October 2023 chemo starters

[scientistamafier]

I totally forgot that I am in touch with someone who is also having chemo at the same hospital. We are in touch via WhatsApp so I sent them a message asking what was in their hospital pack.

[helsbadger]

Good luck ladies! I had my dates through today and my first chemo is on the 17th. Starting with EC. Xx

[pinklilli3s]

Had first chemo treatment yesterday. On paclitaxel and pembro and carbo. The cold cap and hand/feet sleeves were cold but I got used to it and I visualised behind somewhere hot when I was shivering. Do take a few layers. First time I was prepared on the entertainment front but not so much on the clothes front. I actually ended up watching “this morning” and chatting to my friend who was a greatly appreciated distraction
A roller coaster of side effects once home but no major reactions tg yeah. Talking to myself out loud in the house and saying it will stay like . All side effects manageable, I never moved so quickly once an episode of sickness/nausea got to me and I reached for my meds so fast I didn’t recognise myself!!
Aside from that all ok. Steroids kept me awake but I knew about it. I could have gone for a run at 3am and I don’t even like running, just to keep my brain quiet!!! Dr said to Change the time I take them at . Scalp is really dry so invest in some vitamin E oil/cream. Started shading and need to find cotton/silk cap.
The most annoying is the sickness. The steroid unblocked my nose big time, had COVID last year and my sense of smell and sinuses are still inflamed. But I do have a powerful sense of smell originally so all smells are even more intense right!!
All the best for those going through it.

[scientistamafier]

I would be interested to hear more about your experience with the cold cap. I am thinking about using it, but the nurse made the starting part sound bad.

I bought a silky head covering from Boots today when I was picking up my other toiletries.

[pinklilli3s]

Do you know which cold cap you’ll be using? They use paxman at my hospital. It’s like rugby cap filled with telly cold and when they start it, make you sure you have your glasses in as it’s difficult to put them on! (If you wear glasses) they’ll fit you w a hand band to protect your forehead, avoiding headache.
I have cut my hair short but left some at the front so the side were more sensitive. After a few minutes, maybe 10min I got used to it. You can’t hear very well as it tend to cover your ears.

Here is a as silly photo of me. When I need the toilets I had to be unplugged that’s the only downside.
Nurses convinced me to give it a go and make sure you wear layers.
Invest in scalp cream/oil , mine is really dry. Ask them about what to do in advance of the treatment. You can oil hair but not few days before I think. They wetted my hair and apply conditioner to keep it moist. Basically your hair follicles get midly “frozen”
I could stay in boots for very long due to nauseas and I did look for caps but just bough a silk pillow case from Amazon from the safe neutral smell of my bedroom I might give boots another go! Good luck !🩵

[copperycat]

Thanks so much for sharing your experience it is so helpful. Interesting about the scalp oil, I am making a list of things that people found helpful for when start. How are you today? I am sorry you have had a ‘rollercoaster of side effects’, but manageable, fingers crossed it stays that way! sending hugs

[pinklilli3s]

I slept better last night but constipation knocked on my door and nausea oh la la Steroids defo improved my sense of smell!!! Had gscf infection too yesterday so have a feeling it’s also affecting me, achy body. Might be a low energy day today but will take the anti sickness and steroids again at lunch time and might go for another nap!
Ask the nurses about what you can put on your scalp and I think “look good feel better” does workshop too. Thank you for asking and good luck with your treatment 🩵🩷🩵

[Shi]

if your antisickness meds not working do ring your team and let them know they will tweak them till they get right combination for you Shi xx

[pinklilli3s]

I’ve let them know and they advised to take them 20 min before food… I’ve done that this evening. Let’s see if it works

[scientistamafier]

Thanks for the information (and excellent photo!) It sounds like the same cold cap will be available to me. The nurse certainly described the two different caps with the top one using a chin strap.

I have decided to go for it, on the grounds that I can always stop it if it gets too uncomfortable.

[copperycat]

@pinklilli3s , hope you are doing ok. I’ve been thinking about you and hoping no news is good news

My mind is going into overdrive these past few days. The closer my start date gets, the more anxious I feel. Hopefully will be ok once I get started! Can’t sleep very well and having nightmares so I’ve downloaded the Headspace app to see if that will help

Also totally preoccupied with wigs, hats, hairpieces, and have ordered a wig! I’m not very taken with turbans and long patterned head scarves! I think I might look like one of those bohemian women from the 70’s wearing long flowery evening dresses with a baby Cham in one hand and a cigarette in the other ( not that I smoke). Think I’ll stick to beanies! Also does anyone else find those manikin heads on the wig and hat sites creepy? Row after row of the same manikin- No wonder I have nightmares !

Thinking also of getting a hair piece for the edges of a hat. Not sure if anyone else has one?

Sorry I’m waffling now. Hope everyone is doing ok, sending good vibes xxx

[pinklilli3s]

I’ve gone a the same reasoning. It does make my scalp itchy and I have invested in a silk pillow case #expensive
I’ve started shedding. I was shedding befor treatment probably stress and being end of summer but I am prepared to shave it off if needs be. I won’t be 100% happy about it but at least it will be my decision!
Have they told Yiu when you start treatment? And which cold cap you’d like to use? Gwen xx

[pinklilli3s]

Omg nightmare you reminded me, I had nightmares about eyebrows that they had been painted like creepy white clown guy
I stopped looking at hair stuff but I was sure I’d shave it but the nurse convinced me that it helps regrowth so let’s see and it might delay the side effects. I “washed” it, meaning running hot water through it and it was lovely. Awaiting to receive special shampoo/conditioner, I expensive me think but probably won’t use it much and could keep it for later
@copperycat do have a look at September where I leave som updates too as I as was due to start then and I am in between:)

I seem to have a lot of salty cravings and had to change my anti sickness as was giving me -i think- stomach cramps and I am on cyclizine which is better for me as seems to work.
It’s normal to go in override but do try to do out and enjoy teh moments before chemo starts as you might feel fatigued and wish you have done more. Have naps and rest when you can, have a PJ day, it’s a well deserved day and book yourself to see your friends /family

[Shi]

Copperycat once you’ve ticked your first on off you will settle into routine think a lot of us were just the same before starting chemo I was armed up wigs, turbans, thinking I’ll style it out like a swish liz Taylor type in a turban, but for me I ended up looking like a spare out of carry on up the khybur do they were dropped off at my local Macmillan for others to use many ladies look stunning in them I wasn’t one of them Shi xx

[copperycat]

Thank you, I have had a wee look at the September threads and can see you have had a bit of a time of it with SE and things hopefully now getting sorted for you meds wise. You sound like you are on it , though I am sorry you found you need to be

Just heard this morning that my brother from France is coming to visit. Not seen him for a long while ( pre Covid) so that will be lovely and help keep my mind off things pre chemo ( also give my poor hubby a break )

Hope your weekend goes as well as possible

[copperycat]

Yes Shi - Liz Taylor! Exactly . I know a lot of ladies can carry this off but not me

[pinklilli3s]

@copperycat are you french? I am.
Hopefully mum comes in November. My partner and I met during COVID but he lives in London and works in Essex so it sucks as we don’t see each other during the week where I would need his help. He also does not work from home so am alone, though not always lonely as supported by friends
Not sure I understand what you mean by SE?
Coming off the Dexamethasone today and I feel the hit of low energy and nauseas still woken me up at 4am. I think that’s when my blood sugar dip and it gives me heartburn.
Finding something to that I want to eat in the morning is really a struggle especially if I have to cook it
The gscsf injection is making my whole body hurt back and sternum!!
Painkillers are you come. I do a bit of cdb and it helps calming myself and not tense up.
Managed to make myself fresh orange and lemon juice w grated ginger, helps take the edge off if nauseas.
Sweetcorn and tomato for breakfast as we speak!! My food tastes are so weird but I’ll eat anything I could want at the time and tolerate
Hope you have a fabulous weekend 🩷🩵🩷

[Shi]

I ended up with lost of wig steroid induced shopping was my excuse tinsel one’s for Christmas, coloured bobs just because I could, just any excuse for new wig really I don’t look like liz Taylor but I thought I could style it out in a turban I couldn’t and I’d seen so many ladies looking so stunning in them Shi xx

[pinklilli3s]

You’ll have to show us Shi and share the website!!🩵🩷

[Shi]

Just Amazon Shi xx