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Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

958 replies

LemonDrizzle10 · 20/04/2024 23:44

@tilllly and Daisy.

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18
Enigma52 · 19/05/2024 15:37

@somewhereonthe517 yes you will have a bit of a hormonal crash now. I'm on a similar drug called letrozole and it's also a hormone inhibitor. I also
had to come off HRT ( yes I went on it, after BC) It was all about quality not quantity of life for me.

Keep us posted!

somewhereonthe517 · 19/05/2024 15:48

@enigma
You sound like another strong 💪 one. Thank you for being there

TopOfTheCliff · 19/05/2024 16:46

Welcome @somewhereonthe517 to the friendliest thread. As @MothralovesGojira said I have been celebrating the end of my extremely protracted treatment with a trip to Italy. I’ve come back with aching blistered feet but a joyful heart. I’m one month away from the four year anniversary of my first BC diagnosis, and three months off the second anniversary of BC no2.
You have been given some great advice already, stay in the moment!
I would suggest you find out what type of Breast cancer you have. In the UK they don’t fuss much about staging, but lots depends on whether you are HER2 positive. Presumably you are hormone positive (estrogen and progesterone) as you are already on anastrozole. If you are triple positive you may get offered chemotherapy first, with the aim of completely wiping out all the cancer cells before surgery ( called a complete pathological response and a Good Thing!) If HER2 negative then you may have surgery first and an Oncotype test to decide about chemotherapy. Your team know exactly what to do. It’s the same everywhere!
I’m avoiding sorting out the dirty washing here. Much more fun catching up on Mumsnet!

somewhereonthe517 · 19/05/2024 17:55

@topofthecliff
Wow thats really informative..why have i not found that out in all my doom scrolling?? I was in full on panic mode at the results appointment. Felt quite healthy (apart from the obvious!) before i went in
I know its apparently a very 'common cancer' and is hormone receptive.. I will find out more..
Should i be worrying so much about lymph node spread whilst they do all these tests.. surely that is only giving it time to let it grow?
How lovely to go to Italy..never been but would love to !

Enigma52 · 19/05/2024 21:24

somewhereonthe517 · 19/05/2024 15:48

@enigma
You sound like another strong 💪 one. Thank you for being there

Nah I'm not strong. I'm in a perpetual state of anger most days! I blame letrozole.

Anyway, we've got your back here in this group and will hold your hand each step of the way.

catmomof3 · 20/05/2024 11:39

I just got my diagnosis letter and while it says they are treating to cure however there is no guarantee this will be possible and now I'm feeling sad as I was told it was treatable.

HellonHeels · 20/05/2024 11:45

Enigma52 · 19/05/2024 21:24

Nah I'm not strong. I'm in a perpetual state of anger most days! I blame letrozole.

Anyway, we've got your back here in this group and will hold your hand each step of the way.

Oh blimey @Enigma52 I'm due to start Letrozole soon. Im already in a post-meno state of rage, is it going to get worse?! I thought bone density and joint pai was all I had to worry about 😱

EachandEveryone · 20/05/2024 12:41

@catmomof3 they are just words. They can never say they are going to cure it. Mine is treatable theyve never said it will go away just that it might do and if it doesnt they will try and get me immunotherapy. I think its just the way they word things. Im trying not to over think it. Im back on chemo on Friday. Im dreading it but just want to get started now. I had six months last year, six good months and now Im back. Its secondary in my groin and it just has to stay there.

Enigma52 · 20/05/2024 12:45

catmomof3 · 20/05/2024 11:39

I just got my diagnosis letter and while it says they are treating to cure however there is no guarantee this will be possible and now I'm feeling sad as I was told it was treatable.

They never say " cure" because they just don't know unfortunately. Treatable is good, as treatments are plentiful these days. Try not to read too much into the wording.

Enigma52 · 20/05/2024 12:49

@HellonHeels You may be okay. I'm a wreck; brain fog and rage. I've no
ovaries as bloody cancer invaded my entire reproductive organs. So what with no ovaries, hormone inhibitors and post menopause, I'm a bitch right now. Just hell.

MothralovesGojira · 20/05/2024 14:51

@catmomof3
Curable doesn't mean anything but treatable does. They always hedge their bets and no one should say that you are cured or being cured. Most cancers are treatable and you go into remission and a lot of people are never bothered by it again. Some go into remission and then get cancer again. The letter isn't a lie - it's factual. My cancer was treatable and I was in remission but now it's back but that's mainly because of the type that it is. If I get it treated this time, I will go into remission again but the chances are it will reoccur again.
My youngest DC is a type 1 diabetic. They nearly died from it but they are alive because of treatment but will never be cured. Most terrible things that go wrong in the body are not curable but with treatment can be made to go into remission or eased such as heart issues, MS, arthritis and you can live relatively normally. There are, sadly, no absolutes in the game.

I found this piece below to be very helpful in explaining how this makes you feel and I think that we can all identify with it. I apologise for the Americanisms!

What’s it like to go through cancer treatment?

It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” - and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they’re half grown and only have three legs or whatever, and you think to yourself - why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric sabre fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE” and the mountain lion punches your husband right in the face. Now your husband (or whomever) is rolling around on the ground clutching their nose, and they've bought you some time, but you still need to get to the top of the mountain.
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”
Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “fk this mountain, I never wanted to climb it in the first place.”

So you’ve beaten the lion. But everyday you have to open the fridge. For a while you expect the lion to be there everyday. But it’s not. Eventually you can open the fridge with no fear. Some mornings you even forget about there was ever a lion in there. Some days you even forget about what the bear did to you.
Ten months after my lion I opened the fridge and found a mountain lion cub. No one was sure if this cub would turn into a mountain lion or not. It may just run away and grow up somewhere else, or if I kept it it may turn into the most ferocious mountain lion ever seen and kill me. But when you’ve had a run in with a lion you try your best to avoid another.
The guys who know best about lions say they can take the kitten away, just to be safe. As it’s not a full grown mountain lion they don’t need a full grown bear to kick it’s ass. A bear cub will do. Even bear cubs scratch.

Three more times I’ve opened that fridge and found a mountain lion cub.

Once I did just ‘watch and wait’ to see if it was going to leave or get bigger. It did get bigger and that meant a bigger bear cub was needed to sort it out before it became an adult. That one tore a chunk off me.
But everyday you’ve got to open the fridge. Imagine that? How mentally exhausting to live in a state of perpetual uncertainty and fear. Because it’s such a horrible way to live most people who have had a brush with a mountain lion find that they do their very best to make the best of every day. That adds to the pressure. Many survivors find it a great help to lend a hand to others still running up the mountain.
This year I found another cub. Just sitting there one day. These cubs clearly love me. Another bear, not adult, but adolescent was found to dispatch this cub. The mountains the cubs live on aren’t as tall. But by the time you’ve spent 3 years running up mountains you are totally knackered.

Being a lion fighting, bear cub finding, mountain climbing person can be pretty dull for those around you. They’ve never found a lion in their fridge. The first time they are curious, they are pushing you along. By the 3rd or 4th time it’s only those who are absolutely closest to you that even turn up to watch let alone lend a hand.
Most recently I opened the fridge and whilst there was no lion, nor cub, there were a few footprints in the butter. Lion experts looked and couldn’t be sure if there was a lion around without the help of yet another bear. Yet another climb up the mountain. It wasn’t a lion. It was something the last bear had left behind. Even the bears, the savage lion killers can cause problems you know.

So, I never wanted to climb the mountain. Not once. Not twice. Not thrice. Not forth. Not fifth. Those who have never found a lion in their fridge won’t get that.

But those who have will.

Most of us will only have to fight the mountain lion once and that needs to be remembered my friends.

MothralovesGojira · 20/05/2024 15:07

@somewhereonthe517
Thank you! My breast consultant would say that I am stupid and wrote as much to my GP telling tales about how uncooperative I am. I describe myself as a mid-50's post meno woman with a huge fuck it bucket which is fairly well used.

somewhereonthe517 · 20/05/2024 16:17

@Mothra
Somehow i will save your last post.
When I look back on this thread there are so many of you going up that f**ing mountain like warrior women ..and not for the first time.. and you're (you and others) still taking the time to answer questions to those who have only just opened the fridge. (Normally only manky cheese in mine)
After advice on here yesterday i have spoken to the gynae MDT to make sure they have my case for this week and rung my doctors for sleep help. Small steps x

lucysmam · 20/05/2024 17:27

Hey all! I've just realised I haven't been on this thread for a while. Lots to catch up on! How are you all doing?

Everything's much the same here...still plodding along, work being dickheads again, mid A-level assessments for dd1, meeting with school for dd2 who's still not doing brilliantly 😥. Much Eras Tour excitement (this is what work are being dicks about 🤷‍♀️).

MothralovesGojira · 20/05/2024 17:55

@lucysmam
Hi lucysmam!
Great to hear from you!
What's been going on with work? I thought that they were behaving now. Didn't they get slapped down by the union or am I confusing you with someone else?

thesandwich · 20/05/2024 18:36

@MothralovesGojira thank you for the mountain lion reminder. So true.

lucysmam · 20/05/2024 18:38

@MothralovesGojira Eve's Trust have booked us almost a week in Liverpool, plus travel, for the Eras Tour so I have plenty of downtime & we can still explore the city. It just happens that dd1 has booked an open day at Manchester Met for the day after we come back & returning on the Thurs. I've had a snotty email today asking me to have a meeting with the head tomorrow and a "catch up". I've emailed the union rep to ask how to approach this "catch up". Although if they're expecting a full on meeting with minute taker they'll be disappointed & I'll be leaving.

I suspect reading "Eve's Trust referral" has them thinking along the lines I'm on my last legs & haven't told them so they're over-reacting 🙄 As it happens, my unwelcome guest is doing precisely nothing 🤷‍♀️

lucysmam · 20/05/2024 18:52

Oh goodness, I've just got as far as the news about Princess Tilly. I'm gutted. It's fucking shit!

MothralovesGojira · 20/05/2024 18:53

@lucysmam
Well tomorrow doesn't sound like enough notice to me particularly if you would like your union rep there. I think considering how your employer has behaved so far you need more than 24 hours notice and I would only be happy with a week's notice myself and I would email back and tell her that.

Other than that a bit of Tay-Tay sounds fabulous!

lucysmam · 20/05/2024 18:56

No, that's what I'm thinking. Why they can't just say yes/no via email (which was how they told us last week they would be responding to requests for time off in the last half term), I don't know. I'll see what the lay of the land is tomorrow - if it's questions then I'll be stopping them & waiting for the rep to be available 🤷‍♀️

Although if they say no, they won't particularly like my response. The local press already don't like the trust very much.

KentishMama · 20/05/2024 18:57

@lucysmam It really is fucking outrageously and horrendously shit. I'm sorry you've just read the Tillly news, sending you a big hug.

MothralovesGojira · 20/05/2024 19:09

@lucysmam
So sorry that you didn't know about Tillly - it's just so sad and we miss her lots.

So they haven't said yes or no to time off for your trip? That's ridiculous and looks like HT is thinking either you're sicker than they thought or its if you're well enough to go on a short trip then you're well enough to work? Neither are very....considerate or understanding.

lucysmam · 20/05/2024 19:40

@MothralovesGojira nope, no answer either way 🙄. Although I'll be going eithet way!

Thing is, I am well enough to work. & I work bloody hard while I'm there! I think they're probably reading "Eve's Trust" and thinking I'm sicker than they thought 🤷‍♀️ The reality atm is that I'm pretty much doing what I normally would - just with more gigs and fun stuff chucked in, where before I didn't do half of it.

MothralovesGojira · 20/05/2024 20:42

If they think that you're that sick then they can request an occupational health assessment I guess? Anyway, don't take any shit and let's hope that she's going to be kind.

Have more fun is my mantra too. We're off to Slam Dunk this weekend and then next month it's Download, the Foo's and Placebo. I missed nearly everything in 2022 and I'm not doing that again. Last year was a bit of a catch up but I have booked 21 Pilots for next May as a target to aim for. I really hope that you enjoy your trip and Eras.

Enigma52 · 20/05/2024 20:47

Definitely have more fun peeps!

Off to the city of Bath this week to see DD. Treating myself to nice coffees at the moment and generally don't give a flying fuck about the irrelevant shit that is called life!

@lucysmam Your school should be crowned " School of Dickery" and all SLT should wear a lanyard saying so!! 🤣🤣🤣