Tag Archives: stem cell transplant

One big muddle

It’s been a while since I last wrote (hmmm…..a common theme to this blog!) so I thought I would try to find half an hour to write a new post.

Things have been absolutely manic here; Nick took a new job, Nick left aforementioned job and took 3 months off work to enjoy the summer, Rebecca started secondary school, Sam has had exams for his secondary school, we bought a house, we redid the house and we put the house back on the market! In addition, I have started working for myself in an attempt to revive some sort of career in the charity sector and/or HR (whilst still being available for the kids). And the result…..one very tired me, and life turning into a big muddle!

In many ways, I’m not really surprised. It’s a lot to keep on top of at the best of times, but when your memory is shot like mine has become, it becomes even harder. I used to pride myself on my organisation skills and my ability to do ten things well at the same time. And my ability to remember names and what those people told me. Now…..not a chance. I don’t really know why. It could just be getting older. I know my older family also struggle a bit with their memory. Or it could be ‘chemo brain’ that everyone talks about. My body went through a fair whack when I went through my Stem Cell transplant in 2011, and in reality, I am still on a mild chemo drug for my maintenance now.

Whichever it is, it can be remarkably frustrating though. I tend to be someone who has lots and lots of ideas.I’m sure it drives people round the bend as I always have something that could be done better! My issue isn’t coming up with the ideas though, it is actually managing to remember them through to fruition. The number of great presents I’ve thought about, and then before I know it, it is 2 days before I need it and I have no way of sorting it out! Or birthday cards that I get a month before the date and then forget to send and so I look like we don’t care! Or friends I think about regularly but don’t call because I or they will be busy, and then I forget until it is again, impractical (thank god most of my friends forgive me my lack of calls!)

I definitely need to come up with a plan. Lists are one thing, but I often forget to write it down before it is forgotten….or I end up with lists in places that I forget about….so very frustrating. When we, one day, get our new home (yup, still in rented!), I hope that I can set up a system with a great big whiteboard to use! It could well be the answer.

Anyway, let’s forget that for now (no pun intended). One great thing that has happened this month is seeing our 12 year old start secondary school. I look back to when I was diagnosed with myeloma in 2009 and remember how convinced I was, that this wouldn’t ever happen. I don’t even think the consultants wanted to put my mind at rest on that one. It is hard to put into words how it felt to see her walk away from primary school and start on her new journey….and how proud I am to see her do it all with such happiness. Sam will do the same next year and I don’t have to worry if I will see him off which is amazing. Of course I still worry a bit about the future. I’d be lying if I said there is never any concern about that but I do feel like the concept of seeing them off to University is a realistic one now. I’m not wishing their lives away, but I need things to keep focusing on and looking forward to…they help to keep me positive!

It’s also why work is so important to me. I’ve now set up (through necessity!) as a sole trader so that I can do corporate fundraising for a Birmingham based orchestra that helps the local community. I’m hoping, that if I can work well with them, it may lead to more work and help me to have a role within the house as well as being a mum and wife. Oh, and if anyone out there needs help with their social media, minute taking, internet research etc, I’m happy to take on roles like that alongside what I’m already doing!

Right, talking of work, I probably  ought to go and do some now! I have my monthly hospital trip tomorrow, and my niece’s hen weekend on Friday so as always, life is very busy!

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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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Happy Birthday dear stem cells!

I know that I probably do this post every year, but every year I am even more pleased to reach another ‘stem cell’ birthday.

4 years ago today, I was given back my stem cells at the Marsden in Surrey. I remember it far too well, especially the fact I promptly threw up as they pumped them back in to me! But despite the fact that it was a horrible experience, and 6 months of my life that I would happily forget, I can’t forget the fact that it has put me into a remission that has lasted far longer than I could have ever asked for.

I was talking about my remission just a couple of days ago with another myeloma friend. She had her transplant a couple of years after me and is slowly seeing her figures creeping upwards. That time that none of us want to hear about. But, and this will sound strange to anyone who hasn’t gone through treatment, she can’t wait to start again because it means she will get to have revlimid as a maintenance therapy afterwards. And I totally get that. I totally believe that my revlimid is what has kept me in remission for the last four years. It is why I used to get nervous if they ever talked about stopping it. Now it all may be in my head. But I don’t think so. And even if it is, who cares if it keeps me positive 🙂

I also reached the 6 year marker of diagnosis on Friday….I can’t believe it really. I continue to feel very blessed that I am doing so well and that I have had access to the right treatment for me….and that my fears all of those years ago have been proven wrong. Long may it last.

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