving away from my illness to my new journey after the ‘System Reset’. I was going to say, ‘dying to get back to work’ – though I better change that to ‘living to get back to work’. Decision Summer 2012 – Perera
Author: Raomal Perera
A few weeks ago, I was asked to pen a few thoughts on the ‘Road to Recovery’, an article for the Sunday Independent Ireland newspaper. I am posting my thoughts first in my blog to get your comments. Writing an article for a newspaper is surely different to my ramblings on a blog site. What made Tom ask me to write about such a topic? Was it because he was familiar about my entrepreneurial journey to date? Maybe he liked my Lean Startup Initiative at ThousandSeeds? Maybe he read my blog, www.raomal.com where I talk about my own struggle with cancer? I did not ask him why, instead hastily replied that I would love to write about the Road to Recovery. This is called ‘Jumping into the Deep End without knowing how to swim’.
The article, if accepted will be published in one of the best selling Sunday newspapers in the country. The audience is people just like you and me except that I am a complete stranger to them. I guess this means that I will have to tone it down from my usual ramblings in my blog which is more directed at people who know me.
Thank you for your comments, the article was published in the Irish Independent on Sunday, July 22, 2012.
You’re never too small to make a big difference
“More diversity on our boards coupled with a real sense of entrepreneurial flair and positivity will put Ireland back on the road to recovery sooner than you think” – Raomal Perera
The Road to Recovery whether it is a personal crisis or a country’s crisis has many common threads to it. Here, I am musing on my own personal journey and the lessons I believe I can take and apply to many crises around me; Pump up the positives and Celebrate success, Solicit superb support, continuously course-correct and take small steps.
I cannot write about recovery without somehow bringing in my own life experiences. I am no different to many of you reading this, we have all seen lows and we have had to find a way to recover from the many messes we create for ourselves.
Saturday April 9, 2011 is one of those days that will remain fresh in my mind for many years to come. Our eldest. Lesley-Ann rang to say that she has just got engaged and we all celebrated the event. I had dreamt of the day of walking Lesley-Ann down the aisle and it looked like this day will not be too far away. Little did we realise that two days later my world was going to be turned upside down.
The following Monday I went for what I thought was going to be a routine blood test. That afternoon I got a call from my GP asking me to immediately go to the emergency department at St. Vincent’s Hospital. My white blood cell count was off the scale. I was diagnosed with having Chronic Myeloid Leukaemia (CML). The challenge during this ‘low’ was trying to remain very positive and looking for a solution to get me out of the mess.
“Insanity is doing the same thing over and over again expecting different results” – Albert Einstein
My treatment was both intensive and invasive. I underwent a bone marrow transplant in December, which is a complete reset of my system. An intensive dose of chemotherapy killed off all my white blood cells and my brother’s stem cells were transplanted to take over my system. That first day was the most difficult day to handle. It was disbelief, shock, horror and fear all hitting you like a ‘perfect storm’.
I was in tears most of the night not fully able to comprehend what on earth is happening to me. I was very fortunate that almost immediately I was surrounded by support from family and friends. The rest of the journey was relatively easy for me, as I was able to accept the situation and work towards a solution.
Our country too will need to look at making some fundamental changes in how we do business on our road to recovery.
I am delighted to see the recent Enterprise Ireland initiative to encourage female entrepreneurship.
However, this should not end here. We need to do more. Let us actively bring in diversity into our boards. Time for a changing of the guard! Let us actively recruit females to our boards. I work with the Cartier Women’s Initiative Awards and in 2009 the European winners were two ladies from Iceland; Halla Tómasdóttir & Kristin Pétursdóttir who built a financial services company based on ‘what they call’ feminine values.
To me, it sounded more like common sense, but while the rest of the Icelandic banking infrastructure collapsed, their company continued to grow. The key message here is bring in ‘diversity’ into our Corporate and Public boards. Diversity is not just bringing in Women but also looking at some of the ‘New Irish’, the immigrants.
I recently read an article in the Washington Post about the secret to Silicon Valley’s enduring success and attributes it to the ‘diversity’ or in the words of the article ‘creating a valley out of the nation of immigrants’.
It’s time to bring in ‘diversity’ into our boards – not keep doing the same thing over and over again expecting a different result.
“The hardest thing to do is smile when you are ill, in pain or depressed, but this NO-COST remedy is a necessary first half-step if you are in the ‘Road to Recovery” – Allen Klein
Did you know that ESOF (European Science Open Forum) 2012 was held in Dublin last week? Take a look at these pictures from ESOF in the Irish Times website. There were over 5000 delegates at the event with 5 Nobel laureates and over 70 nationalities in attendance. I got an opportunity to be involved in the Science-2-Business stream at ESOF.
It was Europe’s largest Science gathering and it was truly an amazing conference. Rolf-Dieter Heuer, Director General of CERN spoke about finding the Higgs Boson. CERN is the birth place of the world wide web! Major General Charles F. Bolden Jr, NASA Administrator spoke about the new era of space exploration. Craig Venter, founder and chairperson of the Venter Institute spoke about reading and writing the genetic code.
These are just a few of the scientists in Dublin last week. This should have been headline news covered in the front pages in our daily newspapers and by RTE (TV News).
We must celebrate success. It about getting us mere mortals, outside of the conference centre in Dublin, to experience some of the buzz created at ESOF. I saw very little coverage after the event.
If you take a straw poll, talking to people in the street, they are likely to say that they are sick of hearing about the doom and gloom and have switched off from listening to the news. If this is true, why do we fail to highlight good news stories?
My recovery from a ‘critical illness’ was thanks to an excellent team of staff from the cleaners, caterers, nurses and doctors at St. James Hospital and to the constant support and encouragement from my family and friends. Likewise, our country’s recovery will come from within and from our diaspora; “Ask not what your country can do for you, ask what you can do for your country”
It has been a roller coaster ride for me as I start to rebuild my immunity. Like a baby, I must start my immunisation programme all over again.
“If we can’t feed one hundred people, then just feed one” – Mother Teresa
We can extend this to ask, can we make a difference for one person, to get him (her) back on his (her) feet on the road to recovery?
I work mainly with Entrepreneurs and SMEs. Small firms play a significant role in Ireland’s economy. Almost 200,000 small firms involve over 655,000 people in their operations. That’s about half of all people engaged in businesses in Ireland. Our perception of ‘big is beautiful’ makes us susceptible to think that we need to focus on multinationals in order to create mass employment.
Yes, this will give us some temporary relief for the unemployment crisis. However studies have shown that long term sustainable employment is created by Small Firms.
There is a vibrant startup culture in Dublin with a number of ‘Accelerators’ to help young startups. NDRC LaunchPad was Ireland’s first digital accelerator and over 80 entrepreneurs have passed through their programs to date.
The Telefonica-O2’s Wayra initiative is the latest ‘Accelerator’ to join a growing list of Accelerators now supporting the entrepreneurial ecosystem in Ireland.
Wayra together with a ThousandSeeds will be hosting the ‘This week in Startups’ profiling the top three startups in Dublin on the popular Web TV channel in the US.
We should celebrate our success in creating this vibrant culture of entrepreneurship in Ireland and ask ourselves, what more can we do for them?
In four weeks’ time, I’ll get to live my dream, walking Lesley-Ann down the aisle.
“If you think you are too small to make a difference, try sleeping with a mosquito” – the Dalai Lama
Raomal Perera is a director, a motivational speaker, an entrepreneur and adjunct professor of entrepreneurial studies at INSEAD. Visit www.thousandseeds.com.
Categories
Amazing Grace
Day 144. I haven’t visited my blog in many weeks. ‘ All things must pass’ and yes I have made it to the other side. Did you know that this phrase comes from the bible? “see that ye be not troubled: for all these things must come to pass” This series of blog posts have come to an end as well. This is my thank you and goodbye for now, posting.
I am doing very well. I am no longer on the cyclosporin. The drug that is an immune suppressant. My regular visits to the hospital is now once every three weeks. My system has been ‘reset’! It means that my immunity is still on the low side. Over the next 18 months, I will be getting all the vaccinations to protect me from the usual childhood diseases. I am still in semi-isolation but have started going out for a few meetings, though I tend to avoid crowds.
I was back at church was over Easter for the first time in four months. I sat in the back away from the crowds and avoided shaking any hands during the ‘kiss of peace’. We have a tradition on Christmas Day and Easter Sunday, when the men are invited to go up to the altar to sing the penultimate hymn. When my friend, Ray, started this tradition, about 15 years ago, we used to have about 10/15 men go up, but now well over 60 men go up to sing the penultimate song. Follow this link to get a feel for what it is like, this was Christmas 2011 while I was in hospital; http://www.youtube.com/watch?v=QPcZmTVvAak. I did not go up to sing this year. Ray dedicated the song, ‘Amazing Grace’ to welcome me back and telling all that song represented my journey. How true! Even writing about this, makes me emotional! It was a very moving moment to hear the words “Through many dangers, toils and snares, I have already come; Tis Grace that brought me safe thus far
and Grace will lead me home”
It was over a year ago, Monday April 11, 2011 that I was diagnosed with CML (Chronic Myeloid Leukaemia) and then on Tuesday December 13, 2011 I underwent a bone marrow transplant, a ‘reboot’ of the system. The last twelve months were tough, probably harder on Pat than on me. We were very blessed with the help and constant support we got from all our family and friends. Thank you for this ‘Amazing Grace’.
There isn’t much more to write about this particular journey of mine. I found that writing this ‘blog’ helped me a great deal in remaining positive. I have no doubt this positivity helped me in my recovery.
The BCR-ABL count, this is the cancer cell count dropped to a very low level after the bone marrow transplant. It was at 0.02. Then it started to go up again, first to 0.1 and now it is at 0.2. Ideally, it should remain below 0.1. These are still very low levels. One of the reasons they took me off the immune suppressant is to try to get my blood to fight this cancer. The challenge for any cancer patient is the worry that the cancer will return. That is for another day, another blog and if it does, I will have to deal with it. In the mean time, it looks like, I have won this battle!
I recently posted this on my facebook page. My son Amal is running for his father! There were many ‘silver linings’ in the my cloud and this is one of them. I am a proud father! Thank you Amal. Please do support this cause!
http://www.mycharity.ie/event/amal_perera_leukaemia_run/
Please feel free to suggest a new topic for my next series of blog posts!
That’s all for now Folks! Till we meet again …….
Day +82. It must be over 3 weeks since I last updated my blog. Today was a red letter day. Though, it is fair to say that there have been a few red letter days since my last update.
I drove to the airport (and back) this evening, the first time since I went to pick Lesley-Ann from the airport on the 1st of December just before going into hospital. My brother Mahesh (Donor) was over for the week-end to see how I was doing and I dropped him off at the airport a few minutes ago. This was also the first time I am seeing Mahesh since the transplant. Today, March 4th, is also my father’s birthday.
I am doing very well. I have managed to overcome my fatigue. My ‘Hickman line’; the tube that was connected to one of my main veins, was removed last week. There was some discomfort when removing the line (it took about half an hour) but it wasn’t painful. They have also started to reduce my cyclosporin. It is all going in the right direction.
Mahesh sent me a link to CML (Chronic Myeloid Leukaemia) that I found very useful. It is called; Newly Dignosed – First Steps.There is an excellent booklet called the CML Guide which may be downloaded as a PDF. There is also a CML Tracker application as well that looks good. I will try it out. This is a Canadian website and it is interesting that they encourage cancer patients to research their illness. They suggest the following:
- Keep all appointments with the doctor and be sure to talk openly about any fears, concerns or side effects experienced.
- Be an information seeker. Learn about your diagnosis and the most current treatment.
- Talk with family and friends about how you feel and how they can help.
- Contact your doctor about tiredness, fever, pain or sleeplessness so that any problems can be addressed early.
- Get medical advice if you have prolonged changes in mood, feelings of sadness or depression. Depression is an illness that should be treated.
- Learn about your insurance coverage, healthcare facilities and available support for you and your family.
- Remember that the outlook for people with blood cancer is continuing to improve and new treatments are on the horizon. Researchers are studying new blood cancer treatments in clinical trials for patients of all ages and in all treatment stages.
The only problem with being an information seeker is that sometimes the message is not that palatable! Another article on CML, beyond the Basic, say the following; “The only cure for someone in the ‘Accelerated Phase’ of CML (this is where I was) is a ‘Stem Cell Transplant’ and goes on to say that disease-free survival falls to 30-40% for these patients”. I thought I had better odds! Let us hope that I fall into the 30% bracket. Based on my track record so far, it looks like I am in that 30% category. Anyway, no point worrying about that now. Cést la vie!
Shereen took part in a Japanese Speech Contest on Saturday and did very well. I was not able to go to it but was able to see her performance on tape. When you watch a ‘recording’ it is one dimensional in that and you cannot absorb the atmosphere. This reminds me of what Pat showed me last Tuesday while we were in hospital. She was reading ‘Have a Little Faith by Mitch Albom’ and she showed me this story from it.
“A little girl came home from school with a drawing she’d made in class. She danced into the kitchen (I can picture Shereen here!), where her father was busy at his computer.
“‘Dad, guess what?’ she squealed, waving the drawing.
“Her Dad never looked up.
“”What?’ he said, still finishing off his emails.
“‘Guess what?’ the child repeated, waving the drawing.
“‘What?’ the Dad said, still reading his emails.
“‘Dad, you’re not listening.’
“‘Darling, yes I am.’
“‘Dad,’ the child said, ‘you’re not listening with your eyes.’”
We may be in awe of watching 3-D (now 4-D) movies but yet fail to recognize the ‘God given’ benefits of 3-D by using all our senses at any given moment to the get the maximum benefit out of a situation. I am learning – slowly!
That is all for now folks!
Day +54, I am getting closer to the first hundred days. It has been tough going for the last couple of weeks and it seems like I am battling with my mind. Just trying to deal with fatigue. I don’t feel like doing anything. I must find a way to handle this. The blog was a great way to keep me occupied when I was in hospital and it kept my mind alert. Somehow, I haven’t been feeling up to writing a blog. Anyway, here I am, let me look into the future as I continue to battle with my own demons! Even Pat has got into reading my blog and misses it. Every morning she says, ‘Why don’t you write something today?’. Amazing statement from Pat, who is not a great fan of computers.
It has been an eventful few days. I got a bad dose of diarrhoea last Friday. This is one of the symptoms of the Graft-versus-Host disease. I was in touch with the hospital to see if I should go in, they did not seem as concerned as I was. Probably they wanted to rule out a few things first, such as a flu bug. The last thing they want is to have me come in and infect other patients. The other possibility was food poisoning, which I thought was highly unlikely as Pat cooks my meals fresh every day. Anyway, the hospital said, let us wait and see for another few hours and if I got worse, then to come in. I felt better on Saturday and the crisis was under control. It is amazing how much power your mind has over your body. I was convinced that it was GvHd and the fear took control of my body and put me out of action for the rest of the day on Friday. I am convinced that we do need to find a way to control our minds.
By an amazing coincidence, I came across this article in the Reader’s Digest (February 2012). This goes back to one of my original postings when I spoke of the ‘law of attraction’. The challenge for me is to figure out if it was my Guardian Angel or the ‘law of attraction’ that brought me this article. In itself it does not matter too much as long as it helps me. The article is called, ‘Change your Mind, Change your Future’ written by David Shephard.
A recently published report says that 38 percent of Europeans are suffering from some sort of mental or emotional disorder. This is over 1 in 3 people suffer from this disorder. If I read this a few weeks back I would have laughed it off as I am not a great believer in mental disorders.
I also didn’t believe that the incidence of cancer was as high as it is reported. I used to laugh at my sister-in-law, who is a Consultant Pathologists, when she was very concerned about carcinogenic substances in our food (cancer causing substances). Well, here I am now a cancer patient. Can you believe that 5 out of the 6 of my family have had a brush with cancer? Being a cancer patient is not a great place to be in, as it is a ‘life sentence’. Going through cancer treatment is tough, but once the battle in won, unfortunately, it is not the end of the war. If you get cancer, then you have to deal with it.
The best is to avoid getting cancer. It is a known fact that smoking can cause cancer. The liver is one of your lines of defense and heavy drinking damages your liver. The detergents we use at home are probably carcinogenic. I was surprised to see the cleaners use Fairy Liquid (washing up liquid) to clean the surfaces at the hospital and not Domestos (Bleach). A good healthy diet is recommended with fruit, fibre and vegetables (avoid sugar). All this is to ‘close the barn door before the horse bolts’! This was a digression from my original thought process, but this has been in my mind for some time since I got sick. When you are sick, you long to be well again.
Back to the ‘Change of Mind’ article. The article talks of developing a few techniques for controlling your mind and therefore your life. Your brain runs two minds; the conscious and the unconscious mind. Your conscious mind is the one you feel with, and where you get intuitions and gut instincts. I for one, is overly reliant on my conscious mind. It is our unconscious mind that holds the power to create our dreams and this is news to me! The truth is that we require both minds. The article talks about the conscious mind being the captain of the ship and the unconscious mind being the crew. The unconscious mind’s job is to give you something to focus on. The unconscious mind can’t process ‘negatives’ e.g. If I ask you not to think of a blue tree, what do you think of? A blue tree! The problem is that culturally we’re conditioned to focus on what we don’t want.
Train your brain. You need, literally, to insert “memories” of what you want to happen into the future. Your unconscious mind needs to know exactly what you want and when. Your conscious mind’s job is to decide how to get there.
I think I will look up on David Shephard and will keep you posted on what I learn here. He says that the most important thing to realise is that nothing is just the way it is – you have the power to change the meaning of the past and create your future the way you want it.
That’s all for now folks!