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Places Of Inspiration  Eric's Journey |
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 It is a fact that most of the things people fear never actually happen to them. The time to deal with these issues is when they actually happen and then always think positively working for the outcome you would definitely like for yourself.
Never judge the situation you may find yourself in, as inherently bad until you have the full picture and the story is unfolded over time. A very negative moment in time cannot show the entire picture and I was about to be reminded of this in no uncertain fashion. In fact it was to be a test to my acceptance of this belief, mental attitude and resilience.
I received a call in Jersey to say that a matched donor had been found and I was given the date to attend hospital for the procedure. Upon arrival I was prepared to receive my 7 days of Chemo, a central line was inserted and after a good nights sleep I was ready to start.
In the late morning of the second day in my isolation room 5 people entered and I was told 'there is no easy way to tell you this but the donor is being removed from the Anthony Nolan Register for ever'. My immediate thought, and reply was that there was a very good reason why this had happened and whilst I did not know at that moment, it would all become clear in time as the full picture unfolded.
Exactly that happened. It did become clear 6 months later when a 20 year old male, fully matched and with the same blood group, was willing, able and did go through with the procedure.
What may have appeared awful at the time showed, in the larger picture and the fullness of time, to be just wonderful.
My story starts in 1997 when I was diagnosed with Myelofibrosis, a condition that requires a bone marrow transplant. Since then I have contended with receiving 350 units of blood, in the latter 3 years 4 units every 3 weeks. I had over 1,200 injections into the subcutaneous areas of my stomach for 6-8 hours every other day - this was to reduce the iron level from the blood transfusions. Then the final straw of finding a donor who backed out the morning I was to start chemo. All the physical and emotional feelings had grown to such a pitch that in March when I returned to Jersey the thought of continuing this regime was of course never in doubt, but it drained me. I started again in March of that year and continued right up to the 18th September when I completed my last injection over 7 hours on my rather battered but beautiful syringe driver.
With the new admission date of 19th September 2004 just a day away I have organised my life in a way that I will have nothing to concern or worry me in hospital. This will allow me to fully concentrate on my health as my isolation from the outside world approaches. My apartment overlooking the beach is tidy as I turn the key in the lock to start my long awaited journey to St. George's Hospital. There is a two hour delay at the airport in Jersey which gives me some time to reflect and appreciate how very fortunate I am to have a donor and a hospital with years of experience in this procedure. The car I had booked is waiting for me at Gatwick and it is not long before I am outside the hospital entrance. As I approach the glass doors open - I enter and surrender myself to the experts, medically that is. Mentally, I am however already thinking with the end in mind, walking right back through the same doors with the transplant behind me.
I am in a room in the Ruth Myles Unit, a group of 5 isolation rooms and I start to unpack my case. My laptop, a printer, DVD's, CD's books and various papers - all those items of choice - I could now spend my time watching, reading, listening, reading and writing. I felt lucky to be able to have the time to do these things I could never find the time to do before. I remained dressed and only change to go to sleep. I will keep to this routine up all the way through the procedure.
I am awake now, Monday morning and I have a busy day ahead, the line has to be installed in my chest, ready for the first of 7 sessions of chemo over 7 days. I have found myself completely relaxed, I do what I want when I want, I have all I need in my room and all the support I could need or wish for. I have started to become aware that I am even more in touch with my feelings and sensibly sensitive to those who are close to me. I want them to understand that everything is okay and that I am especially comfortable with my situation. Clearly they see me going through a traumatic medical situation which changes the core of your body, however my brain is in full control of that. I have promised myself to take better care of it, impose no stress that I might have and give it no reason to create any environment that would reduce its opportunity to be the best it can. My brain and body will now work together and never wait for either to be out of match where one has to catch up.
Time is passing very fast this week, so much going on to understand with the medications, drips and my desire to know what my daily blood results are showing. My bone marrow is very depressed now and I am close to having no immune system as I await the transplant date of 28th September, my new birthday, I am feeling in general extremely well.
Being in isolation I am not alone as I can pull so many feelings, thoughts, words, songs, books and conversations to mind; being alone, on your own is a choice which can take you down, and deliver you to sadness and self doubt. Dreams and desire allow your brain to connect you to good health with every positive thought and tool. Your brain leading your goal, hold yourself in that position and your pride, self esteem and success will take you into a new life.
One Monday morning 27th September, I receive drugs to prepare my body to accept the new bone marrow donor cells and prevent any graft versus host problems. All sorts going through my mind at this time, 24 hours and counting at a wonderful new opportunity to get my body back to where it was when I was 47. As for my brain this has been the making of me. I have changed in so many ways and facing the possibilities I have, I will never sacrifice my time in any way that I do not respect its clear and true value in my life. In doing all that, I can achieve optimum health, in mind body and spirit.
Tuesday 28th September late pm - Donor Stem Cells from the 20 year old male arrive from Dresden, Germany. A bag of approx 200 ml of stem cells, my new life and it seems so small but very precious - this is what I have been waiting for, for nearly 7 years. I was stunned by its small volume but my line has arrived, all my blood count readings were now on the floor, I had no immune system - the chemo had done its job and I was about to be reborn, my new birthday 28th September started at 7.30pm when they attached the stem cell bag through the hickman line, a pipe sticking out of my chest and feeding directly into a major vein. I watch for 1 ½ hours as this miracle dripped slowly into my blood stream, by 9pm I was reborn. I just lay there, in bed, humbled, so grateful and lucky. It was all I could do but think of the kindness and wonder at a young man of 20? - He does not know me at all but is prepared to go though with this operation to save my life. I cannot find the words to equal my appreciation. I will meet him one day, he is a very special person.
To remain positive all I have to do is to know the benefit of health, value it, work towards it, desire it past any momentary pain and create so much to look forward to that it is but a very small price to pay. Considering all the donors on the Anthony Nolan Trust the treatment I received at St.George's in Tooting under Professor Judith Marsh and all the lovely nurses in the Ruth Myles Unit where I sit at this moment, Jersey General Hospital under Dr.Mattocks and Maggs and Wexham Park in Slough under Dr.Mackie, all those hundreds of years of experience and caring just for me and 350 individual blood donors - I had better be the best I can be when I deliver myself for the operation!
As my body started to accept the new donor cells there were long moments in time where the only activity was my mind, my only escape. Memories, plans, thoughts and imaginations. I had wild dreams that went back to my childhood which created deep emotion and thought. I relived my first life in detail and humility. It was like I was being cleansed and prepared for a new beginning.
Some hair was coming out one day so I had the nurse shave my head, I did not care, it was and is all apart of getting better. Although my body was going through a dramatic and severe change from its core and I felt ill and was sick my positive mind brought me through. I have a vivid imagination.
If you were to plan a holiday say in New York you book with BA using their time table and then arrive at the airport for the Journey. Now, the pilot knows where he is going and will have to deal with all sorts of issues and weather conditions before he gets to his intended destination. When the Pilot takes off he knows clearly that he wants to get to New York, however if he pointed the plane towards NY he would never get there because he has to make hundreds of adjustments due to the weather and wind speed and direction. There is no difference with a bone marrow transplant, you have to book in when the donor is found and when you arrive at the hospital you will have to contend with all sorts of issues and medical conditions before you get to your destination - all you need to do is stay on track to your destination, think with the end in mind.
I believe in the power of the brain to be very capable of giving an edge to an uncertain situation and moving it to the definite. I have no doubt that a positive outlook on everything in life is essential. You can always take something good from a bad experience if you decide to take that choice.
The picture of walking back through those entrance doors and seeing my two daughters again, my two brothers and my friends was such a wonderful destination that it was only a matter of time.
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