News and events Blogs My ‘Major Support System’ and ‘Full on Rocks’ my mum and Gateshead Carers Caring from a very young age to becoming a young adult carer, this carer’s journey is so inspirational and takes us through the heartache of illness, loss and a series of set-backs to success and happiness! It is an emotional roller coaster so make sure you are sitting comfortably and ready to share in this amazing story of courage and hope. Taiyyibah shared her story with us in a series of conversations. A close and loving family My parents met through a loving and happy arranged marriage in Pakistan and it wasn’t long before my mum returned to family in the North East and that I was born. We were a family separated by immigration and my parents felt that our future as a family would be better in the UK where education and work prospects thrived. An application was made for my dad to join us but was rejected and despite appeals and a further 6 applications over a number of years, he was never allowed to join us. My mum became a working single parent and the two of us moved to Lancashire where we were supported by close family. Living amongst an entirely Asian community and a very supportive one too, my mum started to speak less and less English and relied more on me. Working hard for the two of us, my mum also saved up enough money to make regular visits to Pakistan and to be with my dad. I was very close to my dad and we spoke often to each other. But it wasn’t long after returning from one of these visits before my mum became very sick with chronic abdominal issues. I was only around 6 years old and found myself looking after mum but not knowing what was wrong. The doctors didn’t know either and it seemed to go on for a long time. Some years later on a visit to Pakistan, mum saw a renowned consultant who immediately diagnosed Hepatitis C and we knew then that it was serious. Further hospital tests in the UK came back positive and hospital visits started. It was a very scary time. She had 1 injection and 35 tablets to take each week. The side effects were similar to someone having chemotherapy with her hair falling out and feeling severely tired. I had just finished my GCSEs and was starting my A level studies whilst mum was having treatment and I was looking after my little brother too who was a young toddler at the time. It all became too much for me and my A level results suffered and I failed to get the grades I needed to study the degree in Pharmacy that I had always wanted to pursue from being a little child. I was devastated as I didn’t then have a back-up plan. I had always been good with younger children and enjoyed teaching them the Quran and other studies so a career as a primary school teacher formulated in my mind. Through university clearing I was offered a place on a teaching course at Bradford University and so I thought that was what was going to happen. Meanwhile I stumbled across a foundation course at Sunderland University which was a one year biopharmaceutical sciences course that if passed would lead onto the degree course that I wanted to do. Studying to be a Pharmacist: 2013 – 2020 I rang and rang to get onto the course and then heard nothing for 2 weeks. It was while mum and I were shopping in Primark in Bradford that I got a call back to say I had a place at Sunderland University! It was a lot to get my head around and for mum too as we had both resigned ourselves to the prospect of me being a primary school teacher and studying locally. My mums hopes and dreams lay in me now! Mum’s health started to improve and she was officially ‘in remission’ from Hepatitis C, but the illness never really left her and she endures severe pain in her neck, shoulders and back to this day. Although it felt very daunting to move again, having spent 5 years living in Bradford, with mum feeling better, it meant that we could travel back to the North East and for me to take up this ‘golden opportunity’. We were lucky that a flat owned by a family member had just become available and we moved in quickly. I started my studies at the university campus at Shiney Row, which was a bit terrifying to be honest, as not only did the journey take one hour each way every day, but I had to travel home in the dark, a single young girl wearing a hijab. Luckily my classmates were really nice and a few of us started travelling together on the same bus. Mum’s health took another turn for the worse which involved being in and out of hospital. The university was very supportive and happily I went on to pass my foundation course in 2013. I then started the first year of my MPharm degree at the University of Sunderland in 2013, completing my first year successfully. As I went into my second year of study my mum’s health got worse. She was having extreme right sided abdominal pain for many years which suddenly became worse during this time, with no diagnosis for numerous years. This resulted in countless hospital appointments, scans and tests. Due to all this, I ended up having to re-sit the entire second year in 2015-2016 It was a very distressing time for my family resulting in an increase in my duties as a carer which caused a negative impact on my studies. I was put in contact with Gateshead Carers at this stage and I am so glad that I found them. In 2015, my mum, brother and I travelled to Pakistan together for a 6 week holiday to be with dad. I hadn’t seen him for 8 years and it was a magical time as well as a time to get to know each other properly again. I was now a young adult and my brother a teenager. Mum visited the same consultant in Pakistan that had previously diagnosed her Hepatitis C and on examination he said she had chronic appendicitis! Back in the UK and straight to the QE Hospital, mum was referred to general surgery. The surgeon was fabulous and performed keyhole surgery and this took mum some time to recover from. In addition, she also has Type 2 diabetes. This procedure was carried out in April (while I was studying for an important exam). As things began to escalate with my mum’s health, I decided to defer to August, submitting mitigation with all the relevant evidence. Even though I was still not fully prepared to sit the exam in August, I decided to sit it and unfortunately did not pass due to my extenuating circumstances. Therefore, now I had one sitting left of the exam which was to be the following May. I was now an external student for the year 2016-2017. Unfortunately, things took a turn for worse in September 2016 as my father had a sudden severe heart attack; we had to fly out to Pakistan overnight as he was in a critical state. We realised that it was a major heart attack and it was advised that he needed a triple bypass urgently. We then stayed in Pakistan for four months to support my father during this difficult time, wherein I was caring for both my mother and father. It was extremely difficult to get the right treatment and procedure for my dad. I was ‘a 24 hour, around the clock nurse’ for my father, taking care of all his needs. This was exhausting for me physically, mentally and emotionally but I was running on autopilot. We came back to the UK in January 2017, after my dad was well enough to do most of his own personal tasks. Things take a turn for the worse On returning to the UK I started my revision and preparation for my exam in May. However, in March 2017 my dad’s health unexpectedly deteriorated. He got a very sudden onset of symptoms of peripheral vascular disease which progressed very rapidly causing reduced circulation to both of his legs and feet below the knee. He lost all his mobility as both his feet became extremely ischaemic and it was painful for even a feather like touch to the feet. He became wheelchair bound very quickly as treatments and vasodilators were not having any effect. Within 3 weeks he was facing amputation below the knee for both his legs. This was the hardest time for my family as he was in Pakistan and we were back in the UK, trying to get our lives back together again. Shortly after this shocking news he suffered 3 strokes in a space of 2 weeks. Finally, a CT scan was completed of his entire body and it was discovered that he had a clot in his heart which had fragmented and had spread through his body. This was the cause of the ischaemia and strokes which he had previously suffered through. The fragmented clot caused a “pseudo aneurysm” to occur in his heart. Yet again we had to fly out to Pakistan overnight as he needed to be admitted into a hospital ASAP. As soon as we got to Pakistan we went back to the capital city to get my dad admitted into a good cardiac hospital. We went to 7 hospitals on that day to get him treatment for his heart, but no hospital was willing to admit him as they were shocked to see the state of his necrotic feet. We would be turned away as they were not willing to take a “risky case”. The second day of us being in Pakistan dad had another stroke and was unconscious until the next morning. On waking up he had no memory of anything, his own identity or the identity of all his family members around him. With the occurrence of the stroke and his memory loss I finally persuaded a surgeon to admit him into a hospital and treatment was finally started, and a brain scan was done. Things started to get better in terms of the circulation in his feet and legs. His brain scans also came back as normal and we were filled with hope. However, 3 days later, very suddenly he passed away because of a pulmonary embolism and following from that cardiac arrest. He was only 43 years old. Whilst in Pakistan during that one week, I informed the University of the latest developments, and I managed to submit mitigation for my exam in May and deferred it. It was a devastating time for us as his death was so sudden, considering he had survived a massive heart attack AND a triple bypass surgery. It was further devastating because on returning from Pakistan in January we had set in motion another visa application, to get him here in the UK. This application was just about to go in with very high hopes of success, and then we got the news of the aneurysm. I somehow managed to get through all of these events and on returning to the UK, I sat the exam in August and by some miracle I managed to pass it. Continuing with the course and going back to university was a difficult choice to make but I knew that I wanted to do this. Studying pharmacy was something I wanted to do from a young age and I desperately wanted to be successful so I went back. During the beginning of my third year in September 2017, my mum started getting a lot of pain in her foot. Her health had deteriorated on her return from Pakistan and she was also very depressed, considering what we had just been through. The pain was getting worse over time and her mobility was also decreasing further. As she already had fibromyalgia and abdominal issues, which continued post-surgery, her mobility was already very limited and was getting worse. When the pain in her foot started it was diagnosed as diabetic neuropathy. Treatment was given and tried by mum for a couple of months, but the pain was getting even worse. It got to a state where she couldn’t bear weight at all on her left foot. A couple of other diagnoses were made but no drug treatments were having any therapeutic affect and her condition was getting worse. An x-ray was finally done many months later and showed a defect in her foot and she was then referred to the foot clinic. An MRI was carried out at the hospital and we received another big shock. She was diagnosed with osteoarthritis in her feet with more than 40% of her main weight bearing bone of her left foot eaten away. The only treatment option there is at the moment is pain relief and major surgery to graft and replace the bone and close up the hole. This took a major toll on us as a family and we had to rethink our entire near future. We realised quickly that the property we are living in currently has become unsuitable for mum. She was already having lots of difficulty moving around, especially with stairs and using the bathroom and it was getting worse every day. The above events were occurring near exam time, but I was determined to pass the exams even though I was going through an awful lot. My thought process was that I need to get through this year and degree as I have already been at the university for such a long time. I was putting way too much pressure on myself and motivating myself to do the exams. Alongside this, I was dealing with even more hospital and GP appointments as one thing after the other was going wrong with mum’s health. This resulted in my attention being divided into so many things and I was not managing to solely focus on myself and my studies. In May I did not pass my exams, however in August time when re-sitting, I had managed to focus a little bit more and passed one exam. However, I had 3 consecutive exams on three consecutive days and unfortunately I hugely panicked on opening the exam paper and could not get through it and answer the questions. As soon as the exam finished, I ran into the nearest toilets and broke down sobbing. My friends and class mates had to help get me home as I was in such a bad state. However, even though I was in that state, I still thought that I was going to be able to sit the second module exam the following day. Now, looking back I realise how big of a mistake this was. On the morning of the exam, walking into the exam room I had to physically take a couple of deep breaths and stop myself from crying again. I told myself that I could do it and at least pass one module. I answered what I could in that state of mind and came out of the exam room and ended up crying in the toilets for over an hour again and finally went home. On coming home, I ended up having a breakdown and went through a major bout of depression for 2 weeks as I kept thinking I had failed, after how horrendously one exam went. I have been through so much and have never experienced anything like I did for those 2 weeks. It took me a lot of time to get back on my feet again. My family, cousins and friends really motivated me to get out of bed and urged me to get help and aided me to come back stronger. This made me think about my wellbeing and I took a big step to go and see my GP and my support worker at Gateshead Carers. With my support worker, we worked through a plan and strategies to put in place to help make my life a little easier, in terms of my caring role, responsibilities and my own mental wellbeing. Celebrations, Graduation and an Award! The next two years have been very eventful and with very happy and life changing events taking place too! In June 2020, I graduated with a Master's degree in Pharmacy and am now beginning my pre-registration year as a trainee pharmacist! I have also been informed by the University of Sunderland that I am to be presented with a very special award which is presented to a graduate who has demonstrated caring and compassionate qualities during their degree course. The Jemma O'Sullivan Award for Care and Compassion in the Practice of Pharmacy, celebrates the caring qualities shown by the recipient during their degree. Jemma O’ Sullivan was just 22 when she was killed in a motorway crash in 2010. To mark this lasting legacy for a fourth year student in the University’s Department of Pharmacy, Health and Wellbeing, her parents, Vincent and Margaret, have sponsored a special award for the last three years. This year it has been awarded to me! I am absolutely amazed and shocked at how I have managed this! We have all been in tears, my mum, brother, cousins, everyone! But I feel over the moon! When asked what kept her strength and determination going through all of this Taiyyibah said, “Mum’s suffering kept me forging ahead, asking questions, making calls, contacting doctors”. It’s taken me 7 years to get here but now I’ve got my degree and this is the biggest achievement of my life! I couldn’t have got here without the support of Gateshead Carers, who have been my ‘Major Support System’ and together with my mum, my ‘Full on Rocks’ the whole time.