Post 19 – Myeloma Awareness Week

This week is the perfect opportunity for me to write a new post. It is Myeloma Awareness Week. And I have myeloma…just in case people didn’t know!
But I think I have written quite a lot recently about what myeloma actually is. So I thought I’d use this post to write a little about what Myeloma UK do and why I am so passionate about fundraising for them. They 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 two, and plan to go to the new Oxford one this year. 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 It is often scary and gives out of date and worse case information!).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 works 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! Without any knowledge that it had been applied for….he is far too modest to have wanted it himself.

 

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 would also like to give a special shout out to their Chairman, Judy Dewinter. Judy, works tirelessly for the best interests of the charity, but has also been a massive support to me as an individual. She does it all quietly in the background too. I was lucky enough to make friends with Judy in the early stages of my myeloma….and know how much she throws her heart and soul into all that she does for Myeloma UK. She made a huge difference to me. All in all, they are a massively impressive team….and 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!

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

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