Lesley's Story

The following was written by Lesley Parsell.

When my daughter was first diagnosed with cancer the overriding feeling that it created in me was a feeling of numbness, of complete and utter disbelief. Now four years and four months after that life changing moment (two years four months since she lost her fight), I now am able to understand and see clearly the journey that I have been on.

My journey began a long time before that catastrophic day with an appointment to see an acupuncturist called Mary who began to help me to know me, as up to this time I now know I was a lost soul, striving to exist in a world that I let control me. To struggle with many situations that I encountered and to find solace wallowing in self pity. This was my way of coping and I believed, or did not even think about what I believed, I just did. Really this was a way of blocking anything that was outside my comfort zone, so I did not have to face life’s ups and downs. But really all this did was to encompass me in a very dark and frightening world, where I had no control or choice over my path in life. In other words I was a victim and not only that I was complicit in the action, or I would now describe it as non-action that I chose.

I believe that our world is moving so fast and changing at a great pace that more and more people are finding it an ever-increasing problem to cope with every day life, and many people choose inaction rather than action. I keep using the word choose as I now understand that it was my choice to behave in this way. To let the world outside of me dictate the way I behaved. I chose not to be in control of my life. This is the greatest lesson that I have learned, but it has not been easy to reach this understanding and after Mary I have sought out many other people to help me continue along this wonderful, ever evolving path of learning that I have willingly embraced.

This is where alternative therapies are so important. They do not judge us. They do not dictate to us, they do not force us along a certain path where we are setting all our sights on a predestined outcome. They are there to encourage and support and we have the choice to decide if we will embark on this journey and what we will absorb from the support we are given. We choose what we will pack in our suitcase of life to take us on our onward journey. The tools we need to be our own person, to move forward with a true understanding of who we are and always to sit comfortably with ourselves. For as it is said “Who do we spend the most time with?” The answer in case you didn’t know – OURSELVES. If we are true to ourselves then we have more to give to other people, to truly choose our destiny.

You may ask how this can be applied to the diagnosis of cancer that, in my case was for my daughter or may be for yourself. I believe that when you know that you have choice about everything then you are no longer a victim, you find a strength of character that puts you in control of the situation, not the other way around. I can hear you saying, “but how can you be in control of something that you do not want?” This somehow comes back to choice, that we would not choose to have this disease and I cannot argue with that, but while you are focusing on the fact that you have the disease, the disease is controlling you. Once you focus on the choices that you have in order to strengthen the steps that you will take, to put you in control of your destiny, then you are no longer a victim. You are a survivor in the true sense of the word.

My daughter was very strong during her treatment and wherever she could took control, she decided the right steps for her to take and again was surrounded with people who loved and supported her. Her boyfriend Andy was one in a million and could always make her laugh even in the darkest moments. I also believe that being able to laugh in the face of adversity is as much a tonic as any medicine. It somehow takes the darkness out of even the worst situation, even if only for a short time. When she decided to embark on her first course of chemotherapy she did not wait for her hair to fall out, but decided on the moment to shave her hair off. She chose to buy a wig, but she only wore it at school, where she was a primary school teacher (really she did this for the children). At other times she stood tall, wearing no wig or scarf, again her choice, no one else’s. The Christmas before she died in the February was a difficult time, she reached her lowest ebb, but again an earthly angel appeared in a wonderful life coach called Sue. The world of alternative therapies is truly wonderful. She helped her to rise above the darkness, which was threatening to encompass her and gave her different tools to enable her to take back her control. One was to keep a book of gratitude, where every day she made an entry. At the beginning of the book she entered:

GRATITUDE

I am truly grateful for every one of the following things to be
within my life as I know it!

She kept this diary from the 17 January 2008 until she died on 24 February 2008

Her first entry was obviously testing the water and getting to grips with writing her thoughts:

I am grateful to be living in Hertford where we have absolutely
no flood warnings at present.

Some of her other entries are as follows, some make us laugh, some cry, but we know she knew how much she was loved and how much she loved us. She never showed us this while she was doing it and it enabled her to focus on the positives. I believe that in any bad situation you can always without exception find positives. I believe we are on this planet to learn and every situation good or bad (if you want to label them that), enables us to grow and develop.

I am grateful to have Andy in my life, I know he will be there for me whenever I need him. He will always brighten my life with laughter. I am very lucky.

I am really grateful to have the good friends that I have been blessed with. I love them dearly and know that they will always be there for me and I for them, in whatever way needed.

I am very grateful to have the luxury of always having someone there with me or very close by to rely on and lean on for support and energy. I will embrace this generosity and appreciate it even more now I have thought about it.

I am grateful also that Dad has managed to make it down to the hospital. This has given Mum a nice break from me and also offered her with a bit of support, as she has been working herself up into a mess. So hopefully a few hours with Dad will keep her a bit stronger for a little while longer. She is doing fantastically amazingly and I couldn’t wish for anything better or rather anyone better.

For me I now know that when we received that devastating news in February 2006 I had to find a way of coping and at that time the only way I was able to continue and move through was to separate my inner emotional being from my human body. I have been standing behind myself watching my progress through this troubled time, as if a bystander, sometimes not believing how I was able to interact with everyone around me. Very often feeling in turmoil inside, but knowing that I needed to continue in life giving support to myself, my daughter and others.

Colin has needed to focus on this charity drive, it has given him a purpose and a knowing that he is helping others moving through dark times. He has also helped me, by asking me to write my story. It set me on a path out of the tunnel and back into the light, back into the real world. I think for me I needed that time away to give me strength and a new zest for life. Two weeks after writing Laura’s Story I went to see a friend called Jan who is a Healer and she helped me to step back into my body. I feel as if a veil has been lifted. But what I do know is that although I would not have wished for the journey that I have been given, I have been given it. I have learnt so much about myself and others. I feel very honoured that Laura chose to be my daughter and helped to make me the person I am today. Confidant and complete in myself and grateful for my life and everyone in it.

I believe that life is a journey. Each of us moves through this journey in our own way. People come into and touch upon our lives and we can choose to share our experiences to aid us in moving forward along our individual path.

I would like to share a poem that I have written, which really expresses my thoughts and feelings along my path:

Moving On

I climbed the hill up to the top
And then I saw a mighty drop.
Should I go back the way I’d come,
Or trust the way and carry on.
You might think this an easy decision,
But you’re not looking with my vision.
The way I’d come was hard and long,
My fear is whether to carry on.
I know in my heart the choice to make,
But heart and head are never mates.
They pull you one way, then the next.
So which way is the safest bet?
I know I will have to soldier on.
To not look back but forge straight on.
But fear is ever at my side.
Will I fall and hurt my pride.
Be brave – fight on –
Move ever upwards.
Stay focused – strong.
Win through – move on.

Less Than a Week to Go

Less than a week until the flight, main thing worrying me is if the flight will be affected by the ash from Iceland. Also if there is any problem with picking up the 2CV and getting it on the road in Halifax. I fly out to Halifax by Air Canada so that should be OK. Ann and Rob fly to Calgary by British Airways so I hope BA sort their problems out.

Not sure if keeping fit for this trip is important. Played tennis yesterday and came through that OK so I am sure it will go OK. When I am on the trip our friends in Italy are sorting out a few fund raising events. Rob's message seems to have worked lots of donations to JustGiving.com website.

A Message from Rob

The following was written by co-driver Rob Magie.

Of of my dearest friends, Colin Craythorne, has currently got the upper hand in his battle against leukaemia and is about to embark on an epic trans-Canadian drive in order to raise money for the crack team of cancer specialists at University College Hospital in London. These are the people who have been looking after him over the past three years. During the trip he will be visiting cancer patients along the way to try and give them hope and encouragement in their ongoing battles with cancer. You can learn more about this at:

www.journeyofhope.uk.com

For my part, in a moment of weakness, I have agreed to help drive his aging 2CV over the Rockies from Calgary to Vancouver from the 12th of June. Assuming that the drive train doesn't pack up, leaving us like the Donner party, we should arrive to a ticker tape parade in Vancouver some time on the 15th of June (well maybe just Colin's lovely wife Ann and a a group of friends and family). Before the wise-cracks start this is not a sequel to "Two Fat Ladies".

I am sure there are very few of you whose lives remain untouched by cancer and would be very grateful if you would consider making a donation, no matter how small, to assist in this effort. A page at the JustGiving website has been established which enables one to make a donation in a matter of minutes. This can be found at:

http://www.justgiving.com/colin-craythorne

Many thanks for considering this. Please feel free to monitor and encourage this mad undertaking via the Journey of Hope website. If you hear reports of acts of canibalism near Kicking Horse Pass, BC that will be a fairly good indication that that the 2CV was not up to the task.

Cheers

- Rob

Training

After a drive down to Italy 1100 miles I think I am in training for my drive across Canada . We left the UK Saturday morning stayed in France Saturday night and got to Loro Piceno 7.00pm Sunday evening. The chickens and cat seemed to miss us. We own a 2CV in Italy so in training all week as there are a lot of people to see. A lot of fund raising will be taking place in this area when I will be on my trip.

I had a lot of Reiki when I was having treatment. I have tried to keep it up and Chris has been keeping it up in Italy.

Leaving Drink

Colin will be having a leaving drink at the Prince of Wales Public House Hertingfordbury Herts May 17th 2 days before setting off to Halifax.

Pre-trip Pictures

Car got to the port today just a normal port hard to get some good pictures also took one out side the wing we are raising money for. The mile are as we set off from London. The picture is of me and Bernie the first co driver. Also the lady is Gema who has always been my there at the hospital since the start of my illness and up to now.

Test Drive

May 3. My wife Ann and I pause while on another test drive. We as well as the car are tip top.

Journey of Hope Staff and Participants

Throughout the course of my trip, I will be working with a lot of different people, without whom this journey wouldn't be possible. People from all over the world will be helping with the long drive, the 2CV, communications, outreach, and research. Below is a list of everyone involved in this Journey of Hope:

Colin Craythorne
Hertford, England, Loro Piceno, IT, Pattaya, TH
Survivor & Lead Driver

Corey Brazo
South Bend, IN, USA
Survivor & Travel Coordination

Chip Gillespie
Westport, MA, USA & Georgian Bay Township, Ontario CA
Survivor & Co-driver

Paul Rodman
Tonbridge, England
Survivor & Co-driver

Lloyd Craythorne
Whistler, Vancouver CA
Family Survivor & Co-driver

Rob Magie
London, England & Macerata, IT
Family Survivor & Co-driver

Rob Metcalf
Sydney, AU
Co-driver

Bernie McKellow
London, England
Co-driver

Malcom Maxwell
Hertford, England
Co-driver

Derek Ligget
Hertford, England
2CV Specialist

Martin Jack
Hertford, England
2CV Specialist

Joe Hennes
New York, NY, USA
Family Survivor & Web Communications

Jessie Stogdill
Granger, IN, USA
Family Survivor & Media and Events

Jeff Carmen
Edwardsburg, MI, USA
Family Survivor & Project Coordination

Shirley Orth
Holland, MI, USA
Family Survivor & Research

Abbey Of Ellington, USA
Project Security

John Klawiter
Elkhart, IN, USA
Research

New clutch

Thought after my trip we would should fit a new clutch today. Its all back and working but the photo was 9.00am.

Collecting donation

Had a good trip down to my mothers to collect her and her friends donations. 600 mile trip. 2CV went well average speed 60 miles per hour. Could not find any problems.

2CV in Arsenal FC football stadium

Got the 2CV into Arsenal FC football ground today. Driving down to Devon in the morning, which is about 5 hrs drive after a stop at my mother's old peoples home.

Laura's Story

by Lesley Parsell

Our beautiful daughter Laura was diagnosed at the age of 24 with cancer. This cancer had been growing in her abdominal cavity for a very long time, but as with many cancers there were no visible symptoms. This was a rare type of cancer called a sarcoma. This is a fatty tissue cancer that does not invade organs within the body, but sticks to them. So unless they are diagnosed early or are in an area of the body where an extra margin around the tumour can be removed, an operation is not usually possible. This was the case with Laura. Our only hope was chemotherapy, to shrink the tumour. Unfortunately everything was against Laura. It had been growing for so long that it had attached itself to her major blood vessels and research into sarcoma treatment is very slow due to the rarity of this type of cancer.

Laura was originally admitted to our local hospital, but was soon referred to University College Hospital (UCH) London. She was put under the care of Dr Beatrice Seddon, who has specialised in the treatment of sarcomas. Dr Seddon is a wonderful person as well as a fantastic doctor and she related to us with great care and truthfulness. She answered our worries and concerns to the best of her abilities. Unfortunately the choice of chemo was very limited, but initially Laura responded well and the growth of the tumour was halted and even shrank slightly. After some time the tumour began to grow again and a new treatment was needed. During all of this time we were not only supported by Dr Seddon, but also by Macmillan Cancer Support. A lovely lady called Deidre Driver. She really is an earthly angel and when we were struggling with not only the disease, but also the NHS system, she was always available for help and support.

The next chemotherapy treatment did not have any impact on the tumour and so we had run out of approved chemo drugs. What would you do as a parent? What the NHS was saying to us was that's it, stop and wait for her to die. Dr Seddon could do no more for us within the NHS system.

At this time there was a new chemo drug for sarcomas, but it had not been approved by NICE and although we applied for funding this was refused. We were not ready to give up on Laura and decided to fund the drug ourselves. We believed that the application for funding had been presented to the Exceptional Treatment Panel at our local PCT. Laura was presented with an opportunity to go on television to talk about the refused funding and because of this I contacted our PCT. I subsequently discovered that the request had not been treated as a special case, even though all previous funding had also been referred to them. After three days of contacting different people by telephone the PCT decided to fund the drug. Is it right that we had to fight for help, when we were in a very vulnerable state of mind? Our daughter was dying and we needed care and consideration. Perhaps we are lucky that we have the ability and support from friends and relatives to fight for our rights, but what about all the people that cannot.

Roger Wilson from Sarcoma UK also supported us. Roger gave of his time and knowledge to help us to achieve all the help for Laura that was humanly possible.

This is a fairly new charity that is helping to further research in cancer drugs that will also help to treat sarcomas. Their dedication and enthusiasm is inspiring.


Unfortunately Laura was not able to tolerate the new drug and although she was admitted to The Royal Marsden Hospital in Surrey for a drugs trial, she was too weak to begin the treatment. This is another wonderful hospital with very special staff. Laura spent six days in The Royal Marsden and lost her fight for life on the seventh day. Laura had fought this terrible disease with a strength and fortitude that was amazing to witness. The support of all the special people around her I am sure made a difference.

Laura died on 24 February 2008, she had fought this disease for two years. She was a fantastic primary school teacher, loved by all the children in her care and just starting out in her life. She was 26 years of age.

Their needs to be more consistent help for the wonderful people that dedicate their lives to caring for people suffering with terrible diseases such as cancer. This is why I support anyone who is trying to make a difference. Colin and Laura were sometimes in UCH at the same time. Colin was being treated for Leukaemia. Laura was being treated for sarcoma. Their experience exactly the same with all the hospital staff around them. They make a difference and all funds raised will make a big impact for the hospital and staff. I applaud the effort Colin is making and will be with him all the way in mind if not in body, as I am sure Laura will be.

Please Help!

I’ve always called myself ‘the little fat bloke’.

Today, I call myself ‘lucky’.

Why? Because I’m alive.

Many leukaemia sufferers do not survive!

Now I want to do something to improve those odds.

But I need your help to help others diagnosed with leukaemia.

Next May, I’m going to drive my ancient, uncomfortable but loveable Citroën 2CV 3,850 miles right across Canada.

And I would love you or your company to sponsor me.

Yes, I know some cancer sufferers have raised money by running across the United States or walking across the Sahara or other such momentous efforts. I can’t match those. I am not fit enough or healthy enough yet.

But I want to do my little bit to help the magnificent Hospital Department that that has helped me since 2006.

Ever single penny I raise will go to The Leukaemia & Lymphoma Unit, at the University College Hospital, in London.

I know only too well the pain, the trauma and the anxiety that patients and their families face, when a patient is diagnosed with leukaemia. Nothing can prepare you for that moment, a moment when your life and the lives of those around you are changed forever whatever the outcome.

And so all money raised will be used not just to buy state of the art medical equipment, but also to provide free complementary therapy for patients and their families to help them cope with the daunting times ahead.

On my journey across Canada I am going to stop at hospitals to talk to cancer patients, their families and their friends. I will tell them how ‘a little fat bloke’ coped, and try and bring a little ray of hope into their lives.


Please help me to give others hope by sponsoring my trip. You can pledge money by donating via: http://www.justgiving.com/colin-craythorne

There are various ways you can sponsor me.

1. By the mile. The trip will be 3,850 miles. So a ½p a mile would mean a maximum of £19.50, 1p a mile just £38.50, and 2p a mile a generous £77 etc.
2. A fixed sum.
3. Sponsor a leg of the journey and ride with me. Yes, for as much as your budget will allow, you can join me in my little 2CV and ride a leg of the journey e.g. Calgary to Vancouver. And yes, you can plaster the car with your company logos, which should be filmed by TV news stations.

My journey will start 23rd May and end in Vancouver on 19th June 2010.

Finally I would like to say something personal.

I believe that one of the reasons I have survived so far is that during the darkest moments of my battle with leukemia, I set myself targets. One, which I achieved within days of leaving hospital, was to live to celebrate the birthday of my lovely wife with a large party for her and our friends.

This journey across Canada is another target I have set myself. If you can help me achieve it and help me to help others like me I will be eternally grateful.