Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

Urgh

Friends daughters 18th tonight
Have spent afternoon in bed so I'd have some energy for it

And now I've got to get up...,
Bugger
😁

You can do it, @Tilllly ! Up you get!

@Tilllly Someday soon all you will have to do is get up, wrap dressing gown round you, hop on your reindeer and be wafted to wherever you choose, little effort maybe a handful of hay from time to time....

🤣🤣🤣

Reindeer slept but I got up, party frock on and went and made merry

Explain this to me....
Why does 0%alcohol gin cost more than actual gin?!!

I should know this

Why do I take dexamethasone before chemo?
It says take for 24 hours before and three days after

I'm just not sure why I'm taking it, and I don't know why I'm taking the folic acid either

For someone who asked a lot of questions, I missed that one

@Tilllly Dexamethasone is a steroid, it helps with inflammation and a lot of the side effects of chemo. Taking it in advance lets it build up in your system ready for when the chemo hits.

I don't know about the folic acid though.

@SummerCycling - could I ask - is your white cell count normal? I’d like to swim, but I know my count is still below normal (I think not by much). So I don’t know if it’s ok or not. Or @TopOfTheCliff might know

@EachandEveryone I find lavender spray helps when I can’t sleep. I was surprised first time I tried it - it seems to calm my mind

xx

@RedRosesPinkLilies if your white cells are low ( neutrophils <1.0) you can’t fight off infection so stick to clean water and clean fellow swimmers. Avoid polluted water ( river or sea) or heavy use swimming pool with unhygienic toddlers etc. I used my hot tub throughout chemo but banned everybody else except DH.

I have just done a really annoying Christmas yoga class with lots of enforced jollity and group activities. Luckily I found a partner who was as Unkeen as me. Lovely people but I really don’t like doing the Hokey Cokey when sober unless it’s with under fives. Ah well no more till January now.

@TopOfTheCliff
Thank you. I think it is my neutrophils - but I think they are higher than that - 1.9 was the last level I was told. Maybe swimming is ok, but would avoid the jacuzzi. Frustratingly I did ask the MacMillan nurse by email - but she never replied.

Think I would feel exactly the same in the yoga class. Don’t mind wearing a Christmas jumper - but I want to do actual yoga!

@TopOfTheCliff Where do you stand on Hokey Cokey with alpacas?
Can anyone tell me about therapeutic mammoplasty? I saw my consultant today prior to my scheduled wide local excision/ axillary node clearance. I have gigantic breasts and had been assuming that once everything had settled I would have a reduction both sides to make everything symmetrical and perky. She told me that it’s very risky doing a reduction on irradiated breast tissue and, when pressed, raised therapeutic mammoplasty.
This was actually what the first consultant I saw said would probably be done (but was too far away to treat me for the whole process) so I was surprised she hadn’t mentioned it before - naively I’d assumed there must be a reason not to do it.
After a bit of googling it seems the way forward - the only question is whether to do both at the same time or let things settle before operating on the healthy one.
Does anyone have any experience of this procedure?

Hi @KentishMama

Yes, my cancer was super aggressive, it grew an 11cm mass in a very short time and spread to loads of lymph nodes in an equally short time. All from nothing to that between mammograms (I found the lymph node, my mammogram invitation didn't arrive for almost a further year).

It's HER2+++ hormone negative so a type of BC that always needs chemo. I was just interested in the Ki-67 number because nobody ever mentioned that to me. Getting my results is always like getting blood out of a stone though. I didn't know it was mainly to determine if chemo is needed or not, so in my case when it was already 100% obvious I did, they maybe didn't bother checking the Ki-67.

Hi @RedRosesPinkLilies

My wbc count isn't normal yet. My lymphocytes are particularly low; they haven't improved since the early summer of 2022 when I started chemo. My neutrophils are higher than 1, for sure though - I think they're significantly higher something like 2.5.

I'm as careful as I can be at the pool. I go late evenings when it's 18+ only and calm. A couple of times someone has coughed a bit and I felt anxious and stayed away from them. I keep a distance from the others anyway.

I don't use the sauna, steam room or jacuzzi. For showering afterwards I try to get the family shower room which is mostly available at the time I need it (9.30pm-ish).

The scouts were having a lesson one evening when I arrived so I waited for that to finish before I started swimming.

I joined a club, it's not the hectic and constantly busy borough pool. Plus I didn't start swimming till November 2023, so about 1.5 months after finishing all cancer treatments, although they said Phesgo is in your body for around 6 months more after 18 x 3-weekly cycles.

It's a really difficult balance isn't it, because exercise is so good for us but I've lost motivation now to exercise at home.

@SummerCycling I really think that's it - your type came with a guarantee of chemo anyway, so no need for more tests. Sounds logical. 11 cm tumour is quite mind boggling, isn't it? My breast tumor was 1.2 cm (but it had still spread to 5 lymph nodes, efficient little piece of sh## that it was).

I had my post-discharge call with the specialist nurse today, and she was 4 hours late and then rushing like crazy. Didn't answer any of my questions clearly, was mostly keen to tell me that she's on holiday now until after Christmas and that there is basically no coverage between now and the new year if I have questions. I'm to go to the nearest A&E if I have severe meningitis symptoms (hard to wake up etc), and otherwise back to them (3 hours away), but I've no idea what circumstances would trigger that. I'm so lost.

Seeing my GP tomorrow and hope they might be marginally more helpful. Although last time I went they read up on my diagnosis and went like, wow, never seen that before....

@KentishMama

Yes, 11cm was horrendous. It must have eaten my normal breast tissue because it wasn't visible. That's weird isn't it, that at 1.2cm it was small, yet already in 5 of your nodes.

I can't remember, was yours ER+, ER+ & PR+, triple pos / neg or HER2+++ hormone neg?

Sorry to hear about the nurse you had. My macmillan CNS was similar, always chatting on about her travels eg across the US or whatever and never phoned back. She didn't know anything about my subtype of cancer either. I have donated to Penny Brohn, not Macmillan. (Not loads, only an affordable amount but some money as a thank you).

Good luck at your GP. Someone needs to give you enough info. A&E via ambulance is a good idea otherwise if something changes, they were wonderful the times I needed them during chemo.

I had my appointment with the cardiac nurse today...I use the word appointment very lightly...it was more a chat than anything else 🙄 She went over the meds I was given by the reg - just as vaguely as he did. Suggested chat forums - no thank you, I'm not in for competitive poorlyness, asked if I wanted copies of her letters - um yes. Then told me she'd say anything in there to my face anyway.

Well, maybe you would, but if I don't see what's being written then I don't know that it's being reported correctly & I still want to see since the reg has pissed me off once, and lied a second time about the reason I stopped one of the meds & I've only seen him once.

Half an hour of going through the tick list of symptoms I do not have again and nodding along with "it could have this side effect" info that I've already read & is a bit late to inform me of 2 months later, that I'm not going to get back & I specifically told the reg that if it was going to turn out to be a nice chat with no useful substance then I wasn't interested in. Glad that was taken seriously then.

I asked about the MRI again & was told "you can try and change it". If someone would actually call me back from the consultants office then I may get further doing that. I'm tempted to cancel & see how quickly they call me to arrange a suitable location then. & wtf makes anyone think 6 hours ish of travel & waiting around is acceptable for a 1 hour appointment slot?!

She's booked me in for mid next month - tried for 11am first then "oh, no, you work too". Like it's a bloody surprise ffs!

Oh, and I queried what other function the Spironolactone has other than being a water tablet, and was unhelpfully answered along the lines of "it supports the heart". Grand. How...? Working with the other meds. Lovely...in what way...by reducing excess fluid. So why give it to someone who isn't retaining extra fluid?...

Literally the only saving grace was the door opening bang on 3pm.

I'm a bit pissed on dd2's behalf too - oncology have booked a phone call slap bang in the middle of when we'll be out for her birthday on the 28th. Rang to alter it & there's no wiggle room even for a crack of dawn phone call before the girls are up & I'll be sat in the kitchen for a brew.

I'm usually a "fuck it, it's fine" kind of person but this is all taking the mick a bit. None of it's geared towards being easily navigated by the patient who doesn't deal with NHS systems on the daily & half of it is unnecessary it seems.

@lucysmam Sometimes you feel you need to remind them that their job is to make people better…
So frustrating to be treated as at best a small child and at worst an irrelevance.

@Florabritannica yes, exactly that! The explaining things like I'm a small child...the repetition of the same things over and over...the eventually telling me the function of the water tablet they're wanting me to maybe start taking again is in fact to be a water tablet, when I already worked that out & had to push for a proper answer & don't need it atm.

I'm thinking a proper rage room might be quite theraputic atm. This whole system's winding me up that much!

I've just been saying to the girls' dad that I'll go to the Jan appointment but if it's more of the same pleasant chat & push for symptoms I don't have then I'll be saying thanks but I'll pass & just be seen by the Dr in future. I can't be doing with spending my time rushing out of work to get to an appointment on time that could have been a quick phone call, there was that little substance to it.

Florabritannica
I don't post very often but thought I would, as I had a breast reduction mammoplasty. My operation was during the very start of covid, so I couldn't have the reduction in my other breast at the same time, as they would only do lifesaving surgery. I went from gg cup to a c cup. I actually paid for my symmetarisation surgery, as after a year waiting on the NHS I was told it would be at least another 12 - 18 months at least. I'm pleased that I'm now a c cup on both sides! I do have to say that I've been unlucky as on the cancer side I had radiotherapy and have been left with a lot of tenderness/pain. It's really annoying but I've learned to live with it - just need to be careful i don't hug people too hard or touch it too much! I was told the residual pain is unfortunate and not very common.

@Zorgothslugofdoom Thank you so much for your reply! It sounds as though your mammoplasty was a success - going down to a C cup must be life-changing. Will the post-radio tenderness get any better with time?

@SummerCycling Thank you - very helpful
Im not an avid swimmer like you are - but it would be really nice to go.
I have another blood test 27/12 - so I’ll wait till then and ask for a bit more information

Thanks @SewingBees
That rings a bell now you've said! This is why I have a little notebook and write everything down!

As for the folic acid - Id better not be secretly pregnant and no one has told me 🤣🤣🤣

@Florabritannica
Going down to a c cup has been life changing! Can now run, buy normal bras, etc 🤣🤣. I'm 3 years post radiotherapy now and the pain has lessened over time, although it's still there. The scars have faded a lot aswell. Good luck with your op!

My neutrophil count is 1.94
Wbc 3.2
Platelets 406

All out of range along with a few others showing red on yesterday's blood test

Supposed to be having chemo and immuno tomorrow morning

Wondering if I'll get a call saying I can't have it.

A little knowledge is a dangerous thing... being able to see blood results isn't necessarily helpful. Yes they're out of range but I don't know if they're supposed to be after the last chemo/immuno

@lucysmam
What happens if you just don't answer when they ring?
Surely they'll just have to ring back later?

@Tilllly I have no idea 🤷‍♀️ I've never missed a call...yet. I'm guessing they wouldn't sign off the next months meds if it was the oncologist.