My sleep is all over the place. I don’t sleep in the day at all but wake about 8 times during the night hot and cold. Without fail, I wake at 4am and can’t get back to sleep.
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@jacsm thanks. Another weeks delay to my chemo as I’m back on antibiotics. The one on my leg is mow classified as a leg ulcer. They are healing and no longer swollen but the dr wanted my to have some stronger antibiotics to ensure nothing nasty. I’m fed up ad no answers why ive got them or what happens next.
Hope everyone else is keeping well xx
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Broken sleep here too but oddly not even tired. Previous weeks id be waiting for 8pm so I could judtift getting into bed and I’d probably not see 9pm but now im still watching tv sometimes until midnight and then I’ll still see every hour from 3am.
Sorry to hear another delay @dragonfly2 im always assured bu others it’s normal and to expect it but stull disappointing nonetheless. Hope you’re ok. This week ive been fighting a cold and wondering if my chemo will go ahead Friday. Felt bloody awful plus ive got oral thrush and the worst cracked and dry tongue. Ive seen every hour as my mouth is so dry and painful. Picking up my wig this afternoon and taking my 8 year old who asked to come and asked if she can try a wig on too!
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@letsdothis ouch that sounds painful. Can your unit not give you anything to help with your mouth and tongue? Strangely i’m more fatigued from not having the chemo - keep having little capnaps in the day and then bed at 8.30. Hoping to restart chemo next Wednesday as its throwing all my plans for May out the window xx
They gave me something yesterday for the thrush but think it takes a few days to kick in. Cracked tongue is from chemo and but the cold is the cherry on top as im breathing through my mouth so my tongue is all dried up!
Ive also lost my taste!lol and not sure yet if its from chemo or my cold. Watch this space…
You obviously need the rest. Do it while your body lets you x
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@mrsjelly glad round 2 isn’t too bad. Hopefully it continues that way
@jnra I am sorry you are having a 
2nd round. May be worth calling the clinic or your nurse to see what they can help with.
Is it the side effects?
Morning all, hope those of you that are having a tough time with side effects see some improvement today.
Third round of EC for me today after spending all day yesterday at the hospital. Woke up with a headache - and that’s before the cold cap! 
Although I did get some positive news yesterday as well, biopsies I’d had back in December from ‘areas of concern’ from right hand side (mine is left) came back as benign, so I can now breathe again…
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Great news @leelee1
Positive news at this stage is fantastic for getting us through. The wait for results is some of the hardest times.
It is reassuring to hear that I am not the only one who can be in bed by 8.30 but awake again at 1am, then clock watching til 6am.
The cold cap gave me migraines so I was given amitriptyline for the migraine.
They were fab for a good nights sleep as a ‘side effect’
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Ladies, can we talk periods please?
I had my coil removed 3 weeks ago in preparation for EC. I haven’t had a period for 15 years and it has returned as the weekend….erghhh….
I won’t be graffic but started like blood clots and not very heavy, and today I feel like I am peeing blood! I have leaked everywhere only an hour after putting a clean sanitary towel. Please tell this isn’t a side effect and that it will settle. Could the chemo be causing me issues that I haven’t read about?
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@fimac1 I have low platelets so oncologist wanted me to get checked, so I was at ED/gynae all of yesterday for this exact thing…
It’s probably a good idea to get checked too as if you have low platelets (chemo can affect your bloods) you will have problems clotting, which isn’t good.
In the end I got given tranexamic acid which is some kind of wonder drug and stopped it pretty much instantly!
@mrsjelly @jacsm yes I don’t think I’d realised quite how much I was holding my breath… they found a little more in the left, but realistically I’ll already be having surgery in that side so not as worried as I was as about the right… you are right, the waiting really is a tough part isn’t it!!
All that aside, now home, as EC cancelled for today (no small cold cap for me), so back tomorrow after my wig appointment!
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Did you get them from Amazon? Not sure which ones to go with. Have a little while to go as still have 2 EC before switching but definitely want to be ready. Will ask my team on the next occasion too but when I raised neuropathy at my very first onco appointment early on, they didn’t seem to give it very much attention (although maybe I was getting too far ahead of myself at that point!)
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Hey @indigo2 mainly nausea but now my whole body feels swollen and sore. After my first EC my liver enzymes were really high and I had to wait until they lowered. Just had blood test and it’s happened again so I think they’re going to stop EC and move me onto Paclitaxel. I’m relieved but also worried. However after this I also have radiotherapy and tamoxifen so hopefully I’m covered… 
@leelee1 I am getting bloods done tomorrow and see the Onc Thursday so will raise with them if stays the same or gets worse.
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Hi @fimac1
I had my Mirena removed on the day of diagnosis. Bled for about a week and experienced all of the discomfort I recall when I had periods as a teenager. Was heavy and unpleasant but of course did not have the unwanted bonus like you of treatment that could affect your flow.
Hope bloods come back okay. X
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Fluconzole will knock the oral thrush on its head, I asked for it to be added to goody bag of meds each round after getting it after first chemo and was able to keep it at bay each round as started taking tablets as soon as it started to flare up. Hope your kick in quick 
Shi xx
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I just put chemo induced neuropathy ice research into google and ploughed through the articles. Came up with the general consensus that it was well recognised but bigger control trials required.
The suzzipads were from Amazon and eBay but they were out of stock of the small however I think the large would be fine as you can use the straps to tighten them. I looked like Pingu when I tried them on! 
I have a cool bag that fits anll the stuff perfectly and extra ice blocks to change half way through.
I had a chat about it with the nurse specialist from the chemo unit today, they are not very pro as it’s not commonly done and it would mean a PICC and Im only getting 4 pax so compared to the infection risk we could consider an alternative. She said they could alternate hands each fortnight and still use the boots then ice at home. She also said that any signs of neuropathy are picked up quickly and doses reduced accordingly. I’m leaning towards this as she has had years and years of experience.
However with this game you know how quickly things can change!
If you would like links to the bag etc let me know and I’ll PM them to you.
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@fimac1 , @leelee1 I’m 54, I had my coil removed 6 months ago and no bleeding so far🤞🏻 hope it improves for you soon.
Great news on your biopsies though @leelee1 
@dragonfly2 so sorry you’re having such a rough time. Let’s hope these antibiotics kick in so you can get going again. You must be exhausted with it all.
@jnra talking about a rough time, don’t beat yourself about not coping with it all, your team are experts and they will help you choose the right path I’m sure. Thinking of you.
@mrsjelly how did the shave go? I’ve got a buzz cut now as my head looks like a map of the world with all the gaps 
My moans of the day are that my bloods are fine, which was a total shock as I’ve been breathless, floored and white as a sheet for days. It’s apparently ’just chemo’ so have to do less and listen to my body, how much less can you do?! . However, as a treat before getting ready for round 3 on Thursday I went out for lunch and I think I have food poisoning and haven’t been off the loo and have had to take Imodium 
oh joy.
Best wishes for the rest of the week everyone 
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Yes please, that would be great! I already have a PICC line so hoping it may be a go for me! Although I understand the paclitaxel infusion takes like 3 hours so that’ll be a long time without being able to use my hands 
concentrating on the bigger picture and will ask my mum to be extra entertaining during those infusions!