In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Monika Haftmann was a nurse and care worker and was married with grown-up daughter. She was diagnosed with a glioblastoma multiforme (GBM) brain tumour and died ten months later at the age of 56.
“Alongside her conventional treatment, mum tried things like homeopathy, I encouraged her to change her diet and she even had injections of snake venom. There were times when I thought the stress and worry I had caused her had contributed to the illness but I know in my heart that is not the case; the fact is that no-one knows what causes brain tumours and there is no cure.”
Monika’s daughter Eva tells her story …
I am an only child, a longed-for, much-loved child, my mum's "lottery prize". Mum had been told it was extremely unlikely she would ever conceive so, when I came along against the odds, I was the centre of her world and she mine.
I grew up in Germany where I had a happy and protected childhood in a supportive family. Growing up my mum was always there for me and she and I always had a special bond; she was my best friend, she knew everything I was up to and was always there with good advice. But this special bond brought difficulties too as I grew up and started to spread my wings.
It wasn't easy for her to see me moving far away from home, first to Berlin and then to London but we always managed to work through it and be there for each other. She knew in her heart that I was happy and that was what she always wanted me to be. My mum was a passionate, positive woman and I had never met anyone like her who was always there for her family and the people who needed her.
In 2014 I moved to London as an assistant for an advertising and beauty photographer working with brands including L'Oreal, Garnier and Avon. I flew home regularly, every two months or so and during the other times we were in touch every day by phone or text. I knew she was worried about me all the time and it wasn’t easy for her to let me be that far away from home.
The time we all loved the most is Christmas. For us it is family time and I never want to spend it anywhere other than home. We always spent Christmas Eve together and, in 2015, we went about our baking and visiting the Christmas markets close to my home town of Samern on the Dutch border. That was the first time my mum mentioned she was having a problem with her peripheral vision.
Mum was a strong woman who was never really sick so although it was unusual to hear her complain it didn’t seem that serious. We had a wonderful Christmas but when it came to the usual discussion about me going back to London, things seemed more tense than usual and it was difficult to know what to say. I wanted her to be happy but there was no way that I couldn’t go back to my life and my job in London. Later on in 2016 she mentioned that she had a feeling it would be her last Christmas with us, which explained a lot to me.
By 27th December mum had lost a big part of vision on her left side and so after confirmation from the eye doctor that wasn’t something he could deal with my dad was advised to take her directly to the neurology department at the hospital. With her reassurance and my dad’s that everything would be fine, I flew back to London as planned and waited anxiously for news. I was hoping for the best and didn’t realize the seriousness of the situation until my boyfriend Alex came back home from work in the morning to tell me we needed to call my mum. The news was as bad as it could be: mum had a brain tumour and they wanted to get it out. It was very clear from the start that my parents were going to be very open and tell me everything. Despite the shock, mum was determined it would be OK and we would get through it.
Alex and I cancelled our plans to spend New Year with friends and flew home to be with my parents. Mum had been allowed out of hospital and was awaiting surgery on 4th January 2016. We tried to set aside what was to come and make the most of the celebrations, playing board games together as we always did. At one point mum was really struggling with her vision and she became very quiet and upset as she told me she feared what lay ahead; she was frightened she wouldn’t be herself any more and that she wouldn’t recognize us. Even though it was tough I managed to remain strong for her, I told her it would be fine and we would always be able to play games together and of course always love her.
On the day of her surgery my mum didn’t take the pre-med she was offered before the operation because she knew we would arrive before the surgery and she wanted to be 100% there and with us. As a consequence she became very nervous and scared which was very hard to see. After five long hours we finally got the good news that operation had gone well and it looked like the tumour had not invaded her brain at that stage so, consequently, it was virtually all removed. As mum came round from the anaesthetic, she was upbeat – I was so shocked and relieved that I fainted!
It was a very icy day and, as we returned home tired but reassured, the phone was ringing. It was my mum, so recently out of surgery yet she was thinking about us, anxious to know we were back safely.
A week later mum was home and she told me how pleased she was that I was happy in London and had Alex to take care of me. Once the results came through we received the news that the tumour was an aggressive glioblastoma multiforme (GBM) which could grow back within nine months – and that is exactly what happened. But my mum was determined to stay positive and fight for her, for us. She even wore a little button saying “I stay positive” - it was her motto.
Just after my mum started her first day of chemotherapy and radiotherapy, I got a call from dad to say she was in the hospital. She had suffered a seizure, most likely caused by scarring from the surgery. After all her determination and positivity, this really threw mum and she was frightened it might happen again. I flew home for the weekend as a surprise.
The treatment took a lot of physical and emotional strength from my mum. She started losing hair and her face was swollen, I always reassured her she was still beautiful. For a long time she wouldn’t let me see her without a wig or something covering up her bald head but I knew it could be uncomfortable for her so encouraged her to uncover her head when she was around the house. It was a great moment when she started to open up and didn’t cover her head anymore when I was around - it brought us even closer together.
Alongside her conventional treatment, mum tried things like homeopathy, I encouraged her to change her diet and later on she even had injections of snake venom. There were times when I thought the stress and worry I had caused her by moving that far away from home had contributed to the illness but I know in my heart that is not the case; the fact is that no-one knows what causes brain tumours and there is no cure.
It was always hard leaving her to go back to my work and life in London after a great weekend at home. The uncertainty of what might happen was hard to bear but my boyfriend Alex travelled with me when he could and was so strong, not just for me but for mum and dad as well. He was the one that always encouraged us to stay strong and positive.
In August mum was well enough to attend a cousin’s wedding and she had so much fun and joy dancing the night away. The next day we spent my birthday together and in September mum, dad, Alex and I managed a week away in the Netherlands. We had an amazing time and celebrated my dad's 60th’s birthday. We cycled, laid on the beach and explored the island, though it was difficult to stop my mum and slow her down as he was struggling to keep on going like she normally would on a holiday.
The day before we left it was my mum’s birthday, I was determined to make it a wonderful day for her and we had an amazing breakfast but afterwards she started to feel really sick and remained unwell throughout the day. It was such a shame and I was so sad this day was ruined for her by health once again. Still we didn’t expect what was coming just two weeks later and that this the first sign of new tumours. Mum and dad stayed on after we left and two weeks after her birthday I realised something was wrong when I spoke to her on the phone. Dad said her condition was deteriorating and I encouraged him to get help.
The next day we got the bad news after a perfect scan in July now, just eight weeks later, the tumour had grown back in eight new places. Even the doctors were shocked and couldn’t explain this aggressive growth. Surgery was not an option. Alex rushed back from work in the Lake District with minutes to spare in order to board a flight home with me. We arrived at the hospital at 2am. Mum was asleep and looked so fragile.
The next week we felt as if we were on a roller coaster. One minute there was nothing to be done and then we were told more radiotherapy was a possibility. We were desperate and it was so difficult to know what to do. Above all we were concerned that having further treatment would ruin the precious time we had left. In our hearts we knew this was the end of our journey but it was difficult for my mum to let go and stop fighting for us. We stayed strong as a family and my mum said she was so happy to have us around and that we were always there for her.
After two weeks my mum was able to come home on palliative care but she was determined she didn’t want to die there. She spent her final hours in a hospice where we were all treated with exceptional care and understanding.
Dad and I spent alternate nights at her side throughout. We had long talks and the time was so precious. We had time to say our goodbyes and not everyone gets that. During one of our many honest talks mum had already said she didn’t want me with her when she died and she achieved her wish. She passed away listening to a CD of the sounds of the ocean which had been given to her by my future parents-in-law.
Mum was cremated and her ashes were placed beneath a tree in a forest burial ground. I feel that she has found peace and freedom in the forest. I visit whenever I am home, I feel calm when I am there and can talk to her quietly.
When mum was poorly, Alex had asked to have time alone with her as he wanted her to know that he was going to ask me to marry him. This made her so happy and it was the best gift he could give to her. Mum passed away on 11th October 2016 and, six months later in the Joshua Tree National Park, California, Alex proposed. We plan to marry in 2018.
I still sleep with mum’s jumper in my bed. When I miss her I look at the final letter she wrote me or the GoPro footage we took in her final year, it’s such a comfort to see her and hear her voice. Mum gave me a piece of jewellery which had been in her family for generations which I will always treasure, wearing it makes me feel close to her. I will always love her and miss her but I know she is around and always will be.
Mum was such an amazing woman and I hope this story conveys even just a little of how wonderful she was.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
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