People who don't understand what secondary cancer is

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I spent last weekend at a festival where I met up with many people I hadn't seen for a year, and spent a lot of time telling them what was wrong, and how I was coping etc., which in itself was very tiring. I am amazed at how many people don't understand secondary cancer. Virtually everyone said 'you look great', and 'you got through it last time so you will be fine'. I hope I have several months, or with luck a few years, but it is always at the back of my mind that I may not. I try to be positive but the occasional dark thought creeps in. Am I alone in this? I am hopefully coming towards the end of weekly paclitaxel, with my 12th one on Friday, and then a possible 4 more to follow if I can tolerate it. The oncologist said we would stop if my feet get so bad I can't walk properly, or if I can't function well. He actually said if I can't cook or clean! We will see how I get on with no 13.

  • I think everyone has some dark days. Hope all is well on Friday. Well done for keeping going through your chemo, amazing you managed a festival so far into treatment. I have my first follow up scan since diagnosis on Thursday. Not anxious yet because feedback appointment isn’t until end of September but that suits me as I am off to centreparcs with the whole family mid September. My grandson loves it so there.

  • I was actually scared of going away because I didn't know how I would cope with getting about, but I had a two week break from treatement so wasn't completely full of drugs. I definitely had to pace myself. Hope you enjoy Centreparks and the weather is kind to you. 

  • If you cant "cook or clean"!!! He seriously needs to update his views on what constitutes quality of life! Like going to a Festival.....I have also found it hard to explain to people what secondary breast cancer means, I used to get annoyed about their ignorance/insensitivity but now I think cancer is a triggering subject for many people and if they choose to deflect the information you are giving them rather than process it, I wont waste my energy trying to put them right. It doesn't help that people use different terms (metastatic, secondary, advanced, stage 4)  to refer to the same thing. Have you seen this website, it might help to ask your friends to look at it?  Home - MET UP UK - #BusyLivingWithMets  I hope your next treatment goes OK and that you can go to some more festivals, don't worry about the cleaning!! 

  • I’m two weeks behind so hope you don’t mind me jumping in.

    Such a great question and very useful feedback, which I’m using personally.

    Other than my husband my family, work and friends don’t seem to get it and in frustration, I’ve given up trying to explain it to them.

    that advice rings true, cancer is triggering and if I was in their shoes I’d probably do the same. 

  • I agree lots of people don't know what secondary cancer is. To be fair I didn't know much before I knew I was ill. 

    I have a social media group on an app that sends out encrypted messages to everyone in the group. I find it helpful for updating my entourage and it helps shoulder some of the load of the work of telling, which is exhausting. Even so comments some dear friends make can be very wide of the mark. 

    I had no full diagnosis of primary cancer before my secondaries were discovered. So I didn't have any of the experiences of ' just' having a primary cancer that people may be remembering you going through. But I am learning that I have to spell out the nature of my metastatic disease in detail. Even my partner today thought my liver mets had gone away. You have to be a bit of a science teacher to your friends, I think,and only when you feel ok to do so. People think cancer is cancer is cancer. They don't imagine that I'd give my eye teeth now to have certain cancer diagnoses.

    My final comment is that there is sometimes the idea that being positive is the virtuous things to do. I say, knickers to that....being positive is but one strategy among many, including negativity and escapism which now and again I think we're all entitled to.

  • I'm with you on the cooking and cleaning comment. BOR -RING!

    I wished when I got similar comments for medics they had asked, can you still use your chainsaw? That would have been more appropriate in my case.

    Don't annoy the woman with the chainsaw....

  • The cook or clean comment from the OP’s oncologist is utterly astonishing and borderline mysogonistic, albeit I love cooking and would be devastated if I couldn’t wield a sharp knife safely. In some ways I think it’s easier that many fringe people in my life don’t understand secondary cancer as it avoids a lot of uncomfortable (for them) conversations. I am currently well and hoping it stays that way, trying to translate incurable into chronic until such time as it can’t be treated. As for all the positivity crap, I am right there with you on that one. If only “being strong” and “standing up to my cancer” could actually frighten it away. 

  • It is not borderline, iit is mysogynistic. Well,they wouldn't say it to a bloke, would they? And while assuming that someone's bar of coping with life or not is in the kitchen may sound abusive, it is very much sexism alive and kicking, and I find it very much not ok that these kinds of comments get dished out to women routinely. I used to get it all the time when working as a gardener and have had it a few times as a cancer patient. 

  • Aw Coddfish, so well spoken about incurable Vs chronic and positivity not being able to frighten off Cancer.