Thursday, 22 October 2015

Breast cancer awareness month: Jo's Story - Jo Knell (Jojo Gingerhead)

Author: Sam Knell (Jo's mum)

Jo's Story - Jo Knell (Jojo Gingerhead)

16.04.1983 – 15.05.2015

This is a hard one to write but I'm positive that Jo would have wanted to share her story with others who didn't get to know or meet her in life, so therefore I'm doing my best even though I find it heart breaking to do so. Jo (Jojo Gingerhead) was amazing – she was an incredible daughter, a trustworthy and loyal friend, an innovative and talented artist and musician and a joy to know. Her humour was black and alternative, her art projects were thought provoking and unusual and her “give everything you've got” attitude to life was inspiring. Some of her projects like Foundism which was based on things she and friends had found in everyday life and subsequently coated in plaster of paris and exhibited were very entertaining. Her photographic collection of fruit teas and vegetables in different states of decay were a bit of an ordeal for her work colleagues but colourful and different. Her Christmas Chemobrow 2014 blog with the Younger Breast CancerNetwork (YBCN) girls went viral and she was so excited at the attention it received as it highlighted women with breast cancer being silly and just having some fun for a change.  She saw beauty in things that most people would pass by and she had a way of getting people to look at life differently.

She never let people down – if she said she was going to do something she would do it – she was everything you could want in a daughter and a friend and I know that she was well loved by so many and immeasurably missed by all. My life is bleak without her and I know all of her many friends feel the same way and we will probably never get to meet someone like Jo again. She was a force of nature which makes the loss so very hard to bear.

Her blog The Malignant Ginger was funny and courageous and inspired so many people in the same situation but also raised awareness about the realities of having breast cancer to those with no experience of it.  The world is a less colourful and interesting place without her and the thought that I will never get to see her art projects or hear her music, hear her giggle or listen to her opinions on what's going on in the world is hard for me to live with. If I could have exchanged places with Jo so that she was here now instead of me I would have done so in a heartbeat.

It never occurred to me when I was diagnosed with breast cancer in November 2011 that my daughter may be at risk for there was no history of this in my family as far as I knew. I was diagnosed with a Grade 3 invasive ductal carcinoma after I noticed my nipple inverting. Five months previously I had a serious fall in my garden and fell heavily on this breast fracturing two ribs and as I knew that cancer can be triggered by trauma assumed that this is what had happened. I had a lumpectomy and radiotherapy but no other treatment. I tried to make as little fuss as possible as I didn’t want to cause my children any worries, especially as they had lost their dad to cancer in 2000. At no stage did I think that Jo would be affected by this so when she rang me in May 2014 to tell me she had been diagnosed with breast cancer I was devastated, shocked and far more concerned than I ever was when I was diagnosed. I had always had worries of Jo inheriting fibromyalgia from me as it is a condition that can run in families particularly from mother to daughter.

Jo was diagnosed first with a localized Grade 3 Oestrogen and HER2 positive breast cancer. She started chemotherapy immediately and then had a lumpectomy in November 2014. She then had radiotherapy and was prescribed Tamoxifen. All her scans up to that point were clear so we were reassured that the outcome would be positive. Through her chemo treatment she was upbeat and carried on with her life, being more concerned with how her friends and family were coping with it all. She didn't invite pity or let her friends treat her any different but just dealt with everything that was thrown at her which was inspirational.

She came home to me for Christmas 2014 but whilst there she discovered another lump in the same breast. When she saw her consultant it was thought that there were no worries as it was presumed that the lump was probably scar tissue. However on further investigation it was discovered that it was indeed cancer but not the same as the original diagnosis - it was now triple negative. Subsequent scans showed spread to her liver and we were advised that this was an extremely aggressive form of breast cancer with limited options for treatment. In January 2015 she was given a prognosis of a possible life span of 6 months - she died in May aged just 32.

All through her treatment Jo was amazing, very positive and proactive in researching her condition. She blogged continuously with dark humour and was actively involved with the YBCN online. She found support and gave support to others all through her treatment and raised funds for breast cancer research through her Scull-pulp-ture website. She and Rosie’s stories were very similar - with a similar diagnosis and treatment throughout and I know that Jo was so concerned for Rosie - she cared very much for her and her other close friends on the YBCN website. She was devastated that Rosie had children who would be losing their mother and constantly thought of others who were going through the same ordeal.

Before she was diagnosed with breast cancer Jo was always interested in undertaking a PhD, she wasn't sure what her subject would be but she was adamant that it would happen at some stage. She loved her job and her work colleagues at Brighton Uni and I know for sure that if she was still here that would be the next step in her education. After being diagnosed with breast cancer she was planning that her prospective PhD would be cancer related in some form of which she was unsure – however she didn't get the chance to see this through.

Poignantly her final piece for her MA which she completed with a Distinction in November 2013 was a thought provoking project about what happens to peoples social media sites and information after they die called Final Status. It was an incredible and moving installation where she had recorded friends and families thoughts and projected them into monitors built into a shrine which she constructed herself. When visitors entered the darkened room, motion sensors triggered rotating motors, sound and vision. So much work and thought had gone into the production of her exhibit - it was breathtaking and the following was her summary of her work:

"Final Status was an interactive digital art installation that I created in the summer of 2013. There are now over 30 million Facebook profiles of the deceased (Huffington Post, 2012). Some of these profiles are made into memorial pages, some are deactivated by family who have access to the deceased login details, but many remain untouched and still active to friends and the public (depending on privacy settings).

I created Final Status to highlight the existence of such profiles, the concept that although a person is no longer with us, everything they have ever shared on social networks still exists on the internet up until that very last thing they posted. Their last final status no matter how trivial, positive or negative it may have been, becomes a poignant statement existing indefinitely in a public space for many to see.

If you had a choice, what would you want your final status to be?”

Unfortunately Jo became too unwell by May to write her final status post but I know that it would have been defiant, bolshie, unique and as always giving thought to all her friends first rather than herself. She was beyond amazing and the world has lost a unique, entertaining and incredible human being – I will miss her every second of every day for the rest of my life.

Her mantra was: Concentrate on the present, don't dwell on the past, don't worry about the future, live for the now, live for the now.

I'm desperately trying to do this but not succeeding very well – she was a better woman than I will ever be!


  1. I cried and laughed when reading this post, as a ybcn member I remember clearly JoJo sending posts from the hospice pictures of her dinner, thoughts on politics and encouragement to others. She was truly a one of a kind, a unique person, someone you are drawn too like a shining light I think of her often xxx

  2. you have written a truly beautiful tribute to your lovely daughter. xxxxxxxxxxxxxxxxxx