Why I’m Doing #ELF_Twicycle!!

In almost five weeks time I will be sat on a bike cycling a near 400-mile route around Somerset, Devon and Cornwall. Needless to say I expect it to be arduous mentally and physically, however, all for a good cause, Exeter Leukaemia Fund.  Those aware of my madness have been asking what my motivation is for doing it. I don’t normally talk about it, but as by way of explaining myself I attempt to do so here. I lost my own Dad to a different form of cancer nearly 20 years ago. In fact, when I’m on the ride, it will be almost 20 years to the date when he was first diagnosed. Times flies!

Many of you unfortunately know what a life threatening diagnosis can mean. For me it was life changing. For days, weeks and months I asked the second biggest question of all; why? Then I spent time dissecting why I’d caused it. Mine was the argument we’d had five years before over who’d eaten all the biscuits in the tin! Stupid stuff!

The first time dad was in hospital, I couldn’t build up the courage to see him. I was scared I would flip out and fail him in my duty as the strong daughter he had nurtured me to be. But I got used to the wires, the constant scratching of heads by professionals and the bewilderment I felt. The roller coaster ride between hope and despair, intersected with great hilarity, because sometimes humour was the only way we could cope. I once asked him how he was feeling, his reply “Like a pin cushion in an animal laboratory” was his response characterised by a wry smile!

I found hospital at night quite an eerie place to be especially when I had been there hours and was waiting, just waiting, not quite sure what for. Good news, bad news or nothing. Sometimes it was emptiness. I slept in the corridor just to be close to Dad who couldn’t be quite close to me right then because of how he was feeling. I found that when someone I cared about was so gravely ill, some days I felt zilch, Dad felt zip, our body’s ways of coping with the stress, stalling in a state of numbness that could last days before the emotions all came rushing back.

Personally I was lost. The person I thought of as my hero (unfortunately I never got to tell him that) was battling with disease, drugs and pain. It was truly awful and incredibly draining and debilitating when Dad’s illness was played out week by week over a turbulent 18 months. Anxiety became something I lived with everyday. The care we received from the professionals was critical at this time.

The last six weeks I spent with my Dad were, absurdly, some of the best. We shared fantastic stories and experiences, the one about the badger being one of his best. But I also watched Dad grow weaker and as a family we began to accept the inevitability of it all.

And then, he was gone at 6.21pm on the 23^rd December 1992. Two days later, I and the rest of his family, were opening Xmas presents that he’d written the tags to. That and the funeral I found incredibly hard. He was a good man, a quiet yet strong one, who worked hard for his family, too hard. He was incredibly brave and met his last few months with astonishing dignity. With his intelligence, I know I would have had an amazing relationship with him today. I’m sure, that on many occasions, we would have sat chatting until the early hours of the morning over good rum with a current affairs discussion as a pleasant accompaniment.

I rarely talk about that experience; it’s a long time ago. Friends have been there over the years supporting the different stages of grief. Today its a distant yet vivid memory. However, I do remember what it’s like to be with someone during his or her gradual decline. Despite the turmoil it was a privilege to be there. I became a stronger person. And you do become happy again.

Whilst Dad died of a different serious illness than Leukaemia the stresses, strains and everyday concerns are very similar. As a young adult (I was 24) dealing with such a traumatic event, it was important that the diagnosis, care, treatment and support we got was of the highest quality and the most appropriate. We received some tremendous help. Encouragement that provided great strength.

Knowing your loved one is getting leading edge treatment (Dad had a bit of new kit flown in to the North East to control a pulmonary embolism so he could have a life saving operation) and that they and you are getting the emotional care so badly needed is important. And this is what ELF does. Life changing conditions such as leukemia, lymphoma and other blood disorders not only affect the individual but their families and those who are nearest to them including friends and work colleagues, who we often forget about.

Patient support is the cornerstone of their offering and so important. Over the last 25 years they have supported patients and their loved ones though counselling, complimentary therapy, refreshments and more recently craft sessions for in-patients. Their support specialist who works at the Haematology Centre is a source of comfort to many providing emotional and practical advice in person and by phone.

They also provide the funds for state of the art equipment which would not normally be bought by the NHS. This includes the FACS machine costing over £32,000 which analyses blood very quickly, reducing waiting times and anxiety for patients and their loved ones, allowing treatment, if required, to start straight away.

There have been many great and important medical advances in the last 25 years. For example, the 20 years survival rate in 1987 for leukaemia was negligible but today this has increased to over 40%. Lymphoma survival rates have also improved but there is still much to achieve. ELF supports haematological research often locally through the Peninsula Medical School. For example they are funding a 3 year myeloma project which is a £30,000 commitment.

So, I guess, I’m not doing this ride for my Dad, I did those charity events some 18 years ago. This ride is to raise money for everyone affected by Leukaemia but especially those young adults who are being treated for the illness itself, those supporting someone close to them who have been diagnosed and those who are triumphantly surviving it! I know only too clearly what it like being a young adult in turbulent times, support is critical.

Please support them through my efforts:

For more on ELF go to: ELF

You can donate here: Virgin Money Giving

And follow the fun on the ride here: ELF_Twicycle Challenge