Where and when it all started

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.

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18 thoughts on “Where and when it all started

  1. Dear Deb, As a dear friend of your wonderful sister Kate who i speak to and see regually , what a great idea and hopefully a help the blog is to you. Good luck with it all . Vicki xx

  2. Fantastic blog! Loved reading all about you and your lovely family. I met Kate in July last year.I look forward to your updates! You do realise I’ll spend the next day singing 2000 don’t you! Well, sending all my love and good vibes your way.

  3. Deborah… from what I’ve read on this blog I get the sense that you may well share my understand that we are all individual spiritual beings having an earthly experience. Yours is a rough road, but a road I feel you will navigate with grace and inner strength. Your blog tells me you have been a gifted teacher/giver all your life. It also tells me you are prepared to share your journey with others… … Deborah, this is a great gift you give us all, and we are truly thankful. A big hug… Ian James

  4. into battle Deborah, I’ve survived chemo at 68, you can do this too now I know. And as you have helped me with your thoughts, so I’m sending you lots and lots of mine too, with extra hugs. I am forever grateful to my body for coping with it all, at the same time feeling angry and “let down” by it for having to put “us” through all this. I guess ultimately I apologised to myself for feeling this way, and grateful to modern medicine in suppling the technology and know-how for what is, basically, nothing to fear, and what will be a life-saver. I kept a sort of record of how I felt after each treatment, and found that helpful but in the long run even knowing how I was going to feel did not offer much solace, or enhanced coping skills! But you will get through this, as Ian says, with grace and strength, and you have lots of thoughts and love now and always from your cousin Nicola

  5. Thanks for the very clear background/history – it helps to understand where you’re at. No wonder it’s taken so long to get started… You sure can write, girl! I bet you’re talkative too?! Keep going, it’s a great beginning. x

  6. hi deborah
    We are all thinking of you at Hitchin. Keep up the fantastic blog you always had such gifted insight and presence when you worked with us.love Chris

    • Have followed your path through life from your mother, my dear friend of 38 years. So Deborah, from the sweet girl I remember to strong, courageous woman. Yours is the first blog I ever followed…..and it is awesome.

  7. Don’t feel alone Debs – when you start to think that, remember the other night and how there is that timeless connection with close friends and family, a sort of fourth dimension that inextricably links people on some mental/emotional level. On that level we’ll be sharing this pathway. xx

  8. Hi Deborah or Pollyannas mum as you’ve always been to me. I just heard your news and have been reading your blog. You have always been an amazing, caring and free spirited woman and I know that whatever happens you will kick butt and live in the wonderful manner you always have done. Loving the people around you and enjoying life. You always made a big impact on me and I just wanted to let you know you will be in my thoughts and prayers always. You are so strong, i will be following your blog and hope if you need anything you don’t hesitate to call on all the people who care about you. Louise xxx[Geeky one with glasses from our youth]

  9. Hi Deborah
    Just found your blog and heard your news. We will all be thinking of you at Angels and know that you are so strong, you will take this journey teaching us all something along the way as always. We all owe so much to you and your innovative, caring expertise. The idea for a book sounds great. Would be very valuable, especially for parents who struggle with anxiety or who are isolated themselves. I will keep following the blog to see how the book writing goes! Let us know if we can do anything to help.
    Leise

    • Hi Leise
      Good to hear from you Thank you for your support. I have good days and days I struggle a bit but on the whole I am getting through this.
      Yes please keep and eye out for my book writing I may send you a draft for your opinion if I ever get round to finishing it if thats OK
      Best Wishes to you all
      Deborah x

  10. Hi Debra, not sure if you remember me, fellow artist also from Sheffield, previously family support worker for Baldock. Great to see your creativity, candidness and humour moving into a blog, I had just spotted you in the Comet and thought, I know that name! Did some google special moves and found you here, if anyone can fight this bloody illness – it would be you and many I am sure will be inspired by the colour of your journey. Much love xxx Colleen Allen

    • Hi Coleen
      How lovely to hear from you. What are you doing now? Do pop in sometime if you are not working full time as I am in most days now.
      Best wishes
      Deborah

      • Hello again, I took 18 months off as my daughter was hopitalised and really ill with complex mental health issues, ironic hmm, I was official carer and put everything into doing my art commissions and performance poetry, I have literally just got offered another family support role in Bedfordshire for Action For Children via an agency, so its short term (3 months) and have also literally just applied to be an Open Arts worker for SEPT which I would LOVE- fingers crossed for an interview. I am very nervous for a restart but my daughter is ready to boot me out of the house 🙂 I didn’t know you had been so poorly, probably because I had been out of the sector, you are a bloody amazing woman and I have always admired your work so much, I did a little follow on to your Bright Stars initiative and loved your brain box.. crikey I sound like a groupie! To remind you, we talked about Jarvis Cocker and how my brother and he were good friends as The Stunt Kites and Pulp were on the same circuit..blah blah, where are you (I have added you on face book) I would love to come and see you and your art, lets talk art 🙂 I would also love to see your book when its done. You will have time to indulge in making beautiful art and getting that exhibition on your wish list now during times you feel well, if I can help I would love to.My kids dad is quite key at the Tate Modern & Britain 😉 haha.. much love and good, good, positive wellbeing thoughts to you xxxxxxxxx

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