Tag Archives: support

Post 33 – For those who are forgotten

I read a post a month or so ago by another myeloma patient about caregivers (god I hate that word though!) for myeloma patients. It made me stop and reflect a on the situation we live with in our house and the relentless care and support I get from my family and friends….but so much more than them, what Nick does for me on a daily basis.

Cancer is pretty terrible. There is no debating that, and, no matter how much as patients, we might look to everyone else that we are coping, that life is ok (when we are lucky enough to be able to say that) and that it doesn’t get us down, and no matter how much that may be true sometimes, living with cancer of any nature is hard work. There isn’t a day that goes by, where something doesn’t remind you of your cancer, of the treatment that you’ve had, or of what might come. At least that is the case for me.

But for all of that, and no matter how hard it is for me, I think that it is even harder for Nick. Yet he is my absolute rock and my strength whenever the going gets tough. He is the one that holds us together as a family when I’m ill or sad. He is the one that has to be strong for me and the children when I’ve lost the ability to be strong myself. And with all of it, he is the one, that should things turn for the worse one day, has to live with the contemplation that he might be left without me in his life anymore.

Please don’t get me wrong. We’re in a very strong position with my health at the moment. There is nothing to suggest a relapse is on the cards – I am well, my blood results are good, I’ve just had an MRI that shows no signs of any myeloma in my bones. But as I live with my fears, and address them on a daily basis as we make decisions (where to live, whether to work, how to bring up the kids), the burden that places on me often gets pushed onto him.

As many of you know, I am pretty engrossed with my fundraising too. Now Nick supports me 100% with this and has always encouraged me to do it. He can see the positivity that it allows me to place on our situation. I think that we both believe that it has given me a real purpose. However, the downside is that it means that he also never gets a break from the myeloma. As I write this, I realise that perhaps I have been very selfish over the past four years. I have always asked him about my fundraising exploits first but I’m not sure I have truly ever allowed him to think that saying ‘no’ to them is an option. Even now, as I draw to a close with my 40 Challenges B440, he knows I’m already wondering how I can get the last £15k raised that would take us to the £100,000 fundraising total. And I don’t know how to stop.

But I am genuinely worried that I am expecting too much of him. He works so hard to support me and the kids, often working 13 hour days at the moment. And on top of that he then comes home and finds he needs to help with the ironing, the clearing, kids activities etc. Recently he has also taken on more than his fair share in helping me to deal with the death of my mum. He does it all without a complaint. Not many men would. I don’t think I take it for granted but I do wonder if there needs to be more thought on my part about what he has had to give up to support me so fully.

I often joke about Nick not being much of a social animal, but as I write this, I wonder if part of that is because living and caring for a cancer patient ( and the family) and living with the whole ‘what if’ scenario is just absolutely exhausting. And living with someone like me who sometimes forgets the right priorities and becomes too focussed on things like fundraising, must make it especially hard.

I needed to write this post. I needed to remind myself of just how amazingly lucky I am to have Nick beside me. He is the best (even if I’m rotten at showing that to him at times)- the best support , the best dad, the best husband I could wish for, and most importantly, the best friend I could wish for to laugh and confide in.

And I needed everyone else to know just quite how much I love him….He is amazingly special.

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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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