Changing the conversation about work and cancer

Jo Taylor

I had worked for 18 years in the electronics industry and promoted as Marketing Executive.  I was made redundant and worked for a local estate agent.  We decided to have children and whilst on maternity leave when our daughter was 5 months and our son was nearly 2.5, I found a lump and was diagnosed with primary breast cancer.  I was at the time in the middle of a tribunal due to my employer and ended up leaving my role.  With our children being so young I decided to be an “at home mum” so I could recover and focus on them.  The prognosis at the time was cure.  7 years later as I was planning on returning to some form of work, I found a lump in my left neck and nodes were subsequently biopsied and diagnosed with metastatic breast cancer.  Additionally, I had two small “oligomets” in my sternum.  I’ve been living with incurable MBC for the last 7 years and had around 12 surgeries in the last 14 years.  For MBC I had neck surgery to remove the neck nodes and 2 years later had most of my sternum removed and replaced.  Under lockdown I was diagnosed with brain mets and had SRS plus additional surgery to my left axilla due to further lymph node involvement.

I’m a wife and mum of two teenagers now, so life is busy supporting them.  I love to exercise and go out every day for at least an hour Nordic walking and also do HIIT and yoga.  Walking and being out in the local countryside has been great for my own physical and mental health whilst dealing with the problems with MBC.  I am a social person and love to meet friends (prior to COVID) and enjoy family life.

I am a busy person running 2 websites and dealing with MBC.  Abcdiagnosis is a one stop shop all about primary and metastatic, additionally METUPUK is patient advocacy group to try to make MBC a chronic disease instead of a terminal illness.  I work every day and also get involved in PPI & User Involvement as well as exercise.  I’ve created motivational exercise retreats for other patients to attend.  I am part of steering groups, boards and committees, write blogs and share my story by speaking at events, attend conferences.  I developed an infographic about MBC with “red flag symptom” what to look for and NHS England signpost to them. Many other organization within the UK do as well.  I want to try to create change for breast cancer patients.

I haven’t had a normal paid role for the last 14 years so starting something new that I could grow and possibly become a business has been a huge challenge living with MBC.  It has been hard working being unpaid and then to be taken seriously and be treated as an expert in my own disease.  It’s taken time and effort and that is not what you have with MBC.  I feel the value of the work is huge.  It’s challenging to work as well as have ongoing treatments, but I deal with it by keeping busy.  Fatigue and illness still affect me and I certainly don’t think that it would be easy applying for a job if you have to have time off for regular treatment and issues with your health.  That’s why I have concentrated on this work that fits around me.  I am passionate about the work I do because I want to make change for others, am a great networker and feel sharing my story helps to raise awareness of the disease as well as working to improve things for others.  You have to be resilient with a progressive disease like MBC.

I work on my own but have 3 other Directors as abcd is a CIC.  I am self motivated and the work I do is with others in a similar situation or with people who are involved with cancer so they understand my advocacy and support what I do.  Again, the hinderance is that I am not in a traditional role and have created something that is needed but don’t get paid.  This has meant we as a family cannot do all the things I would want to do but have also had to invest “rainy day” money in areas that could help me gain access to some funds in the chance that I could access other treatments or drugs that are not standard on the NHS.

Know your limits, understand you may not be able to do what you used to do but that is ok and that you still have a worthwhile role and a value.  You are contributing to society with the work you do so if you feel you can do it then continue.  Personally, I feel that it gives me another focus and drive, keeps my brain active and in a strange way I don’t focus too much on me and my own situation.

People with MBC can still contribute so society, we are not immediately at End of Life.  Sadly, statistics say only approx 20-25% of patients are still alive at 5 years and this needs to change.  We want to live and still contribute and clinical trials and research should quicken up to help us to do that.  Some of the newer drugs are helping patients live longer with better Quality of Life living without hair loss and blending into society.  This is a good and bad thing. Good for patients but also bad that the disease is dismissed as terminal/incurable and people think we have lots of drugs and lots of treatments available.  I wish that this was true and everyone had the opportunity to lead a normal life with a “chronic” illness but we are no way there at the moment.  When our survival is 20+ years like HIV then we will be chronic and patients will be able to continue with their lives, families and careers instead of many being cut off in their prime.