‘No-one can be wonder woman’
Dealing with depression and cancer
‘We were sky-high. Then the consultant told us he thought it was cancer’
Sue Baker will never forget the day she found out she was going to be a mother – for it was also the day that the mental health campaigner discovered she had terminal cancer. Baker had been ill for some time, but as the director of Time to Change, the programme that aims to end discrimination against people with mental illness, she had enough to be getting on with, convincing employers from the Treasury through to Tesco to sign up to their campaign.
“I was very big out front. I looked about nine months pregnant, but I had been told I had fibroids, which are non-cancerous lumps. I took some hormones to try to shrink them, and I thought that was why I felt so ill. It may seem silly that I was focusing on the campaign when something didn’t seem right, but I’ve been fortunate that for most of my life I have been able to put my health on the back-burner while I focused on my career.”
Today, Time to Change celebrates its 10th birthday. The campaign, the most ambitious in this country to date, has signed up more than 700 employers – including FTSE 100 firms and every national government department
– to its pledge to provide equal opportunities for everyone who has mental health issues. But in the midst of all this has been the most incredible suffering for its founder.
Baker, now 50, met her wife, Alex, in 2003, just before she was due to fly to New Zealand to start a job at the country’s leading mental health charity. She had just come through a serious bout of what she terms “reactive” depression – her father had been on the brink of death and she had experienced a significant relationship break-up.
“I had been suicidally depressed, and was just beginning to recover my strength. I was offered this job on the other side of the world and I thought: ‘I have nothing to lose.’ I think sometimes you get more confident about taking risks when you have been ready to give up on life. You think, ‘Well, it can’t possibly ever be as bad as that.’ I had just met Alex. We’d had three dates. I told her about the job and she had just been made redundant, so she came out with me for a summer of fun, and here we are all these years later. It was the best decision I ever made.”
Baker returned after two years and, in 2007, set up Time to Change and she and Alex decided to start a family using a sperm donor. However, Alex suffered numerous miscarriages, and at the beginning of last year the couple had all but given up on having a baby when they decided to take a holiday together to Cambodia. “It was a magical trip. We decided we’d do it before the final try for a baby. We didn’t think it was going to happen. The idea was, ‘We’ll have one last go, it won’t work, but it’s okay because we will go travelling and lalala.’”
When they returned, Baker found herself in agony – painkillers did not help. She was admitted to hospital where she had CAT scans and while she was in there Alex texted to tell her she was pregnant. “It was fantastic. We were sky-high. Then Alex came in to visit me in the afternoon and the consultant told us he thought it was cancer. I just kept saying: ‘No, no, it’s a ruptured fibroid.’ I was in denial.” When they removed the growth, they found it was a 1ft-long tumour weighing more than 8lbs: “It was heavier than most babies born.”
The tumour had strangled Baker’s bowel, which has now been resectioned. She was told that if they
had waited three days later, she would not be here. “The tumour was invading everything. I didn’t realise how ill I was. I needed a lot of blood transfusions.”
Baker has sarcoma, a form of cancer that affects tissues and is commonly found deep in the body, meaning that it is often diagnosed when it is has become too large to treat. “It’s a rare type of cancer and then, as a rare type of cancer, there are 70 sub-groups, and I am one of the sub-groups. So I have a rare, rare type of cancer.”
Baker couldn’t keep a grape down. She had multiple infections. For four days she was on life support. Within five weeks of surgery, she was told the cancer had returned. “I think that was probably the most devastating day of our lives. A couple of days before we had been told I was cancer-free, and now they were telling us how aggressive it was.”
Baker describes matter-of-factly the dichotomy that was thrown up as her wife advanced into her pregnancy while she became more ill. “It was bittersweet. At one point they thought I was brain-damaged, at another I got sepsis, and I just think, ‘Oh god, poor Alex, being heavily pregnant and going through all of this!’ She is such an amazing woman, she is so strong, stronger than I think any of us could have given her credit for. She was carrying our baby and she had to cope with all of this stress. She is one hell of a woman.”
By the time Baker had completed her chemotherapy, in September last year, Alex was having to go into hospital every two days for check-ups because she had polycystic ovary syndrome. But as soon as Baker began to physically pick up, the experiences of the previous six months “hit me like a ton of bricks, and then I became incredibly depressed and acutely anxious”.
Her mental health had taken almost as much of a battering as her physical health. “I was at the Royal Marsden Hospital and they were brilliant. They said, ‘You have been given a cancer diagnosis, you are going through a life-threatening condition, and that will have an effect on you psychologically.’” She had CBT and was put on antidepressants, and made a mental note to start campaigning for all cancer patients to be offered talking therapies.
On Oct 14 2016, Alex gave birth to their baby daughter Pip. Shortly after, Baker was awarded an OBE in the New Year Honours for services to mental health. Pip will turn one at the end of this week, and the family have celebrated with a trip to Florence. They live by the seaside in Kent and, as would befit a mental health programme, her employers allow her to work from home frequently. Baker knows she cannot predict the future – she has a terminal illness, after all – but as much as possible, she wants to work towards making it a better place for her daughter to grow up in.
“An awful lot has changed since I started working in mental health. There is still a mountain to climb but we are beyond the foothills now.” Baker thinks that, ironically, she focused on her mental health but ignored her physical health. “What I would say is that everybody has a body and soul, and you shouldn’t ignore either. Treat them both with equal grace and respect.” What would she say to anyone in a similar situation? “I would say, you don’t have to be a wonder woman. You don’t have to still be going to work with a terminal illness or any kind of illness.”
Baker is something of a wonder woman herself, though she is too modest to admit it. “What I would really say is that just being here… well, that is an achievement. Do not feel any pressure to do anything other than just be.”