A New Cancer database for Rare Cancers……

A few weeks ago, I had an email from Piers Kotting. We worked together during the launch of Join Dementia Research some years ago. He’s now working at setting up a similar database for Rare Cancers and he asked if I would write a blog for their web site encouraging people to sign up if they’d been unfortunate enough to have been diagnosed with a rare cancer, so here’s what I wrote……..

Imagine yourselves being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……Services are non existent in this area so you feel abandoned

That’s what happened to me in July 2014 at the age of 58 when I was diagnosed with young onset dementia

Now, Imagine, if someone if someone came along and asked for your opinions, asked you to be involved in gathering information. Someone who was genuinely interested in what you had to say. Someone who was willing to travel to your home just to see you. Imagine how that would make you feel………

Imagine the impact on your well being – finally hearing someone acknowledging that you still had something to give; that you still had an valuable opinion and views that mattered.

That’s what happened to me when I started to be involved in research 

When I was diagnosed with Young Onset Dementia in 2014 I was given no hope, the one word I so badly needed to hear at that point. It wasn’t so much hope for me but hope for my daughters, future generations, not to have to receive such a devastating diagnosis. Then one day I was asked if I’d like to be involved in the launch of a research database called Join Dementia Research. This was the hope I desperately needed so I jumped at the chance. I refer to it as a matchmaking web site for researchers and willing volunteers.

Without research we can’t change the future and without hope our lives seems worthless. Now I’m involved and have been involved in so many research trials that I can no longer list them all; clinical, social and technological, all equally important. 

So I’m here before you today as someone all researchers seek out on a daily basis – a willing participant…..- 

Why am I so willing? because being involved has given me back that sense of purpose that a diagnosis of dementia stripped away from me. Because research gives me hope that my daughters will have a better future.

That’s why I wholly support the introduction of the new research web site for rare cancers, www.rarecan.comThis aims to do exactly the same for people unfortunate enough to be diagnosed with one of the rarer cancers. 

Often, with rare types of any condition research is hard to find, harder to come by, this web site will enable YOU to identify yourself as a possible participant. At a time when you’re probably at your lowest, having just been diagnosed, taking part in research will give you back that sense of worth, of value, just like it gave me. 

Remember, we can’t change the future without research …

They asked me to provide a photo of me which represented hope ……..and the first that came to mind was this…

You can hear more about this wonderful new web site below…

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

8 thoughts on “A New Cancer database for Rare Cancers……

  1. Useful information, Wendy, thank you. (Note to self: must keep this so that I can find it easily if I should need it for myself or others). Thank you for the lovely photo too!

    Liked by 2 people

  2. Brilliant WEndy – now that bit about the hope of research is going straight into our new strategy! I’m thinking we copy that in as a case study in a highlighted box. Damian

    Liked by 1 person

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