Revelations

When do you tell people that you’ve been diagnosed with cancer? Who do you tell? What do you tell people? Is this all in your control?

Alt text: A selfie pose of a middle-aged white woman sitting in her wheelchair in the corner of a small, bricked-walled garden. She is wearing pink lip-gloss, a small silver nose-ring, pink tinted sunglasses in the shape of hearts, a small headpiece with a silver heart & silver diamante-effect band, a silver top & a cape covered with plastic, pink, iridescent discs. She has brown/blond/grey hair cut into a bob. She is smiling. Behind her are plants & flowers in hanging baskets, in pots & in raised flower beds. Her sunglasses, headband & cape glint in the sunlight.

Welcome to my 40th blog about being disabled & then being diagnosed with Breast Cancer! For April’s blog, I was going to write about my increasing difficulties with neuropathy in my hands (not great when you’re a wheelchair user), but since Princess Catherine of Wales (UK) was forced to announce to the world that she is undergoing preventative treatment for cancer, I decided to save that topic for another month.

When, who & what you tell people about your cancer diagnosis, if indeed you decide to tell them at all, is difficult for everyone. However, it comes with its own unique pressures when you’re already disabled & if you have a history of cancer in your family.

First of all I want to express how sad I am that Princess Catherine has received a cancer diagnosis & I wish her well with all of her treatment. I know she’s getting the best treatment & I acknowledge that it’ll be completely different for her because she doesn’t have to rely on the NHS like the majority of people in the UK. Yet despite all of her privileges in life, she’s a human being with emotions. Being diagnosed with cancer is terrifying & traumatic no matter who you are.
I felt really angry that the Princess was ‘outed’ by stupid, unkind & unfounded rumours circulated by so-called ‘commentators’ & ‘influencers’ (or idiots, as I like to call them) on social media. Then certain sections of the UK tabloid press picked up those rumours & amplified them. Speculation grew as a direct result of those acts of spreading rumours.

Just like every cancer patient, it was HER choice whether she wanted to tell people. Instead, she had to share her fear with the world on a Friday teatime, during a special televised address.

I listened to her whilst she tried to convey the difficult news as best she could. I watched her looking pale & shellshocked. I watched her try to reassure the public, often in the way that most cancer patients do when they’re telling their loved ones; we all try to put aside our own emotions so we can shield those around us.

The only bit of ‘schadenfreude’ for me was seeing all of the social media & tabloid press idiots looking totally idiotic. They were completely caught out, although I did see a lot of conspiracy theorists coming out with even more s**t & speculation after the televised address. These people don’t have any moral compass.

Anyway this whole horrible situation got me thinking about my own choices about when, who, how and what to tell those closest to me about my cancer diagnosis.

Sometimes telling people is out of our control. It became out of my control when I had to take an extended period of sickness absence. I’ve very rarely taken sick leave for longer than a week over my 30+ years career. However, when I commenced treatment, I started to look physically different; my skin developed a green/grey tinge, my hair started to thin & I wasn’t able to colour it because of active treatment. My eyes became dull & I had large black circles under them. My nails became ragged. I couldn’t follow sentences & plots on the tv. I became exhausted. I got terrible brain fog so I got dates & facts confused. My mobility changed. It became obvious that something was very wrong.

I realise that I had actually forgotten quite a lot about the period just after my cancer diagnosis. It’s probably down to shock. So my recollections of that time might be incorrect. Very few people I told in person or on the phone. It was much easier to tell people in a text or another kind of messaging.

I didn’t tell that many people in person because I knew that I wouldn’t have to manage their emotions as they crumbled in front of me. I know that sounds cruel, but you need to understand that when my mum died, I had to tell people on the phone or in person because there were no such things as mobiles or emails. The hardest thing for me to deal with was their own grieving. I was 16 years old. I had to support my family who were grieving. My sister was 10. I couldn’t even process my own grieving.

I made all the phone calls really quickly & so I’m told, I used a very matter of fact tone. I got criticised for that by a couple of friends. It took another couple of mutual friends to explain the obvious – that I was in total shock & not really equipped to deal with what had happened. Even though I knew deep down that my mum was really, really ill & that she was going to die, no one ever sat me or my sister down to prepare us for it. That’s not a criticism, that’s just how things were years ago. And it’s also a reflection of how my family members couldn’t process their own terrible & painful grief.

When my sister got diagnosed with cancer, I asked her if she wanted me to tell people & how she wanted me to tell people. She wanted me to be open & to keep it factual, so I set up little messaging groups etc which gave me (& her) some control. Some of the extended family were elected to update people as & when. That’s actually a good method because as a cancer patient, you get so tired during treatment.

Because this method of messaging had worked quite well, I adopted it when I was diagnosed. Both my sister & I were open with our families & we prepared our loved ones the best we could. We’d had that experience of being ‘left in the dark’ & it’s not a place that we wanted others to be in.

I told close family, my best, closest friends & my work colleagues. Then I elected a couple of friends to update others & they carried the responsibility selflessly. Most of them were the same friends who had supported me when my mum died all those years ago. With work colleagues, I elected a close friend to update them & brilliant – he made sure that he protected my partner & I throughout. All updates were empathetic but as factual as possible to protect mine & my partner’s dignity. I’m forever indebted to my lovely friends.
I never put anything on social media until I finished all of the active treatment. From the messages of love & respect that I received afterwards, I understand now that people were aware that “something” was going on. There’s no doubt that friends told ‘friends of friends’ & colleagues; that’s natural to me. Afterwards I told people that I didn’t mind that this had happened because it made managing my emotions easier. But what I don’t like to think about, & I don’t think this happened anyway, is if people were gossiping &/or speculating behind my back. I come from a small town where everyone knows everyone so I’m hyper-sensitive to gossip. Speculation & gossip are so degrading & detrimental to your wellbeing. It’s so unnecessary & it can do so much harm.

By keeping the updates factual, it gave me the space to manage the mind-bending s**t show that was coming my way. That’s important because you need all your mental & physical strength for you. In my case, I also wanted to shield my loving & loyal partner who faced everything beside me.

I think I’ve blogged about this before, but when you tell people, there’s always someone who says that friend/cousin/postman etc died of exactly what you’ve been diagnosed with. It happened to my mum & my sister too. When someone responded like that to me, it was a new Personal Care Assistant from an agency. I remember simply turning around to face her, looking her straight in the eye & responding “well, that’s not going to happen to me.” She went bright red & looked away from me. Gotcha, as they say! Honestly though, what f**kwit would respond in that way, especially someone from the caring profession! I haven’t got any sympathy for people who respond by saying that they knew so & so who died from the same type of cancer. They are stupid.

The other stupid people are those who say that you’ve brought on the cancer yourself & those that claim that your cancer can be cured by alternative herbal treatments/diets alone.

As a disabled person, I had the very strong suspicion that some people around me might be saying that I’d got cancer because I’d pushed my body too hard. Meaning that the stress of living in an impaired body had finally taken its toll; that I’d been pushing myself too hard & for too long. This isn’t an unfounded paranoia. I’ve had a couple of people in the caring profession who have said that I’ve made my impairment worse because I wasn’t living within the limitations of my body. I once asked an orthopedic surgeon if this could be true. He replied that it didn’t matter what I did or how I lived my life, because the muscles would still constrict around my joints anyway, but it would just take a longer period for my body to deteriorate. His conclusion was that I needed to live life to the full & on my terms. Despite this being excellent advice, my internalised ableism meant that I nearly didn’t tell anyone about my cancer diagnosis.

Newsflash: cancer is random in who it affects – it affects Royals like Princess Catherine & working class Essex girls like me. Most of the time, it doesn’t really matter what people do & how people live, they still get cancer.

No matter how I tell people, I try to be as supportive & kind to the other person. It is shocking to hear that someone you love is seriously ill. I quickly learnt what & how much to tell people. There’s only a handful of people that can handle being told the whole picture. This is down to a combination of reasons – fear, lack of knowledge, a tendency to speculate & a tendency to give an unsolicited opinion which you might not be (ever) ready to hear. At times I didn’t want to answer any in-depth questions. It was emotionally painful but it was also because I didn’t know the answers.

Finally I want to end with what I took away from Princess Catherine’s address to the Nation. Her speech was fantastic but it was the look in her eyes that resonated most with me. It said, “I’m going through stuff here, it’s enormous & I’m absolutely shattered. Please let me be with my family.” That’s the look that I recognise & probably every other cancer patient recognises too.

So be generous, be loving and be kind to your loved ones, or anyone, if they ever have to tell that they’ve been diagnosed with cancer.