Morning Stargazer1, I fasted the day before and up until my iv started,, I appeared to have the text book sickness 5 hours afterwards to the exact time 5 hours later finished at 2pm sick from 7pm stopped at 12 pm straight off to sleep couldn't believe it xx when's yours again how are you managing?
I know you will find lots of help and support here. You are now part of the February gang. I am also waiting to start chemo in a few weeks. I have already had surgery, and have recovered well from it. Hope to see you on here again.
Advice for the cold cap. Wash your hair as soon as you get home. I ended up with a massive knot I had cut out as my hair was coming out and I was told to leave it a few days before washing it by the hospital. Comb it twice a day. I used an afro comb. If you are told you have lost too much hair ask for a paper theatre cap and use that under the cold cap. I lost some at the top and back but it grew back faster by using the cold cap. I used headbands for a while. My hair is still short, grey and curly but am looking forward to having highlights soon as it is 6 months nearly since finishing chemo. Feel free to message me if you have any questions. I used a Silke at night but also got some silk pillowcases. Take paracetamol before putting on the cold cap which I wasn't told to do. I used Palmers shampoo and conditioner and joined a facebook group to get advice too. Good luck.x I was on the May 2018 thread and we keep in touch still on a private facebook group with the intention of meeting up when we have all finished treatment.
Hi Seaside sar glad to hear you're 1st experience was OK it's different for all of us isn't, I had Netupitant/Palonosetron (anti sickness) given an hour before chemo lasting for five days before apparently being able to have metoclopramide if still needed but if sickness continues I'll ring them, Tonight my face is beatrout read and hot, head feels heavy but apart from that hopefully all OK, got worried last night just before 7pm temp hit 37.4 but then sickness started and it went down, take it easy tomorrow xx I had 5FU , epirubicin not nice worrying due to possibly leakages, cycloposphamide and docetaxel I believe in my session xx wee was pinkish for a while
Hi Seaside Sa
I am pleased to hear your day was a positive one. It's comforting to hear you were well looked after. I will certainly be taking some home comforts with me like a blanket and slippers.
On a more vain note I have just had my eyebrows re microbladed, although I did need written permission from the BC nurse! Certainly not in control of my body anymore.
I hope you have a reasonable night and get some rest. X
Thank you Seaside Sar for your account. I am going to increase my meditation practice as I am not looking forward to any of this. I will take a blanket and my slippers as you suggest. I hope to listen to music and podcasts. I am in awe of you.
Hello lovely ladies,
Thank you for your kind messages. I am home now and feeling pretty jaded. The nurse said I probably wouldn't have any side effects for a few days but it feels like they're starting already. Luckily I have a selection of anti-sickness meds to take as well as steroids which will send me a bit crazy! Here's to a long night ahead with little sleep!
My first impressions of chemo itself - it was fairly quick and relatively painless. The nurse sat with me for all 5 injections and made sure my arm didn't get too cold by using a heated pillow. I was offered hot drinks, sandwiches, juice and crisps. I think I was lucky as it depends on the number of volunteers they have in the unit as to how effcient the drinks service is, although they did say there is a kitchen where you can help yourself.
Cold cap - getting the cap to sit correctly over my scalp was tricky and the pulling which ensued gave me a headache before the machine was even turned on. The coldness was uncomfortable but more than anything, I found it stung a fair bit. I did have a smashing headache by the end and was glad when the cap was removed. I ended up with icicles on my head so I was pleased I had brought my woolly hat to wear on the way home. Funnily enough, my head quickly became quite hot and the headache magically disappeared.
Trixylady, I'm sorry to hear you've suffered with sickness. Have you got plenty of anti-sickness meds? If they're not working, ask for different ones as they would give you something else if necessary.
Good luck to all of you with upcoming treatment. You can do this. Just make sure you take a few home comforts with you - I took slippers and a blanket which kept me cosy. Also, take something to keep you distracted. For me it was a puzzle book which kept my husband and me entertained. What with my fuzzy brain and his dodgy spelling, we actually ended up in hysterics. Not too sure how the other patients felt about that but they didn't seem to mind too much.
Big hugs to you all.
Yayyyyyyy Go Yrixielady, go!!!!! So glad to hear of this, everything will be OK, you will see!!!!
Good Morning Trixielady
I am so pleased your chemo experience was a positive one. Sorry you were so Sick, what antiemetic did they give you. Reading all the threads it seems that Emend is the gold standard. I can imahini me fasting too but probably not out of choice I can never eat when is am worried and stressed. Rest up now and get over this first cycle. Take care x
Morning Stargazer1, I painted my nails a dark purple, wigs in ready for a week on Wednesday as nurse says it will start coming out then, can't decide whether to shave it ASAP when it starts.I did Fast for the day before and drank plenty nurse said to drink 2 litres a day of which I find difficult.big hugs Thursday will soon be here , don't stop enjoying the days in between, have fun with wig shopping tomorrow xx
Morning Trixie, glad it went well yesterday and hope you have the sickness under control now. Good luck for Thursday Stargazer x
Thanks Jencat, it went well until 7pm last night but days another day, I had Cold Feet playing in the back ground last night and my ears prick up whilst throwing up, it was about a breast cancer diagnosis. I eventually stopped being sick at 12. Hope you OK? Xx
Morning Trixielady, I'm so glad your chemo went ok yesterday and thank you for your kind message. I've replied to you on the Oct '18 thread x
I was so glad to see your post to SeasideSar and that yesterday went well for you. I’m hanging on to every positive post. I’m doing final preparations ready for Thursday, I am so nervous 😬. I had a scan yesterday, having nails painted today a dark colour & wig shopping tomorrow and then it will be ‘C’ day. Like you I will be counting down the weeks. Xxx
Morning Seaside Sar good luck for today, I found the whole procedure pleasant appointment was 11.30am got seen at 12 pm all finished by 2pm enjoyed my soup & sandwich provided.They are brilliant double checked all mediation to be used Nurse sat with me during epirubicin, otherwise no worries 5FU cycloposphamide and docetaxel went it pretty quick sat talking to my hubby & mam, I was given injection to take home and start on Wednesday for 7 days to apparently help raise my white blood cells, steroids to be taken twice today, prepare yourself to be feeling sickly about 5 hours after treatment doesn't happen to all but it definitely did to me but I was OK by 12pm and able to have some sleep xx 1 down 5 to go, be smiles you can do it xx
‘Mildred goes to war’ is my favourite bit. It is so short ( half way through where the music has more ‘punch’ ) don’t know why they didn’t make this section longer.
Actually the soundtrack to the film ‘Three Billboards Outside Ebbing Missouri’ is quite amazing. I have watched the film twice.
It’s a tough time isn’t it? I am a mum of 4 girls, 30, twins 19 and 15, they have been marvellous through all this as has my husband but I can’t help feeling guilty that I’m putting them all through this.
I start my chemo on Thursday and am going to try and use the cold cap too. I’ve been looking for tips on the forums about using it. I can’t seem to find out if it’s advisable to wear a sleep cap when using the cold cap. I also have a wig appointment on Wednesday. Xx
To all the ladies about to start chemo: you got this and I am keeping my fingers crossed for you.
You are all immensely brave!
I also start chemo on Wednesday. It's great to read everyones thoughts and feeling, it makes me feel that mine are normal.
I usually work with the health visitors as a Family Health Worker, and I was doing a uni course which has had to go on hold, but I am even more determained to finish it than I was before. Im a mum to 3 children 19,16, and 14. I'm keeping busy running around after them.
I'm planning to try the cold cap, so any tips will be greatfully recieved.
Seaside sar, thanks hun enjoy trying on wigs, my first time was difficult should have embraced it not worried about what was to come but the second time was funny and my friend asked all the questions before I even got the chance to think ie: washing styling, what happens if it get wet in the rain, how to dry it, what kind of brush, can you stick it to your head if it's windy, how will wearing a hat affect it. I finally chose a wig from Hothair called infinity shoulder length & straight in a brown and was so pleased my son thought I'd just had my hair done xx
Hi Seaside Sa
I hope your wig buying goes well. I bought one in a salon a few weeks ago. But of course I could not stop there and bought one on line. It's a lovely wig except for the colour!! I looked like Tina Turner 😂 not a good look for me as I am really blonde. Maybe I need to stick to the shop. Let us know how your fitting goes.
All the best for tomorrow. We can all travel this journey into the unknown together 💪🏼 If you feel up to it let us know how you get on 😘😘
First of all, I am so grateful for all of you who are posting on here as it makes me realise I am not alone.
MBJ - I'm really glad my blog was helpful and sorry to hear you were given so little detail from your onco. I'm impressed with your shopping spree! A lady after my own heart.
Trixielady - Like others have said, I feel your pain. I've had a weekend of feeling low, sad, depressed, hopeful and somehwere in between. It's so hard when we don't know what to expect. Hopefully we will feel more in control after cycle 1 as we will have some idea of what to expect. Good luck for tomorrow.
Tomorrow is my last day before chemo starts and I have booked a wig consultation. I am also planning to paint my nails in a dark colour to try to prevent the damage that the chemo drugs can cause. I feel a bit like I'm preparing for a prom, not for a nasty dose of treatment!
Big hugs to you all.
MBJ ,will be thinking about you too, this looks like how we're going to be doesn't it waiting & waiting even once it starts I don't think it will be any different,hopefully we'll fly through it and will wounder what we were so tormented and stressed about xx
Thanks Neecy, I'm pleased your boys have been home I think it definitely helps. Banana loaf sounds lovely . I hope your next chemo doesn't throw up any nasty surprises fingers crossed for you. Hopefully you'll manage to get plenty of rest, So far I've managed to fast and trying to drink plenty, the thought of being sick or constipation is awful. Here's hoping the time in between chemo is good to us all xx
Hi Trixie, crying as I read your post. You are definitely doing the right thing, by keeping busy and surrounding yourself with family. I'm day 5 following first cycle and I'm doing fine at the mo, just feel washed out. Both my boys came home from uni for the weekend and we've had a lazy time and I've even baked a banana loaf this morning for them to take back tonight... Though I'm lying down now, knackered now. Will be thinking about you tomorrow and all of you waiting.
Oh Trixielady I am right there will all those mixed up emotions. Good luck for tomorrow. I think a productive day is a good idea. Bed changing always gives a sense of achievement. I have two long more weeks to wait before my chemo starts. The waiting is torture. Hope to hear how everything goes and how you feel.
Morning Trixie, I hadn't realised your chemo was tomorrow, I don't know why, but I'd thought it was the 18th. Anyway, just wanted to let you know that I was thinking of you and sending a hug. I'm sure spending time with your family today will help xx
Well here goes ! The morning before chemo sat here looking at my keyboard deciding what to write, feeling I'm not even sure what it is I'm feeling is it low, sad, annoyed anxiety, scared do I even have the right to feel like this as there are people with a lot worse happening to them and having to cope with a lot more but this is a but and it's a big but and unfortunately, I now have to admit something awful is happening to me I can't see the keyboard for tears because it will soon be tomorrow and I'm scared and as scared as I've ever been so I've decided to change the bedding, go shopping collect my son from work later today and make is dinner (he doesn't live with us) but having my family around will definitely help. To all you lovely brave strangers I wish you all the love in the world because this is one hell of a journey and theses are wonderful threads. Hopefully I will manage to drink plenty and fast as I read this really helps so here goes xx
Hi Seaside Sa
I read your blog and thought it was really great. (I posted earlier today or at least I thought I did, I can't have passed the robot test!). My story is very similar although my BC was detected on a routine mammogram. My tumor was 30mm and I decided to have a mastectomy with reconstruction. I have also had a lymph node clearance and I also decided not to do the POSNOC trial. I did have an ONCODX test done (as I am 65 then they will do it with a positive lymph node). My score was 27. I saw the oncologist 2,weeks ago and my experience was very different to yours. He just said oh you have come for chemotherapy this is what you will have these are the sideffects sign here. I will weigh you now. Out in about 5minutes. When I got home I looked up all the drugs and started to panic worrying about if the risks outweighed the benefits. In the end I had to ring my BC nurse for advice. I have to wait until 18 February for chemo, the wait is endless feel as if I am living in limbo. Also my pre chemo check is one hour before my treatment starts so I am not going in prepared. Therefore your blog has been fantastic for me. Please let us know how treatment day goes.
Like you I stress shop, before Christmas I bought a 65"QLED TV whilst sitting on the settee (now there's a challenge to beat😆). Well my excuse was we had to cancel our holiday to Australia.
I have also bought makeup, bedding, wigs, and hats. At this rate I will be broke.
Good luck to you and Trixielady for Tuesday. I will be thinking about you.
Thanks Anniej for your reassurance and helpful tips. I had heard about honey being beneficial and have a local supplier near us so will get some. I haven’t been given any anti sickness meds yet maybe I will at appt on Thursday. Xxx
Hi SeasideSar Thankyou for the link to your blog. It does sound as though we will be having similar treatment. I too am having 3 FEC & 3 T but not herceptin and received very similar information. I haven’t been given any meds for nausea or mouth ulcers yet as I’ve seen some have. I’m having a weekend of indulgence, takeaways, meals out & wine 🍷😂 xx
I have been having 3 cycles of FEC so haven't had the need to use it yet. I have bought it in preparation for next 3 cycles of THP as it's the T that causes the problem.
Hi Kitkat, thanks for your post, it was really helpful. Having had one round of EC on Wednesday, I seem to have new symptoms everyday. Today I've had a dead arm and feeling of light headedness on and off. I'm finding it all overwhelming but your post was reassuring xxx
Hello ladies, just popping in to say that while I am sorry you find yourself on here, welcome to the club! It is great as a support group and if you read previous months threads you will get lot of your questions answered. Feel free to drop in to other threads with any queries as someone will have been there and done that. I found that this time before you start is probably the worst bit as you really don't know what to expect, followed by the first cycle because you don’t know what your new normal is going to be, so if it helps I would offer the following:-
Don’t suffer in silence, if your team don’t know you have a problem they can’t help fix it and they have lots they can do so don’t wait til your next appointment to discuss.
Drink, drink, drink, chemo is quite dehydrating and I find I need to drink 3 litres starting the day before you are dosed (to plump your veins) for 3 days (flushes the chemo out) then at least 2 litres a day throughout.
Keep a diary of how you feel throughout with chemo day being day1. This gives you evidence to talk to your team but also helps with getting ahead of any side effects before they kick in, as on further cycles you will recognise the pattern e.g. constipation (usually caused by anti nausea meds, needs to be treated asap). Don't worry that you are going to feel ill all the time for the next few months - there will be good days and weeks during your treatment and keeping the diary will help you identify and plan for them.
Cold capping or not, everyone dreads losing their hair which is such a big part of our identity. For those who don’t cold cap, many of us found that the worrying about when and if to shave was the worst part and actually doing it brought a huge sense of relief, but do what is right for you if and when the time comes
I notice a few queries about nails and having just completed 4 fec my nails are longer and stronger than they have been for years. That’s because I have started using rubber gloves, and a good quality hand cream and nail oil several times a day without any polish. It is the T that does the damage apparently and I will be trying polybalm and/or dark polish during the next phase of treatment.
Wishing you all well ladies, keep talking and we will get through this x
Hi Seaside Sa.
I have just been reading your blog and really enjoyed it. It brought back so many memories and feelings of my own cancer experience. Some the same and a few different. Mine was diagnosed from a routine mamogramme in October. It was bigger than yours 30mm so I decided to have a mastectomy and reconstruction (not an easy decision and my pain and recovery have been challenging) Like you I also decided against the POSNOC trial but did do the ONCO DX trial (I am 65 so having a positive lymph node was acceptable for the trial) .My score came back as 27 so I am now waiting for FEC-T to start on 18th February. My oncologist appointment was nowhere near as informative as yours he just said oh you have come to me for chemotherapy here are the sideffects let me weigh and measure you, job done. I spent the next 4 days worrying whether to have the chemo after reading all the awful sideffects. In the end I had to ring my BC nurse to discuss my worries. I am not having my pre chemo appointment until an hour before my treatment begins which I think seems a bit pointless. So it's great to read your experience as it gives me something to work with to prepare myself. I am not sure about the cold cap as I spoke to my hairdresser and she said in her experience the hair is not good and grows back better when shaved. But I am still not sure. I have bought 2 wigs though and hats. Like you I am a stress shopper. I bought a 65" QLED TV before Christmas whilst sitting on my settee (now you need to beat that!). I look forward to reading more episodes of your blog, please write about your day on Tuesday. Good luck I will be thinking about you and Trixielady.
Hi Stargazer1, yes I could not find anywhere else, so I will buy it from the website, if it is a way of helping my daughter's nails.
Morning Seaside sar, I've read your blog and you appeared to get a lot more information then myself. Like yourself I start my first round of Fec on Monday the Nurse said she wouldn't go into the T just yet!! Like you I already know that herceptin will start with my first T, but I'm also having an injection with Fec to help my White blood cells as they are already low. The nurse said nothing about getting bloods before appointment so hopefully she will say more on Monday .I got One Netupitant/Palonoestron of which will cover me for 5 days & 2 Dexamethasone to take One hour before chemo on Monday. & free parking,my voucher was £150. Best of luck that all goes well on Tuesday xx
Stargazer 1 - It looks like you and I will be going through this at the same time. Please let us know how it goes. How many cycles of FEC are you having? I'm having 3 FEC and 3 T along with Herceptin.
There was certainly a lot of information to take in at the pre-chemo apointment. I have put all the detail into my blog which you are welcome to read:
I started writing the blog because I wanted to keep track of everything that was happening. I hope it will help some of you going through the same thing.
Hope you all have a good weekend with minimal or preferrably no worries. X