Oh @tigress42 I’m so sorry to hear you’re suffering so much and that the nurse has been no help, can you ring the BCN team instead? It’s just rubbish, is it worth posting on a couple of the previous month chats to see if anyone on those has had it, as they’re further along than us?
@emilyxxx boots has it for half price currently £3 for a bottle of shampoo, not sure how much it is on Amazon but just incase. Using the coconut and it smells nice
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I’ve phoned them for my sickness already. I didn’t know if I could take another tablet as I absolutely sicked the other up. She said no.
Why don’t you phone again. You might get a different person. Or tomo find a letter from your oncologist and phone the secretary on it. I would assume it’s the oncologist who decides how much of everything we have. Do you have a review appt with your before your next chemo.
I don’t know what else to say. You be ok at some point and i know we have to do this again but you’ll be ok before you get there. Sending a hug x
Do a search too at the top of the threads page x
Evening 
saw my Oncologist today before round 2 and all is grand on my bloods. Tweaking treatment to have mega antihistamine whilst I’m starting my cold cap cool down. All good. Anti sickness, pegfil, coedine all lined up. Hurrah.
Boo … hair on head starting to come out but just strand loss - similar to hair fall you get after breast feeding stops - using my lint roller on hair towel and bedding, working a treat.
All about eyes … story … very me!
Picture the scene, getting ready for work Xmas Do last year, trying to be a bit more girly. Dress on, full make up, hair done. Nearly time to go. Decided last minute to curl my eyelashes for a bit more oomph - did my left eye. Glanced at eyelash curler in my hand, there sat all my eyelashes perfectly guillotined off with my eyelash curler (as it didn’t have the rubber guard.) Arse. Grabbed a Xmas present I’d wrapped for my daughter - fake eyelashes and put them on over stumpy and my good eye so they looked even. Put my glasses on. Couldn’t bloody wear them … lashes were that long my eyes were either forced open or shut! Glasses free night. Couldn’t see a damn thing all night. Eyelashes ended up being worn by a male colleague…
The point of this tale of woe, I got a fantastic serum which helped grow my lashes back in a few weeks. Using it now on lashes and eyebrows. Cold capping has meant I cant wear my glasses during infusion, blind again, but a wonderful lady on the September group recommended armless ones - thank you Amazon arrived today.
All about the eyes. 
Happy Monday
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@tigress42 so sorry you are suffering 
It seems so wrong they are fobbing you off and not helping you at all. Were you taking Clarityn, as I know that has helped some people? I hope it improves for you soon!
Hi hun,
Although I’m on a different chemo regime, I had excruciating bone pain from side effects. I saw my oncologist today - 3 things hit at the same time: steroids stopped, injection kicked in and chemo pain. She explained all of these together led to the extreme pain - I was admitted to hospital day 5 - day 7 as it got to the point pain was impacting my blood pressure. In hospital I was given blood thinner, coedine and gaviscon. I was howling in pain (back and chest) on day 6. Oncologist stated I should always call. Always. If no relief go to AnE they should see you immediately.
Moving fwd I have #2 chemo on Wednesday ( yup, chemo Wednesday) I’m being given high dose antihistamines on arrival as I start cold capping. I take antihistamines daily 10mg along with the anti sickness. I’ve been given coedine for pain control as needed if paracetamol doesnt work. Ask for help. Call again. Shift staff do change. I can’t help with the neuropathy as everyone reacts differently but raise it at your next Oncology appointment. If you have varied sensation as well as pins and needles be careful with heat or ice without Dr advice as you can accidently hurt yourself.
Take care 🩷
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I’m so sorry @tigress42 x
You can still contact your GP for help too. Mine have been very prompt the minute I say I’m on chemotherapy (I was seen today straightaway and diagnosed with shingles 
) so they might have some advice or treatment.
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@tigress42 I’ve just remembered, in my first cycle I was offered gabapentin for bone pain when I called the helpline. My oncologist also suggested it. I didnt need it because cocodamol worked, but there is definitely other pain relief available x
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Morning all
Just thought I’d drop in to your chemo thread. I hope you don’t mind. The thread for my chemo month was so quiet and i really missed having the support of others so I try and make sure I leave little positives for others who are behind me on the journey as it sometimes feels like you can only find the scary stories.
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Cold capping - hopefully a picture of positivity but this is me after 6 sessions of chemo. My hair does come out in threads and will continue to do so for the next few weeks but then I hope it’ll start to thicken back out. It’s definitely thinner and I have to be creative with my parting. Anyway, just wanted to share for those of you who are seeing hair strands coming out during cold capping that mine did too but I didn’t lose it all.
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Those that are her2 - there’s an exiting trial in Europe and it’s in phase 3 and looks really promising - basically it’s like a vaccine for her2 cancers. It’s isn’t in England yet but I’m trying to find further information and will share once I hear more.
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Advocate for yourselves - please please do not give up if you’re not happy with the helpline response. I had a scary aura for 5 minutes and they wanted me to go and see my GP first. I had no headache and have never had an aura before - I was terrified. I pushed to be seen and was finally admitted - this is when they found out my neutrophils dropped to 0.3 and my temperature was low. I now have to undergo brain scans but if id waited for my gp or just left it who knows where I would be now. You know your bodies.
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Headscarves: there’s a lovely charity who sends out a selection of headscarves - you just pay for the postage…https://prelovedreloved.org.uk/
I think you’ve all found little lifts but there’s also the shine bright foundation who send out care packages and post surgery cushions.
- Non triggering guidance and info: hopefully non of you did what I did when first diagnosed and googled like mad. Honestly, biggest mistake I ever made - once you read things it’s so hard to forget. I’m not sure if you’re aware but Breast Cancer Now have some fantastic online events which we can attend. I’ve just finished the younger women with cancer and it was really useful.
Thinking of you all who have chemo this week. You’ve got this!
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Thank you @cass2!
I’m cold capping, and although I’m definitely shedding on cycle 2 and my scalp is more visible if you part my hair, because I cut it into a pixie it’s not really noticeable. Your hair looks amazing!
I’m HER2 Positive as well…that research sounds interesting! I know there’s a HER2 Positive thread but it’s so huge and everyone knows each other I felt very out of it and crept away after one post lol
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Thank you for your replies, I nipped over to September starters as well @loupy .
@lumpybyebye @dilly, will be call them again if it gets worse as you say someone else might be working. I ended up popping ice packs in fluffy socks so didn’t get a cold burn and I was able to drop off to sleep last night, it must be inflammation in my knees as well as everything else all at once.
I’ve been taking Lorraine and paracetamol @Mairead_49 before my fil injection as suggested in the chat, as hospital didn’t tell me to, but going to try ibuprofen tonight as well @story1 .Injection in my thigh is so much easier than my tummy area too which was also great advise to look at the information sheet at alternative places to the tummy I did for injection 1.
Going to have a shower and try to go for a very slow walk too.
@star25 will be writing everything down for consultant app on Monday next week, nab- paclitaxel is every 3 weeks, so definitely want to discuss if I need a dose reduction… roll on 13th November for cycle 2.
Appreciate all your kind words and thoughts 
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Thank you @cass2 I’ll have a look out for that thread 
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@rbf where did you get your knitted beanie from. I was brought some bamboo ones in July when I was originally expecting to start… but I think it’s going to be a bit nippy in November when my hair falls eventually.
Thank you for sharing your photo
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I’m just going to live in a hat until it thickens out again. I’m curious whether some of it will come back curly though.
Don’t give up on the thread. They’re really lovely and they’re all at different stages which I find really useful as there’s always someone who can offer guidance where appropriate. There’s also a few ladies who are a few years out and I find it inspiring listening to their adventures once treatment finishes. Xa
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I had a dose adjustment after my chemo got me hospitalised. I didn’t want the adjustment at first because I felt like my body was failing in helping me beat cancer. My oncologist phoned me up and insisted And pretty much told me in no uncertain terms that he is the expert and will deal with the cancer as long as I look after myself properly in the meantime so I can get through treatment without huge delays. He explained that it’s very crude how they calculate your chemo and it takes tweaking to find your personalised 100 percent dosage. A great analogy he used: Two people could be the exact height and weight and each have a glass of wine. 1 person won’t be affected by the wine but the other might feel tipsy. Same with chemo. Honestly, I’m so glad he adjusted the dose. I actually don’t think I would have got through the whole thing safely. X
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Having an ARSE day! Had day 1 steroids, lots of hair thinning continues, stress headache. Took myself out for a walk to clear my head bought cream cakes on the way home, plural. RIP cream cakes, they were dissolved upon returning home. Now sat with tummy ache as well, thxs IBS you b’stard. Can’t even self medicate with cake! No wonder my weight is going up. I thought at least this shit show would give me a chemo skinny bod. Sweary chemo dwarf has arrived. #2 chemo tomorrow…bleugh …
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@lumpybyebye so sorry you’re having a rubbish day x
I ate a huge M&S double chocolate Emotional Support Muffin yesterday because I now have shingles. I ended up with raging indigestion…
Tomorrow is a new day, and your second cycle will be another step towards being cancer free!
Swear away and hang in there xxx
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@dilly Im raging for you that you got shingles - I demanded (politely but firmly) to get the vaccine due to BC. I got it plus pneumonia, flu and covid. I have to get my second shingles in November as it is a 2 parter. Why the hell do they not just give us the bloody things without a song and dance. Arghhhhh. ^still Sweary now Angry and Grumpy have arrived as well. Grrrrr.
The pain must be bloody awful. Hope you can get it controlled. hug 🩷
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I had the vaccine last year because of an existing medical condition…and indeed shingles in August!! The GP said it’s part of the joys of having no immune system 
I’m actually ok, I felt awful on Sunday which I think was probably the shingles brewing, as I found them at the end of the day. Seen straightaway yesterday and onto antivirals, so feeling ok now.
Just sad that Cake Therapy seems to give me indigestion now. What a bugger!!
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