An update on Simon

This is an update I have been putting off writing, but with this week being Glioblastoma Awareness Week, it feels like the right time to share where we are with Simon and what this means for Give Simon Time.

Simon was diagnosed with glioblastoma on 16 November 2023, although he had known something wasn’t right from July that year. When we launched Give Simon Time, the name captured exactly what we were trying to achieve. We wanted to give my brother as much time as we possibly could with Steff, Ella and Nelle, and to give him the chance to see more of the lives and futures his girls were building.

Shortly before Simon was diagnosed, Ella had signed her first professional rugby contract with Harlequins. At the final game of this season, she made her 50th appearance for the club, something I know meant an enormous amount to Simon and something that, back in those first frightening weeks after his diagnosis, none of us could have known whether he would be here to see.

Thanks to the extraordinary generosity of more than 1,800 people, Give Simon Time has raised over £310,000. That support enabled Simon to access treatments including Optune and immunotherapy that would otherwise have been beyond the family’s reach. We will never know precisely how much additional time those treatments gave us, but we do know what we have been able to do with that time, and for that we will always be incredibly grateful.

A few weeks ago, we spent several very special days together at a beach house in Bracklesham Bay. Simon and Steff were surrounded by family and some of their closest friends joining us for a BBQ on the Saturday. At the last minute, we also decided to fly our dad over from Spain as a surprise for Simon, and watching his reaction as Dad walked through the door is a memory I will never forget.

That weekend was full of family, friendship, laughter and an enormous amount of love. It was also a reminder of what Give Simon Time has always really been about. Treatment was never the end in itself. It was about creating more opportunities for moments like those and giving Simon and the people who love him more memories together.

Unfortunately, Simon’s most recent scan has now confirmed what we have all been dreading. His cancer has progressed and we are approaching the final stages of this devastating disease. Further treatment is no longer an option, so our focus has changed from trying to extend Simon’s life to balancing his quality of life, keeping him comfortable and helping him spend whatever time we have surrounded by the people he loves.

The brilliant team at Sue Ryder are supporting Simon and the family through this stage. We now have hoists to move him from his bed into his chair in the sitting room, and he needs help with almost every aspect of daily life. Glioblastoma has progressively taken away so many of the everyday things that most of us never give a second thought to, including something as simple as picking up and eating a packet of crisps, which anyone who knows the Cromack family will understand is no small thing for one of us to lose.

There is another aspect of glioblastoma that I don’t think we talk about enough, and during Glioblastoma Awareness Week I think it is important to acknowledge it. Alongside the unimaginable emotional and physical consequences of this disease, the financial impact on a family can also be devastating.

Simon has been unable to work since his diagnosis and, as the main breadwinner, that immediately changed the family’s financial position. As his condition progressed, Steff also had to give up work to become his full-time carer. For the past two and a half years, Simon’s insurances have helped them continue paying the mortgage, household bills and the everyday costs of supporting a family, but those funds are now almost depleted.

People have continued to donate to Give Simon Time, and because the circumstances have changed, we want to be completely transparent about how the fund will now be used.

As we have always set out in the Give Simon Time manifesto, this campaign was created not only to fund treatment but also to support Simon and his family through what lay ahead. While further treatment is no longer an option, funds are currently being used to help pay for additional private care alongside the incredible support being provided by Sue Ryder, helping us to protect Simon’s quality of life and support Steff as she cares for him.

Any funds remaining, together with any further donations made from this point forward, will therefore be used to continue supporting Simon’s care and quality of life and to help provide Steff, Ella and Nelle with some financial security as they face an incredibly uncertain future. Where funds allow, we would also like to make appropriate donations to some of the charities and organisations that have supported Simon and our family throughout this journey.

We want to be completely open about this so that anyone who chooses to continue supporting Give Simon Time understands what their donation will now help to do.

When we chose the name Give Simon Time, none of us knew how much time we might be able to buy. Looking back now at everything Simon has been here to see, from watching Ella develop from a newly contracted professional rugby player to making her 50th appearance for Harlequins, to the birthdays, Christmases, holidays and ordinary days together that become anything but ordinary when you know they are limited, I know that everyone who supported us helped us achieve exactly what we set out to do.

You helped give my brother more time with the people he loves, and you gave our family the opportunity to fill some of that time with memories, including a few precious days together at Bracklesham that none of us will ever forget.

As a family, I don’t think we will ever be able to adequately thank everyone who has donated, shared the campaign, organised an event, completed a challenge, offered their time or simply stood alongside Simon and our family over the past two and a half years.

We are now entering a part of this journey that none of us ever wanted to reach, but we do so knowing that, because of an extraordinary community of people, Simon has had more time and we have had more of Simon.

For that, we will always be grateful.

Jason Cromack.