Happy 5th Anniversary

Every year I write this post…..and I make no apologies. This is an amazing day for me to remember as it is the 5 year anniversary of when I had my Stem Cell Transplant…the point at which my myeloma was put into remission, and, thank god, has pretty much stayed there ever since.

This year, it has felt even more emotional and even more special, as this week, our oldest is leaving primary school and will be off to ‘Big School’ in September. I am so excited for her and all that it will bring. We have a raft of special events lined up for her in the run up to her leaving her primary school and it included her ‘Leavers Performance’ last week. Now Rebecca and Sam only joined the school last September due to us relocating up to the Midlands. So when she told me there was a song in it that would make the parents cry, I warned her that I wouldn’t be ‘that parent’ as she hadn’t been there long enough for me to feel emotional about it. Her friendships, whilst really good, aren’t the ones she has had for 7 years and basically it just wasn’t going to happen.

Yes, you’ve guessed it….before the song even started, I had tears rolling as I realised that we had made it….we had got her to secondary school and I was here to see it. Not only that but I will see Sam go next year. And I also strongly believe now that I will get to wave them both off to University in 7 years times.

It has been a rollercoaster of a 7 years. Some of it has been incredibly difficult for all four of us but I am so proud of how the children, Nick, and I, have coped. We have got through my diagnosis, survived my treatment programme, and dealt with the awful reality of saying goodbye to many ‘myeloma’ friends who have not had the luck of the draw that I have had. Even now, as we watch my figures, month after month, we manage to keep living our life fairly normally, and I hope most of our family and friends would agree, fairly positively.

As we go into this next year, Nick is looking at a new role with new responsibilities, we have just had an offer accepted on a run down house in our local area, and Rebecca starts her new adventure…. who knows what I’ll be writing about this time next year!

 

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The #MyelomaAwarenessWeek Day 7

I’ve spent most of this week trying to post various bits about myeloma, Myeloma UK and how it impacts people. I hope that #MyelomaAwarenessWeek helps people to understand what Multiple Myeloma is, to feel informed and empowered, and maybe even to help. Most people who know me, will know that I’m not shy about talking about my cancer. It doesn’t scare me and I am happy to discuss it with anyone who needs support with their own myeloma, or with people who are just interested. Myeloma doesn’t define me, but I suppose I sort of see it as ‘my job’ to help to raise awareness and funds to help to stop it being classed as ‘incurable’ and make it ‘chronic’ instead.

So, I make no apology now for doing a ‘Call to Action’. If what you have read has made you feel anything, perhaps you would consider helping. Share information with others, hold a fundraising event or help me with my events….all of those things are amazingly appreciated by both me and by Myeloma UK. I’m really wanting to get people to sign up to some of the Myeloma UK events that take place each year. I struggle now as I seem to break bones doing the most simple of things, but I would love people to run or walk or cycle for Myeloma UK and for me. There is an amazing London to Paris bike ride that was launched in 2016 but was such a success and so much fun, that Myeloma UK have already launched the 2016 one – if you’re a cyclist why not sign up? I don’t have a bike…that’s my excuse anyway!!

And if doing something like that or a 5k doesn’t appeal, I’ll be looking for sponsorship, donations and super special auction prizes for my Cheese and Wine event on March 11th! And donations of stationery, graphic design help and time are all so important to me holding a good event…..and hopefully those of you who came to the Glitz and Glamour Ball in 2012, know that I like to do things in style!

Have a think, and get in touch if you want to get involved🙂

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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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#MyelomaAwarenessWeek Day 6

Well I missed out day 5 as I’d been helping to organise a school ball and didn’t manage to find the time. So today, I ought to catch up although my banging head doesn’t help much!

I thought on that basis, I’d write a little about how myeloma tends to impact your life. It’s a hard one to write as myeloma is such an individual cancer and impacts everyone so differently. I feel like it has, for the main part, actually had quite a positive impact for me and for the family. That’s a strange thing to comprehend I think and I still feel a little strange saying it. I’m definitely not saying I’m glad I have myeloma or that if I could change our future that I wouldn’t get it out of the equation, but it has made parts of our life better.

I am probably one of the luckier myeloma patients. Because they diagnosed me so early, I haven’t suffered from bone damage or kidney failure to date. And that has meant that, whilst the period that I went through chemo and my stem cell transplant was difficult, draining and the biggest challenge I have faced, I have been pretty healthy ever since. The worst that I have to deal with, tends to be getting ill when I do too much and staying ill for longer. And perhaps the issue with my bones breaking slightly more readily when I’ve played sport!

So why has our life got better from a diagnosis of an incurable cancer? I think that it has made us rethink how to live it. That doesn’t mean that we do whatever we want…we still have bills to pay, children to educate and the same every day quandaries that other people face. But it has made us think about whether I should work if it makes me more prone to getting ill, whether Nick is doing the right job, whether we spend too much time keeping other people happy and not enough thinking about the four of us. We definitely prioritise us first now and that is important for most families I would imagine. And that choice, has meant that we do more fun things as a family and I love that!

But myeloma does impact lives…even for those of us who are relatively well. You don’t always see the impact so it is hard for people to ‘get’ it. Despite being 95% well these days, I do get tired more easily and like I’ve already said, if I overdo it, I can end up in bed for a week. I take tablets morning and night that are the size of horse tranquillisers…and if I don’t, that’s me taking up the bathroom for an hour (Sorry if that’s too much info!). I have mild chemo tablets as a maintenance treatment which, whilst they don’t impact me too much, do cause the other issues above, and mean that getting things like travel insurance is made much more difficult….and far more expensive! While I’m on it being a very invisible cancer…..those of you that get cross seeing people in disabled bays but without wheelchairs etc, please stop and think. When I was on chemo, it was all I could do to get to the shops for 20 minutes, let alone have to park miles away etc. I don’t need or have a blue badge anymore, but know lots of myeloma patients who do, and who desperately need them DESPITE being able to walk without aids!

All in all though, I try to let the myeloma impact my life as little as I can. But if I say no to going out despite having nothing else on, or can’t fit a visit in to see you, please don’t take it personally. We’re dealing with something that many of you can’t and I hope you never will need to, begin to imagine. And for those of you living with myeloma yourselves, or supporting someone else….keep your chins up🙂

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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!

Leave a comment

Filed under general, Myeloma, Uncategorized