Rochelle Silverstein lives in south Manchester with her boyfriend and works as Head of Commercial at a property developer. In the summer of 2020 – as the pandemic raged on – she was told the unthinkable. Age 30, she had stage 4 breast cancer, which had metastasized, having spread to her lungs. This World Cancer Day, she shares her story.
Please note that the precise rules around Covid-19 safety restrictions in NHS hospitals will differ from trust to trust. Speak to your nurse or doctor about what you can expect, at yours.
When you hear 'Do you have anyone with you?' as you step into a small, disinfected-scented hospital room to hear the results of recent scans, you know it’s not going to be good news.
That late summer day, as the outside world sank pints in groups of six in pub gardens, I found out that the cancer in my left breast had spread into my lungs. Rather than having aggressive, but likely treatable, triple-negative breast cancer, I had stage 4: the point at which words like 'incurable,' start being thrown around. On paper, at least, this means that there is a limit to my life that's very different from a typical expectancy.
I did have someone with me, waiting in the car park – my boyfriend Craig. But, thanks to COVID-19 safety restrictions, he hadn't been allowed to come into the room with me, initially. Learning that you have a mortality-confronting disease is incredibly hard. Doing it amid a global health pandemic is a whole other level of complexity.
I found the lump in June by accident whilst checking that the dress I was wearing wasn’t too revealing, sitting in Craig's parent's garden. As soon as I felt it I knew it wasn't right. I regretfully never examined my boobs regularly. I am quite aware of what's ‘normal' for me and would check on an adhoc basis in the shower, but I can’t stress enough how important it is to get to know your normal and check once a month and as thoroughly as possible!
After a telephone GP referral, it was a few weeks before I was seen by the breast clinic. Some tissue was taken for a biopsy, which I waited two weeks for the results for – only to find out that it hadn’t been performed, properly. This whole time my anxiety was building, and, when I heard that it was 90% certain that the lump was cancerous, I wasn't really shocked. It took another four weeks of knowing it was extremely likely that it was cancer, but not confirmed, and without having a plan. That limbo land and inaction was horrific.
Eventually, it was confirmed, I had grade three triple negative breast cancer – the most aggressive type, with the fewest treatment options. I was not given a stage, at this point. (For the uninitiated, this grading system, from one to three, is used to describe the appearance of the cancerous cells. The staging system, from one to four, refers to the size of the tumour and how far it has spread from the initial site.)
I was told by my doctor that they did not know the precise extent of how far the tumour had travelled, hence the lack of stage, but that they didn't think it had spread from the breast into other areas. Spread, as anyone who has been through cancer treatment knows, is the point at which making a full recovery becomes very unlikely, although treatment might help to shrink or control the disease. The idea was that I would have chemotherapy to shrink the tumour, then surgery to remove what was left: a standard approach to treating breast cancer.
I wasn't comfortable with that, though. I could swear that I could feel the lump growing and wanted surgery, fast. I insisted on going back in to be examined again and the doctor agreed it had grown in as little as a week. I had a single mastectomy two days later, as the doctors wanted me to recover as quickly as possible, though I wanted a double. This was because I thought it was likely I carry the BRCA gene, which increases your risk of developing breast cancer young, and I didn’t want to take any chances (my dad is Ashkenazi Jewish and, in that community, one in 40 women has the gene.) Turns out, however, that I don’t.
My left breast was cleared and I did recover quickly. I felt good about that, like I was healing well and, like in the words of all my friends, 'I got this'. Next came a CT scan, pre-chemo, to check that it hadn't spread. I felt nervous, as you would be, but I didn't truly believe that it would be anywhere else in my body... I’d had enough bad luck. I was wrong.
That late summer's day, as we all sat there awkwardly in masks, I was told that the cancer had worked its way into my lungs and I was given my new, stage 4 diagnosis. In that moment, there's shock and absolute disbelief. Strangely, I was calm; it was the people around me who seemed more obviously distressed. The next few days were a blur of calls to loved ones, waves of feeling overwhelmed and moments of strength. I hardly ate a thing for weeks as my best friend Chloe and I threw ourselves into research and calls to doctors, searching for treatments and positive stories from people who had been in my position – I felt that there had been missteps in my diagnosis, with delays, and I couldn’t afford for there to be anymore.
When you get a diagnosis that means that your time on this planet could be limited, your instinct is to fill every day that you're not sick from treatment with fun experiences: Book a flight and visit somewhere you've never been; eat in your favourite restaurants with your favourite people. Right now, that's not possible which is frustrating, but I like to put my energy into planning these things for the future, and trying to enjoy the every day. Of course we don't know when we are going to be ‘back to normality’ or even what that could look like.
That was August. At the end of September, I began chemo. Not being allowed to have someone with me, for weekly treatment, was and is hard. There's no one to distract or entertain you. [Ed's note: in non-pandemic times, many hospital trusts allow you to take someone with you for chemo, though the exact rules can differ, from clinic to clinic.]
Now, I've normalised it, by turning it into productive time – I'll take a 'to-do list' in with me, chat to the nurses and make some work calls – but I see older and more vulnerable people having their treatment alone and feel so heartbroken. It was especially frustrating in that early autumn time, when groups of six were meeting in pub gardens, but people going through cancer treatment couldn't have one person with them in a regulated environment.
There's no date to work towards when this might be changed – I am on long term treatment and I am really keen to know when someone will be with me. It would be good if there was a way to figure out some sort of rota system, so that you can have someone with you every few times you have treatment. I am also adamant that no one should have to hear news about their own mortality on their own.
In practice, though, you have to get on with it. Away from the hospital, the pandemic made telling people bad news a lot harder. A phone call call doesn't compare. It got to a point where I had to appoint my best friend to update people, because I could not bring myself to have another phone call about it from my sofa.
I really felt this practical pressure, too. When you get a diagnosis like that, you know that, sometime soon, you are going to go through times of being extremely tired and more dependent than you’re used to, thanks to the chemo. Because I can't have people over to help with cleaning or cooking, that can often all fall to my boyfriend, which is tough during lockdown: There is no escaping for a quick beer to de-compress!
I am also super lucky in the fact that my treatment itself hasn’t been affected by Covid, but I'm acutely aware that for other people it has. Some people have had their treatment and surgeries pushed back, which is just terrifying.
Alongside the emotional support I have from my amazing friends and family, practical things are a huge huge help. When you feel really sick you don't tend to want to cook, for example, and people saying 'I've sent you a food delivery box' or 'I've left some soup on your doorstep' is so amazing. I've also had friends deliver me healthy juices to help with recovery, cooked me lovely dinners and even walked the dog for me. I'm pretty active now, but there have been points in my treatment where I've been highly immunosuppressed or unwell so going to the supermarket wasn’t an option. People offering to do your shopping for you, in those times, is beyond helpful.
My advice to someone going through a cancer diagnosis is to advocate for yourself. You are often told what's happening to you and what treatment is happening next and it can feel out of your control, but do your own research, ask questions and understand as best you can what your options are. If something does not feel right to you, push for change. You know your body more than anyone. Accepting the diagnosis is one thing, but try not to focus on the prognosis. You can always find hope.
It's a weird thing to say, but in some ways, and now that I am back down to earth from the 'stage 4' shock, I feel happier than I did before. A diagnosis like this changes your whole perspective. I’ve let go of unnecessary stress and negativity and appreciate every small thing in my life, from the first sip of my morning coffee, to the smell of the air out on a walk with the dog. It’s a privilege to live in the present moment. For now, I try to focus less on what I can’t do as a result of the pandemic or chemo and on what I can do and enjoy.
A group of Rochelle's friends are taking up the David Goggins challenge, in which they will run 4 miles, every 4 hours for 48hrs, in March, to raise funds for research into triple-negative breast cancer and for Rochelle's care. You can donate, here. And follow the team @jogoncancer
Resources for if you need to talk about cancer
If you have been affected by cancer and need some help, try the resources below.
Contact the Macmillan helpline on 0808 239 06 25. (7 days a week, 8am-8pm.)
Check out the Macmillan COVID hub, here
Speak to a nurse about cancer treatment on the Cancer Research helpline: 0808 800 4040
If you have or have had cancer and want to join a support group, Cancer Support UK run these
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