A TRIBUTE TO A BEAUTIFUL GIRL

March 14, 2019.Reading time 4 minutes.

Dear world. It’s Morgan’s mum and dad here. If you have been following her on Instagram http://www.instagram.com/dontmswithmorgs/ you will be aware that despite her selfless courage over these past few years fighting multiple sclerosis and CTLA4 deficiency, she succumbed to melanoma cancer in October 2018. She was just

When nothing goes to plan

June 9, 2018.Reading time 14 minutes.

So where was I the last time I blogged? Had just had a modified radical neck dissection and was waiting on pathology results Was planning for an allogeneic haematopoietic stem cell transplant And what was the outcome of these? Modified radical neck dissection: unsuccessful Allogeneic haematopoietic stem cell transplant: didn’t happen Sigh. After I woke […]

Living with MS (video)

May 30, 2018.Reading time less than 1 minute.

This is a speech I gave at a fundraising dinner in May 2018 on life with MS.

Me in a snapshot

April 24, 2018.Reading time 13 minutes.

I am frequently asked how so much has happened to one person, and when it all happened! I thought it might be easier to give a quick snapshot with a timeline. I have hyperlinked where there is a corresponding blog entry, if you are so inclined. 0-16 1993-2009: HAPPY AS LARRY. Besides childhood asthma, honestly […]

Metastatic Melanoma / Stem Cell Transplant

February 25, 2018.Reading time 13 minutes.

Melanoma You know how I said 2018 would be my year? Ha ha ha. If you’re reading this you probably already know that the melanoma I was diagnosed with on my left ear last year has metastasized (fancy word for when the cancer spreads beyond the original site). A couple of days into January I […]

Genetic testing results – the best possible ending to my year!

December 19, 2017.Reading time 11 minutes.

There aren’t enough superlatives to describe how happy I am that this year is nearly over. It started in March with an excruciating flare of my lymphocytic enterocolitis, and rolled into April with laser surgery on my dysplasia. A couple of days later I ended up in the ICU with hypokalaemic paralysis (which led to […]

Gilenya (fingolimod)

October 16, 2017.Reading time 13 minutes.

A disclaimer – I realise that this series of posts on medication are quite negative. In no way, shape or form am I advocating to pursue life post-diagnosis without treatment unless that is advised by a neurologist. Since beginning this series on MS DMDs, I have been diagnosed with Common Variable Immune Deficiency which we […]

Surprise! It’s a melanoma.

October 1, 2017.Reading time 19 minutes.

Warning: there is graphic content in this post. Continue at your own p-ear-il and if you’re easily queasy maybe st-ear cl-ear 😂 There’s not much of a bigger vibe killer than being told you have cancer. The doctor at the skin cancer clinic delivered me the news over the phone on a Wednesday afternoon whilst I […]

~ Neutrophilicious ~

September 8, 2017.Reading time 21 minutes.

Well, well, well. I did say I wouldn’t update this blog again until I had neutrophils, and now I have NEUTROPHILS!!! As I’m sure you’re already well aware if you’re reading this, because I have shouted it emphatically at anyone and everyone within physical and digital hearing range. Not only have I had neutrophils for […]

Hiccups, perspective & resilience

August 2, 2017.Reading time 24 minutes.

Hi everyone 🙋, I’m going to preface this blog post by letting you know I never planned on writing it. I have told myself repeatedly over the past weeks that it would not be good for my mental health to blog about what is happening to my body. But I wanted to update you all […]