Hope you’re doing well.
I just wondered how your cold cap experience is going and if you have any further tips? I start chemo this Wednesday and really want to do as much as I can to make it work!
Its so hard waiting for results and waiting for things to happen. Once I got my head around having chemo I just wanted to crack on. But 1st October is not too long now. The staff on the chemo unit were very good. Thanks for the Alice band tip.
I think I did a bit too much after chemo and didn’t rest enough, and had a bad day yesterday, but am feeling better today, just tired.
Best wishes x
Hi Carmen Verandah
Great to hear about your first Days experience, I’ve got my first chemo session on 1st October and the waiting is mind blowing. I have read somewhere that wearing an Alice band over your hears can help when you where a cold cap. I am hoping to use a cold cap as I am not brave enough to loose all my hair.
I hope you are still doing ok, take care xx
I wondered how you were getting on and when your treatment is starting? On my first day of chemo my friend texted to say I should bring paracetamol with me and take it 20 minutes before the scalp cooling, and also bring a mild conditioner, to apply before putting the cooling helmet on, so I pass that on. Scalp cooling extends the time in the chemo Unit because you need to have the cold cap on 30 minutes before they start the chemo and 90 minutes afterwards, so you have to factor that in. For me it was fine because I dozed off a bit anyway during the treatment. I didn’t have any paracetamol and it was very cold but somehow after the first 15 minutes I got used to it, but I think I will take paracetamol next time.
Good luck going forward
Sorry to hear your head has been sore, and hope you will soon acclimatise to your new look. I’m waiting a little anxiously to see if my hair will start to thin too as I think the cold cap is about 50% effective apparently. Whether that means it works for 50% of patients or you lose 50% of your hair I will have to wait and see 🤔.
Hope you are feeling okay otherwise.
Hi Carmen Verandah
The head shave went ok bit of a shock when I first saw it, but the relief was great as it had become painful to touch my head and when turning over in bed.At least I will save money by not having to buy a load of hair products 😂
Hope the cold cap is effective going forward for you.
Thanks for the info about hair coming back post chemo.
As you say going through all that in the height of the pandemic must have been so hard. Things are a little bit more normal now but covid does add more stress and worry.
Wishing you the best for your continuing recovery.
I had mine cut very short a few weeks ago. I started my chemo yesterday (EC x4 cycles, then 12 weeks of P), and I de died to try the cold cap at the last minute. The nurse suggested next time I bring paracetamol to take 20 minutes beforehand but wasn’t able to give me any. It was REALLY cold for the first 15 minutes but I got used to it I think it was on slightly crooked because I worried the top of my my right ear might get frost bitten but it didn’t luckily! I’ll see how effective it is next time I guess.
I feel okay after the chemo, just a bit jet lagged. And I woke up very early this morning...
Good luck with the head shave, I think you will like it when it’s done. I’ve got a bathroom full of aspirational hair products that I no linger need, for a while at least 😂.
Good luck going forward 🌷
Just picked up on this thread today and read a few of the posts and thought (hoping it will help) would share a little of my story.
I finished radiotherapy on Friday after starting chemo in February (6 of EC and then T), surgery in July and then radiotherapy.
I did start to lose my hair 2 weeks to the day of the first chemo but have always had short hair, it was sore to start with and I started wearing scarves pretty quickly, got it all shaved off (which really helped with the soreness) and then just bought various head attire - I generally tried to match head stuff to my outfits (not that in lockdown we went far) but it made me feel better.
My hair started growing back (everywhere!!!) probably about a month or so after chemo and I haven't worn anything on my head for around 6 weeks now (other than a cap if out walking to protect it from the sun) and am sporting currently a Sinead O'Connor type look. It is grey but as I am in my 50's, I was hiding the grey anyhow and I am contemplating now just going grey naturally (save some pennies).
I am a walker and have tried to walk throughout but not sure ready for any mountains yet and have gone back to ballroom dancing (shut due to covid) albeit in a mask.
I've worked more or less throughout (small co so couldn't live on SSP) but it's been from home and actually helped my sanity.
Feel a long way to go yet to recovery both with physical side effects and emotional ones but I have got through the last 8 months in a pandemic.
We can all do it with a little support from our friends.
Love to you all
Hi I started my chemo on 3rd sept I cut my hair short beforehand as I was told I would lose it. Now my head is tingling so am getting it shaved at the end of the week,hard decision but I decided I prefer to be in control of when it’s gone rather than seeing it fall out.
good luck x
I think I’m still in denial about starting chemo next week! And I’ve been doing all sorts of displacement activity and distracting myself, rather than reading up about what drugs I am actually going to have, which I really need to do over the weekend. I’ve even been to Poole in Dorset, from London, to look at houses, as I want to move away from London after my treatment is over next year, mad really. I had been planning to move by the sea before I was told I needed the chemo, so it’s very frustrating to have to put it off for another eight months or so . Oh well.
As you say, good luck to everyone, this too will pass and we need to focus on our treatment and recovery. 🌼
Hiya, I’m about the same stage as you, op in July and phone appointment with oncology a week ago. I’m have I got fec-t starting within the next couple of weeks, and the waiting is killing me. I hope to try the cold cap but will see what happens. They say I should keep a lot of my hair if I have the cold cap so it’s worth a try.
good luck to everyone , and this time next year it hopefully be all over with
Kazza81 - first of all a big hug to you, before you start it all does sound overwhelming. I had FEC-T (so similar) about 3.5 years ago. I used the cold cap for 2 sessions but like ruthie2 says it needs to be fitted properly and mine wasn’t, so I lost hair from the top but not the sides so decided to give up (it looked very odd!!) But it did mean I held onto some hair all the way through, just enough to show at the edges of a headscarf, and I only shaved it all off at the end so it could all grow back at the same rate. It’s a very personal thing and you should cut/shave when you feel the time is right for you, there is no “right time”. If the cold cap is something you want to explore, then I would definitely speak to your team again - or call the lovely nurses on the helpline here/or message them for more advice.
Hugs too to Carmen Verandah. I wish you both every strength as you go through chemo, and it would be very worthwhile joining the September chemo thread to share questions and experience with others at the same point.
Hi, I’m a week behind you and have my appt with the oncologist on Monday. I used to bleach my hair and I just had all the bleached bits cut off leaving it very short, to get used to the idea of losing it. It’s a bit of a shock but my head isn’t as weird a shape as I thought it would be! A friend who has been through chemo said you can get a prescription for a wig from the NHS which might be worth exploring. It is overwhelming, but although I didn’t think I was going to need chemo, now I know I have to have it, I just want to get on with it in a way.
I think there is a forum on this site for people who start chemo in September that we can join.
Good luck, 🌷🌻🌼
Hi Kazaa, I had ec-t (3 of each) last year, finished just before Xmas and cold capped throughout. I did lose some hair but by no means all of it,and ended up having it cut short anyway. It does depend on how the cap is fitted, it must be tight, my hair was damp and conditioner applied beforehand.
it did lengthen the time I spent there considerably, especially on ec, I think an hour before then hour and half after.
It all feels like a different life when I think this time last year I was half way through chemo with rads to go. Although I worked and ran throughout, ec was fine but t did floor me a bit but, today I’ve done a spinning class, aquarobics class, worked from home and looked after my 2 yr old grandson.
Its very daunting at first but take one step at time and any questions or you just want to rant, this is the place.
Love and hugs
ive just had my first oncology appointment today to find out my treatment plan and she confirmed that the cold cap won’t work for me because of the drugs that they are gonna use and so I will defo lose my hair. I’m thinking about cutting it off before hand but don’t know when. Should I do a week before first cycle or as it starts to fall out.
im having 6 cycles of EC-T .
im glad I know now what my treatment plan is coz since my surgery in July I’ve just been waiting.
feeling a little bit overwhelmed and slightly scared at the thought of it all xx