Yesterday (1 June) was National Cancer Survivors Day which serves to improve the lives of cancer survivors. To mark it, we spoke to Rachel Westwood, Associate Chief Pharmacist, Northampton General Hospital NHS Trust, to raise awareness of the less talked about ongoing issues that people working with cancer face.
Rachel feels strongly about talking openly about her experiences of breast cancer in order that others, and the workplace, can learn from them. She’s presented several times to colleagues about going from ‘pharmacist to patient’ and at conferences such as the UK Clinical Pharmacy Congress (which she did in her first week back to work after treatment!).
We spoke to her to find out more about how the experience of colleagues working with cancer, and general understanding of the journey, could be improved…
You’ve talked very openly about your experiences of having breast cancer, while being treated at your place of work. How do you feel about that decision now, to be so open?
Oh, completely the right one. I’ve always been that person who wears my heart on my sleeve.
But it’s also about being honest – if people don’t know, then they make assumptions.
Did you feel that extra pressure as a line manager not to fall apart?
A bit. That’s why after our usual Monday morning catch up I decided to address the elephant in the room head on. I said:
“I know you all know my news. Thank you for sending messages. I just want you to know about this because it’s going to be rubbish for me and I know you will support me and step up when needed . Some of you are going to have to really step up and we will make arrangements for this, but it will all work out.”
I wanted to get plans in place, so I knew that they would be supported and things would carry on. And I wanted to make clear that I wasn’t disappearing off the face of the planet. They would still be able to talk to me at various times.
What was the most challenging part of being a line manager and having cancer treatment?
The fact that sometimes I really did want to get back involved with work but, because of my senior position, it was really difficult to just dip in and out. If I did, then people would think ‘oh, you’re back’ and then work would rollercoaster upward and I’d have to pull back and say things like ‘oh, actually this week I’ve got chemo, so I can’t do that’.
What could workplaces improve about how they handle employees experiencing cancer?
I think there could be more recognition that a person dealing with cancer might still really want to be involved in their work during treatment.
In the end, the way we made it work was that if there was something strategic that my colleagues were working on, that they knew I’d be keen to be a part of, they would drop me a message. They’d say something manageable like: “we are doing this, on this day, would you like to dial in?”
What were the biggest challenges in doing a phased return to work after your operations, particularly considering your conscientiousness and seniority?
It was very difficult to only work three hours today, then walk away. I probably overworked and felt wrecked at several points.
I did have Occupational Health appointments, but their advice was suitably vague.
What would have been more helpful from OH?
I guess making clearer suggestions about the phased return and perhaps being more prescriptive so I felt I could say ‘right, I’m going home now and I’m not coming in tomorrow because I worked yesterday’, for example. So, giving me limits on my work.
What would you like others to understand better about going through cancer while also working?
Cancer treatment is like a full time job itself! There’s so many appointments, scans, operations, etc! Then after the operations you’re in pain so you don’t tend to sleep well, and you’re worrying, which affects how you function during the day.
The media often focuses now on the ‘ringing of the bell’ when people finish treatment. But sometimes there isn’t a great understanding of the ongoing challenge people face living with cancer on an ongoing basis. Do you find that?
Absolutely. It’s a very weird concept. I rang the bell after four weeks of radiotherapy. But I hadn’t started having the full side effects, like the sores or extreme exhaustion. I also knew I was going to have to have oral chemotherapy for two years, as well as hormone blockers and infusions to stop the cancer going into my bones. So it wasn’t the end at all.
And the hormonal treatment also interfered with your menopause treatment, too?
Yes. The hormone blockers were the worst. I had gone through the menopause already and was on HRT. But, because my cancer was an estrogen receptor positive for estrogen and progesterone, any hormones I was taking were helping it grow.
That doesn’t mean that the HRT caused the cancer, but it did mean it wasn’t helping me. That was a double whammy because I had to stop the HRT, which had been making me feel amazing, and had to go back to having menopausal symptoms, like hot sweats and joint pain, as well as cancer. That was really hard. Thankfully, that’s calmed down a lot now.
Given cancer patients still have to endure many side effects after ringing the bell, do you think we need to talk about these more?
Yes, definitely. I’m in a workplace that really understands the cancer journey, but a lot of workplaces don’t have that knowledge.
What about the worry of recurrence – what would you like others to understand better about that?
At first my worry was ridiculous. Whenever I had a symptom, like a cough, I’d think: “Oh my god, is it in my lungs?” I felt sick all the time. My mind ran riot. It doesn’t happen so much now.
But the worry is always there. So it wasn’t helpful when a colleague said: “Oh, but you don’t worry about that, do you?” This again, comes back to making assumptions, which I don’t think you should ever do.
What’s your biggest piece of advice for people talking to a colleague working with cancer?
I’m going to say it again! The biggest one for me is: don’t make assumptions.
Everyone is in an individual situation so you need to have that conversation about what each person wants. And you also have to be prepared for that to change during the different phases of their treatment, too.
Being clear and structured in the way you speak is also really important. Not just when speaking about cancer, but in general.
The whole experience of being on the other side of communication was really interesting to me. It made me realise that sometimes when I talk to my team, especially my juniors, I can get a bit excited and want to go off on tangents. But now I really try to keep that flow and structure and plan conversations more.
