Muddy Stories - 'Amber'

With Muddy Stories, we made the decision to keep the person’s identification anonymous from the beginning. We are hugely appreciative of those that have agreed to share their stories. It takes a great deal of courage to write these stories and the process itself can be very emotional and exhausting. Muddy Care realises the importance of anonymity within these stories, as the immense personal challenges of some chronic conditions means that privacy is often a fundamental management tool. Therefore, we have changed the subject’s name.

Amber received her life changing diagnosis at the age of 17 after developing concussion in a rugby training session and subsequently she was examined by A&E thereafter where they went onto diagnose a large rare brain tumour.

Amber has undergone numerous operations involving complex neurological surgery to save her life. Throughout her journey, Amber has been a patient under multiple departments, but primarily neurology and oncology and as in any operating situation there are risks with neurological surgery which resulted in Amber being impacted on her right side i.e. deaf in one ear, double vision, facial palsy, slurred speech, limb weakness, balance issues as well as additional challenges.

Amber travelled abroad to receive Proton Beam therapy over a three-month period, but thereafter complications surfaced in the coming months after the radiotherapy treatment had concluded. Further surgery was incurred and steroid treatment was received over an 18 month period before Amber was finally weaned off by a specialist Endocrine team. The tumour remains in a stabilised state and will continue to be monitored for many years to come.

Amber’s lifestyle improvements received thus far is a 360 cross aid hearing device allowing their deaf ear to channel sound to their good ear, prism glasses provided to aid eye muscle strength to reduce their double vision, and in addition to this Amber has learned how to write again and has continued physio support to build up balance and strength. Last year she received her first elective surgery where they received pioneering reanimation surgery to improve Amber’s facial palsy to rebuild a smile with future cosmetic surgery to take place for a permanent weight in her eyelid.

Where is Amber at now? Amber can no longer take part in physical contact sports, but as part of that lifestyle adaption they have taken up new interests such as cooking, partaking in activities in the local YFC club, snooker, horse riding, just steadily rebuilding their social life outside the home environment. For Amber, her ultimate goal was to return to work and with the support of numerous people she finally achieved that goal in January 2019 based on a few hours a week to start and is still gradually building those hours up, week upon week.

With the opportunities that the Muddy Care mini pilot scheme can offer in enabling Amber to undertake more varied recreational activities such as walking, cycle riding and surfing, as well as providing tools and ideas about all areas of health and wellbeing, but importantly still understanding their fatigue and concentration levels play a daily challenge, Muddy Care will only further improve the quality of lifestyle for Amber. This scheme will also enable her to network and socialise with other people of various ages that have also been through their own unique experiences, which Amber has never been able to do on a regular basis. It is the socialisation aspect of Muddy Care that provides a key supportive mechanism for all.