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:
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.
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.
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 last Saturday in July), 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.
With the exception of two years during Covid, we have organised the annual Menafest Music Festival which still takes place on the last Saturday in July. We have between 6 and 8 live music acts from solo artists, duos, trios and bands – all musicians now giving their time, expertise and talent for free. We sell merchandise, and raffle tickets - with all raffle prizes donated by local companies or individuals. We have children’s and family activities run by local organisations, not charging us a penny for their expenses but giving all the money they raise on the day to Menafest for BCRT. We have food vendors always giving a percentage of their takings, and we have our Mena’s local haunt, The Chadwick Arms, allowing us to take over their premises and car park. A local company loan a trailer, which is miraculously transformed into a stage, and we have one of the best sound engineers in the area providing top quality sound and lighting systems.
People attend the Menafest Music Festival from all over the country – some because they knew Mena and knew how hard she fought to live, some never knew her at all but just want to come and have a great day out, listen to some fine live music and contribute to a great cause. It’s rained on every Menafest Music Festival day so far, sometimes for only minutes, sometimes for hours but the rain has never deterred anyone from having a blast – and after all, our beautiful, amazing, life-loving Mena did love the rain.
Throughout the year we run other fundraising events – music nights, quizzes and race nights. We have local people running half marathons and marathons raising more funds for Menafest, with more marathons planned for the future.
Menafest is part of the fabric of our communities of Hill Ridware, Hamstall Ridware, Mavesyn Ridware, Blithbury and beyond – all small villages with big hearts.
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 them, Menafest would not exist, and we would not be able to honour Mena in the way that we do.
- Sandra, Nouska and Taz
You can make a donation or pay in funds raised by cheque, payable to Bone Cancer Research Trust, to:
Bone Cancer Research Trust, 10 Feast Field, Horsforth, Leeds, LS18 4TJ.
Please ensure you make it clear that the donation is for Menafest so that your donation is allocated to the correct fund.
100% of donations to Menafest will go towards our vital work.
