A Belated ‘Happy New Year’

Well after my last post, I’m pleased to say that nothing changed for me and that New year, whilst pretty uninspiring, was not a miserable occasion or a time where I felt like I had nothing to look forward to….result! Instead I just begrudged my wonderful husband the fact that he decided that watching Match of the Day was a sensible option!!!! Oh, how he will never think the same way again…lol! Really it’s a bit mean of me as he was, as usual, a true star over Christmas. Letting him watch MotD for half an hour without a sour face, could have been a lovely way of me saying thank you…..nah…..

Anyway, I know for a lot of my MM friends, this year is looking like quite a tough one. At least 3 of my friends will be going through a transplant…at least one of those having their second. And whether it is first or second, it makes it pretty damned hard for them. It seems like yesterday that we were in that position, and no matter how much people tell you it will all be fine, it is one scary prospect. So if you’re reading this, and you’re one of those people, Nick and I are thinking of you lots and I especially, will be here to support you if you need it.

It all seems quite minor in comparison, but I am finally on the home stretch and seem to be shaking off the illness that I have had since just before Christmas. It has been hard being ill so much, especially for the kids, but they and Nick, have been great with it all. I think I will be asking the hospital whether or not the Revlimid that I am on, gives a huge increase to lifespan. I am not sure how worthwhile it is being on it if it makes me ill so often! Well, it isn’t the drug itself that make me ill, but the fact that it causes my neutrophils to drop and this in turn makes me very prone to infection. And while Joe Bloggs might just get a cold that he can shake in a few days, it seems to put me in bed, and last for weeks!!! It may be that they can just look at reducing my dose of the drug and that this would help things….I’ll have to see on the 17th.

The only other news that I really have is that things are moving forwards now with the ball. It is confirmed for the 10th November at the Crowne Plaza in Marlow and once we have found someone to do us a website (to help us with advertising and the auction bidding) we will be sending out all the details. In the meantime, if you are interested in coming, Save the Date and/or email me to let me know if I don’t already have your contact details. We can have up to 280 guests and it would be great (even if unexpected!) to get that many. I have to say I’ve been really chuffed at the response so far. People I would never have imagined have said that they’ll get tables together and I feel like we’re well on our way to getting the minimum of 150 people! So my next post will probably give details of the help that we might need (I’m not shy of hassling people and begging!!!) but in the meantime, if you know anyone that might donate good raffle or auction prizes, please let me know. We’re up for giving advertising in return if they want it!!

Right off to my bed now….need to get my wits about me with all that is going on.


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 out....it 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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1 Response to A Belated ‘Happy New Year’

  1. Hi Debs!

    So glad to hear you’re over that nasty infection. I want to respond about Revlimid. My consultant was pleased when I was randomised to get it post-transplant, even though I had my doubts about taking it for different reasons than yours. She said that it is at this stage that Revlimid has been shown in previous trials to noticeably extend remission times, so advised me to give it a go.

    The trial protocol is for 25mg per day but the previous trial had shown efficacy at a lower dose, so she was very happy to find any reason to reduce the dose. She managed to use my damaged kidneys as a reason to reduce the dose to 10mg per day. Maybe that’s why my blood levels have stayed fairly close to normal…? As we all know by now, everyone responds differently. However, she did say that I should let her know of any side effects or nasty symptoms and she could lower the dose to 15mg every other day or even down to 5mg per day. It sounds like this might be a useful conversation to have with your consultant. Good luck!


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