Well that’s settled then I will be having Chemo my onco score was borderline so both me and oncologist decided it would be for the best if I had it so I need 6 cycles every 3 weeks of EC-T 3 of the EC and then 3 of the T. He said we won’t bother to talk about radiotherapy yet as that’s a long way off so that’s the rest of this year written off but I thought that as soon as surgeon mentioned it as before she said there should be no need for chemo and my view is if it came back and I didn’t do everything this time I would always think what if. So can you guys tell me what I might need going forward I feel an Amazon shop coming on or elsewhere if needed. I will loose my hair but I am ok with that I shaved it off for charity 8 years ago. I know the side effects and everyone is different but what did you need or could not do without.
Sorry for the long post take care out there thanks xx
Hi. You’re going to get loads of information from your team and nurses which is very likely to overwhelm you so make sure you have someone with you for notes
Can i suggest that you undertake a search in the monthly chemo threads as there are literally 1000s of fab help topics and advice including mine
My biggest aid was slapping a tena lady on my forehead before the cold cap went on to save the drips and not being scared to ask questions , in my case 100s of them because in my case being informed helped me control things ( or at least know what was coming)
And don’t forget to ask for help and support and be direct about what you need when friends and family say ’ what can i do to help?’
IE can you pick the kids up for me, can you do my washing for me? Can you just sit with me?
Good luck and big hugs
And please use Headwrappers and Good Look Feel Better, Cancer Hair Care for free stuff and fab advice too
I found that the good old remedies like salt water gargles for possible throat/mouth issues helped and bicarbonate of soda in water for any urinary issues. I think everyone is different and you just have to listen and be kind to your body. Being prepared is key along with a, positive mindset. Thinking of you and wish you all the luck and love possible x
Hi like you my oncx score was borderline and I had 6 sessions of ECT last year.
I used the cold cap and only lost about 20/ 30% of my hair through thining.
I have shoulder length and hair and was advised not to cut it and i agree don’t cut it short
Please use/try the cold cap and do not be put off by nurses. I don’t think you need to buy anything if you cold cap other than a headband for the rim of the cap.
Make sure cold cap fits properly it needs to touch the head all over top and around the hairline too - this is very important as the cap is freezing the folicles to stop the impact of the chemo. Yes its uncomfortable for about 10/15 mins but you get used to it and you adapt to it
Use a gentle shampoo and try to wash hair only once a week and brush just once a day
I used a satin /silk pillowcase and tried not to rub or disturb my hair or scalp as little as possible
My hair did not fall out in lumps but it thinned gradually after session 2/3 and I did not use my wig or any scarves at all.
Make sure hospital know you are cold capping ahead of appointments so you get right size cap ready for you.
The experience was better then I had expected it would be, and i was left with wigs and scarves unworn.
You will lose your eyelashes and eyebrows but I had a fringe which hid alot and they grew back very quickly after it was all over.
Look at it as a project with milestones and celebrate every one
Good luck
Hi Lilo 1973, trying to think of tips for u. With EC, u will feel fine for the first 3 days then u will feel like you’ve been hit by a bus!! Give in to it and just rest, rest, rest! That will last about 3-4 days then you’ll gradually start to feel human again (probs like having flu and a hangover at the same time)! I hated the cold cap so only used it once, your hair will start to fall out about 17 days after the first chemo. So if you’ve shaved it before, it might not be too traumatic for u. I cried for an hour then got over it. What choice do we have really? Ask away on this forum, I’ve found it so helpful even for the tiniest detail. There’s always somebody that feels like u do and it makes u feel so much better. Take care xxx
Hi lilo1973 - I can’t remember the specifics of what I needed to get through chemo but just wanted to drop by as you sound similar to me. I was also borderline whether I needed chemo or not and, like you, decided to go for it to avoid thinking ‘what if?’ if it did come back. Just wanted to say that I got through it & have just had my 10-year cancerversary. You will get through it but there sure is a lot of information out there so my advice would just be to take each day at a time and certainly join the monthly forums where others are going through chemo at the same time. I did and we really helped each other and some of us still keep in touch now which is lovely. Good luck with your treatment x
Thank you so much as yet I cannot find the July chemo starters. I have decided the cold cap is not for me but thanks for the advice if I change my mind. I have a great family support network and the nurse I met at hospital was lovely.All the best on your journey take care xx
Thank you so much for your kind words. I am glad you celebrated your cancer anniversary it does put everything into perspective take care xx
Thanks for your kind words I didn’t want to feel worse that I am going to be by using the cold cap so thought I can do this and will just shave it. All the best with the rest of your journey take care xx
That’s a really good shout about old remedies they really are the best thanks very much I will do some more research I do appreciate your input take care xx
Baby steps I like that I have broken it down into stages so similar. I might start a daily diary too to keep a record of the good and the bad. I think in reality my journey has just begun but it’s nice to know I am not alone out there and others have had / been through the same, all the best with the rest of yours and take care xx
So I downloaded films or series to watch on my phone from Netflix. I took stuff to read as well but couldn’t concentrate enough to read. If you do decide to try the cold cap then warm clothes are a must even a coat. I would take a bottle of water too. Good luck xx
Get your teeth checked at your dentist before starting chemo, tell them you are starting chemo they will fit you in 
ask about a wig voucher at your trust and also your MacMillan at your trust might do pre loved wigs you can look at too get booked on a look good feel better course at your MacMillan at your trust too get a thermometer so you can keep track of your temperature during chemo. Get a rapid response card from your unit too prior to starting chemo painting nails dark colour can protect from uv light and preserve nails it’s worked for lots of us over the years, others have nail treatment too and I’m sure they will pop on and advise what it was take it a day at a time, step by step 
do read previous chemo threads and the July one will be starting soon ask away everyone will reach out 
Shi xx
Iv just got a score of 26 this week and will start chemo in early July … im so frightened but feel a little lighter knowing what lies ahead… I hope I dont loose my hair but as mentioned we have no control… good look
In your journey x