Let’s start at the very beginning ……..
During a routine blood test in 2009 some para proteins were detected and I found myself sitting at the Forster suite at the Lister Hospital, Stevenage.
Somewhat bewildered by the posters on the walls offering cancer related support and guidance, I felt annoyed at having to wait around for something that I thought must be quite unnecessary! I had patients of my own to see and certainly no time for this.
A couple of hours later I left the building with a diagnosis of MGUS, a blood test form and an appointment booked for a year’s time. Lot’s of people have MGUS, it just so happened they noticed my protein levels which were only a at the time a miserly 4 g/L – no big deal!
Back again in 2010 this time they were 8 g/l. and it was decided to do a skeletal survey, again no big deal all was fine. No symptoms, no worries.
A year later (Oct 2011) back again. Being in the process of a house move this time I went on my own and was disappointed to hear my para proteins had risen again to 16 g/L. Now I was started to get a bit concerned why did these buggers keep doubling? The consultant suggested a bone biopsy the following week and called in a MACMILLAN nurse as I had gone into a bit of a meltdown! Well that just about did it, in my mind I was dead and buried.
I was told or what I heard, (which could be two different things) was that I was now part of a special club. What ******* club? There was no way I was joining this one.
The bone biopsy the following week was a little painful but nothing compared with the fact that I was convinced I was going to die. Death didn’t exist in my world, I was immune to it, I am a solution focused therapist for goodness sake.
The results showed 8% of plasma cells in my bone marrow, not too bad I think, but still the signs were not looking so good. Hospital visits were upped to 3 monthly. Kind doctors hugged me and crossed their fingers when questioned about my chances.
Well there has to be some advantages of working in the NHS and I had been smart enough to have chosen very wisely when recruiting for my own team of mental health specialists. As luck would have it (and for this I am eternally grateful) one of our psychologists was the partner of a leading professor in Amyloidosis, a field closely associated with Myeloma So I was able to share my concerns and listen to the kind words from this lovely highly respected clinician , who fortunately remains at the end of a call or email. He kindly recommended the skills and experience of the staff at the University College London and I am just so thankful for this.
Then somewhere between August and December 2012 I got an upgrade. Funny I have spent years trying to be upgraded, but this is one I really didn’t want to get. Trying some reframing techniques I attempted to imagine smouldering myeloma as something rather sexy and appealing. Smouldering can last for years and years is what I needed. For in my usual Pollyannarish way I have faith and hope that a cure for this nasty disease is just around the corner.
Then BANG, suddenly (to me anyway) the para proteins have started to multiply at far too fast a rate and no sooner had I started smouldering that I got another upgrade. With HB levels having dropped to 8.9 and para proteins rising to nearly 50 I was given the news I really didn’t want to hear.
On January 7th 2013 (3 days before my 50th Birthday) I received my new diagnosis of Multiple Myeloma. Now there was nowhere to hide, this was, is, the big C word My life as I knew it has been turned upside down!
From clinician to patient in one not so easy phone call.