No news is good news

So it’s been a while since I last wrote and I have to say that, in general, that has been because life is carrying on in a fairly good way.

It seems that my myeloma is pretty stable at the moment. My paraprotein levels have steadied at around 7.6 and my antibodies have gone up a little since my second vaccine. We obviously don’t know what that means or whether it will protect me in reality, but it is definitely the best we could hope for. And the fact that my PP levels are stable is brilliant news.

I have felt a little flat in the last couple of months though. It suddenly dawned on me (ok, yes, I’m a bit slow!), that I am now on treatment permanently unless they find a cure for a myeloma. I currently have an immunotherapy drug (a sort of chemo!) called Daratumumab, every month, and that will continue until I relapse. And of course, if I relapse, I’ll have to go onto another treatment. It was a bit of a strange realisation as I hadn’t thought about it like that before. Last time, when I was on revlimid as my maintenance therapy, it was tablets and so it didn’t really impact me as I didn’t get any side effects from them. This time though, I have a week where I don’t feel normal/ great after my treatment, so it really does impact my life and the life of the family. And I hate admitting that I can’t do so much.

I’m not complaining I promise. It is helping to keep me well and alive so it has to be a good thing, but it’s hard for someone who wants to be active, normal and who actually wants to go back to work once I’ve completed the London to Paris in September.

So talking about my London to Paris cycle in September, all is going pretty well with my training. And I’m keeping my fingers crossed that nothing is postponed due to Covid. Since I started cycling in February, I have now completed 1397 miles! That’s not bad going in 5 months and given I hadn’t really been on a bike since I was about 16! I’ve reached my best ride of 75 miles so I’m really pleased although I’m still struggling to do more than one long ride in a row. For the actual ride, I will have to do nearly 300 miles over 4 consecutive days so I’ve still got a fair amount of training to do.

I’m actually loving the cycling, and find that it’s really good for my mental health so hopefully I can keep it going long after I’ve reached Paris. I love to keep pushing myself, although did learn a valuable lesson after the 75 miler…which I did the day after chemo! Stupid, stupid girl. By the day after, I was in bits and laid up in bed with a headache and feeling sick. It took 3/4 days to feel normal again. Lesson learnt – don’t do long cycle rides the day after chemo 😳. (Well lesson learnt until next time 😂).

But honestly, I am really getting on with cycling. I’m doing a variety of long rides, hilly rides, faster rides and slow rides. All of which are only doable thanks to my e-bike….which in itself is only with me thanks to the generosity of friends. I strongly recommend anyone who has put off cycling because of hills, to consider e-bikes. They just give that little hand when the going gets tough, but you’re still working hard when cycling. Anyway, I’ll keep on going and hopefully by September will be ready to do the 300 miles. If anyone reading this fancies sponsoring me, my Justgiving page is here. I’m hoping to raise £5,000 towards my #50KB450 but still have some way to go to get there! In the same way, if anyone would like to do the ride with us (there’ll be a big group of Myeloma UK supporters – family/friends/patients/carers/doctors/nurses), I think you can still sign up (and then join my #50KB450 team). Just let me know if you fancy it 🙂 You could also do a UK version/ indoor version within your own timescales.

Anyway, if I’m not writing much at the moment, that’s partially why. #LondontoParis, social media work, renovation work in the house, cooking (when I find the time!), dogwalking, and treatment! Makes for a fairly busy life at the moment….which most of the time, I’m very grateful to have!

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 was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
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