I can’t thank you enough for your lovely comments and messages over the past couple of weeks while I’ve been unwell. Your kind words of concern and warmth have carried me through some very dark moments, and it’s been like being surrounded by a blanket of friendship and compassion. There really aren’t words to describe how much your kindness has helped to keep my spirits up while I’ve had to concentrate on getting better.
As you probably know, I have Stage 4 Advanced Breast Cancer, which means that the treatment I’m on is all about prolonging life rather than curing it. The Cancer has spread to my bones so a cure is no longer possible. However, apart from my deteriorating mobility issues, generally I’ve been very lucky, and I’ve managed to stay pretty well all things considered. However, when you are an on-going cancer patient, anything extra that develops can mean that something serious is happening.
About two weeks ago, I developed breathing problems and they worsened very quickly. I was admitted to hospital because the concern was that I might have developed a pulmonary embolism, which can be life-threatening, and it’s also something I’m at a much higher risk of having due to my cancer status. Fortunately, that was ruled out, and I’ve had lots of other tests and investigations that have now ruled out nearly all of the more nasty possible causes. I’m still much more short-breathed than I usually am, but I’ve had a lot of much-needed rest and recuperation and despite the breathing issues, I feel better than I have done in a long while.
What this past two weeks has done for me, though, is to give me a chance to step back and reflect on the amount of work I do and how it can sometimes impact on my health. Four years ago, on the day that I was told that the cancer had spread and that my prognosis was significantly poorer than I would have wanted, I knew immediately what my bucket list was going to be. All I wanted to do was to find a way to make things easier for the next generation of vulnerable families like my own, where there is a child with significant additional needs. However, I never expected it to snowball in quite the way it has done, or to bring me so many opportunities and to open the doors that it has done in so many ways.
My life is truly blessed. I am privileged to meet so many wonderful people both in real life and on-line, and to have formed so many treasured friendships along the way. I am honoured to be invited to take part in dozens of fascinating projects, and to speak at conferences and to run workshops with parents and professionals. I often wake up in the morning and wonder how on earth I got from being a stressed out mother who felt judged and blamed constantly for not being competent enough to parent my own children, to where I am now, when what I say on behalf of our community gets listened to, heard and taken on board by so many people who can truly help to make a difference to the way things are done.
However, there has been a cost to all of this, and last week was a wake-up call that I’ve badly needed for a very long time. The cost is my exhaustion, and the toll it is taking on my health and well-being. This past week or so has given me a really valuable opportunity to take stock and work out how I can continue to do what I do, but in a way that is sustainable, and that will protect my health for as long as possible. So over the next few days I will be emerging from my enforced hibernation, but with a much clearer idea of how to set boundaries so that I don’t burn out again much too soon like I nearly did last week.
For the past several months, since I started focusing on the children within our community who present with violent and challenging behaviour, I have been contacted by hundreds of families in this situation. These are parents who have exhausted every other avenue to try to access help and support and they don’t know where else to turn for advice. It is utterly heart-breaking that there is so little help available, and that this whole issue has been hugely underestimated and barely understood by those working within Statutory Services. Every day I’m hearing harrowing stories of fear, injuries and distress that no family should have to face alone, yet the reality is that there are thousands of families who are coping unsupported, behind closed doors and with no help whatsoever on the horizon. I felt strongly that I couldn’t abandon these families as well and that I had to do something, so I’ve tried to answer every message and every email personally, but it has become just too much. To keep up I have been working 14 hour days, seven days a week, spending several hours every day replying with some suggestions and ideas.
It has become untenable, and I now realise that I simply can’t reply to every email in the same way anymore. This has been a very difficult decision because trying to reach out with a lifeline to families in need is something that I have always tried to do because I know what it’s like to feel isolated and in despair, and and it’s become second nature to me. However, I cannot afford to risk my health, and my family also deserve more of my time than they have been getting recently. Instead I will use some of that time in finishing the books I am currently writing which will contain far more information than a single email possibly could, and I will also endeavour to write more content for my website that is freely available for anyone to access.
I hope that this new way of working will actually have a greater impact on a much larger number of people, and I do hope that you understand why I have had to take this decision. Most of all, you all know me, and I’m more than likely to get carried away and jump in with some thoughts and suggestions every now and again on social media. So, if you see me doing so, please remind me that I’ve promised myself that I won’t!
Thank you. Yvonne