Raising vital funds for life saving research in memory of Ximena Howell.
What is Menafest?
To answer this… we’ll need to tell you Mena’s story…
Ximena Howell was born 5th December 1986 to Sandra, baby sister for Anouska and Tarien – beautiful names that ended up as Nouska, Taz and Mena – which now trip off the tongue with such delight. There was just the four of us living ordinary lives, with ordinary childhood diseases, reaching ordinary milestones then, when Mena was 17, the extraordinary happened.
Mena developed pain and swelling in her right leg. Our GPs, Drs Aldridge & Bull sent us to specialists, again and again for almost two years and no-one was giving us any answers. One specialist told Mena it was probably ‘growing pains’ or a ‘sports injury’ - as if Mena was sporty! Eventually, she was seen by a more junior doctor who sent her for an MRI scan. We then received a letter saying Mena ‘has a problem with her muscle’ and she was referred to the Royal Orthopaedic Hospital in Birmingham for a second opinion.
In October 2006 when Mena was 19 we took our first trip down the A38 to the Royal Orthopaedic. On that journey, Mena asked if she had something seriously wrong with her. The classic ‘mumsy’ reply was if she had something seriously wrong with her, one of the many specialists she had seen would have told her, and it probably was just a bad muscle strain and perhaps ‘a couple of pills and a bit of physio’ (a phrase used in jest many times over the years) would sort it out.
We found ourselves in the oncology waiting room, convinced we had been shown to the wrong room but after asking where we should have been sent, a nurse said we were in the right place because Mena had a tumour in her right calf. And the extraordinary became ordinary – and our lives changed forever. Mena was diagnosed with extraosseous Ewing sarcoma, a rare form of cancer with the tumour outside of the bone, and over the next year, under the expert care of her oncologist Dr Peake and oncology staff at Queen Elizabeth Hospital, Mena underwent treatment as a patient on the Teenage Cancer Trust unit, with an operation to remove the tumour at Royal Orthopaedic.
Her resolve to live was boundless, her fortitude in managing the horrendous side effects of chemotherapy, staph and strep infections, operations, c-difficile, and radiotherapy was ceaseless. And her determination to do all this with a positive, if not wicked, sense of humour was infinite. When we wobbled, she picked us up, dusted us off and gave us quips like some things just are … so deal with them. Yes, Mena had cancer, but she had cancer with attitude.
Staff on the Teenage Cancer Trust unit taught us to treat cancer as a horrible part of our lives and not to let it take over completely and Mena managed this better than any of us – still partying when she could and resting when she couldn’t. We were encouraged to talk about the what if… would there be anything Mena wanted to do or not do, or did Mena have any wishes should she die – a very hard conversation but one which Mena, as usual, took in her stride. Mena said she was living life to the full within her physical and monetary capabilities so there wasn’t really anything she wanted to do (although a cruise to Hawaii would be nice!) but as far as a ‘send-off’ was concerned (it wasn’t to be called a ‘funeral’) we had several conversations and Mena was very clear about a few wishes and a very specific tune we promised to play. We called the tumour JR after a dastardly character on a very poor television show because it was easier to channel our venom this way. Mena came through the year-long treatment, no further cancer was detected, and we actually had t-shirts printed up with We Killed JR.
Mena had check-ups at first every 3 months, then every 6 months then every year until she had been out of treatment for about 6 years when pain returned to Mena’s leg and she had difficulty walking. After numerous tests, stress fractures were found to be present and she had a titanium rod inserted down her tibia, which allowed her to sing I Am Titanium at any and every occasion she could (very loudly).That Christmas Mena was on crutches again, but it didn’t stop her dancing on tables over the festive period – New Year’s Eve took on a new label and was called Bob Crutchett’s New Year’s Eve.
In May 2015 Mena developed a cough and chest pain. She went to see Dr Bull who immediately sent her for an x-ray the following day which resulted in a shadow in her right lung. Just like the poor television show it looked like dastardly JR was possibly attempting a return, which was confirmed in July 2015 after Mena underwent a lung biopsy at Heartlands. We were back in the Ewing’s nightmare.
On a visit with Dr Peake when he told her it was Ewing’s again, Mena said that if her condition was terminal she didn’t want to be told. Mena said she didn’t want to know if that month was her last July, that her next birthday may be her last or whether she would see another Christmas. She would fight every day that she could, and we had to fight with her.
By September 2015 Mena was critically ill with neutropenic sepsis and little capacity to breathe due to the increased size of bone cancer tumours that had traveled to her lung, some doctors at QE said she was too ill for chemo but thankfully Dr Peake left the decision to try chemo again up to Mena to which Mena’s reply was:
why are we sitting around my hospital bed wasting time talking, chemo up dude!"
The first chemo regime didn’t work so Dr Peake tried a second regime.This one worked for a few weeks reducing the tumours in her lung but then JR fought back, and Mena became critically ill again in November 2015 with acute kidney failure requiring dialysis from which she bounced back. By February 2016 it was obvious the second regime was not going to provide any further benefit in reducing the tumours, so Dr Peake tried a third regime.This one worked and significantly reduced the tumours to the point that we could start discussing a stem cell transplant – the ultimate type of treatment that would kill off JR once and for all. Unfortunately, the tumour reduction was only temporary, and JR came back with a vengeance in October 2016. Dr Peake tried a fourth chemo regime which started in November 2016 even though Mena was far weaker than previous. Disappointingly a week after the November chemo session Mena developed shortness of breath and was readmitted to QE on 18th November with low platelets and kidney failure. Despite superb one to one nursing care at QE, neutropenic sepsis set in again and although Mena’s spirit was still fighting hard, her frail body was so damaged by 15 months of aggressive chemotherapy and she couldn’t recover.
Our beautiful, brave, amazing Mena died at ten o’clock at night on 21st November 2016, age 29 with her sisters and mother by her side.
The days after that were a bit of a blur – taking clothes to QE for Mena so she could be brought back fully dressed to her beloved shire as she called Staffordshire. Picking up death certificates and going to the registrar’s office down some very strange streets in Birmingham, people-watching in the waiting room seeing parents with their newborn babies registering their births: the stark irony of the two ends of the spectrum – life and death.The registrar getting upset whilst she was filling out the paperwork, her son was the same age as Mena, so she could relate to the enormity of our tragedy.
Nouska, Taz and I had decided on using Howell & Daughters for undertakers – not related to us at all but too much of a coincidence not to choose them, and what an amazing good choice it was. Because of Jonathan Howell and Vicki Harrison the Celebrant, we were able to plan and deliver Mena’s send-off Mena-style – with love, humour and some very good tuneage as Mena used to say – the three of us chose Hold Back the River by James Bay, Elastic Heart by Sia; and Closer to the Edge by 30 Seconds to Mars. Many years earlier we had promised to play a tune of Mena’s choice – it was Disco Inferno by The Trammps – who else but Mena would make us promise to play a tune with the line Burn baby burn at her cremation? Collectively the three of us chose to play the Pogues version of Love you ‘Till the End whilst we said our last goodbyes to Mena in this life. We printed a caricature on the send-off handout – it was of the four of us with Mena’s beloved dog Skye along with sunflowers, butterflies and cancer with attitude written on the sole of her boot – because that summed up our girl. Over 350 people from all over the country came, and we gave them Mena’s favourite sunflower seeds to plant. So many people attended they couldn’t close the doors at Lichfield Crematorium and the stories and laughter at the wake at The Chadwick Arms, Mena’s stomping ground, were heart-warming and comforting. Tears were shed by many, but Mena is worth crying for.
What we do for Mena
In July 2016 during a time of extreme illness Mena started planning a one-off music festival with her friends and family to help raise awareness of bone cancer and fundraise for the Bone Cancer Research Trust, a charity close to her heart. Mena set the date, 29th July 2017, the venue was to be The Chadwick Arms in Hill Ridware (where else could it be but her favourite haunt).The group had no idea what the music festival was going to be called but sadly, Mena didn’t live long enough to see her idea become a reality. Her friends and family decided to continue her plans for a music festival in her honour – and so Menafest was born.
The event was opened by Tony Christie and people came from all over - some because they loved Mena, some because they knew her; some who had only heard about her fight, some who never knew her at all but just wanted to be there.There was entertainment for the children, and music from Rhyann Thomas (The Voice); The Moondogs; Fearless Scoundrels; Laura Aucott; The Starving Dogs and Viper Lounge, with one band giving their time for free. Whilst bitter-sweet, it was amaze-balls, there were tears and laughter and everyone had a blast, the sun shone mostly, and the butterflies fluttered with us. Whilst we weren’t sure we would break even, we raised £8,757.38 for the Bone Cancer Research Trust – a drop in the ocean for what’s needed, but a darn good drop anyway.
Because of the success of MenaFest 2017, Mena’s friends and family decided to just do it all again! Menafest 2018 took place on 28th July 2018 – it poured with rain for most of the day (our girl did love the rain) but that didn’t stop people coming out to celebrate, buy merchandise, food and drink and give generously. Many glasses were raised for our beautiful, amazing and life-loving Mena with music provided by Have a Go Heroes; The Jo Baldwin Project; Little Notes; Laura Aucott; Simon Davies (The Voice); The Moondogs; Learn to Lie and Viper Lounge, with many more musicians waiving their fees. Despite the bad weather we astounded ourselves by raising £8,502.37 which we again donated to the amazing Bone Cancer Research Trust.
Menafest 2019 took place on 27th July with vendors supplying pizza, crepes and Cantonese buffet and incredible music from The Jo Baldwin Project; Simon Davies (The Voice); Joel Campbell (Sarcoline); Old Glory & the Black Riviera; No Cubra; Learn to Lie and The Moondogs – and for the first time, every one of these amazing musicians gave their time for free. Again, the Chadwick Arms and the people of Hill Ridware did us proud and celebrated with us so generously. Whilst we are still awaiting monies to come in, the final total should again be somewhere around the £8,000 plus mark (fingers crossed).
We are not stopping there, Menafest is now part of the fabric of our little community of Hill Ridware, truly a small village with a big heart, and next year’s Menafest will take place on 25th July 2020 when we will again provide fine music, food and drink with an open invitation for anyone to come along to Mena’s party and celebrate with us, with proceeds again going to the Bone Cancer Research Trust.
Mena is truly an inspiration and we miss her so much. We never lost Mena, she is and will always be a part of our lives, we remember her, and talk about her every day, sometimes with tears but mostly with a smile.The only person who lost anything was Mena herself, she lost her battle against bone cancer and was taken away from us.
Mena drew the short straw in life, battled the demon JR twice and a 1-All draw isn’t fair or good enough for our girl. Whilst Mena was so unlucky with her health, she was incredibly lucky with friendships - friends who at times have, like Mena, picked us up and dusted us off. Without these friends - Kirsty, Tracey, Tony, Neil, Ash, Ann-Marie, Carlos, Kerry, Steph, Chick, John, Keely, Emma, Loz, Sara and Tim – Menafest would not exist and we would not be able to honour Mena in the way that we do. With this year’s money still coming in Menafest has raised over £25,000 in memory of our girl, and this will make a difference to those young people and their families waging their own battles against bone cancer - that’s why Menafest is so special.
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