Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Oooh yes, my sleep has been rubbish, a little snooze is a good idea.

Absolutely no one is allowed in with us.. have they told you that people are?

@EachandEveryone yes, they told me it was usual for people to have a friend with them.

Gosh it must be a big space then. We can have someone waiting outside but it’s not worth it as it takes hours.

I've got private health insurance, so it maybe because it's in a private hospital that there's more room?

Oh yes that will be it

Gosh, I'm sorry you can't bring a friend. I'm at one of the main London hospitals and they let us have somebody in with us. My friend who had breast cancer treatment elsewhere in London could too.

They do say no children though which makes sense 😅

I've now had my first trastuzumab (every 3 weeks) and my first two cycles of Paclitaxel.

Remarkably I'm feeling pretty good and able to work and take care of the kids. There are a couple of days when I feel a bit more tired - and generally my sense of taste has gone totally wonky - but it's not nearly as bad as I thought it could be.

I've been fasting for 48 hours around the time of my chemo (eg the 24 hours before and 24 hours after) and drinking 3 litres of water a day and I genuinely feel it has made a difference. Might be worth looking up some of the research and giving it a go if you can tolerate fasting?

Being back at work is a bit weird. I'm working remotely for the time being, but everything else is normal. I don't feel at all normal yet though. I feel like I'm partly living on another planet that nobody else has been to.

@aodirjjd regarding the cold cap, I found the first session pretty grim with nausea etc too. However, the following sessions were much better and I felt fine. So much so, I continued with the cold cap through weekly paclitaxol with no problems. I also found I had to snack continuously for the first day or so after EC to avoid feeling sick due to an empty stomach.

@TopOfTheCliff i used the cold gloves a few times during paclitaxol after I started getting neuropathy. Non of the nurses on my unit had experience or an opinion, this was during early 2024.

@BatshitCrazyWoman I bought a couple of pairs of joggers for chemo and did find these more comfy as my jeans quickly became too tight. I had a port so had to have access to that which required shirts or v necks and cardigans etc. If you’re cold capping, you will get cold so a blanket is needed but your unit may provide that. Otherwise, I used my iPad and kindle and phone.

A big plus was that during the paclitaxol weeks, they gave an antihistamine and that just sent me straight to sleep! I loved that!

@drivinmecrazy sorry to hear about your results. I had a similar situation where they found a second lump on the MRI. They were pretty sure it was benign and it was the same breast so I was given the choice of an immediate mastectomy (with reconstruction) or test it and if benign I could do chemo before surgery (hoping for lumpectomy). I chose the latter but still ended up with a mastectomy after chemo (by choice at that point).

it is a frustrating setback and unfortunately these do happen during treatment sometimes too. Hope you’re feeling relatively ok today.

@BreakfastClub80 thank you that’s a helpful insight. Fingers crossed the nausea and headache from cold isn’t to bad. I’m presuming since you presisted it work quite well and you kept a lot of your hair?

@aodirjjd I kept about 40/50%. The EC was the worst and I lost a bit at about 3 weeks after the first cycle, then more towards the end of the 4th cycle. It was a little patchy then but I’d had it cut into a bob so I could cover up most of it. It started to grow back during paclitaxol. It’s short now as I gradually cut off the old bob but is growing well. I was very conscious about my hair, so am glad I did cold cap.

If you use Instagram, take a look at Liz o’riordan (oriordanliz). She did a live last night on cold capping and it’s on her page. www.instagram.com/reel/C_gacfUgCYL/?igsh=Y28xc3UyYzZlcW12

Start my first round of EC on Monday. Have very dark hair so being a bit bald will be very obvious on me. Thank you for all these posts on chemo and cold capping. I will definitely watch Liz as hoping to at least try with cold cap. Really appreciated x

I was searching for hats/head coverings this morning. I feel like I need to be prepared (even though I'm going to use the cold cap). I stopped because I was finding it a bit upsetting 😞

Have a look on Etsy. I can barely remember my baldness the worse Part was getting it shaved off but it was a relief. I never used my wig as the weather was so hot but now would be a good time to look at wigs as they can be warming. I had great long curly hair but honestly it was the least of my worries I knew I wouldn’t cold caps I just wanted to be in and out of there and it just added too much time. My hair grew back with in weeks of stopping chemo. I invested in some great ear rings and wore those already made turbines and good make up. I splashed out, I must admit.

Steady as we go, @BatshitCrazyWoman it’s crap eh? I’m hoping to cold cap too and am planning to cut my hair to shoulder length or a bit shorter.
Im told it doesn’t start to shed for a couple of weeks. Sigh. My friend who lost her during chemo said hers started to grow back after her 5th cycle.

@dancingwhilstfacingthemusic I think it's the 4 cycles of EC that will cause the shedding, the other stuff afterwards doesn't, apparently. So hopefully it will start to grow back then. I have shoulder length hair already, I did ponder having an inch or two off but probably won't. I'll also be investigating wigs ...

@BatshitCrazyWoman at my first cycle they gave me a wig referral. I thought that was quite good as it means I know what to do/call if I do need it and I don’t need to ask for it if I need it or wait till my next medical appt to get it. I’ve bought a couple of head coverings as well because I had visions of being to upset to leave the house and waiting on one in the post if it happened quickly but tbh I didn’t find anything I actually liked so it’s hard to imagine actually wearing them anyway. I’m a week on from first EC tomorrow and my hair feels totally normal but I know that doesn’t necessarily mean anything this early.

Fifty bloody seven today. When will this nightmare end it’s coming up to two years now.

Bats hair loss is upsetting, really upsetting. Like Each I decided not to cold cap, wanted to be in and out of chemotherapy sessions as quickly as possible, didnt fancy the process and was unconvinced by the benefits. No one right answer, we all have to find our own way through.

I bought lots of cheap and cheery cotton caps, some nice beanies and one v expensive silk scarf. Two wigs. I set up a quiet spot in a little used room with all I needed and would disappear in there to choose my look for the day. Like Each I spent a lot on make up. Didn’t use the wigs after a couple of tries. Two of my granddaughters absolutely loved joining in, which I found healing.

Started chemotherapy in May last year. Loss v rapid. Hair is now sort of normal, and I no longer look like a ‘victim’ or a ‘patient’ which is bloody great.

A long winded way of saying solidarity, it’s shit, you will find your way through.

Happy Birthday @EachandEveryone. Hope you have something nice planned for today and sorry it's two years counting. My onco only got so far down my treatment list and then said "we'll deal with that when we get there!!" 🫣
Hope you find something nice to distract today.

Happy birthday 🎂@EachandEveryone

Hope you have got some good things planned today

Happy Birthday @EachandEveryone , hope you have a good day xx

@BatshitCrazyWoman I started chemo this time last year and mostly wore a wool beanie hat if my head was cold (indoors and outdoors). I did splash out on other head coverings but didn’t like any of them and so preferred not bothering as I did have a fair amount of hair and in the end I didn’t lose enough to bother. I wasn’t going out a lot though, so might be different if you work. I also got a wig for Christmas etc and wore it a few times but not much.

The other thing I did was use a silk pillowcase and I tried a silk turban, though it often slid off.