'I am passionate about disability equity'

It wasn’t until my early university life that I began to really feel the gaps and strains of the remission journey. I’d had childhood cancer, so it was only when I reached adulthood that I found myself recognising just how vastly different the active treatment and post treatment phases of a cancer journey are. So when I entered the professional world a few years ago, I wanted to try and use my lived experience and wider expertise to make some meaningful changes for other people who found themselves in a similar place to me.

Managing my health

I think the parts of life which are most challenging and underappreciated –because they are the least visible – are all the secondary health issues which can come even in the days, months, and years after your cancer treatment finishes. Chronic pain, damage to other life systems from chemotherapy, and the stress of the entire journey often take their toll. I feel very lucky in that I have found myself in a number of places professionally and personally to be able to not only speak about my experiences but also seek the support of my family, friends, and employers to manage my health in a more meaningful manner.

As a practical example, I was able to support my current employer in both developing and deploying a generous additional leave allowance we titled “Disability and Carers Leave”. This allocates ten paid days leave for those with disabilities, long-term health conditions and/or caring responsibilities to enable them to take time away from work. They can use these days to attend appointments, manage their health conditions, and care for their general wellbeing without utilising other forms of protected leave such as annual leave or sickness absence. Having supported in the development and deployment I have also subsequently been able use this leave myself to attend my many hospital appointments and manage my chronic pain.

Being honest is the key

I have always had a very open and honest dialogue with my line managers when it comes to my health. As early as interviewing for a role I informed them of my health history and the specific support I would need in addition to what they may traditionally be used to. This has enabled me to feel more in control of my health. When I’ve needed time away to manage my health or had periods of flared chronic pain, I’ve been able to discuss ad hoc adjustments with my management and either remain at work, or when needed take disability and carers leave. This has all been possible because I have had conversations from the earliest point with them about the unique accessibility needs that could arise during my employment. It has never, therefore, come as a shock to them.

While this can be really challenging and I recognise how fortunate I’ve been that most of my managers over the years have been very supportive, I would encourage others to try and take a similar approach where possible so that you can rely on your employer to support you when the time comes. I would also highly recommend using any Health and Wellbeing (or equivalent) Passport that your employer has to facilitate conversations with your manager. Examples of Health and Wellbeing passports are available if you would like to champion developing a local offering for your organisation. A lot of people I speak to who are in a similar position don’t necessarily have this privilege. This is a big part of why I became involved in Mission Remission – to try and share some of my positive learning experiences.

The side-effects from treatment continue

Despite this, the seen and unseen side-effects of treatment continue to provide daily challenges, despite the time that has lapsed since my initial diagnosis and primary cancer treatment. There are various parts of my treatment journey which continue to this day because of the nature of my diagnosis and the interventions that were carried out at the time. I suffer from pain in various parts of my body, some due to the extensive surgery I have had, others due to the damage caused by chemotherapy. Managing this pain is a daily battle, with varying intensity, degree, and location. I have also faced challenges such as unexplained pain and swelling in my hands which is likely to be due to my long-term treatments and that unfortunately has no resolution. I use keyboards and computers a lot in my work and this is obviously difficult when my hands are particularly painful.

My work with Mission Remission

Coming across a community like Mission Remission where I’ve been able to engage with other people in the same situation has been very therapeutic. The charity provides a platform for people to come together and share their experiences with a view to helping one another. In my role as Chair, I’ve also been able to find a lot of support from my Trustee Board which has been a really positive experience and something I am very thankful for. Being part of Mission Remission has allowed me to find a group who have shared lived experiences. It’s a group I can lean on around challenges and other situations I may find myself in as I navigate my career, and to whom I can also offer my own expertise.

Hasan is our Chair at Mission Remission and has been in remission himself for just over two decades, after a diagnosis of Ewing Sarcoma. In his professional life he is Head of Equity, Diversity and Inclusion at a large NHS Trust and works in a number of other roles across the voluntary/charity sector. Hasan is an avid Formula 1 fan and lives in the South of England with his wife and son. He is passionate about disability equity and is always available to provide support and guidance to others with a listening and supportive ear.