‘I’m a life-loving mum-of-two with incurable breast most cancers and I need to die on my phrases’

A terminally ill mum-of-two has opened up about why it is only right for her to die on her own terms as the long-awaited Assisted Dying Bill has been put before MPs.

Helen Skelton, 56, lives with incurable breast cancer and knows that when the time comes, she wants autonomy over how she will spend her final days. With an allergy to morphine, she fears being in severe pain at the end of her life, in a way that could further traumatise her grieving loved ones.

Psychotherapist Helen, from Brighton, was first diagnosed ‘straight away’ with stage four breast cancer in 2020 and was told she had around three to five years to live. Four years after her devastating prognosis, Helen, whose adult children are aged 23 and 24, is still working full-time and is ‘really living’ her ‘brilliant’ life.

She’s trying to live life to the fullest while she still can, however death remains a constant presence, and one she’s consciously chosen not to ignore. Despite describing herself as ‘life-loving’ and keeping herself busy, she and her family continuously have her diagnosis ‘hanging over their heads’, and her oncologist has warned that it’s ‘unlikely she’ll make old age’.

In a chat with the Mirror, Helen shared: “Medical advancement means that people don’t really know how long these drugs can keep you alive for. So I feel like I’m part of a new generation of people who are living with death but living very well. Kind of acknowledging that we all going to die early.”

Even before her diagnosis, Helen had always supported assisted dying, while acknowledging that society needs ‘to be incredibly careful about it’ and ensure that ‘safeguards for other vulnerable people are enshrined’. However, her own cancer journey has brought home the realities of the debate in a very personal way.

Helen shared: “I don’t support it in a cavalier way, however, I absolutely believe that there must be choice for people at the end of their life. I don’t feel it’s right that we only have one way, when that one way may not be suitable for some people. […]

“I am allergic to morphine. So I know that pain relief will be limited for me at the end. And I think it’s important that I have that right. For me, it’s a very different thing from assisted suicide. It’s not that I’m going to want to die. I am going to know that I am dying and I want to have some agency over my death.”

Although Helen can remember seeing her father-in-law dying relatively peacefully in a hospice some 25 years ago, she knows from experience that this isn’t necessarily the case for all cancer patients. Part of now being ‘in the cancer world‘ means Helen now witnesses ‘a lot of deaths’, including those of people she’s gotten to know.

Sadly, she has known individuals ‘who’ve had much more traumatic last days where the pain hasn’t been able to be managed’. As a therapist, Helen is also extremely mindful of how trauma can affect people’s lives, and wants to protect her family as best she can.

Helen, who has already spoken with her loved ones about her thoughts on assisted dying, continued: “My family are going to have to bear the grief of my death. But I would like to protect them from the ongoing trauma of seeing me die in potentially uncontrolled pain.”

Helen was friends with Paola Marra, who died at the assisted dying clinic, Dignitas, back in March after being diagnosed with incurable bowel cancer. In videos shared shortly before she travelled to Switzerland, Paola, who was just 53 when she died, called upon the government to change laws surrounding assisted dying.

In a final video, Paola, ex-wife of Blur drummer Dave Rowntree, said: “When you watch this, I will be dead. I’m choosing to seek assisted dying because I refuse to let a terminal illness dictate the terms of my existence.

“The pain and suffering can become unbearable. It’s a slow erosion of dignity, the loss of independence, the stripping away of everything that makes life worth living. Assisted dying is not about giving up. In fact, it’s about reclaiming control. It’s not about death. It’s about dignity.”

Towards the end of her life, Paola, who’d lived with cancer for seven years, was ‘in pain every day’, and couldn’t even seek relief through pain medication, due to her various allergies. Paola chose not to take anybody with her during her final journey to Switzerland, fearing current UK laws that can result in prosecution.

Reflecting on Paola’s death, Helen remarked that it was ‘terribly sad that she had to die alone’, adding: “I’m sure she would have preferred not to have to go to Switzerland for it.” She continued: “She was very, very aware of her privilege really of going to Switzerland because she could afford it when many people don’t have that choice.”

Helen believes that having the choice to die close to home could help those left behind with their ‘grieving process’. She asserted: “This is happening anyway. People are taking their own lives without their family’s knowledge because they are in such distress and such pain towards the end of their life. And it’s an incredibly cruel end because it’s not allowing families to manage this together and have loving and open conversations and, you know, really create surfaces and processes that can be supportive to everybody.”

Those on the other side of the assisted dying debate believe the focus should instead be on making improvements to palliative care. However, Helen has pointed to evidence that would suggest palliative care services have actually improved in places such as Oregon and Australia, after the introduction of assisted dying.

Helen said: “There’s been no evidence that palliative care services have been ignored or reduced, and actually there’s evidence that they’ve received more funding and they’ve improved. So that feels really important to take into account. I think what it does is bring more conversation around death.

“Once there are more options, people are addressing death in all sorts of different ways and having the conversation about it much more openly, which is really important. And I think that’s going to improve services around death generally. I’m very interested in grief and dying and bereavement, and I think we’re not great at addressing it in this country. And generally more open conversation, I’m convinced, will improve processes and services for everybody.”

As of today (Tuesday, November 12) new legislation, said to have the strictest safeguards anywhere in the world, will be put before MPs. If passed, terminally ill people with less than six months to live will be given the right to choose to end their lives.

Two doctors must be satisfied a person is eligible, while High Court judge must hear each application. Processes will also be put in place to ensure patients can change their minds. Patients will have to administer the fatal dose themselves, as it will still be illegal for anyone other individuals – including doctors – to give it to them.

MPs will get their first chance to vote on the legislation on November 29. If it receives backing, the Bill will then undergo extensive scrutiny in the Commons and the Lords, during which time amendments may be made and voted on.

For more information or support about cancer, you can contact Macmillan Cancer Support or you can call 020 7940 1760 for advice.

If you’re struggling and need to talk, the Samaritans operate a free helpline open 24/7 on 116 123. Alternatively, you can email jo@samaritans.org or visit their site to find your local branch

Do you have a story to share? Email me at julia.banim@reachplc.com