My mum’s breast cancer came back a month ago - it’s stage 4 and it’s metastasised to her bones. Her life expectancy is about 6 months without treatment. She has triple negative breast cancer which is rarer, more aggressive and significantly harder to treat than the more common hormone-responsive breast cancers.

There’s a new immunotherapy drug, pembrolizumab, which is effective on advanced triple negative breast cancer when given alongside standard chemotherapy. But it costs £3000 per treatment and she needs 18 rounds of it. Her oncologist applied for funding and got it!

After 6 months of treatment my mum should have 23 months of “progression free survival” compared to 16 months if she had chemo alone. She’s only 57 so every extra day I can have my mum in life is truly a gift. I’m so so grateful for our NHS.

  • ᴇᴍᴘᴇʀᴏʀ 帝@feddit.ukEnglish
    2·
    1 year ago

    Oh gosh, you’ve lost so much.

    You don’t know what you’ve lost until it’s gone. We buried an aunt a few weeks back and that is a whole generation gone on that side - no chance to ask questions or just have a chat. A while back now, when I was starting out doing genealogy I prepared a questionnaire for my great aunt - she was the last of her generation on that line and was the one who’d kept in touch with the Irish relatives so she had a lot of information for us. We took her out for a meal, and I was going to run it all past her afterwards but she had a stroke just as the main course was turning up. She never properly recovered and died not long after. In an instant all that knowledge, all those stories and… who knows what else were just gone.

    Have you heard of death cleaning? I’d never heard of the term before I came across this article by chance a few days ago.

    That’s a brilliant idea. We never got the chance for that but I will stash it away for future reference.

    And I’ve made myself cry again…

    Don’t worry - my previous reply took a bit because I kept crying. It’s understandable.

    Unfortunately she does carry the BRCA1 gene and I’ve already had stage one cervical cancer (now cured, thankfully). I’ve been referred to the cancer genetics clinic where I live, they’ll take my DNA in November and if I have it too we’ll discuss preventative mastectomies/hysterectomy then. I’m in my 30s. It’s a bit scary tbh.

    That’s rough - my oldest best friend had throat cancer, he’d been worrying about it for years because his granny and her sister both died of it. He’s fine now and coming up on 5 years clear but the chemo and radiotherapy took its toll. There was a spate of cancers amongst my friends in their late 40s and the thing those who had surgery said was: you don’t have to worry about it coming back if they’ve cut out everything it could have spread to.

    A better upside is that I believe the DNA test can be run through a tool that formats it in a manner that can be uploaded to genetic genealogy sites (some for free, some for a small fee but lower than buying the test from them). I’ve been encouraging any friends who get offered it for genetic illnesses (another friend had a stroke at the same age her Dad died of a heart attack because of wildly elevated cholesterol likely due to genetics) to do it and I’d see what I can do with the data. Or I can point you towards the right tools - I’ve used other genetic genealogy tools (I help run a few groups on FTDNA but have the same experience level with them as I presume you do).

    My partners has the thickest hair that grows incredibly quickly. He offered to grow his hair out and donate it to her but she declined because she doesn’t like the colour 😅

    That’s a great offer and a classic mum reply!

    Do you have anything handwritten by your parents? I’m an embroidery artist. If you’d like me to make something with your parents writing on it (maybe for the children’s bedrooms?) I’d be more than happy to make it for you. Send me a DM if you’d like to do that.

    Thanks for that lovely offer but, oddly, a cousin’s wife does the same thing and she has already offered. I am still unpacking everything but if I find something suitable, I’ll be sending it off to them. But thanks, that’s very kind.