Charlie Hainsworth was diagnosed with breast cancer in March 2017, aged 38. She’d gone to her GP after noticing a strange hardness to one of her breasts.
Within three weeks she was told that the cancer had spread to her bones and that it was incurable, something known as secondary breast cancer. Months of chemotherapy, a mastectomy and radiotherapy followed to maintain and prolong her life.
We had the privilege of knowing Charlie in the final year of her life and want to celebrate everything she was able to achieve in this time. We want to promote her ultimate wish to educate others on how to communicate with a person who has terminal cancer, right now. She wanted to call out the elephant in the room.
Determination to work
Charlie was a lawyer in the law firm Winckworth Sherwood LLP, where I support employees through my service Beyond EAP.
Winckworth Sherwood asked me to support Charlie in three ways:
- First, to help guide her emotionally towards acceptance of her diagnosis and the changes it would inevitably bring. These included the change to her career and professional life as a lawyer, which was deeply significant to her and a loss she found very hard to consider.
- Second, to support Charlie in her partial return to work. She was keen to work on her ‘good days’ and she needed help to manage that emotionally.
- Third, to help Charlie’s team adjust to her return to work.
Charlie’s main concerns on returning were the effect on her colleagues, her relationship with them and how they would communicate with her.
She wanted to be transparent. She wanted everybody to know EVERYTHING, rather than repeat the information over and over to her department of around 40 people.
So, it was our role to announce her news to her colleagues. We designed training to meet her main aims, which were to:
- educate them about how to communicate with her, knowing her diagnosis
- help them understand that she was the same person, just doing a different role
- reassure them it was therapeutic for her to be at work with them. She could cherish normality when she opened the office doors, rather than her crazy new world of doctors and hospitals
Finding and giving support
Charlie got involved with the secondary breast cancer charitySecondary 1st immediately after her diagnosis.
It was, she told me, a ‘lifeline’ where she could bond with many people with the same condition. She formed many friendships with women going through the same as her and she supported them through till their deaths.
And it gave her an opportunity to use her energy and determination to become an ambassador for Secondary 1st and talk wherever she could about her experience.
Charlie also started a FB page, ‘Cancer can’t steal my smile’ https://www.facebook.com/StillSmilingWithStageIVCancer/ which she used as a platform to tell everyone in unison about the realities of day-to-day life with secondary breast cancer. With good humoured honesty she shared the good times, and the bad.
In December 2017, Charlie captured an audience of hundreds at a carol service in St Paul’s Cathedral, as she told her story on behalf of the charity. Her words were met with a standing ovation: a moment she told me she would cherish as her family were in the audience. Many people came up to congratulate her on her speech.
Then in the early part of this year Charlie went to the House of Commons to listen to a debate on breast cancer treatment, spoke more about secondary breast cancer and got herself featured in ‘Now’ magazine.
Holidays and return
Her focus was on her quality of life and — along with her desire to return to work – it became vitally important for her to spend quality time with her family and friends.
She was able to travel on holidays; going to Krakow with her dad, Rome with her mum and even on a ‘girlie’ holiday in Lanzarote with her friends. This was all while taking constant medications, having days of sickness, nausea and feeling weak.
In March this year I explained to her department at Winckworth Sherwood exactly what was happening to Charlie. I shared her core message of transparency and completed a training session on how to connect and communicate not only with Charlie but with anyone in their lives facing terminal cancer, now or in the future.
Her ‘official’ return to work, albeit part-time and on her ‘good-days’ came after her holidays.
At that point she was having scans every month to see if the cancer was staying the same. The first was before one of her trips and she was elated by the result, which showed no change.
However, another monthly scan in Spring, quite soon after her return to work, gave her the devastating news that the cancer had again spread and now it was all about managing her condition and pain.
This summer Charlie went into St Christopher’s Hospice and in September was transferred to Guy’s hospital for pain management.
Charlie’s wish was to make her 40th birthday on the 24 September. I visited Charlie on 13 September, with a gift and card as an early celebration and said my goodbyes, knowing that this would be the last time I would see her.
Charlie did make her birthday and passed away on Saturday 29 September, aged 40.
My memories of Charlie?
- Her wish for people to be educated about secondary breast cancer
- Her mission to explain how to communicate with people who have terminal cancer.
- Her bravery at ‘sticking the finger up to cancer’.
- And how she went to hospital appointments in the most fabulous shoes. As she said to me: ‘Sandie, don’t save any clothes and shoes for best, as you may never be given that time’
The pinned post on her Facebook page explains why she wants to make each day count: ‘I am determined not to be forgotten!’. She won’t be: her determination to help colleagues understand how to handle terminal cancer means those life skills have been shared.
Ruth Barnes, a Partner at Winckworth Sherwood said: ‘We think of Charlie every day. She was an amazing woman and is greatly missed by colleagues and clients. I am very proud to have known her and the support that this firm currently gives Secondary1st in her memory.’
How you can support a colleague or employee with terminal cancer
- Learn about their illness from a reputable source, while remembering that everyone is different and will have different experiences.
- Ask them how their illness makes them feel and how it affects their daily life. You will be in a better position to offer help and support based on the information that they give you.
- Let them know that you are thinking of them. Sending them a letter, text or email can show them that you care.
- Be there for them when they want to vent or just talk about how they are feeling. Often all that they want is for people to listen and be understanding when they are not feeling themselves.
- Try not to treat them differently because of their illness — they do not want to be known as the sick person. The condition does not define who they are, and they are the same person underneath the illness.
What NOT to say to a person with terminal cancer
- ‘You look really well’ or ‘You don’t look sick’ People with chronic illness may not always look sick as many of the side effects of the treatments and illness are invisible, such as fatigue, pain and depression.
- ‘Have you lost / gained weight? You look great!’ Again, this may be meant as a compliment, but weight loss or gain can be a side effect of treatment and can often make them feel self-conscious and unhappy about the way they look.
- ‘I know how you feel’ or ‘I can relate to what you are going through’ Unless you have been through the same or similar illness you will not have experienced what they are going through.
- ‘When does your treatment finish?’ Chances are that they will be on continuous treatment or waiting for a new treatment plan to begin.
- ‘Will this current treatment cure you or make you feel better?’ There is no cure for secondary breast cancer or other terminal cancers. They can be controlled and maintained with treatment, but the reality is that patients will not get better over time.
- ‘It is all in the mind’ Positive thinking may help people deal with the reality of having terminal cancer, but it is not a cure for illness.
- ‘Have you tried eating different types of food or taking alternative medicines … I’ve heard they are very good for people with your illness’ Leave medical advice to the professionals.
- ‘I wish there was something I could do to take your pain away!’ If there was something that could be done, the trained medical team would have suggested it.
- ‘I wish I had the luxury of staying in bed or sleeping all day!’ This a necessity, not a luxury especially if they have just had their treatment.
What you could say instead:
- ‘Please help me to understand.’ Asking questions about the illness and how it affects them will give you a better understanding of what they are going through and how you can help them.
- ‘How can I help?’ Helping them with everyday tasks or even listening to them can show them that you care as often they will not ask for help themselves.
- ‘Can I visit, call, email or text?’ Having terminal cancer can be lonely and isolating. Staying in touch with them and calling or visiting can make them feel less lonely and show them that they are loved.
- Here’s a funny story. Laughing can make a person feel happy, so sharing a funny story with them or making them laugh can take their mind off what they are going through for a short time at least.
What your colleague with terminal cancer might want you to know (but are afraid to say)
- Let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in response to life and work events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off.
- Ask me ‘what’s up’ rather than ‘how do you feel’. Let’s talk about work and what’s been happening rather than focusing on my illness.
- Just listen. I’m doing my best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me.
(The above were adapted from https://www.facebook.com/CancerTalk)