21st July 2020

Sally’s story

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When Sally was diagnosed with lung cancer, her partner, Anne, was in hospital due to a long-term health condition. It was a difficult time, one made worse due to an error with her biopsy results which delayed her treatment by around three weeks. Since then however, things have settled down – even in the current climate! In fact, for Sally, the hardest part about having lung cancer in lockdown is not being able to play golf!

“It was Anne who got me into golf. I had played with my dad when I was younger, but he was not a serious player. He used to play with my grandfather, and I don’t think they had a set of clubs between them!

I remember we were having an extension put on our house. They started work on the first day of the school holidays – I was a headteacher – and I realised I couldn’t stand this for the next few weeks, so I headed out to the club and pretty soon I was hooked!

I’ve now been playing for 25 years. I love the challenge, the company, the scenery. It’s also great exercise. My passion for the game reunited my dad’s too and it became our shared interest for many years. He continued playing until he was 85!

I tended to play three or four times a week, even after I was diagnosed with lung cancer, so I’ve been missing it terribly, especially as I didn’t play much before lockdown either. Usually I play in any weather, but I felt really cold, colder than I ever had before, particularly my hands. I’m not sure if this was due to my diagnosis, or maybe a side effect of my treatment.

I’m fortunate, being on a targeted therapy, I haven’t had my treatment disrupted in anyway due to the coronavirus pandemic. I still have to go into hospital on occasion for routine check-ups and scans but my hospital has adapted very well.

I have experienced a few side effects. I am on targeted therapy after a biopsy revealed the EGFR+ mutation. I started on afatinib. I was on this for about a year, although, it was quite a bumpy start.

Two weeks into the treatment, my face and neck were red raw. I came off the treatment and it cleared up. Then, once I restarted the treatment, the skin on my hands started to flake. It wasn’t sore, just quite unsightly and there was concern about infections (and my golf grip!). Fortunately, steroids cleared it up and I only missed two weeks of golf!

Another side effect I experienced was with my hair. I didn’t lose my hair like you do with some chemotherapies, but it did get much thinner and I also feel like it got greyer quicker! I couldn’t tame it and, when I looked it the mirror, I didn’t recognise myself. I used to have a really thick head of hair, even my hairdresser would comment on how thick it was. Instead, a woman with ‘old lady hair’ was looking back at me. However, I am now on my second targeted therapy, osimertinib, and my hair is starting to thicken again.

I’m fortunate, being on a targeted therapy, I haven’t had my treatment disrupted in anyway due to the coronavirus pandemic. I still have to go into hospital on occasion for routine check-ups and scans buy my hospital has adapted very well. Some of my assessments are now done over the phone to cut down the time I need to be there, and there’s obviously less people there at the same time.

It was my lung cancer nurse who first told me about Roy Castle Lung Cancer Foundation. The charity was holding an information day nearby and she invited me to go along. It was very interesting to hear from all the different consultants about the types of treatment available. I was just about to start my treatment and so found Dr Hannah Lord, who spoke about targeted therapies, particularly valuable.

Whilst I was there, I also picked up some of Roy Castle Lung Cancer Foundation’s information booklets. I found its Living with Lung Cancer guide very useful. My sister, who came over from Australia when I was first diagnosed, also found their information helpful as she too adjusted to my diagnosis. The charity has been with me ever since.

At the start of lockdown, I got a phone call from Elizabeth who told me about their Keep in Touch support service. I thought it was a great idea and asked if she could call me once a fortnight.

It’s lovely to chat to Elizabeth. She is such a cheery person and we can all do with more of them in our lives! We don’t really talk about lung cancer but it’s reassuring to know someone is there if I need them, if I am having any difficulties or if I have any queries. Although, now life is starting to return to a sense of normality and I can start playing golf again, I might have to ask to change the day she calls; Wednesday is Lady’s Day at the club!”

Please note, names have been changed and stock photography used at the patient’s request.