Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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To clarify, I have BC and am a year on from diagnosis now. Surgery, chemo, radio, ovarian suppression, letrozole in that order and just started Abemaciclib.

Thank you @dotty2 - that’s heartening. I guess I will just have to keep a close eye on it.
Really struggling to find positives at the moment.

I didn't put on weight with breast cancer. Steroids made me want to eat every 2 to 3 hours but I just ate smaller meals and kept to 1,600 calories a day. I had weekly chemo and they weighed you each week so could tell.

I would tell your team how bad you are feeling Flora sometimes you hear of people who have breast things done on mental health grounds, its not easy to get but it does happen. You really need to be kinder to yourself though - if a friend had cancer had lost her job and was 2 stone overweight what would you tell her if she said because of that she thought she deserved to die. I have really struggled with the appearance side of things but am just starting to come through that have to be careful not to be triggered.

Off swimming now.

@Florabritannica I have no good advice to give as I haven't been through this but sending hugs. x

@Florabritannica so sorry you are feeling so low. There is nothing I can say to make you feel better but I too (for different reasons) am feeling really down at the moment. Not sure what to do.

I’m a week post surgery now and feel like absolute shite today, I feel like I have flu and have be asleep most of the day. Have first oncology appt tomorrow which I am not looking forward to 😥

@Scandimandy it can take ages to get the anaesthetic out of your system- take it easy and sleep when you need to.

DD and I are currently camping with our friends - thunder storms due tonight. We’re all secretly looking forward to a day sitting in the tent drinking coffee tomorrow.

Yikes @LemonDrizzle10 I hope your tent is well pegged down! There’s quite a summer storm coming through tomorrow.

@Florabritannica I think I put weight on because I haven’t got the self discipline that @Silkierabbit has to stick to 1600 calories and I have a DH who brings back cakey morsels like a mother blackbird feeding its chick 😅
If it matters to you I am sure you will be able to control your weight just fine. Sorry you are feeling so desperate.

I had my call eventually so tomorrow is the restart of chemotherapy. Crack on and let’s get it over with! I just want this done.

I have a mad plan to go cycling in France in two weeks on my ebike. I hope my feet will stay healed so I can have a mini adventure. It’s given me something to look forward to anyway.

@Scandimandy i had fairly minimal surgery and expected to bounce back quickly but to be honest it floored me for nearly 3 weeks. But then it didn’t and I’m now on holiday in Crete with my girls (4 weeks after surgery) feeling amazing, swimming every day and in a good place. Hang in there

I had carboplatin and paclitaxel and I didn’t put on weight @Florabritannica - though I ate mainly plants, no sugar other than a square of dark chocolate, hardly any carbs or meat. I really enjoyed what I was eating so didn’t feel deprived and it seemed that I could eat whatever amount I wanted because there was lots of fibre to fill me up. I also didn’t take all the steroids they gave me, especially after the first one when I knew how I was going to respond, so that might have helped. I did also fast around the chemo but I’d already lost weight on what I was eating before that. I do intermittent fasting - between 14 to 16 hours overnight not eating, I find it easier to just have that set period I’m definitely not going to eat than try to moderate food. It then restricts the amount of food that I’m able to within the eating window.

Also @Florabritannica i’ve lost 3 stone since I was diagnosed - everyone is different, I just could not eat for most of it. But be kind to yourself, whatever your body tells you it needs, it probably needs.

@Florabritannica I’m so sorry you’re feeling this way. I know almost nothing about breast cancer but for my bowel cancer chemo I was given a 5-page booklet listing about 30 possible side effects and I’ve only experienced about 5 of them. So everyone responds differently.

@isaxx and @Scandimandy I am thinking of you and hope tomorrow is a better day for you both.

@Florabritannica I'm really sorry you're struggling so much.

@Scandimandy hopefully today's appointment is positive! How are you feeling today?

@LemonDrizzle10 as much as camping does not appeal to me at all, a day holed up drinking coffee & listening to the rain does! Hopefully your tent is thoroughly waterproof!

@TopOfTheCliff enjoy looking forward to your mini adventure. You'll have to show us some photos if you do go.

The talk of weight gain has me wondering whether I'd have put on the 2st I have done anyway with the chemo 🤔 I lost it back before the Easter hols so needed to put it back on anyway, but would I have been 2st heavier? Or did something just kick-start me to eat alllll the things, when I was really struggling? I'm less hungry now than I was 11 weeks ago, and being more careful what I'm eating so I guess that's probably my answer. But maybe not 🤷‍♀️ Either way, I don't want to buy new clothes because I've either lost or gained, if I can help it.

Sleepover went well - they did blindfolded makeup on each other & spent most of the day giggling. I sent them all to bed at 2am when I got up for a wee 🤣 they all went too - not a single moan 🤷‍♀️. All is peaceful here atm, they're still sleeping. Quiet cuppa for me 😊

@TopOfTheCliff yes - we have some excellent Delta pegs which have got us through hurricane conditions in the past; every year there is high winds at some point during our camp trip.

@lucysmam I’m just heading to the tap to replenish water supplies in preparation for the coffee fest. We’ve got new comfy chairs this year. Dogs are worn out as I took them out early. Bring on the storm!

Feeling more on top of things today. Final family members arrived at the villa. Cooked dinner and we sat round the table until about 1. Realised the huge value of having achieved such a warm relationship with four stepchildren and their partners and children.
Still worried about weight gain though…

Glad you had a lovely evening Flora.

I've just returned from an abortive trip to the hospital for my 12 month mammogram. They won't do it as it's been less than 3 months since surgery, although when I asked the surgeon, she said it would be fine! A bit of me is relieved.

I'm so sorry you've been feeling low flora. is your worry about weight gain related to tamoxifen? Liz O Riordan has posted an Instagram post about dealing with side effects which includes weight, though silkie's suggestions are good too.

A friend who has always struggled with weight found the fasting window thing helpful. There's a book she recommended- when I remember to ask her what it was I'll post it. Based on research and linked to diabetes stuff iirc.

Regarding boob reduction- I think I'd ask for that to be reconsidered and see if you can push for that? I don't know much about it but in my mind smaller boobs will only help exercise

It feels wrong that I'm having a boob reduction and lift as mine are on the smaller side anyway.

I've had more biopsies. Mucho Scanxiety.

Sorry I see it's chemo related - I think she's done stuff on that if it's at all helpful.

@Ikeameatballlunch I am with you on the scanxiety! I can't relax or focus on anything else. Had an ultrasound of lump on inside of elbow today and it was a lymphnode but inconclusive as to benign vs malignant - some abnormal features but statistically BC does not tend to go there so more likely reactive to inflammation from surgery (what good are stats when you are already on the wrong side of so many). So can either wait and see for a while or have a biopsy. I requested to have it biopsied but have no idea when that will be. The radiologist today apparently wasn't qualified to do it. I am not confident he was very qualified at all (or I am just so scared I don't trust anyone) as he said he had never seen an abnormal lymphnode in that location related to BC, be it benign/reactive or malignant. My bad luck to be some unusual case..
Apologies everyone for being so self absorbed lately. Just in total fear mode.

@isaxx if it is any comfort the lymph flows up your arm not down so the node is responding to something below the elbow. Cancer spreads through the nodes but upward not downward so it is much more likely this is benign. The only way to be certain is a biopsy though. Hopefully it will have shrunk soon.
Thinking of you, while waiting for my chemo pills. The unhelpful nurse didn’t listen when I said I would collect the pills myself today and has put them out with the courier tomorrow so I will be late starting.

I really enjoy reading your updates everyone, is that strange? Just the things you're doing in your lives regardless of diagnosis.

Sorry you're not feeling so good flora it sounds like the weight gain isn't certain although no personal experience.

I had my follow up appointment for my pelvic MRI scan come through - 3 weeks away! Making it 5 weeks from scan. It's also when I'm on holiday, which I can't cancel or get back from. When I rang to speak to the appointment coordinators, they said it can't be changed, only cancelled due to "the backlog". Had a little cry and the person was nice but couldn't do anything.

Anyway, enquired about seeing the same consultant but paying privately and I've got an appointment for THIS FRIDAY. Sucks to be feeding that system but I need to know what this tumour is.

@Crimsonbow I like seeing what everyone's up to, too! A little slice of normality alongside the shit show maybe 🤷‍♀️

@LemonDrizzle10 have you had a nice day?

@TopOfTheCliff that would frustrate me immensely!

@isaxx I think now is the time to be self absorbed, if ever there was one! No need to apologise.

I've been busy crafting away again today - treasure chest inside is varnished & drying, and I've made a start on Colour Monster wood slices. Need my black paint marker to arrive to add details though; the brush head is slightly too long for me to have good control over it for writing with 🙄 I'm just about to have an hour with my for me crochet project & see if I can get this row right. I keep mis counting for some reason 🤷‍♀️

I thought I was getting my haircut tomorrow, I was worried that the two-lengths from cold capping style was starting to look suspiciously mullet-like, but I got a phone call this evening saying my appointment was today and I’d missed it. I feel like I’m constantly making stupid mistakes, at work as well, that I never used to make before and I was mourning a bit of my old personality. I hate it. But I’m still alive…. I’m also having weird flashbacks to this time last year when I was just preparing to start chemo, it’s odd like I’m getting time confused and it’s happening now - had that happened to anyone else?

Love it that you’re able to reassure @isaxx a bit with your medical background @TopOfTheCliff - though it’s difficult/impossible to relax until you know for definite even if the signs are promising. When my GP told me my biopsy was negative last week I kept wondering if he’d got it wrong!

Turns out, I still cannot get this row right 🤷‍♀️ Dd1 has told me to go to bed & try again tomorrow. So I'll finish my brew and go again tomorrow. I know what I need to do, I know where the stitches need to be. They're just not there when I get to the end 🙄

@SierraSapphire I get the confusion thing! I've been doing it with words too - I know which word I want, but it comes out totally wrong. Nothing of consequence, but annoying nontheless!

Sierra I don't get the confusion as such (I did in chemo and for about 3 months after then much better though occasionally mind just goes blank but comes back after 1 minute or so) but I do think a lot this time last year was doing chemo, this time last year doing radio. I think its partly as I told myself in a year's time my life would be so much better. It is in a lot of ways.

DD has just watched Oppenheimer. We are planning a holiday and just sorting out details atm. It might be just DD and I or all of us if DS wants to come. DD wants to go to Florida, never been so why not though I am not a massive theme park fan. I used to always want to go there as a child though and never did then one day a friend of my parents came round and exclaimed they had wanted to go for years then went and it was just theme parks. They said they had known in advance but still thought it was some mythical place.