While at a family gathering this weekend, my dear Uncle Jack was explaining my “illness” to a new friend, another elderly gentlemen, and I overheard him saying, “It’s just Lady Cancer.” His friend nodded as if he fully understood what “Lady Cancer” was and then they both looked at me - with a mixture of pity and of what I can only describe as casual dismissal.
I was, surprisinglyand instantly angered by his statement. But why? The pity I understood. Unwelcomed as it is, I get it a lot when people learn my story. The sense of it being perceived as unimportant and the very strong feeling of casual dismissal (triggered by the word “just?”) was something new to me, something more tangible and something very objectionable.
I wanted to approach them both and ask them what they meant by "Lady Cancer" and more so, what was meant by the look they threw me. Instead, I stepped away to examine why I suddenly and very strongly felt as I did and who or what exactly was the source of my anger. (I learned long ago to pause and evaluate and not let my emotional reaction flow freely from my mouth….)
Uncle Jack and I have a good relationship and I am sure he meant no harm. He is of a prior generation (and I’m no spring chicken); perhaps he was simply uncomfortable with words like Ovarian, Endometrial or even Gynecological. His new friend was also of similar age and perhaps sharing any more detail would be considered indelicate. I am OK with that, if that was all it was – but as I sat with it, I realized that that is NOT what it was.
It was not a struggle with the words needed to describe the female anatomy, it was not the topic of cancer and it was not that I was there in the room though not in the conversation when this was being discussed – it was more than manners. It felt as if they had lessened the impact of my cancer by calling it “just Lady Cancer” – as if somewhere between them, there was an understanding that “Lady Cancer” was not a serious form of cancer - that it was somehow more delicate, more fragile, less devastating, less frightening, or somehow less impactful. It was as if, because it happens to women it is somehow not to be taken as seriously as if it were any other kind of cancer.
I got angry again and wanted to rush back into the room and say, " D#@n Right it’s Lady Cancer – she is fierce, relentless, determined, clever, strong-willed and seemingly indefatigable. She is also strategic and stealthy as she builds her strength, bold when discovered and often, when defeated, she does not completely retreat but instead lays undetected – for months or even years until she has regained her strength, until she is ready to come back into the light. “Lady Cancer” is smart – so smart that she has evaded all efforts toward her elimination or her impact on a woman’s life, despite millions of dollars being spent toward a better treatment and/or cure. She persists – because she is Lady Cancer.
Knowing that I have “Lady Cancer,” Dear Uncle Jack, should scare you just as much as, if not more, than any other type of cancer. The detection of this cancer is often in late stages as there are no/few early symptoms or detectable signs. The treatment for this cancer is brutal – surgery followed by extensive and long chemotherapy. It leaves one scarred, weak and forever impacted. It scares you – not only at the time of diagnosis, but most every day thereafter. It takes much and continues to take from you for years, eating away at your well-being, threatening your future and recurring with alarming frequency. Despite all scientific, religious and human efforts, the death rate from this cancer is among the highest of female cancers and the world is making few impactful strides in the effort to extend life and eventually to cure the world of this disease. This “Lady Cancer” as you put it is deadly. She must be stopped."
Of course, I wanted to say, that but didn’t ... for a whole host of reasons including that I might be wrongly interpreting his comment. Had I started down that path however, I would have had to continue...
"Despite this “Lady Cancer” being such a vile, destructive, strong and persistent disease, Uncle Jack, please do not forget that I too am a Lady – and let it be known that I too am fierce, relentless, clever, strong-willed and seemingly indefatigable. I, too, am strategic and stealthy, bold and persistent, smart and resourceful…but unlike Ms. Cancer, I am not alone on this journey. I have the strength of others – so many others, male and female alike – in family, friendship, professional services and advocates and in those who walked before me, those who walk with me and those who will walk after me. Together, and with much effort and resolve, we can defeat Lady Cancer and one day we will." (And then I would have hit him up for a donation to the Cancer Center - LOL - how could he refuse then, right?)
I have forgiven Uncle Jack his use of words . Still, the feeling of dismissal lingers and I will share those feelings with him when next I see him (calmly!). That said, I hope that no one else ever feels dismissed, or lessened or not heard when it comes to Ovarian Cancer (and all other forms of female gynaecological cancers). And I hope that if you do, you are braver than I and address it directly. I know “this lady” will!
I do wonder whether people do assume that “ lady cancers” are now easily curable and therefore not such a serious health risk as they once were? There has been a lot of “cancer is not a death sentence “ media messages and “being a cancer survivor “ publicity particularly around breast cancer.
I know that some of my friends and family still struggle to understand what it means to be living with an incurable cancer.
Never ceases to amaze me how folk respond to our disease and experience. My sister frequently surprises me with her denial responses to wanting her to talk realistically "well people don't know how to talk to people with cancer". We're obviously a different beast to the 'uncancered' population. 🙄🙄 Xx
I was in a discussion with a group of ladies and my diagnosis of Ovarian Cancer came up. The assumption seemed to be that if I have had my ovaries removed that the cancer is cured. When I explained the extent to which my stage IV cancer had spread and how much I had been affected by both the surgery and side effects of treatment they were shocked. The shortening of my life expectancy and fears that I won’t be around for my family and especially my grandchildren is with me daily. My financial circumstances concern me too as no longer working and still with a mortgage to pay I worry how my husband will manage.
On the plus side I am looking ok despite my very grey hair, a large incisional hernia causing me problems with my clothes and neuropathy affecting my balance, anaemia and heart failure making me breathless and general aches and pains limiting my activity.
I continue to battle on with the ICON9 trial with the hope it will buy me a little more time. My ladies were rightly stunned and I hope they are at least more aware of this disease and it’s impact. On the other hand the men in my life rarely discuss it and I think they bury their heads like ostriches!
Brilliant post - a real 'primal scream' expression of how it is to have OC. But did Uncle Jack actually say 'it's just lady cancer'? Just? cos that's the word that got you going for sure. That 'just' implies several things - it's not important; it's just something that happens to women; it's not worth talking about; it's too difficult/embarrassing to talk about, oh I could go on and on. I get why he said 'lady cancer', being of the generation he is, but it's that 'just' that reduces it to the mundane, the not worth mentioning.
Having cancer at all has meant to me that people who know see my cancer first and I, the person, am somehow relegated, as if having cancer is the most notable thing about me. In some respects, I've come to recognise that actually, as it's been almost two years since my very late stage diagnosis, and the fact I refused chemo, people have moved on - some behave almost as if I should have died by now, I can feel the waters of everyone's else's lives closing around me, pushing me out, now that things like discussions of something that's happening next year isn't a conversation I'll be included in, by and large. I am relegated to an ante room of life, or the waiting room of death perhaps, or that's how it feels. It's not true of everyone I know, but it's an undercurrent I pick up on with many. If I haven't spoken to someone for, say, three months, and then I do, I pick up on their surprise that not only am I still here, but still functioning! Though to be honest, they're not the only ones who are surprised, I am too...
This year, I'm noticing a distinct lack of Christmas cards arriving - by now I've usually got at least a dozen, but this year, just two so far. I figure those I don't speak to that often probably think I'm either too ill to care or actually dead... not helped by the fact I haven't yet sent my own cards out though, to be fair. I don't mean to imply that people are being unkind, they're not at all, they're often very solicitous, and many times express to me their admiration over how 'brave' I'm being (brave my aunt fanny, like I've got a choice, these are the cards I've been dealt) ; but it's still different from how things were before cancer, or BC as I refer to it😊
I think the worst thing is that I fully understand all these reactions people are having, which means I'm unable to give in to the child part of me and rant and rave about it, rather like you! Before I had OC, I had not the least idea that there were 30 different varieties of this disease. All I knew about OC was that it was one of the ones you'd be unlikely to beat, along with pancreatic and often oesophogeal cancers, and that the treatments for these diseases were brutal. If the subject of cancer ever came up, I always used to say I feared the treatment as much if not more than the disease... And actually, I didn't want to know any more than I did, didn't want to look too closely, hoped i wouldn't get these things; they weren't happening to me, and I didn't want to know the details unless they did... I was too busy getting on with life. And that's what everyone else without cancer is doing. When they come across or know someone with these problems, it makes it much more real, and understandably, many people really don't want to be that close to it or to have to acknowledge it properly. Not to mention the reminder it gives to other people of their own mortality, as well as one's own. But it does mean, for us, that we are in some sense dismissed.
I don't think Uncle Jack was not acknowledging it properly, but if he'd left out that infuriating 'just', you may not have had such a strong emotional reaction. Well done for not letting loose at the time though... there was no point in upsetting and alienating someone over it, but it's good that you let it all out here instead...
Excellent post and so very well said. Many people haven’t heard of our cancer, I certainly hadn’t before diagnosis, and there is commonly the idea that once it’s been ‘cut out’ that’s all there is to it.
I have a mother in law who regularly uses me as an example of how brave we can all be (true) but then tells complete strangers and/or their nearest and dearest with a cancer diagnosis, about me and says that if I can beat it they also can, (this despite me asking her repeatedly not to do so as I really don’t believe it helps anybody) she forgets the trauma of diagnosis, surgery and chemo and the long term effects of it all and she regularly dismisses the possibility of me recurring because of where I currently am. People aren’t deliberately dismissive of our illness, they just don’t understand it but lady’s problems comments really don’t help us do they? I totally understand why you felt so upset, I’ve been there more than once and am sure many others have and we will continue to be upset by simple ill advised comments.
I think if you haven’t personally been touched by cancer you cannot understand the physical or psychological effect it has on the patient long term. It’s a dichotomy really in that it’s not ignorance but yet really it is.
Uncle Jack will understand I’m sure in time and hopefully you can have an open discussion with him.
Keep strong lovely, we all walk this pathway with you ❤️Xx Jane
As the others have said your diatribe is brilliant and poetic and should be published. During my 8 month remission I found it really frustrating that everyone assumed I was cured. I would try to tell them it would probably come back but they would dismiss the idea-tell me to be positive. So I have only told my very closest friends and family about the recurrence. I tell everyone else I am fine and they don’t see me during my week in bed. I just don’t want to face ignorant comments.
I've got to say, you couldn't have hit the nail right on the head any better. You are very inspirational and a great writer. You've got this, I've got this, they've got this, and those who walk the footpaths behind us will get this too. Bravo!
We are strong, persistent, indestructible and relentless..we have to be, mainly because men couldn't handle it. Have you seen a man deal with the flu? You'd think he was delivering a baby.. lol
Hello your post is so eloquent and as others have said you articulate so well feelings we all share.
I met a lovely new GP yesterday to whom I tried to explain the conundrum cancer presents us with. We want to live our good days to the full, not let the dread of recurrence consume us but sadly need to be on our guard ..... just in case.
At the same time we have to manage the misconceptions and expectations of family and friends. I put such energy into trying to protect my relatives from stark realities and I don’t know why? Maybe I am complicit because it’s easier.
Sadly It is only on this forum that I feel I can be truly honest, this is the one place I know people understand and I am grateful for their honesty and openness .
When I read your post my first reaction was Wow! This lovely lady is putting into perfect words what all of us want to say. You have echoed my thoughts exactly. The only thing is I could never put it so perfectly. This is exactly why OC lags behind in how it's perceived by the general public and by many of the medical profession ( mostly male) !
I really think this should be published to shock people into our reality. Of course poor Uncle Jack meant no harm and maybe you might want to spare him . On the other hand he could well become your biggest advocate.
We have all been there to a certain degree. My favourite is a neighbour who told me she knew a lady with my disease but she had died ! Guaranteed to cheer me up !
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