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.
That’s fantastic news - “success” hardly does it justice. You’ll treasure that extra time you have together for the rest of your life.
Thank you! I was absolutely devastated when the cancer first came back and we realised how little time she had left. An extra 7 months is incredible! Now I’m trying to convince her to take my hair for a wig. It will make her so much happier when she loses hers again.
Yes, do what you can do make your extra time as special as possible and if a wig helps, go for it. Remember to also use this time wisely and document everything you can - get videos of her telling her old stories, family memories, jokes or songs. I’d also consider getting a swab for genetic genealogy purposes (although it may be the doctors have offered a DNA test if there’s a genetic component - she’s very young for this and at least one friend who went through cancer recently found it was inheritable).
I lost my Mum in a car crash when I was 27 and you lose so much - her grandkids largely know her from photos and the stories we tell. Unfortunately, those don’t really capture her personality and spirit like a video would. My Dad died during lockdown and it was 4 days, start to finish, and for most of the time he was on morphine so there was no real way to properly talk to him or even for anyone in the wider family to say their goodbyes. So any extra time you have is really important, make good use of it.
Oh gosh, you’ve lost so much. I’m so sorry. Thank you for your advice, I appreciate it. We’re not the kinda of family that take lots of photos and never videos, but I’d already decided to capture as much of our remaining interactions as I could.
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. My mum has already started death cleaning without knowing it and although it felt weird and morbid at first, it’s honestly it’s been great. Every time I go over she gives me something of hers that she doesn’t use anymore - clothes, shoes, even body cream. With each gift we talk about when she got it or a special time she wore it. We’re making more memories by go over old memories, it’s beautiful. And I’ve made myself cry again…
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.
She’s refused to take my hair. I lost mine when I first had chemo in my 20s and it was pretty traumatic. She said seeing me with no hair just so she can have it would make her even sadder. She’s just going to order the same NHS wig she had last time. 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 😅
I’m truly sorry you’ve lost both your mum and dad - and that you didn’t get “advanced warning” as I have. 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.
Thank you again for your kindness x
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.
That’s awesome. *mab drugs are fucking nuts and have so many uses. Mouse/human chimaeric antibodies in the case of hers.
Glad they got her funding and you get more time.
I have lupus and my consultants are going to try me on biologics/mabs - hydroxychloroquine damaged my eyesight and methotrexate damaged my liver. I’m pretty excited to try it!
Thank you for your kind words 🙂
Jesus. Rheumatoid Arthritis here. I just got back on methotrexate because it was fucking my liver. I’m hoping my enzymes don’t climb again. Hcq makes me lactose intolerant. Antibody treatments are nice. Stay strong and take care of yourself - finding the right mix takes time.
It’s been 15 years, but my lupus is stubborn - it’s never gone into remission. HCQ, MTX, prednisolone and a boat load of painkillers worked well enough for a long time, but my disease activity is flaring badly atm. Probably the stress of my mums diagnosis, - it happened last time too. My dad has RA. He’s been on anti-TNF for donkey years now - he was in the original clinical study! It enabled him to work a physical job for 20 years when he couldn’t do his shirt up or bend to put his shoes on before. Magical medicines - absolutely wank diseases. I wish you many more good days than bad and optimal LFTs!
