I think I’m going to be a May atarter, waiting for an oncologist appointment which I’ve been told will be
in about three weeks, so I’m watching this thread with interest as I’m very nervous about it.
Sarah xx
Hi mustardandgrey
Welcome to the thread. By all means join in whenever you need to chat or want advice. It definitely is a good idea to prepare as much as possible.
I will start a May thread nearer the time.
Sue xx
Hi everyone chemo was Sat and feeling shivery and nauseous today. Took antisickness pill this morning. Guess it’s just a question of drinking lots of fluids
Hi Michelle21 I cold capped too. Wasn’t as bad as I thought. Nurse told me to wear a sports handband which I think really helped. Haven’t washed my hair yet, thinking I might do it today or tomorrow.
Thanks Dealdoh x
hi I’m sorry got it wrong it’s a Hickman line I’m having got my date today it’s on the 19th .next week I got to start chemo on 20th don’t know for definite.Anyone had a Hickman line so nervous not sleeping well
Hi Ladies
How did your first chemo go Sally?
Gygi sorry you’re not feeling so good. If you’re shivery keep an eye on that as it could be a sign of an infection. Check your temp and give your chemo line a ring if in doubt.
Cassie x
Hi Saffyron
RE. hair loss… I did lose most of my hair, unfortunately. Mainly on top, with a little left at the sides and back. I had my hair cut short before hand, and used scarfs bought off amazon. I would recommend a sleep hat, because you do lose a lot at night and it can make quite a mess. Some shave it all off, which saves the mess, but I wasn’t brave enough! I only lost a little off my eye brows and lashes, so that wasn’t a problem for me. It can be upsetting to start with, but then you sort of get used to it. My hair grew back quickly and I didn’t need to use the scarves after 4 months. Now, 18 months on, the Chemo curls are gradually growing out!
The steroids can cause disturbed sleep. I didn’t find a way round that. But I only took them for 3 days and then when I stopped it was fine.
Hope this helps
Sue xx
Thanks Cassie, temp has stabilised and feeling much better thanks x
Re hair loss. I didn’t cold cap. It was more or less out by 16 days. I had it cut short first for fun and to make it easier as I had shoulder length hair. Once it was looking silly my hairdresser came to my house and shaved it all off. If you do this put in your make up first so it helps when you look in the mirror.
Personally I didn’t find it too distressing though many do.
I’ve worn scarves - lots of our Jan ladies bought them in charity shops.
Also have a wig. Need a hat at night but did t like the cotton sleep hats they are too big for my head. I prefer a woolly beanie. The wig was from my chemo unit. And most people can’t tell. I’ll find you some photos.
I have been out bald too. It’s quite liberating !!
Embrace it all as an adventure if you can. These days anything goes. Your choices, try and take some control and remember it’s all temporary !
Hi Saffyron. I’m from the Jan thread. My oncologist prescribed zopiclone to help me sleep through the steroid period but it can be addictive. I didn’t take it for more than 5 days each round. A friend also brought me some lavender spray for the pillow. Xx
I also cold capped and have still lost most of my hair but because I kept some of the length, which generally isn’t advised, I have managed to cover most of the loss with a cotton hair band (not sure what they are actually called) so far. I am still losing hair during my T treatment but also growing a fluff! ? xx
I actually feel almost normal. Today was my daughter’s 20th birthday so I was a bit emotional earlier however we stuck with the plan to eat out and I’m so glad I did. It was good to be back in the ‘normal’ world briefly. Added bonus not feeling sick so actually ate quite a lot and enjoyed it!
Gygi - glad you are doing ok and shivers have gone. I didn’t find the cold cap too bad either. No hair loss yet although it’s early days, I’ve just booked my wig appt just in case. I’m useless at tying scarves and stuff so will prob stick with a wig if it doesn’t work.
Saffyron - Sorry to hear you’re not sleeping, I’m afraid I can’t help I seem to be sleeping for Britain. I do wake in the night but seem to get back to sleep easily enough. Maybe ask your medical team.
XX
Hi Kentish hop I felt queasy for first 3 Days and yes some smells were worse than others. I have found eating little but often helped. I made up a sandwich to nibble on and have tried to go for a walk everyday, I have found being in the fresh air really helps with queasy and I’m not panicked about germs! X
Hi Kentishhop, completely agree with Michelle and also keep taking your anti sickness medication, if it’s not working let your team know as they have plenty of others that may work. I would also avoid your favourite foods while you are feeling like this or it might turn you off them indefinitely! Hope you feel better soon xx
Thanks Michelle21 I’m feeling better just really tired as didn’t sleep too well last few nights. Happy birthday for your daughter. Glad you managed to get out and eating was fine. I made some cinnamon rolls yesterday (I’m gf) and they were lovely as a little snack. Wanted to walk up to the library this morning but been trying to catch up on my sleep. Need to get out there so going to try get out this afternoon. Kentish hop how’s it going today? Any better? I had a little bit of ginger beer to take the queasiness off. Saffyron how’s the sleeping going. I go to bed at 9 wake up at 12 and that’s it! Lie there resting but not really able to sleep. Well hope everyone has a good day take care Gygi
Hope you got to the library Gygi. I’m avoiding public places, I’m paranoid about infection. My nurse rang me this afternoon and told me I shouldn’t be too careful I need to try and carry on as normal but that is easier said than done! I have been out walking but just me and the dog, hopefully next week with back to school I will get back to my old routine a bit.
I hope those of you struggling with sleep have a better night tonight xx
Hi all, it’s really encouraging reading others’ experiences as none of you seem to have been completely floored by your chemo which is what I have been dreading! I have my first FEC on Monday so will feed back too! Had to go yesterday to have a metal trace marker put in to my tumour which turned into a huge palava involving 3 being inserted and a grand total of 6 mammogram pictures taken to make sure one was finally in the right place! Hoping everything else goes more smoothly…
Hey guys how are you feeling? I slept better which is great. Went and bought scarves from charity shops yesterday and supermarket. I think walking and getting a bit of exercise definitely helped. Going to go for another walk today. Michelle21 I have a dog too but unfortunately due to surgery can’t walk him. He and the cat are good company although the mess he makes in this weather!!! My partner sorted out the garden a bit yesterday as it was just so muddy! I’m back at work next week so hoping this sleep continues. Bit of a funny tummy and pain in my arm don’t think I drank enough yesterday so going to up it. Felt queasy yesterday went to the health shop and got these sweets called gingins and been drinking ginger beer. Just going to make sure I have tons of fluids today. Hoe you all enjoy your Friday G
Thanks for being here Gygi your post has just given me the kick up the backside I need! Glad you had a good nights sleep and are heading back to work, that’s impressive. I don’t work so it’s all far too easy for me to loaf around like ‘the sick person’ rather than getting on with life. And before all this happened that really wasn’t me! I’m guessing willsandNoah’s mum that you have to get on with life too with two small boys running around? What about everyone else?
So Gygi you have had surgery already. I haven’t, I’m starting with chemo and to be a bit fair to myself think i have been in shock! I hadn’t thought about how I’ll walk the dog after surgery, problem for another day I guess. We have a mad Viszla who needs to get out, like me really!
Have many of you on this thread already had surgery? Or are there some like me starting with chemo?
Mission today: get stuff done!!!
Have a good day everyone x