Hi Emma
I’ve used the cold cap and had 3 X Fec so far. After fec 1 my hair started to thin around day 17/18 mostly at the back of neck where I think cap didn’t reach. It continued to thin for about the next week some each day, mainly when I brushed it and then really slowed down. If you didn’t know me I don’t think it’s that noticeable and it’s even at the moment! I’m just taking each day at a time and do have a wig waiting just in case!
Hope you enjoy your day out today!
Take care xx
Thanks Shazza. That’s good to know. Xx
Hi Emma D,
I’m cold capping too. Head was really tingling last night when I went to bed but seems okay this morning. I am barely touching it at the moment, no styling and have not washed for six days now (gross I know). And I still have the hairnet of denial on with a turban next to me in case the postie arrives. Every so often I look down at my laptop keyboard and see a few sprinkles but still nothing major. Hoping to be as lucky as you Shazza.
Have a great time today Emma.
Hope everyone else is doing okay.
Ruth
xx
I hope you are too Ruth!!!
Hugs xx
I’m still at Thorpe park having spent what seems like most of the day standing in queues! Not unexpected of course. My scalp has been very sore today and the wind blowing my hair around has really hurt. I can only describe it as when you hair gets put on the wrong direction for a long time. Like when it’s tied up. I’ve been losing quite a bit of hair when I run my fingers through it, but I would still only call it thinning. Certainly no clumps…yet. How is everyone else today? Thinking of all who have recently had treatment. hope you’re feeling ok. Emma D
Hi Emma D
I had the tingly scalp thing - well actually it hurt a bit especially when the hair was blown around in the wind. Lost quite a bit of hair for a few days then the loss rate slowed down. Wore a cold cap for the second treatment and am waiting for the tingling again this week. Having said that hopefully my wig will arrive this week in which case going to get the rest of my hair clipped. I’m actually quite looking forward to getting the wig now! Obviously won’t be bothering with the cold cap again. If I was only doing 3 x FEC I might have persevered but as I am on 4 I think it would be all gone by the end of that.
On a positive note my friend who is now on her 2nd T says her hair is growing back.
Hi all, yes I’m tingly all over my head but want to rub it too! Lots of shedding started yesterday, 2nd chemo on Friday ? Love seeing the support everyone gives on these pages X
Morning everyone. The hair is still thinning, but still no clumps or handfuls. Oddly it’s just on the top though. If it continues I will look like a monk with a bald top and lots around the side.
We we had a great time yesterday, but my word I was exhausted afterwards. I would have been weary before, but I had that bone aching tiredness that is courtesy of the chemo. On the plus side I had a really good night’s sleep last night.
have a good day all.
Emma D xx
Sorry you had a rubbish day yesterday Ele. Hopefully the antiobiotics they gave you at the hospital will kick in soon and you will start to feel better. Hubby and I are going to see Spectre tomorrow evening which I’m really looking forward to. Thought it would be a nice pre-FEC2 distraction. Hope you enjoy it.
Well, I’ve just washed my hair for the first time in 6 days. What a relief. Definitely more shedding going on now but no big scary clumps yet and I think the drains of South London are safe for a bit longer. Anyway, it was worth it just to have clean hair that’s not stuck to my head and my scalp feels a bit less sore too.
My eyebrows are still okay. In fact my right one appears to be sprouting new hairs which are, typically, grey and really stand out against the other dark ones!
Hope everyone is doing okay.
Ruth xxxx
hope you feel better soon Ele. How horrible to be in a&e when e spend so much time in hospital anyway. You do lose confidence in your ability to judge your own body. What a good way to put it.
Jojo, it was th fog that bothered me most as well. Feeling like the world didn’t make sense and I wasn’t quite a part of it. It was very odd and I’m not looking forward to that at all. I’m pleased that I know I will come out of it, but it’s really horrible going through it. Try not to expect anything of yourself, and rejoin the human race when you are ready. Last time I tried to carry on as normal and it just didn’t work.
Cyber hugs to you both.
Ruth, good going on the hair. I’ve been washing and styling as normal as I figure whatever is happening to the hair is going on under the skin anyway, so nothing I do will make a difference. I’ve pulled loads of loose hair out this morning. Sort of morbid fascination like picking a scab. I just can’t stop. If it’s loose I want it out as it’s only going to come out anyway. My husband says he can see that it is thinner on tip now, and it felt odd in the shower this morning. Blow drying was amusing too with the occasional hairs taking flight behind me as well. Almost like a dandelion, but not quite.
Emma D
Hi Jojo, welcome back to the land of the living…moan or no moan, the fact that you’ve had the energy to post on here shows that you are coming out of your fog little by little and I’m sure each day you’ll feel a bit better. I think sometimes we’re just going to have to ‘dig deep’ (that’s what my husband says to me when I’m struggling on a run…how appropriate!) and wait for the time to pass.
Ruth, congrats on your hair wash…what a relief! Hope it continues to hang on in there…I’m sure it will. I definitely need some kind of turban to wear round the house over my shaven bonce. I’m currently wearing a beanie in bed which looks like a swimming hat…my husband made a joke about covering me in goose fat for my cross-channel swim…not amused! My head remains painful…it’s clipped to #0.5 but sore/prickly…not sure what the answer to that is.
Well done to everyone else, and keep going…every day that passes is a step closer to the end of treatment xxx
Moan away Jojo. If you can’t do it now when can you. Hope you start to improve very soon and hold on to that thought of being a third of the way through. I’m starting to feel quite anxious about Friday now. I was so lucky last time with the SEs that I can’t believe I’ll get away with it so easily again.
Talking of people making jokes about our appearance, I’m currently gathering together some bits and pieces for our neighbours’ children for Halloween. My friend said to me that I can answer the door to the trick or treaters as “scary cancer woman.” It being the day after FEC2 and the fact that I might have fewer hairs on my head I probably won’t have to dress up will I? Luckily she is a lovely friend and we share the same black sense of humour.
xx
Hi JoJo,
I’m currently in FEC1 fog - I feel my head is full of erm… thick custardy fog. And my sinuses feel bulgy - That’s the only description I have for that. I even got an eye twitch which gets worse at night watching TV… I suppose this is all to be expected - had a good nights sleep last night after kicking hubby out of bed and forcibly stealing his side. I’ve also got really shiny backs of the hands - this is something I’ve noticed every morning… It’s an eye opener for sure, this chemo lark. For those going to watch Spectre, enjoy, I hope he emerges out of the sea in his budgie smugglers again 
Peaceful night all xxx
Had my onc appt today, so had to drive 1 ½ hours back from the caravan for my 11am appt, bloods done, and came away with 2 carrier bags of drugs, for what I thought were minor SEs, but heyho if there gonna help then why not. Got back to the caravan at 3 had a cuppa we then went for a walk round Tattershall Lake for an hour or so, now knackered so sat relaxing with a custard slice.
All being well, if my bloods are fine FEC 2 on Thursday, we’ll see what this session brings.
good to see you all getting out and about, I must say it does make me feel better getting out a bit.
Have a good evening all. Jayne xx
Morning all. Hope everyone had a good night.
my hair loss continues on the top of my head, temples and neck line. The temples are mostly gone but that’s no so noticeable as remaining hair covers it. The top of my head is rather thin though. You can see my scalp now and my parting is getting bigger. I’m not sure what to do. If I’m going to lose this much hair then the cold cap probably isn’t worth it. At the moment I think I can still get away with it, as there is no obvious bald patch, but that may not be th case at the end of the day. Do I give up and shave it all off, or not bother with the cold cap and let nature take its course. Or still use cold cap on Friday in the hope that I won’t lose any more. Dilemma!!
i spent yesterday afternoon lying on the bed. I was so tired and I think I was still recovering from Thorpe park. Still wide awake really early again. Off to see Spectre this evening so I think I’ll have to have an afternoon nap to ensure I’m able to stay awake.
Hi Emma D,
Is it worth waiting to see what they say on Friday if you can bear to wait? Perhaps they’ll think it’s worth you perservering and that maybe the shedding will slow for a while between cycles. I’m still shedding a bit. My little sideburns seem to be the hairs that are most keen to abandon ship and I think that there is small patch on the left side which thinner than it’s counterpart on the right. It’s the side I sleep on so think it’s getting more wear and tear than the right side.
I was very tired late yesterday afternoon and had to have a siesta. I really felt quite weak and started to panic that my bloods might be really low and won’t be able to go ahead on Friday. Feel okay today though and think we just need to have a rest when our bodies say so. Can’t imagine ever going back to normal and getting through the day without putting my feet up in the afternoon.
Hope everyone is having a good day.
Ruth xxxx
Rob em you can get Topik to go in the parting & it looks fine (surprisingly). I move my parting around a bit too when I wash it. The shedding from FEC can go on until day 28, so u won’t know until after 2nd treatment where you’re at. I guess it depends how much you want to try & keep your hair vs how awful you found the cold cap, but might be worth doing for 2 & giving up after that? If you are on 6xFEC may be lost cause, but if FEC-T hair can start growing back for some during phase 2 of chemo. Other issue is that it will grow back quicker if you use the cap. Only you can decide . . . xx
Thanks Ruth and Bibi.
it’s still not quite a bald patch, but very close. I reckon I can just about get away with no hat tonight when we go out. I think I will leave it until Friday to decide. I didn’t find the cold cap too bad, so happy to try again and see what happens. I also like the idea of being able to keep a fringe. At the moment the fringe hasn’t budged at all. The cap was very firm there. The next few days will tell I suppose. I also don’t think I mind it falling out as much as I mind the idea of making a decision to take it all off. Now that I’m at that point I think I’m too much of a wimp to follow through with it.
Emma D
Ahh, it’s a really hard thing we all have to face. The ladies on my thread said it’s horrible when it comes out, but u do get used to being bald quite fast. Like you, my fringe is intact (also have my side burns) & hair has come out at the front/sides quite evenly. The back is an issue for me, I reckon I have lost maybe 60-75% of my hair & can see the scalp through in a couple of places, but I am combing the sides back & it’s passable. Who thought I would be talking about a comb over at 51 ha ha. See how you feel. You’ll be in good company here either bald or worried cold capper. x
Hi Emma, I guess the other thing to think about is the fact that it’s not just about being bald now…it’s also the length of time it takes your hair to grow back after. Obviously I didn’t cold cap and have shaved my hair off so am getting used to the look/feel, but given that you gave it a go it seems worth persevering even if hair is thin now, as you’ll be back to something like your old hair much quicker?
hope everyone else is doing ok. I still have my sore throat, and feeling a combination of completely exhausted and bored out of my skull. Xxx