So busy, don’t have time to wipe my…….

I’ve had a gentle nudge recently about the fact that I haven’t updated my blog for so long! And they’re right….there’s no point having one if you never write in it. 

There are a couple of reasons that I haven’t updated it. The first is work, and I’ll update you on that in a moment. The second is that I’ve been struggling a little with why I write my blog, whether it is worth writing it, and whether it looks very self-indulgent. I think this has been exacerbated recently having been following a different blog which, to me, whilst very well written, seems remarkably self-centred and theatrical – I have stopped reading it due to the frustration that it caused me to feel. But it made me worry a little that people may feel the same about me and my blog and the thought of that made me positively flinch! So I’ve spent the last month or so considering whether I should continue with it. But in the last couple of days, I have reminded myself that I started this blog for me and not for anyone else – on that basis, it doesn’t really matter what anyone else thinks. Now, any of you who know me well, will know that last statement is a bit of a joke really as it always matters to me what other people think. But, what has happened this week is that I had a really lovely email from someone who got in touch with me 2 years ago and who follows my blog. They thanked me for the support it gave them and the help it provided while they went through their SCT – and it made me cry that I had managed to help even one person through writing it. To me, that is what makes it worthwhile.

So, I will continue to update it, although quite possibly it is going to get limited to the holiday period when I have a little bit time now that I’m working! Working… good does that feel 🙂 I am so pleased to be back using my little brain and earning some money towards holidays etc! I have just had my first full pay check and god, did it put a smile on my face. It won’t change the world, but being back at work, makes me feel like I know what I am about again and that is a great feeling. The job is hard work…..but totally worthwhile as I am 100% committed to the organisation. I just need to work out my work-life balance, and stay well at the same time, and it will be absolutely perfect! As Nick says, we are still in the early days, so it is no wonder I am exhausted at the end of the week. And perhaps I will never be quite 100% as fit as I was before I had the transplant….but I’m definitely at 95% and that feels great. But to all of my friends, here is an upfront apology if I am a tad rubbish at staying in touch – it isn’t anything personal, just me getting used to work and drugs at the same time 🙂

I’m also not sure whether I should mention this next thing….someone in the charity sector recently said that they thought it was brash to brag about achievements in fundraising etc.Image However, I am going to mention it….not purely because of my involvement but because so many of you, my friends and my family helped me to achieve it. Recently the chair of Myeloma UK asked me to meet her for lunch and she presented me with a beautiful engraved photoframe celebrating the £70,000 that we have raised over the past 3 years. And it really isn’t just me….so many people have helped me to raise that money and to spread the work about Myeloma UK and the work that they do. So whilst it is nice to be personally recognised, it really has been a massive team effort. And an especially big thank you should go to Nick, my Glitz and Glamour team (and their partners who put up with them helping me) and also my lovely 80 year old parents who have raised thousands of that total by doing fundraising with their church – it just goes to show that you are never too old (sorry mum and dad, I know you don’t think you’re old at all!)

So, what other news is there….not much really. Healthwise things are fairly stable. I seem to have a permanently low white blood count these days and I believe that this is to do with the 10mg revlimid that I take as maintenance therapy. However, the hospital is now working on a preventative basis and I receive G-CSF injections each week to try to boost my immunity and stop me from becoming chronically neutropenic. This seems to be working fairly well and stops me from being ill, although the slight downside is that it does cause me to feel fluey and achey the day after I inject. Still, it is far better to be well most of the time and at least this way, I know what is coming and can plan not to be socialising etc. I am not sure if it means that I am coming to the end of my time on revlimid….I really do hope not as it feels like my lifeline. I am sure I am wrong there and that my remission would have existed no matter what, but once you are on something like this, it is hard to think that it isn’t your miracle cure!

Finally, and because I am totally mean and want everyone else to cry like I did, I want to share a link to a podcast that I found inspirational and that really sums up how I feel about much of my life now that I have to share it with myeloma. This guy was given a terminal diagnosis so was in a worse place than me, but much of what he says rings very true…the patient guilt of having cancer etc. However, before you shut off, he is a very funny guy and the interview is uplifting and honest. Take a look at Steve Evans on the 16th May – it is available for another 19 days – I wish I could save it some way! He is pretty remarkable.



About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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7 Responses to So busy, don’t have time to wipe my…….

  1. Jet Black says:

    Great to hear how you’re doing, Deb. So glad you’re loving your job and well done on your MUK award. You deserve it!

    As for saving the podcast, it’s only accessible online for 30 days, but if you download it, then you can keep it as long as you like. 🙂 I’ve not had time to listen to it yet, but thanks for the recommendation.


  2. Hi third attempt at posting this !!! Anyway, Deb please keep up the blog, your experiences during your long fight provide ( ignoring the moans !) give invaluable insight to those of us starting treatment. Personally, starting treatment after such a long while smouldering is like receiving the original diagnosis again, but at least I have some realistic expectation of what to expect. Regarding the fund raising keep shouting your achievement, even if we all haven’t got your drive, it has inspired me to try to raise funds for the charity. Jeff


    • Deb Gascoyne says:

      Aw thanks Jeff….it is great to hear that it helps other people as well as myself. You know where I am though if you ever need anything…you’ve been a great support to me too! x


  3. Now you’ve got us all wondering, Debs, “is my blog self-centred and theatrical?” I worry too about the purpose of blogging, It’s been “easy” for me as I’ve had my SCT to talk about. But what next? I’m trying to remember that I started my blog to communicate about myeloma, not just to talk about myself. Some blogs seem to wander off into “what I did today” territory. But if blogging is a shortcut to keeping friends informed, and to giving other people a little insight into liviing with MM, then it serves a purpose.


    • Deb Gascoyne says:

      Meant to reply to you ages ago Alex to say that absolutely not….there has just been one blog that has made me think. I agree that the important thing is that we all know WHY we decided to write our blogs, and that we are honest about that. If someone wants to be theatrical and to ‘entertain’ with it, so long as they’re honest about that I think it’s probably ok isn’t it. For me, my purpose was that it was a record for me and my family. And because during my transplant, and even since, it has helped keep people up to date without them feeling they have to constantly ask me…at the end of the day, I’m trying to move on so it is nice not to have to talk about it ALL the time when I see folks. Keep blogging Alex…you do a grand job.


      • Aw shucks Debs, but you did have me worried, until I saw your comment today and knew that you were not boycotting me. I have quite enjoyed the variety of people I’ve found through myeloma blogs. Some are so sane. Others quite batty (no, not you.) I agree we all need only be true to our own aims. And we don’t have to read stuff that bugs us. Like you, not to have to talk about it all the time is one of my reasons.


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