Patient Experience Talk

I was asked by Myeloma UK to give a talk from a patient perspective at the Manchester Myeloma UK info day for patients and their families on September 22nd. I agreed as it would mean a free place and thought it would be easy enough however as time went on and the day got nearer I started feeling a little nervous and as power point was mentioned ( a way of presenting slides) I learnt how to use it and spent ages selecting slides to try and illustrate my feelings. I was really pleased with the slides, now I just had to deliver my talk. Why the nerves? It wasnt as if I had to impress anyone as we were all in the same boat. On the day I and another patient were the last item so there was plenty of time for the nerves to build! When it came to my turn I could hear my voice trembling and shaky as I started and my brain felt ok but it couldnt tell my mouth to relax and it got dryer and dryer but I got through it and people told me I didnt come across as nervous. Afterwards my consultant came up to me and gave me a big hug and told me how brilliant I was. Wow did that make it worthwhile! Preparing the talk made me realise just how far I have come on this journey since diagnosis nearly 2 years ago now and how hard it has been at times. As I said in my last post, One Year On, I find it difficult to accept that I have myeloma at the moment and that it will come back at some point. Someone asked my consultant at the conference whether she thought a cure would be found in the next 10 years and she said that she didnt think so. I really hope she is wrong.

Hopefully the link below will take you to the slides and the notes I used in the talk.

Patient experience talk on word with notes


Back to Dominating the Cancer Center

Today I have my check up after my five week vacation from the cancer center. I received a very warm welcome by both my phlebotomist and the receptionist. Both recognized that I have not been around for a while. I am hoping that 5 weeks will turn to three months very soon.

The point of this check up is to take a look at how I am doing now that I am in maintenance mode chemo and where my M-spike and other counts are at. We want an M-spike of 0.0! The last 6 tests have come back 0.2, 0.2, 0.2, 0.2, 0.2, 0.1 respectively. Not bad given I started at 3.0 and the target is a big fat ZERO!

On a side note, a heat wave is hitting Michigan! We hit 40 degrees yesterday…watch out. The climate change is starting to motivate me to take my health back by dominating running again. It’s been a challenge to find the time and motivation to exercise with kid #3 added to the mix.

By the way, I will be speaking in Frankenmuth (MI) this Saturday for those in the area! Feb 19th, 7:30-9:00AM, Zehnder’s of Frankenmuth – South entrance. Topic: Dominating Cancer through Faith, Cost $6.00 plus tip (breakfast). PLEASE RSVP to as seating is limited.