#MyelomaAwarenessWeek – Day two

I thought I’d use this post to write again about what Myeloma UK do and why I am so passionate about fundraising for them. I have to admit that I have taken this post from one I wrote a couple of years back…but the concept is the same and what they achieve just gets bigger and better.

Myeloma UK are not like many other charities I am aware of…they 100% put patients needs at the forefront of their work. I know that if I go to them with a suggestion or idea, they listen. They have even on a number of occasions implemented things I have talked to them about. I love that about them…they aren’t too proud to learn from their ‘patients/families’. I wish all charities were more like that.

So, what do Myeloma UK do. Gosh, where to start really. Perhaps with what has impacted me on a day to day basis. Support.

1. SUPPORT TO PATIENTS AND FAMILIES

Myeloma UK help patients and families in so many ways;

Info days: They hold a number of info days that allow patients to meet other patients and learn about myeloma. That may sound simple. But there aren’t hundreds of people with myeloma in a town….and you can feel really alone when you have this cancer. So meeting other people is key. And they get the best professionals at these events sharing their knowledge. I have been to three over the 9 years I have been diagnosed. Even down the line, they help with making sure that patients and families know about what is on the horizon….without trying to offer false hope.
Infoline – This is crucial to many patients who don’t know how else to get the answers. There are so many people who don’t want to read the internet (and they might be right! It is often scary and gives out of date and worse case information!). The infoline has amazing staff (special mention to Ellen!) who really know how to help patients with medical and emotional information. They also have the ability to put people in touch with other patients and carers who are part of the PEER NETWORK. I help with this and I hope I am able to help people who are newly diagnosed, scared and who just need some reassurances.
Myeloma Support Groups – Whilst these groups aren’t specifically run or organised by Myeloma UK, they are supported by them and again, are crucial to some patients and families. I’ve never gone to one of these as there isn’t one really close to me…and I’ve found my support via the Discussion forum and in later years, via Facebook friends. But I know many people who have found these really useful.
Discussion Forum – This is a fantastic forum that is provided by, and moderated by, Myeloma UK. It allows patients to go online and find other people who are going through the same cancer, similar side effects and symptoms, and the same emotional questions that they are worrying about. When I was first diagnosed in 2009, this was what kept me going. I found so many friends through this site and whilst I don’t get onto it a lot nowadays (a good sign, because it shows that things are going well for me and I’m busy!), I know that it will come back into its own when one day I relapse (as I am sure will happen😦 )
2. RESEARCH

The next MAJOR thing that Myeloma UK are instrumental in achieving, is a massive impact in the research field. They are the only UK charity focused on the discovery, development and access to new effective treatments for myeloma and they invest approximately £1.5m a year on world-leading research! That puts my fundraising into perspective really, but also makes me determined to keep going with it. Without patients and families like ours raising money, this investment wouldn’t be possible. And this investment is helping to;

find new drugs, preferably with lesser side effects
find out what causes myeloma
understand why patients react differently to different drugs
potentially help to in the future, find a cure for myeloma
They do all of this by setting up clinical trials with the newest drugs, their Genetics discovery programme, and research with patients ensuring that the right areas of myeloma are researched as time goes on.

3. SUPPORT AND RESOURCES FOR HEALTH PROFESSIONALS

4. POLICY AND PUBLIC AFFAIRS

Now I’m no expert on what this actually means apart from that I know that they work really hard to build relationships with the people that they need to, to ensure that they achieve their aims and objectives. Nick used to work in the pharma industry, and has been massively impressed with what the charity, and especially their Chief Executive, Eric (Low) has achieved with organisations like NICE – drug progression in timescales that are highly unusual. They work tirelessly to build relationships and to learn from those around them. And their achievements have been massive. So much so, that Eric even got awarded an OBE in 2012 and Judy Dewinter (their Chairman) got recognised in the Queens Birthday Honours for 2016!

I am sure that I have missed lots that they do…..they are truly amazing and I am honoured to have the opportunity to know the Myeloma UK team. I hope I have many years to do fundraising for them that can help them with the work that they do- they are truly impressive. I am proud to be associated with them (even if I would rather not have myeloma!)

If you’ve stuck with this post to the end, thank you…..I know it was a long, serious one!

********

As many people know, I am hoping to spend the next 9 months fundraising again. To date, with the help of family and friends, I have raised over £90,000. I am hoping to reach £100,000 through holding a cheese and wine event and undertaking other activities.

If my posts make you stop and think, perhaps you would like to sponsor me with my #finalcountdown, to support Myeloma UK and help make myeloma history. To do this, please either;

go to my just giving page

or

text ‘GASC75 £x’ to 70070

e.g ‘DEBG99 £5′ if you want to donate £5

or

Get in touch and let me know how you would like to help. If you fancy doing an event, you can set up a just giving page and then link to my team page to contribute!

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About Deb Gascoyne

I am wife of one, mother of two and a person in my own right :-) I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
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