OMG – I can’t believe that it has been nearly two months since I last wrote. But having read a blog recently of someone who summed up their 2012, I thought that perhaps it would be a good thing to do. Both for me, and for those around me. Because I have to say that 2012 was a great year for us, both as a family, and healthwise….long may it last!
I have been really lucky to be surrounded by fantastic family and friends throughout my life, but after a couple of years where times have been tougher (with treatment), it has been good to enjoy everybody for far more positive reasons. 2012 saw a fantastic holiday in China with my sister and her husband, and a Glitz and Glamour Ball that I will remember for the rest of my life. And that was interspersed with getting my life back, nights out with good friends, and feeling like things are pretty much like normal again.
A diagnosis of myeloma 3.5 years ago turned our life absolutely upside down. I went from being as sure as I could have been that life would go according to the ‘usual’ plans, to thinking that I wouldn’t get to see our children leave primary school. But I am so lucky that time has helped to settle our thoughts on that, and over the past 12 months, I have genuinely gone from pessimistic thoughts to thinking that I really could still be here as they go through those horrendous teens – perhaps I’ll wonder why I wished for that when it happens!
So anyway, to start, an update of where I am healthwise at the moment. It is now nearly 18 months since my stem cell transplant and I am really lucky that my paraproteins remain at just 2 (they have never gone lower than this) and everything else ‘bloods’ wise, looks ok. Paraproteins are a sign of the presence of myeloma and whilst they aren’t the only thing that indicates its return, they are a pretty good indicator. Before my transplant, they had risen to 50, so 2 is absolutely ok with me. I am on revlimid maintenance at the moment on a trial called the Myeloma XI trial. I didn’t quite manage to stay on the full dose as it seemed to make me ill on a regular basis (revlimid can lower your immunity to illnesses) but am now on a stable 10mg dose which I seem to be coping with really well.
The only blip in the system, which, as things stand I would take any day, is the fact that I seem to be getting Peripheral Neuropathy (PN) again. It was only as my consultant and I were talking things through, that we realised that the neuropathy that we had attributed to Velcade pre transplant, had probably actually started as a consequence of the revlimid, and then developed due to the velcade. I have to say that I felt this was slightly unfair….to date they think only 1% of revlimid patients get PN….just had to be me! With a cancer that is so rare, especially amongst younger people, women and white ethnicity’s, it felt a bit wrong. But then I just have to remind myself that in comparison to many people, lots of whom I am now privileged enough to call my friends, I AM very lucky. AND the neuropathy is only at present, a bit irritating, rather than being painful!
So that is it health wise. I had really wanted to plagiarise another bloggers New Year entry and give a run down of 2012….but to be honest, I only have a couple of things to put into it 😦 Not that I should be worried about that as both were pretty BIG things for us. So I thought I’d just summarise my year briefly…you may be interested, you may not be….oh well.
I turned 37…hurrah…another step towards that 40 that many people dread but I now view as a totally positive place to be!
I had also managed to get 4 of my lovely friends; Justine, Karen, Lisa and Taniece, to commit to helping me to organise a small ‘Glitz and Glamour’ ball to raise about £5,000 for Myeloma UK….haha bloody ha! Little did they know! We held our first meeting at the beginning of the month and off we went! One immediate bonus was that Taniece runs a Wedding company and so could commit to helping with our dinner tables on the night!
We were lucky to get our friend Nick Healey to agree to help in his own time with our website, and his friend Steve Mitchell agreed to sponsor the site! We also managed to get a lovely lady Gwen, to agree to do our design work 🙂
Venue for the Glitz and Glamour Ball was confirmed.
Nick and I finally redid our bedroom with the help of his mum and dad – it was so nice to have a room that I didn’t associate with being ill! Another page turned 🙂
Hmm, not much this month, but I did meet with people at the Handy Croissant Breakfast Club in High Wycombe…hosted at the Holiday Inn. Whilst it didn’t end up as fruitful as I had expected, the Glitz and Glamour Ball was really lucky to get some key sponsors from here who were really good at supporting the Ball. I promise this post today will be the only time I mention people, but thanks to Ian and Aileen at Excel Office Supplies, Matt Trapnell of WPA, Bruce from Aspen Graphics, Dustie from the Tilsworth Clinic and Pat from Treasure Trails (Bucks & E. Berks).
A quiet month! Preparations for the Ball continued!
But most importantly, Autostyling UK offered to be our main sponsor! So generous of them, and it meant that we could relax a little about some of the things that we wanted to do to make the Ball great!
This month saw the happy news that Nick’s cousin had given birth to a lovely little boy called James. Events like this were always happy, but they now seem even more special.
On the Ball front, we were lucky enough to secure Nick Wintle from IGS UK, who was so generous in his offer to sponsor the printing for the Ball…it is only with time, that I have realised exactly HOW much this cost him. I didn’t know Nick before this event, but he is a true gentleman who I hope that we will always stay in touch with. Without him, I’m pretty sure that we would not have achieved the event that we did.
We celebrated the wedding of Theresa and John….so lovely and all about family and friends. Rebecca did an impromptu speech (hmmm, yes, I sunk in my seat, but she did do us proud!), and there were lots of smiles!
Visa’s were finalised for China…hurrah!
I celebrated my one year Stem Cell Anniversary.
Pretty amazing to us really, especially since we had heard of many people who had received their transplants after me, who had already relapsed. Whilst to many of you, a year may not seem like much to be celebrating, to us, knowing what myeloma can mean to people, a year is fantastic. Not to say that I don’t want many more before I relapse, but in my heart of hearts, I know that this may not happen.
Beijing with my lovely sister Chris and her husband Dave. We owe them a huge amount for their absolute hospitality while were out there. 3 weeks living with them could have been disastrous – too much time with family? Nope….they hit the nail on the head and we got a lovely mix of quality time with them, time as the 4 of us, and time for just Nick and I to catch up and breathe after what had been a tough year.
It was the first time in 3 years that I was really able to put Myeloma behind me and pretty much think that I didn’t have it. No-one out there knew and so we went back to how life was ‘pre-diagnosis’. I had to wear a mask on days of high pollution to ensure that it didn’t make me too ill, but other than that we were as ‘normal’ as ever. In the run up to going out to Beijing, things had been getting intense with the Ball, but being that far away, I was able to switch off my phone and email, and leave it all for 3 weeks. It was an amazing feeling, and I have to say, that I sort of dreaded returning to the UK and all that would mean.
Well this month just saw everything begin to go a bit mad. We had both of the kids birthday’s to prepare for, a school fete where I was holding a Myeloma UK stall, plus all the Ball stuff kicking off in earnest. There were programmes to be designed, advertisers to be pinned down, and wording to be finalised. When you aren’t paying anyone anything, it is hard to be too pushy, but I had to be to ensure that we managed to get every penny that we could for Myeloma UK. Meeting after meeting took place, and I pushed the team to their limits (or so I thought until we reached October!!) – they were all busy with other work commitments etc but they NEVER said no….I am indebted to them all.
Time for the nervous breakdown! I don’t remember much of this month as it went by in a blur as we ironed 300 chair covers (The Royal We I hasten to add….Nick did 150 of them, a friend did another 75 and Taniece (Hire Heaven) did the rest!), finalised programmes, put the 2 auctions online, drew the raffle and distributed prizes, finalised our Event Programme and managed to stay friends when I insisted on certain things that I wanted from the team. How they didn’t plot to kill me I’m not sure….I must have driven them round the bend with the little things that I was being insistent on!
But Nick and I were over the moon to celebrate the arrival of our 2nd Gascoyne nephew/niece when Darcey Rose Gascoyne was born….and the kids were just as excited to welcome a new gorgeous cousin!
I have to say that this was what this year really summarised for me. It was what I, and the team, had worked so hard for….by the end I had been doing 16 hour days to make sure that it all tied up.
The Glitz and Glamour Ball in aid of Myeloma UK.
And blimey did we do well with it 🙂
It was the most spectacular night if I say so myself. A night with a few tears, but lots and lots of laughing, and an atmosphere that I think (and please don’t correct me if I’m wrong!), was pretty special. It was definitely on a par with our wedding day just because of the hard work that had gone into it. Someone reminded me just beforehand, that our Christmas letter in 2011 had said that we wanted to raise £5,000. Well, I decided that wasn’t enough, and over the year, had increased our target to £10,000. By the night, I had decided that I wouldn’t be happy with less than £15,000. Well, thanks to all the amazing people who supported us, we have currently got a total of £29,386! And we are still hoping for a further £300 from one of our Auction lots! So close to £30,000 I am having to stop myself from being disappointed that we didn’t reach it! Greedy or what. I just buzzed all night, and I hope that everyone else did too. I am so proud of what we achieved….not only the money, but also the awareness that I think we brought for the charity.
So then came December and if I had got a pound for everyone who asked me what I would do with my time now (!), we would have reached that £30,000!!!
It was a lovely December, and once we had washed up with the Ball, we were able to focus more on Christmas and the family. The kids got new bedrooms for the Christmas present, and so most of the month was taken up with that. They loved it! Sam was in KS1 ‘The Nutcracker’, Rebecca sang her heart out in her Carol concert, and they were both singing with the West Wycombe Chamber Choir. I had missed everything last year with being ill after my transplant, so it was fantastic to share it all with the kids and with family and friends.
Our family Christmas do, on the ‘Fraser’ side saw nearly everyone there – and that’s a lot of us when you consider that I have 5 siblings and 15 nephews and nieces (!) although we missed my brother in law who was in Beijing doing panto, my lovely niece Jo who has now pretty much immigrated to Oz, and James and Pippa who couldn’t make it, also because of panto commitments…oh yes and Nick who sadly had the dreaded lurgy that was circulating round West Wycombe at the time. Maybe next year we’ll both be there 😉
We had Christmas at home this year with just the 4 of us. Lovely. No more to say.
So yet again, I would just say thank you to everyone who supports us and remains friends with us. Life is busy and friendship takes time and commitment. And sometimes compromise. And we are now sometimes more selfish. But to those of you that have stood by us, we are ever so grateful and we hope that we have let you know how appreciated you all are. Here’s to a 2013 that will bring lots of health and happiness to you and your families. And where times are tough, please remember that we are here to support you like you have supported us.
And finally, this will be the last post that I put through to facebook….my blog was originally set up to be slightly more personal, but it sort of worked to have it linked to facebook while I was in hospital and in the aftermath. But I think I am a bit conceited if I think my story is something fb friends want to read and so I am taking it away now. (If you really do want to read updates, I think you can subscribe to it…). Thank you though!