In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“Papa was always happy and smiling…it was so hard to see his energy and enthusiasm ebb away. During his illness, Papa would say: “I just want to have fun again”.”
Here is Mahendra’s story, as told by his daughter Deepa Jivan…
Mahendra Mehta, my Papa, was a man with a big heart and a great soul. He was always happy and smiling. His love for people and life, and his bursting energy, attracted so many people to him. He used his “power”, as I called it, to help his family, friends, business, religion and charities.
My father was the most generous man I knew - and will ever know. Although he grew up in a very modest environment, he was very giving in every way from childhood. He was brought up in Uganda as one of nine siblings, later helping to bring over his whole family when Idi Amin expelled Asians from the country in 1972.
Both my parents were qualified teachers but, after having to move to the UK, they became involved in the managing of Post Offices, which led to my father becoming Head of the National Federation of SubPostmasters. Typically for him, he used his role to help many others in the industry. As well as giving, Papa was also very ambitious! In the 80s he started investing in property and this allowed him to build up a property business with other investors.
Life was good. Papa had grown a great business, had a beautiful wife and family life and then, suddenly, he was diagnosed with prostate cancer after a random check-up. I remember it very clearly as I was in the final year of University. It was 18 years ago, when you didn’t hear the word cancer that often. I remember the feeling so well… you grow up thinking your parents are invincible and something like cancer won’t affect them. Papa was calm and just dealt with it like a normal thing. He was lucky and recovered very well, but he felt it was a sign to change his life. He really stood back and looked at what he wanted to achieve.
Papa wanted to help others and so, he didn’t think twice when he was approached about a charity in India, called Veerayatan, set up to support blind children and education programmes in rural parts of India. He became Chairman of Veerayatan UK and helped raise funds for schools and hospitals in India. He also wanted to help promote the Jain religion, which has an underlying philosophy of non-violence in action and mind. He thought this was essential in today’s world.
He went on to support many other charities including Help the Aged, Shisukunj, Food for Life, Gujarat Earthquake Trust, Ratha Nidhi and Kasturdham. He managed to get charities working together for events, such as Cycling For Children (C4C), and was proud to be on the BBC Breakfast programme discussing them. One of his first-ever charity cycle rides raised so much money that it is now feeding over 7,000 people one hot meal for life.
Papa also wanted young children to get more involved in charity work and make them see it’s not just about writing a cheque, but about physically doing something to make a difference. When his oldest grandchild, Sai Veer, was only 10 years old he trained him to cycle over 200km for C4C in India, being one of the youngest cyclists. Sai still says that was one of the best things he has ever done. Papa was determined to change things for young people, helping them to reach their full potential even if they came from the worst conditions imaginable.
With his love for cycling and habit of waking up at 5am to be the first at the gym, Papa was by far the healthiest person in our family. He was always declaring: “I’m going to live until I’m 86!” Papa had so many plans; he had met the Dalai Lama, the Queen and Prince Charles and been sat next to Camilla at a dinner through his charity work. He was always determined to do more to help people in need.
That’s why it was a shock when his health suddenly deteriorated in 2012. Very quickly, Papa started to feel like he was losing his vision in one eye and we discovered he had a detached retina. This meant he had to stop cycling and he slowly retired from his business. These incidents were quite stressful for him. We thought that he was becoming withdrawn and perhaps a little depressed; this was really out of character for the man I knew as my father.
A family friend, a highly-trained physiotherapist, noticed the difference in movement in my father simply from the way he picked up his cup of tea. He had known my father for several years and had begun see a few changes in him. He later told us he was praying he was wrong, but instantly knew something was not right and thought it could possibly be a brain tumour. He immediately spoke to our GP and pushed for Papa to go and see a neurologist straight away.
Papa had lots of tests, which led to him having a brain biopsy. The initial diagnosis came soon afterwards; Papa had a grade three anaplastic astrocytoma. The tumour was diffuse and difficult to identify so they started his treatment following the usual plan for glioblastoma multiforme (GBM).
We had heard of GBM before and knew it was an aggressive form of brain tumour. Both Papa’s nephew, and one of our old family friends, had died from secondary brain tumours when they were in their forties. We clung to the hope that he would be okay and were grateful that at least it wasn’t grade four. His health deteriorated immediately and he started treatment in September 2013.
The tumour was inoperable because it was diffuse. Papa hadn’t wanted to have chemotherapy, he had seen how gruelling it was, but his tumour was advanced and both his oncologists recommended both radiotherapy and chemotherapy. I understood why Papa was so reluctant to have the chemotherapy; it’s a horrible experience, but there are so few options for treatment. The family all tried to support him, there were often about seven of us at his oncologist appointments! I moved back to the UK for six months to be there for him and my mum. I sometimes wonder if it would have been better for him not to have had chemo, but when you are in that situation you want to try everything possible. Perhaps this was selfish of us?
Everyone always says family is important, but this was when we probably realised it the most. Menal, my brother, Chandni, my sister, and myself wouldn’t have coped if it wasn’t for our spouses’ (Lavina, Kevel and Shainal) support. They all loved him like their own father. We already had a huge family but with their families support too, we were a force to be reckoned with!
One of Papa’s retired brothers would come every day to chop a fresh coconut open for him with a machete. Another would visit every weekend. Papa’s four sisters living in London were always coming to see him and he always smiled his beautiful, warm smile for them. He was equally close to my Mum’s siblings and they all made him feel very loved.
Our cousins, several being homeopaths and owning health food stores or pharmacies, were so supportive as we looked into all of the supplements available and overhauled his diet. We were keen to give everything a chance. Many of my cousins thought of my father as a second dad. On Valentine’s Day, one of my cousins Priya came to sing to him instead of going on a date. She told him: “You are the only date I want this year.”
Friends of Papa from all over the world got in touch to wish him well. During his last month, when he was staying in hospital as an in-patient, family and friends would all go to visit him regularly. Traditionally, Indian people like to show respect by removing their shoes and we would cause quite a bit of amusement amongst the nurses when they saw the long line of shoes at the door to his room.
Papa liked to watch movies and talk about the old days. He loved to have visitors over but we did have to limit it, so he wouldn’t get too tired. He had such a good circle of friends and a huge loving family that always seemed to make him happy. He was blessed to have this positive energy around him.
My whole family shared the responsibility of caring for him up until his last weeks. It was very hard mentally and physically, but something kept us going. My mother was our true inspiration and rock. She was so strong and she never left his side.
The people that really made Papa the happiest were Sai, Saj and Sahil (then 15, 12 and 6); his three amazing grandchildren. They would visit before and after school, his face lighting up whenever he saw the boys. He used to spend every day with them when he was well, helping with the school run, playing cricket, always sneakily giving them sweets and chocolates, as well as teaching them about life in general.
During the six months following his diagnosis, everything happened so fast. Papa’s speech deteriorated, as did his ability to walk. We had to act quickly to make everyday life better for him. There were a lot of practical things to sort out, like getting a stair-lift for the house plus bathroom support handles, wheelchairs and so on. He was exhausted and, although he wanted to do so much, he had to stay in bed and sleep. Even trying to get him out to a local coffee shop was hard. He did manage to find the strength one day to go to the pub to have his favourite drink; a pint of Guinness, with Menal, Kevel and Shainal!
When this happens to your family you try and find every resource to advise and help you.
We tried everything we could, while balancing that with what was best for Papa’s quality of life. After the initial treatments, we tried an experimental anti-viral drug called Valcyte, followed by a new drug called Avastin, hoping to improve the time he had left. Papa would have to be taken into hospital every Thursday to have the Avastin through a drip. The weather had turned cold and nasty, so it was really difficult getting him out of the house and into hospital. We were so busy that we hardly had time to see, or think about, his continuing deterioration. We just kept positive all the time.
At the end of January, Papa had a bad reaction to one of his medicines, along with severe back pain. He had never wanted to talk about his illness and never complained, this was the first time he did. He was rushed to hospital by ambulance with pneumonia, never to come home again. Around this time, Papa’s best friend was also battling cancer, melanoma which had metastasised to his brain. He died only a few weeks before Papa. Papa showed his sadness, and also anger, towards his disease for the first time at this point. It was so hard to see his energy and enthusiasm ebb away. During his illness, Papa would say: “I just want to have fun again”.
Birthdays are usually a big thing in the Mehta household and so, even though Papa was in hospital, we gave him a great birthday on 16th February 2014 with balloons, video messages and cards from all over the world! His room was decorated beautifully. Sugar had been eliminated from his diet over the previous few months and all he had been drinking were green juices and turmeric ginger tea. We went all out on his 68th birthday with a huge cake, samosas and other Indian snacks. His face lit up the most when Lavina, his daughter-in-law, presented the most enormous homemade tiramisu. It was his favourite! All he could say was “Yum, Yum, Yum”. It made us all laugh and smile so much… simple pleasures in life.
He was so happy, we thought he was having a turnaround and started making plans to take him home the following week. Papa lapsed into a coma the very next day and died a week after his 68th birthday. It was so strange to think that the week before he was taking a breath to blow out some candles, while the following week he was taking his last breath of life. Even when he was in a coma, I still had hope, believing that he might wake up and be okay.
When you have had such a passionate, loving person in your life, you feel a very big void once they are taken away. My brother, sister and I had all been incredibly close to him in different ways, each of us joking that we were his favourite child. He made us all feel special and taught us so much about love and life. He always emphasised to us to that you should help someone if you can, without expecting or wanting anything in return. We all decided we needed his legacy to live on. We want to fulfil a lot of his charitable wishes in our lifetimes, for him and my mother. One of his wishes was to raise awareness around brain tumours, as well as the need for more research.
We had researched brain tumours when Papa was sick, looking for hope, and I remember coming across the statistics on the underfunding of brain tumour research and feeling quite traumatised. People donate to larger cancer charities, thinking they are supporting progress across all forms of cancer research, but that’s not really the case.
For Papa’s funeral, our very close family friend, Azad, had t-shirts printed within two days and flew to the UK with them in his suitcase. The t-shirts had Papa’s picture on them and the slogan: “Cycling for Mahendra – Find a Cure”. Papa’s friends and family donated £20 each for a t-shirt. We even had a convoy of cyclists bringing in his funeral car. One local resident walked passed and asked my cousin: “Which famous person has died? I haven’t seen this many people at a funeral for a long time.” That day we made around £8,000 for the charity. He would have been so proud.
A month after Papa passed away, I noticed that it was “Wear A Hat Day” for Brain Tumour Research. I thought this was so spooky as Papa was hat obsessed with so many styles in his coat cupboard. That year, my family and I managed to get so many people to wear hats and donate, we took so many pictures. It made us all feel like we were doing something for Papa. Strangely enough, it was also the year I started supplying Easter hats and bonnets to one of my favourite customers: Hobbycraft in the UK.
Earlier this year, when I started preparing for Easter 2017, I had a bit of a brain wave! I wondered if I could help organise a charity collaboration between Brain Tumour Research and Hobbycraft, around “Wear A Hat Day 2017”. My idea has now become reality and we are producing a special Purple Glitter Side Hat as well as three Easter bonnets, all of which will have a percentage of profits donated to Brain Tumour Research. I was so emotional when Hobbycraft agreed. I’m so grateful to them that we can make this difference together. It’s incredible that the work I love so much could actually help others. This is for Papa, and our close family and friends whom we have lost to brain tumours recently. There has to be something positive to come out of something negative. I miss my papa, my best friend.
For any of you who are going through what we went through as a family, the best advice I can give you is: “It’s not the years in your life that count. It’s the life in your years.”