Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Thanks to those of you who added your thoughts to what For and I were discussing.

It seems to me that everyone knows exactly what I mean, but that I could and should have used a better word than 'lucky'. Thanks @Octopus45 I actually completely agree with you and think fortunate is a much better choice of word so I will use that from now on.

I was talking about an extremely specific cancer, subtype, stage and grade (which has a more or less 100% rate of normal lifelong survival and CURE after a very short time of far less extensive or harsh treatment than eg MABs, chemo etc).

However, For then wrote about ALL cancer at stage 1. That is not even vaguely the same thing. Of course I don't think people with a stage 1 cancer like the types For added in are in any way fortunate, but I wasn't even discussing those to start with.

By the way, even though my cancer is far, far more aggressive than the type I had mentioned, and mine was far, far more advanced, I do also feel very fortunate in eg.

-- As has been mentioned above: modern treatments. My very aggressive subtype of BC now has various targeted therapies that have improved prognosis and survival rates very significantly in many patients.

-- That I was post menopausal on diagnosis

-- That I was not stage IV on diagnosis. I haven't met many people with my subtype because it's a very small % of BC, but I have met more who were de novo stage IV than people stages I, II or III on diagnosis. I don't know how long I will have, but longer than I would if I had been stage IV on diagnosis.

-- That my cancer responded to chemo and targeted therapies

-- That my husband is supportive

-- That we don't have serious financial worries

-- That my DC were already older than a lot of other people's DC

-- etc etc

Ah the cancer clichés....

I sometimes got a taxi to/from the cancer center and every taxi driver felt compelled to go through every single person they'd ever known with cancer...

Then it's sugar. I must give up sugar. Or carbs. And so and so went from stage 4b but cured herself using cannabis.

You're a fighter, you'll get through this. Yeah coz my late husband who ultimately succumbed to this awful disease and had a far tougher time of treatment than I did and probably moaned a lot less was just being a bit of a fanny and if only he'd had a better attitude he could've beat it....

For my sanity I try and remind myself it comes from a good place and I'm sure I've used such useless platitudes in the past.

Positive thinking

Cannabis oil (not against this to help with eg pain or whatever, but it can't cure everything on its own)

Eat lots of garlic

Drink 6 glasses a day of water with freshly squeezed lemon juice

Don't eat any sugar

You're so brave

(Actually the brave one doesn't annoy me, although I'm not brave so I just point out that if I didn't turn up for the treatments I'd die).

_

If we changed the word cancer to a new word that our random dietary and lifestyle unsolicited advice-givers had never heard of, then they wouldn't offer advice. Maybe we need a new name for cancer.

To me cancer is like when I was pregnant (apologies if this offends anyone), people think they are free to offer any opinion they like on what I look like, or what I’m doing. Think some just see me as a disease rather than a person now.

Mostly I just laugh to myself, most of us will get an illness in the end - they just don’t know it yet.

I love the people who just treat me the same as they did before, maybe ask how I am, but don’t inflict pointless comments on me.

By listing what I feel fortunate about, in no way am I a supporter of the positive thinking brigade.

I just try to be consciously aware of where I am fortunate in this horror show that is cancer and its treatment because it's so easy to forget when you have been through months of chemo with days / nights in A&E, surgery and after effects dragging on, weeks of radio, long term effects of chemo etc etc

But I'm very aware that a lot of people's situation, prognosis etc is far worse than mine (since my cancer responded to chemo, my prognosis was pretty grim up to that point). I just feel I should be aware of that, and I am or at least do try to be. As someone said, cancer is incredibly unendingly diverse.

It's sunny here so when my husband gets back from work we'll go for a walk. Wishing you all a relaxing weekend.

Oh sometimes I feel like if I didn't do the positivity thing I would go insane.

Not in a 'lets kick cancers butt!' Kind of way but as you say summer remembering bits to be grateful for.

For me

• I've had relatively few side effects
• being cured is a prospect
• I was ambivalent about having kids so the impact on my fertility hasn't been as devastating as it might have been
• no major menopause symptoms as yet
• it hasn't been financially devastating, work has kept me on full pay throughout
• I'm financially stable enough to pay for gym membership at a swanky gym with an outdoor pool which I think has been and will continue to be instrumental to The Great Recovery
• ditto I don't have to worry about budgeting for food so I can afford to feed myself well
• supportive partner and family
• my treatment was intensive but quick compared to many on this thread

For me, I feel incredibly fortunate. Yes, I have two BRCA mutations, which means I'm at a serious risk of recurrence/other cancers, but I'm coming into cancer with a real chance of surviving the one we've just cut out Both my parents came in at stage 4/terminal, and were dead within six months. So yes, I'm fortunate. I have never been the most positive of people. Before my diagnosis, I was feeling washed up for a variety of reasons and having quite the existential crisis. Am not saying that cancer has given me a sense of purpose, but it's given me some breathing space and a legitimate reason to take some time and reboot. Suddenly, I find myself with a whole new zest for life and see my cancer as a chance of wiping the slate clean and starting afresh once I'm through treatment.

Also consider myself fortunate that I have no children, was already post-menopausal on diagnosis - am finally super-grateful for my premature menopause. (Am actually far more upset about having to stop HRT than having cancer). I'm comfortable enough in myself and my own skin not to care about losing a breast or my hair, but I do feel spectacularly aggrieved by not being able to eat smoked salmon or alfalfa and radish sprouts, although as my sense of taste will change/and/or disappear completely, not eating smoked salmon or super rare beef won't be anything to miss. If anything, I have learnt the difference between bad, unexpected and unwelcome news, and have adapted accordingly. Have realised that while much of what my MDT have told me is unexpected and/or unwelcome, it's not bad per se. To me, bad when it comes to cancer is terminal. And I'm not that.

I do get fed up of people telling me how brave and strong I am. I'm not. I'm just dealing with all this as pragmatically and sensibly as I can, or at least I'm trying to. Am trying not to think about things until they happen, and only read up on treatments etc when I know I have to have something.

Sorry, a bit of an essay. Have been thinking about all this for a while now.

Anyway!

Having a busy prep day and getting things in order before chemo starts. Will not be wearing a cold cap for a variety of reasons, so in anticipation of my hair thinning/coming out completely, have just put away all my hair accessories as I doubt I'll be needing then for at least a year, if not longer. Have ordered a hairnet to wear/sleep in until the time arrives for me to go see my hairdresser for a buzzcut. Have also ordered two, yes two balaclavas!! Am so excited about these. Surely the one plus of going through this in the winter when it's not unusual to wear someone warm and woolly on one's head.

What about shampoo? Something nice to wash my scalp/bald head with once the hair has gone? Does anyone have any recommendations? Or any I being silly and can just use what I use on my body?

Must admit I'm looking forward to not having to shave my armpits or legs for a while, although knowing my luck, my body hair will do its damnedest to stick around. All my older post-menopause friends told me how their body hair fell out after their menopause. It didn't for me. Ha.

@doublec
i got an itchy scalp when I just used soap on my bald head. I was recommended to use Child’s Farm baby shampoo instead. You can buy it in the baby section of supermarkets, or maybe just any mild shampoo

Separately - I do count my blessings too. Maybe because the Google prognosis/ old prognosis is so bad - that I refuse to dwell on it (as much as is humanly possible). There are people with my kind of cancer that do get years, especially now there is maintenance treatment to keep it at bay, hopefully I am one of them. Who knows.

@doublec
I've got some aloe Vera gel stuff arriving next week which is meant to be very cooling and soothing. I'll let you know.
I've been using some neutrogena as have a usually disgusting psoriatic picked scaly scalp ( actually very good currently thank you dexa)
I did buzz cut early as hated idea of clumps. We're chemo shrinking the MFer so that can have surgery next year.
My scalp seems to get so itchy pre shedding , and am leaving my silver stubble everywhere! am resisting the itchy eyebrows!

Generally, for few pence worth, cancer is just shite. I feel grateful I didn't get this 10 years ago, as even within this time advances especially breast have been so good. I think I'd very likely have been toast like several mates of mine. I'm trying to look forward, and hope we can just all do similarly being kind and gracious. I don't feel the same every day because I'm not bloody perfect and none of us are! Thank be, how boring life would be.

It feels like I'm riding a psychotic horse running through an effing stable!

@doublec I used Johnson's baby shampoo which worked well for me. I wasn't prepared for my hair to hurt as it shed - it felt like when you've had a ponytail in too long. I couldn't face shaving my hair so DD cut it really short which helped as I think the short hair hurt less. Mine all completely went in about a week so I didn't have the shedding issue for too long - I had carboplatin and paclitaxel for ovarian cancer. My leg hair has never returned, neither has my armpit hair apart from a couple of stray hairs at the base of each armpit!

I was mulling over the difference between 60 percent recurrence and 98 percent survival. They are measures of different things. Many people get a recurrence in a scar or in the skin or a local lymph node. That can be easily dealt with and doesn’t necessarily reduce your life expectancy. It’s the distant spread that is a threat to survival but even that can be treated nowadays when before it was curtains. I thought the recurrence rate of early Breast cancer was between 20 and 40 percent though, and even that seems rather high.
It is all frightening and when you first enter Cancerland it all seems devastating. It’s only after a while you distinguish the different grades of awfulness

‘Different grades of awfulness’ - that’s a really good way of putting it

I have a friend - and I don’t know exactly what her type of BC is - but compared to me she seems to have pretty straightforward and quick treatment.

But the poor woman is struggling- she was widowed very suddenly in the few months before diagnosis- and one of her sons (adult) wasn’t coping with his beloved father’s death, never mind his mother’s cancer.

So it is the whole picture, not just the cancer that matters. I have a very high chance of recurrence and I will likely die of this cancer. But just now I feel well and have a great DH and good support from my sons. So just now she has the more awful situation.

I know what you mean @RedRosesPinkLilies . I have friends whose lives are much harder than mine. I have a lovely DH and a mad but lovely home full of bicycles. I sit at home doing crosswords without a care about money and my DC are all thriving. Once this cancer is dealt with I shall resume my outdoor adventures with a new appreciation of how lucky I am.

On magic cures for cancer “The doctors don’t want you to know about” (? Why the hell not?)
Turkeytail mushrooms anybody? Or apricot kernels (which actually contain so much cyanide they can poison you)

I am getting on well with the Zoe diet although the high quantity of beans is causing lots of night time farting in our house. The noise woke me up on Friday! Hilarious

I am looking forward to our meet up tomorrow @Florabritannica
Top

Love that you're meeting up Top and Flora. We'll all be raising a coffee mug to you both!

Night time farting would be met with uncontrollable giggles here @TopOfTheCliff . The girls found the first few weeks of chemo hilarious while my gut adjusted - tbh, once they started giggling I "caught" the giggles too 🤣

@doublec I'd really like to see your balaclavas when they arrive! Shampoo wise, I've been using Nioxin 2 which is supposed to stimulate hair growth. I have nothing to judge hair growth by really - never paid that much attention to how fast it grows - but it seems to be growing ok. It's really soft too!

Really looking forward to meeting you tomorrow @TopOfTheCliff ! I’ll be the bald one, possibly with labradoodle in tow.
Quite surreal, but then Poundbury is a deeply surreal place anyway.
While pre-cancer me loves the idea of cashmere balaclavas, in practice they’d just bring me out in hot flushes.

👋🏻 hi, can I join the party?

Having got past breast cancer, nearly 3 years ago, I found out on Wednesday that it's now in my lung. The upper part of the lung has collapsed and the tumour is about 8 cm and in the mediastinum and invading the heart. They think it's inoperable, so having tests to wait to see if there's anything else they can do.

Breathing test on Monday, PET scan on Tuesday. Hoping somebody gives me something for this bloody cough

Of course you can Tilllly

So sorry to hear your news and only 3 years after, grrr. Sending love and hope there is something they can do.

There's also a stage 4 group now on life limiting board if it would be helpful to join there as well.

Just back from a lovely trip on the Waverley, lovely sunny day 24C and I love all things steam, could see the engine in full.

This is interesting if anyone has triple negative, about a vaccine for that type.

https://www.dailymail.co.uk/health/article-12598009/First-person-breast-cancer-vaccine-changed-life.html#comments

Loving the cancer bingo comments! They made me chuckle. Hope everyone has a good weekend. 😄

Sorry to hear your news @Tilllly , I hope they can do something to help. X

@Tilllly welcome to our lovely thread, so sorry you find yourself here and hoping they will be able to help you Xxx.

@TopOfTheCliff You're spot on with the 'different grades of awfulness'. I'm laughing at your night time farting too - my wind issues aren't confined to the night. I've been on oral chemo Niraparib for 2 years now and have had constant constipation throughout which I sort of manage with lactulose. The side effect is appalling trapped wind. I am used to the internal noises and don't take that much notice but the other day DD said from across the room, 'is that you?' which has made me wonder if other people can hear it and are too polite to say 🤣.

Hoping you and @Flora have a lovely coffee tomorrow!

I’ve been started on this drug called Olaparib (Lynparza) apparently it usually costs a lot of money here but I’ve been given it on compassionate grounds. Anyone else taken it?

I’m having a significant mental health blip. My husband has ADHD and is obsessed with photography. His photography passion of choice is twenty something year old cosplayers… they are all very nice.I’ve had dinner with a few of them - they speak in a language I don’t really understand. I don’t think it’s anything other than taking photos of people who are willing to be photographed but it makes me feel like shit. Particularly now that I have had my breasts removed.

I’m trying very hard to make a few small gains. I did some squats with weights yesterday. Im walking the dog loads. I’ve weeded the front garden. Last week I worked three days and ate so much salad that I’m surprised my front teeth haven’t grown. But I’m deeply, deeply sad.

I really hope things get better. If anyone has any words of wisdom I would love to hear them.