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

[LemonDrizzle10]

Last one filled up quickly!

Hey all. I'm reading many stories and continue being inspired but find it hard to comment all the time.
My lovely daughter buzz cut my hair, and my son's as he wanted to show solidarity. Had first chemo 16 days ago and gearing up for the next.
I didn't think I'd be emotional, in fact wept more when saw him with very short hair as his was much longer than mine!
That has given us 2 days of distraction, including " Pube drop,"and I knew the rest would fall out but it just seems to never stop..looking for the glimmers constantly but it is a shitty illness all being said! I am rocking the SOC cut but wish I had just a bit longer with it!!!

Its absolutely fine just to message just about yourself, cancer can be overwhelming at times especially at the start and during chemotherapy.

I hope you get a plan soon Weegie Sometimes they do plans in bits though if its caught early you may get whole plan at once. You do adjust to the uncertainty in time, I am a planner so I found it hard but now have a what will be, will be and one stage at a time view. As well as do things you want to do whenever you get the chance.

@Silkiebunny I love a plan.. Me and my notebook. @Weegie there just seems to be so much waiting about, for plans but once the wheel starts rolling it rolls quickly and for me after a long wait seems to be quite coordinated and the routine will take over. I'm trying to recognise patterns with my notes but also aware that there are things on some days that just don't work and have to listen to your body.
I'm also becoming more aware re my famalam.. Had a fantastic fleeting thought I wanted to try and go away for a night! Finding it hard to go to shop for small items.. hmm This stressed them out entirely. Not that I couldn't do it but the what if .... we will wait another day. Those around you also need to get used to it all. Glimmers and curves

I love to plan too Nappy Just ordered our Christmas food from the butchers.😂

@FairyWren7 Hope you had a lovely holiday. Did you see any Tasmanian devils in the end?

Ah @weegiemum I'm so sorry you're suffering off the hrt; I'm 4 weeks off it now. The ridiculous sweats I've been blaming on the tamoxifen could be from no hrt.

Fan on, covers on and off all night.

I wondered if anyone can advise; This evening I noticed very slight lymphoedema in my affected arm. It's barely there; I only know from trying on a top. Maybe a difference of 1-2 cm circumference with tape measure.

Google said it can occur around 4-6 weeks post op snd usually goes away.

I wondered if anyone else has any advice or experience? I've been feeling like I'm slightly water retentive generally too. But I know that can be tamoxifen. And I'm over due a thyroid test.

@Ikeameatballlunch on the lymphedema, I have a similar difference (about 2cm). It may or may not go and can fluctuate. I still don't know where its heading for me (just over 3 months post op). What I would recommend is to get it checked out asap, as with some proactive exercise/massage/compression they may be able to stop it in its tracks. They always recommend seeking advice sooner rather than later. Sorry you have this swelling. It is not a fun thing to be worrying about.

Thanks for the info - I've mentioned the cording before and they just say "are you doing your exercises?" But Google says they're not linked. (Google said do them more and lots of massaging so I'll do that! May also see if I can get a physio via work insurance.) I am doing exercises but I'm also very hypermobile. I've excellent rom there for most people but not for me.

I'm a bit worried I've been doing too much trying to exercise (though haven't really) but at the same time that seems to be what could help. Maybe not lift weights on that side? I only started this week, (6th week I think?) but admit I didn't speak to them first. I really have to though as I get very weak across my shoulders and upper body if I don't. I don't know if it could be linked to swelling a bit on tamoxifen.

It's been only in the last few days I've noticed it. I tried a dress on last weekend and it wasn't an issue; this time I noticed that arm was struggling to fit in the hole.

Sorry for dropping off the thread a bit, my mood has been all over the place and I've been just trying to deal with that!

@weegiemum the waiting is sooooo shit, lots of sympathy.

@lucysmam this is going back a bit now but loving the Each Peach pegs, especially Baby Bunting 😍

@BreakfastClub80 hope you are feeling better. It's a bit late but the thing which has made the biggest difference for me is to drink lots, I started measuring out water to make sure I was getting at least my 2 litres per day.

Interested to read all the vagifem / tamoxifen / weight experiences, tamoxifen is in my future treatments list and I'm not looking forward to it, so useful to know this stuff in advance! Agree with you @SummerCycling this is the best thread for that (sorry I have no knee tips though 🤣)

Hope everyone has a good weekend ☀️

Morning everyone 🙂

@AllotmentTime thanks! I've done another Goldilocks set, some spare bears and, a So Much set since them. And I've been slowly painting a Brown Bear set. Realised last night as I was packing up that I'd forgotten about the teacher at the end 🙄. Sorry to see you've been struggling mood wise, hopefully you're feeling a bit better now?

I got told to slow down on the liquids at my last chemo because it was affecting something (potassium, maybe?). I didn't think I drank that much. But maybe I do 🤷‍♀️ I'm not looking forward to it being cold & hot drinks not hitting the spot! Hopefully the cold will have me wanting a nice hot cuppa on an evening again!

@weegiemum I'm a planner too - the waiting's horrible. I like to know what's going to happen & when!

@Silkiebunny I'm usually almost sorted for Christmas by now, with just fun stuff to be done! This year it's all gone to pot & I've sort of given up. Should really get on & finish the girls' advent calendars this month (they have ones with a mix of little presents and chocolates - I only really need a few more of the presents for them). Maybe that can be a weekend job & I'll order them online 🤔

I woke up early as the cat threw up. Lovely. Does anyone get achy ribs after being asleep? I always get them down my sides.

Thank you so much @isaxx as I thought I was being precious. It was really noticeable after a shower - I use hot water to help stretch the cording. So then used freezing to help the swelling!

And every thing I know about exercise, (which didn't much!) I can't see how not exercising would help lymphoedema, quite the opposite. I've got a tubular band that fits so will try that and elevation when k feel it's bad.

@weegiemum I’m a little bit further off the HRT and I was trying to wait until I knew what the drop in progesterone did to me (as I had very heavy bleeding prior to using it) but have had to go to the GP about the hot flushes as I can’t sleep. She has given me venlafaxine to try. It’s an anti-depressant and they do work for hot flushes, but not the rages I don’t think.

I was a planner too and am now just whiling away the days until my next chemo cycle, which feels better than waiting for the first one to start. It’s very difficult.

For those who are finding weight gain an issue, I will say that I put on 3/4 stone in the last year just through peri-menopause plus HRT. I’ve always been quite skinny so it was very strange to gain weight when it felt I was eating in a similar way (except for the odd biscuit barrel!).

@BreakfastClub80 I'm already on Venlafaxine (and quite a high dose, I'm a chronic depressive, I've been on some kind of antidepressant since my dd1 was born almost 24 years ago). The hot flushes aren't keeping me awake all night like they used to, but I'm a bit wary of how things might go on tamoxifen or something like it, if I do end up having a hormone sensitive type ..... see, if I had the PLAN then I'd be able to plan ahead for that! Ah well, 5 more days!

Hello All. Have been struggling with my emotions lately so been laying low.
Rang the breast unit the other day as the top of my nipple is a different colour to the bottom. Didn’t notice before because the whole area was dyed blue! My nipple is a bit inverted too. Anyone else had this?
I'm assuming it’s due to a big lump of my small breast being removed.
An appointment has been made for me to see the surgeon in a couple of weeks which now obviously sends my mind into overdrive!
It’s been a difficult week - one friend got the all clear on scans but starts immunotherapy soon and another has got untreatable lung cancer. Another one has just had her first dose of chemo for breast cancer. I need it all to stop now.

Ignore still trying to work out how to reply!!

So love that planning @Silkiebunny

@LemonDrizzle10
That is a lot - with your friends

I don’t have breast cancer, but I wonder if you should contact your surgeon’s secretary and ask about the nipple issue.

I am sure you will make a lovely Christmas for your girls @lucysmam plenty of time yet.

@Each I would probably ask your team about the ribs just incase they want to do a bone scan or something like that though aches are pretty common. I don't have rib ache but different type of cancer. Sometimes hip aches. Think some of it is just menopause.

@LemonDrizzle10 Sorry you were feeling low. I have not had that but my nipple was removed so not much use. Its probably fine but might be worth running past breast care nurses. It does affect the shape though.

Just been swimming again and third day of diet. Its a little challenging to swim on low calories but did 104 lengths of the 15 metre pool. DD was asking what they are looking for on CT head and reassured her will be fine. She did her punting job today and one tip was 10 dollars. Clearing garden now for house painting to start. Wish the guys would finish the kitchen, nearly there and all appliances useable so not too bad.

Will be interesting to see effects on no Tamoxifen for 6 weeks. When I said to oncologist about water retention she looked sceptically at me but will see at weigh in at surgery appointment on 9th. Day 3 of diet done.

@Silkiebunny no, no Tasmanian devils. There were opportunities to see them in zoos but we’ve seen them before. After Hobart we were on a whistle stop tour along the east coast which was very beautiful and windy! Bay of fires with all the rocks was pretty cool.

My parents are travelling out at Xmas and we are hoping to do a drive trip with them - possibly Canberra and the Blue Mountains.

That sounds lovely @Fairywren. Hope you get to do trip with your parents too.

@LemonDrizzle10 it’s so odd isn’t it, all the things that crop up along the way. Get it checked out by the Dr. I’ve been worrying about the shape of the scarring and my skin. The scars were vertical which I thought odd and I’ve got these little sticky out flaps of skin nearer the top. Apparently they are going to be used to reconstruct my nipples at some point.

Amusing (alarming story) from my week is i nearly inadvertently shoplifted from tk max on Thursday. I was trying on bags as you do to see if they were a good across the body option, then moved on to trousers (two pairs hurrah!) and I set off the beepers as I left the shop. Rushed back in thinking they’d left a tag on from my purchases only to find the bag still across my body! Whoops! I’m only 46!

I guess my brain may not be back to it’s best! But I managed to do another assessment for the course I’m doing, I bashed out an 800 word report in less than an hour which I was pleased about.

After @TopOfTheCliff shared that useful information booklet with us last week I went looking for Alan Bennet’s Untold Stories and found it for $6 in a charity shop! I’m now about 300 pages in and able to concentrate and retain information again.

Exercise wise is a work in progress here, it’s got hot this weekend. So dog walking and stretching is where I am at, at the moment and have started weights too. Hot flushes seem to be in the evening at the moment.

I lost another kilo but then went to a BBQ on Friday and put it all back on. More salad in my future this week!

Best wishes to all :)

@LemonDrizzle10 I hope you're feeling a little brighter now. That is an awful lot to deal with along with your own stuff. It'd be nice to stop the world for a break sometimes I think 💐

@Silkiebunny you're right, of course. The year just seems to have slipped by as an afterthought & I seem to have got nowhere fast. Not even got anywhere slowly tbh 🤷‍♀️

@FairyWren7 I've done that before with something flung over my shoulder & forgetting about it 🙈🤣

Are achey joints a menopause thing? Or a post-chemo thing? I can't be doing with the sore knees I currently have 🙄 they're ok once I get going but really quite uncomfy to get going. I shall have a google.

Thanks for the messages.
Am feeling a bit brighter today.
Had my covid jab yesterday: am a bit sore from that.
Started my ‘Walk 100 miles’ for Cancer research this morning.

@lucysmam I also have an aching knee - it’s really stiff. No idea if it’s menopause or chemo related! I did have really painful feet the other week - put that down to the radiotherapy. Have started on the vitamins again…

Actually, I've just realised, it's my knees aching now where it was my thighs before. Bloody confusing isn't it!?

I might ask on Thurs if there's time when we do consents for the next meds.