Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

So sorry @Littlecaf

That’s such sad news @Littlecaf

Thanks all - I didn’t know her very well - but she was kind enough to give me her number and we messaged a bit, she gave me some great advice when I was having dark chemo days. I’ve googled her name and there are so many obituaries of her already - seems that she lived a full life with a very successful career and was triumphant in her main hobby - I’m sad that she’s gone but happy that she lived an amazing life. Such an inspiration. I’m seeing the loss as a marker for me and other to embrace hope & opportunities that we are given. Feeling blessed to have known her, albeit briefly.

Sorry - more about me today - had my radiotherapy planning appointment today with radiotherapist - there’s no places until end of May. They originally told me mid March - so pissed off to be waiting another 6-8 weeks! Was hoping to tie over time off work until after radio but looks like I might have to go back to then be off again. Grrrrr. My main oncologist was at the meeting too which put me in a spin (he’s one of my mental health bogeymen) - but he did say that my cancer was fuelled by the HER2+ rather than the ER (which was only 3 out of 8) so Tamoxifen wasn’t making much of a difference to reaccurence prevention and I could stop if I was having horrible side effects.

@Littlecaf that looks like a mixed bag of news. I hope you’re doing ok. Things just take our feet out from under us at times.

I’ve had bloods today ahead of tomorrow’s treatment. This will be 15/16 and my 3rd EC if it goes ahead. If it does, I’ve been granted permission to go on a short weekend break a short flight away with ds for his 25th birthday, booked a year ago before any of this happened. There is a one off event for him to attend. I have an insurance quote and permission in principle from my consultant. I had hoped to hear before “close of day” - hoping I don’t get there tomorrow afternoon to be cancelled.

I hope everyone else is doing ok. This is all such a marathon.

How’re you doing @BatshitCrazyWoman ? I hope you’re comfortable and able to rest.

@Littlecaf

Could you have your radiotherapy at a different hospital? I did that.

Does radiotherapy have time guidelines to be given? Could you apply pressure if it does?

Oh @Littlecaf these delays are just so derailing, aren't they. You think you've got the next while all planned out, and then bam! something goes pear shaped.

I hope your bloods are okay @dancingwhilstfacingthemusic so you can have your chemo and then get away. I'm sick of the sight of my house right now, I need to plan something, too.

I'm okay, not in any pain at all, can do all my exercises easily. I need to be careful not to do stuff I shouldn't because I really haven't got any pain. I have, however, had a bit of a groggy day today. Maybe it's left over anaesthetic, who knows. I've had several sleeps, and am currently eating cereal and watching a bit of TV, then I'm off to bed. I've been quite badly let down by my 'D'P (we don't live together) who stayed with me for a couple of nights. He just wasn't at all caring, not even offering me cups of tea, in fact I made him multiple cups of tea, and dragged stuff that needed moving around the house, took the supermarket delivery in .... 🙁 Wanted lots of praise for driving me to pick up a prescription, though (I could have got an Uber ....). My lovely friend is coming tomorrow, said she'd do a bit of hoovering then we can go to a cafe. Women are just better at this stuff. Sorry, rant over.

Follow up on Saturday, the surgeon should have results back by then ...

@tothelefttotheleft she said that it’s because of lack of staff. They’ve got positions unfilled and they can’t recruit. Staff left after Brexit. (I didn’t vote that way!) Not sure about guidelines, I know the surgeon said my radiotherapy can’t be before 12 weeks after surgery - I will ask about another hospital. They originally muted sending me to the Marsden if there wasn’t enough space at my local hospital. I will ask again.

@Littlecaf

My chemo ward was under staffed. It was scary.

@tothelefttotheleft I had one session where mine was so clearly understaffed. They burnt my arm with the chemo because nobody was quick enough to pull it out when I pressed the buzzer - makes me annoyed to this day. At least my radio is preventative rather than my primary treatment.

I don’t think I’ve posted for a couple of months -so I’m just catching up …
I started my chemo in November 4 cycles of nab paclitaxel 3 weekly and a year of herceptin .. following my single mastectomy in September ..
I lost all my hair as I didn’t want to cold cap , I’ve put a stone on and chemo has been rough..
I had my last cycle 3 weeks ago and I’m back for herceptin alone tomorrow . I too find it hard to look at the menopause boards because I was taken off hrt .. despite being hormone negative and went into full chemo induced menopause which is horrific ..I’m struggling so much with it all .. It’s affected me quite severely cognitively

@Rockschooldropout so sorry to hear your troubles. I think there’s a lack of understanding about HRT & breast cancer generally in women of our age. I’m 44 and I think I have a chemo induced menopause happening too - I have to bite my tongue when friends moan about perimenopause. They literally have no idea. I know it’s all relative but really, not in front of the cancer patient. 🤦🏼‍♀️

It just feels like an added insult on top of the cancer treatment doesn’t it .. I’m lying here with steroid insomnia and hot flushes and burning feet .. can’t wait for the joy of the herceptin reaction 🤪
Im allergic to her rotini do have cannulated pre meds .. they’ve said I may have my herceptin by infusion going forward

Waving at the steroid insomnia crew. At least I’ve had a catch up with my bro who is on nights and on his break 🙄

it really is an added insult @Rockschooldropout it’s all hard enough without the extra stuff.

I do my last treatment in just under 2 weeks before going on to letrozole. I’m hoping my brain won’t continue to scramble more as I need to get back to work as my savings go down - my job needs a clear head.

I’m also going to book on the “moving forward” course at Maggie’s. Can’t believe I’ve early done 16 chemos. If felt insurmountable first - very glad of the support here.

Ask about olanzapine for steroid induced insomnia. I was given it as additional anti sickness but it completely knocked me out. Was great as I took it day before, day of and day after chemo.

Solidarity with all the menopausal women here!

I'm doing okay (probably doing too much, frankly) post lumpectomy. Follow up wth my surgeon tomorrow for the results 😬 then I'll know if I need more surgery, and will probably be switched from Phesgo injections to Kadcyla infusions. But Phesgo today. Fortunately I normally just get aching legs after it, which is nothing compared to the side effects from 16 chemo cycles!

Now I just need my taste buds to recover and my appetite to return so I can eat and gain some weight back, and I'll look less 'cancer-y'.

@BatshitCrazyWoman all the best for the results. You deserve good news free all the ups and down. Will have fingers crossed for you.

Thanks for that @aodirjjd I start antihistamines tonight as I’ve just done the first filgrastim and they help with the discomfort - also helping to knock me out. Fingers crossed!

Unfortunately for the 2nd time in a row I didn't have enough white cells to have chemo on Monday, but have just managed to scrape enough together to get over the minimum so will go for round 3 this coming Monday. I'm so frustrated by the delays, but they are going to reduce the strength a bit to see if that helps and I can actually get 3 rather than 4 week intervals.

I really need my chemo to be finished as soon as possible as DH has just had 4 out of 6 and will then go for a scan. If it's good news then he will go for surgery and I have to be well enough to cope with that, especially as it won't be at our local hospital but a couple of hours away. I know I can't change my treatment but if there are things that can be done to get me back on track then I need them!

In other news my Picc line is in a really annoying place, low down on the inside near my elbow crease bit and it just interferes with everything. The hospital tried to make it less irritating on Monday but it's no better. My arm is also very painful & still swollen from the thrombosis and that doesn't show any signs of going so all in all I'm feeling a bit fed up.

The weather is crap too, but at least the daffodils are showing which cheers me up a bit.

@Rockschooldropout does your herceptin come as a Phesgo injection? I think they can give antihistamine if you have a reaction. It’s not a pleasant feeling. I’m 10 out of 18 done and they have got easier.

@frostyfingers glad you’ve crossed the line to go for Monday. Hopefully a reduction will help get the last few moving on a better timescale for you. dH is motoring on. I hope he’s managing ok and you’re managing to support him as you both work through this.

bugger re the Picc line and the arm. It’s been non stop nonsense for you.
I hope your area also gets the sunshine that we are forecast tomorrow. Should be good for some daffodil sightings. 🌼🌼🌼

glad to hear yours are getting easier @Littlecaf

Waiting for IV anti-emetic, Lordy I feel rough with this coupled with the steroid insomnia.
Day 10 as inpatient and 2nd round of iv chemo started today. I’ve been put on a nightly chemo tablets as well and 20mins after I’ve had the vomiting starts despite oral antiemetics an hour or two before.

Phesgo is different. It’s herceptin given with another drug - I’m just getting plain. Old herceptin .

I’m five in now .. I have pre meds each time but still react so now I’ve finished my chemo I still need pre meds vi cannula so I’m probably going to have it infused as I’m cannulated anyway 🫠
Ive still come out in a reaction today too . Covered in a rash again 🙈

The steroid high just sucks doesn’t it .. I just can’t keep still . annoying S I shouldn’t need it all now big without if the herceptin would put me in an and e ..
oh to sleep ., my brain is scrambled too .. without hrt I feel like I’m losing my marbles
16 rounds is no mean feat .. it’s amazing how fast everything seems to go once you are In the eye of the storm

Checking in again with the steroid insomniacs. Gentle hugs to you @hennipenni You're further to the end of this thing than you were ten days ago but it all bloomin sucks bigstyle.

I’ve done better on the initial sleep tonight - bath, magnesium salts, antihistamine - which knocks me out. Last dose of steroids up today and onto second tier anti emetics plus the “basic” one we all get. Also, filgrastim. I feel like I have almost hourly alarms on my phone for meds! Just work, medicine, that’s what we need.

Hope everyone is rattling on ok.

Ladies, can you talk to me about hair loss? How did you (or indeed did you) embrace it?
Did you decide to shave it all off once the loss started? Wait for it to continue to fall out if it’s own accord? Mine is starting to come out in handfuls today 😢
I was expecting it and been quite upbeat about it, but now it’s happening…….
I’ve already been looking at scarves etc to wear