I’m so lucky that I have now been in remission for 3.5 years, a timescale that I never imagined when I was first diagnosed, and certainly didn’t expect even after my Stem Cell Transplant (SCT) that I had in 2011. It is 5.5 years since I was diagnosed.
I honestly believe that part of why I have done so well since my transplant is because of maintenance therapy. I have been on a drug called revlimid since October 2011 as part of the Myeloma XI trial that I am on. Revlimid isn’t available to a lot of patients like this as you have to be on a trial to get it…it costs £000’s a month! Luckily I got randomised to it due to the trial, and the drugs company pays for me to have it until the day I relapse. Long may that be!
Revlimid is a type of chemo that is in tablet form. I take one little tablet every day for two weeks and then have two weeks off. When I had it for 3 weeks, it used to lower my neutrophils, which meant that my immune system was very poor and I was regularly ill. So over the past couple of years especially, my health has been fairly predictable and fairly constant. I am not ill so regularly as I used to be, and whilst I tend to take longer to recover when I am ill, I have generally been pretty healthy!
Unfortunately, just before Christmas, this all seemed to change. I was finding that I was getting cramping and needing the toilet more than before. (I told you not to read this if you were squeamish!). As the weeks went on, it seemed to get worse, and it was really affecting my life. I particularly remember the time on the train after a nice day out in London, where poor Nick and the kids had to sit on a platform halfway home, while I located the nearest toilet for over half an hour!
Eventually I realised that perhaps I needed to make it clear to the Marsden exactly what was going on…and needed to bury my embarrassment. It was far worse having to deal with these unexpected and frankly mortifying experiences….and there was a chance that it could happen at an even worse time! So I told my consultant, and they referred me for something called a SeHCat scan that monitors bowel movements. They were so good at taking it seriously, partially because they know that revlimid can cause an issue called ‘Bile Malabsorption’ where your bile isn’t reabsorbed properly, and partially because of my mum having had bowel cancer 4 years ago.
As is always the case, it seemed to get better after I’d been for the scan and so I decided I was going to get told that I was fine. In the meantime a good friend of mine who is at a similar stage post transplant, and also on revlimid, told me that they had suffered similarly and that there was medications I could go on. Anyway the long and short of it, is that I have now been diagnosed with Bile Malabsorption. Apparently people who have this, are often mistaken for having IBS and it is much more common than you know!
I’m pleased to report that since I started on the treatment (lots of huge pills!), I seem to be significantly better and the tablets are definitely doing what they’re supposed to be doing. Which is a good sign that it is nothing more sinister.
I know it’s an odd post to publicise and I did think twice about it….. it’s an embarrassing topic really. But I know that I just needed that push to get it looked at and now it has changed my life. I don’t have to worry about the nearest toilet anymore, and I know that it is controllable. The day may come where I have to cut fat out of my diet (might not be a bad thing!), but for now, that wouldn’t be enough to stop me needing the tablets and so I can just rely on them. So I thought that it might help someone else who is reading this blog with myeloma…..or for that matter, anyone else who is reading it who has general cramping and bowel issues.
40 Challenges B440 update!
Just a couple of sentences to say that I only need to complete 2 more challenges now! One will be my party on the 24th, and I’m also hoping to complete the; book challenge, necklace challenge and the birthday card challenge!
If any businesses out there were wanting to sponsor that challenge, please don’t feel that you can’t know that I’ve reached 40….I would love to keep adding to that total. And if you just want to make a little donation to help, the details are below!
If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either
text ‘DEBG99 £X’ to 70070
e.g ‘DEBG99 £10′ if you want to donate £10