“You look so well”

[MavisTheMonkey]

I have stage 4 bowel cancer with a genetic mutation that makes it especially aggressive. Pre diagnosis I had a lot of stomach issues for 3 months and since diagnosis I have had problem after problem with
the latest being sepsis, resulting in a major emergency surgery and a four week stay in hospital.

Since coming home from hospital I’ve been in constant pain and discomfort. I have no appetite and I’m so tired all of the time. So all of this is context that I’m in a pretty shitty place. All of my family and close friends are fully aware of all the above.

What is driving me MAD is that due to all of my cancer related issues I’ve lost a lot of weight in the past six months (I’ve gone from a size 16 to a 10-12) and people keep telling me constantly how well or
how great I look. These are people who are aware of everything and maybe they’re trying to be nice but it
just gives me the rage. It’s not healthy weight loss, it’s the cancer eating away at me but to them it seems as long as I look good I must be doing well.

Anyway I’m not sure what I want from this post other
than to vent, but any advice on how to deal with this would be appreciated.

I hear you.

Stage 4 breast cancer here and a sarcoma cancer which is killing me day by day and putting me in pain that I wouldn’t wish on my worst enemy.

I really think that even our nearest and dearest, don’t know what to say, in fear of saying the wrong thing. But surely they know you are living with an aggressive cancer and it is this which is what is causing the weight loss? I am not surprised you have the rage. I think maybe you need to have a few stern words with these family and friends. Tell them that cancer is aggressive and they need to understand that your weight loss, sadly isn’t a healthy weight loss.

I get told I “ look well” and it gives me huge rage! I feel like shit and my pain isn’t well managed. I’m terrified of what’s to come, too.

I’m sorry you are going through this, really I am.

Solidarity x

I am so sorry to both of you. The thing is, people don't know what else to say. I know I've said it to people, adding that I know its an awful cliche, but it's never about weight, its admiration for the fact that they are up and about and going about their life. It isn't meant to diminish what they are going through.

It’s because of the social perception of what someone with cancer looks like. With the exception of the scars and reconstructive surgery I’ve had to have (to my head, so very visible, I have a bald patch), I look great. I’m 2 years in to treatment with another 18 months to go before we pause. I feel like crap some days, but other days, I feel better than I did pre-cancer. I’ve gone to lots of cancer support groups and I’d say at least half the people I’ve met there, look great too. You’d never guess they had stage 4 cancer.

If someone thinks I look well, I now take it as a compliment (there have been times I definitely did not look well!), but I also give them some grace because I’ve met lots of people with cancer and had exactly the same reaction. It’s because culturally cancer = bald and dying to us. We don’t appreciate that you can keep your hair and look quite perky and still run half marathons and hike 10 miles (I did on Friday) and still have incurable cancer.

I got exactly the same thing. I conclude that for some astonishingly dimwitted people, being thin is a good look, regardless of whether you arrive at it via a personal trainer, weightloss drugs or cancer.

Objectively, I didn't look well -- I looked pale, nauseated and very thin. But apparently thin rules.

I have stage 4 leiomyosarcoma and have chemo every three weeks, if one more person says to me “but you don’t look sick” I’m going to scream.

I said this to a dear friend years ago and have felt dreadful about it ever since...except...he wasn't just looking ok, he looked wonderful and had actually gained a little weight. This was because at the time he was on the Bristol Cancer Centre regime and it really suited him, and kicked his Stage 4 prognosis into the long grass for many, many years, for which we were all grateful.

So if we say it, it's sometimes because we do actually mean it - it's not that we are insensitive or unaware that you are going through hell, it's just because actually you may look well, compared to how you usually do, or less happily, how we expect you to look.

By contrast, the phrase that really makes me cringe is "you're being so brave"...like there's any other bloody option.

So please forgive us when we say stupid things, we're struggling because we love you, we're not struggling as much as you, clearly, but at that moment we're doing the best we can in difficult circumstances.

You are right. I’m sorry if I was a bit harsh/ stern/ rude in my response. I forget this is a public forum! Sometimes when in the thick of our mortality and pain.m, it’s hard to think/ see things clearly and objectively. I’m pleased your friend kicked stage4 into touch for a long time 😊

it's fine dear @Enigma54 no need to apologise you are allowed to be as rude as you like when you're going through what you're going through, of course it's difficult to be on good and polite form faced with such a bloody awful disease!

Yep my friend did really well, and I wish you every bit of his fortitude and strength xxx

I’m so very sorry to hear this and it must be maddening.
Unfortunately most people won’t realise the impact cancer has on weight and as a matter of plain fact, people look better at size 12 than at size 16. They just don’t realise the sad reasons behind this and how this is not desirable weight loss.

It is tremendously upsetting to see an extremely thin end-stage cancer patient who you no longer recognise, so there will be a time when they feel very sad about this.

@afloozie Thankyou. I’m so glad your friend did so well; it’s very reassuring that it can be done, even at S4! X

They don’t, though. Not if they’re thinner because they’re going through chemotherapy and are permanently nauseated.