a few questions lovely ladies

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My sister is starting chemo next week. This has been a massive shock to all as she was picked up during a routine mammogram. She is triple neg. I have a few questions which I hope someone can help me with.

  1. Fatigue - is this as bad as the leaflets make out ie too exhausted to comb your hair etc? My sister is a dancer and used to running around so she is very concerned about the fatigue. Presumably fatigue varies from person to person or should I warn her she’s not going to be able to do anything.

  2. Does your head get cold at night when hair has fallen out? What do people put on their heads to sleep?

  3. I asked my sister what her biggest fear is regarding the treatment and she replied that physically she will never be the same again. She is 50 but looks about 40 and has got it into her head that she is going to age rapidly through chemo and never look the same again or be able to do the same things again.

I do apologise if some people are thinking this all sounds a bit vain but as a dance teacher and performer her image is very important to her mental well being.

Hope someone can help, I have no clue how to support her, I live at the opposite end of the country and it’s all telephone support. Most of the time I say the wrong thing…

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I`m 56y and a very keen hill walker. One of my greatest upsets at the time of diagnosis was that I thought I would never walk the hills again.Chemotherapy is tough and I had more problems than most people.FEC x3 was OK and I was even able to manage a couple of moderate walks in week 2-3 post therapy. Taxol x3 was not good the fatigue was extreme, and at times I really did believe I would never exit the house again unaided, let alone walk up a mountain.I read 30 books in 6 months
3 months post last Taxol in May and life is not as I imagined - I have started to get out and about in the hills again - despite slowly resolving neuropathy. so, there is life beyond chemotherapy even though at times you and your sister may feel despondent.

I`m told I look younger than my years. I certainly didn’t when having Taxol as I had significant facial oedema. At the time it was most unpleasant and I thought permanent but all resolved within 6-8 weeks. I lost all my hair all my eyebrows and eyelashes.Yes, your head does get cold at night but I just fashioned the duvet into a hood as I personally found hats too irritating to wear in bed.

Overall, my message is - yes its tough but very doable -If you can afford it buy a real hair wig - £400 well spent(I really couldn’t tolerate the cap you are advised to wear under the NHS wigs)wear make up EVERY day, have early nights, say Yes to all offers of help and try to get out for lunch even if you don’t feel like it.

All the very best - I`ll be thinking of you.xx

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Hi Kityhola, Sorry to read about your sister,but you being on the end of the phone for her is really going to help, plus she knows how concerned you are too.
Re chemo, it does differ from person to person, different chemos have different side effects.Tiredness is one of SEs, but again each day can vary…one day fine the next very tired. The best advice is to listen to your body and take it one day at a time. Having rest is a good idea as it gives the body time to recover.There is plenty of info on here (& elsewhere) re the different SEs which are good to read.Your sister will also be able to speak to her Breast Care Nurse with her concerns and they will be able to point her in the right direction.
Hair Loss, again this depends on the chemo, as not all will result in hair loss. My head didn’t get cold (lost my hair in March, weather was freezing!), but I got a towelling turban when my hair was coming out, just to stop it going everywhere. Is your sister going to get a wig if she loses her hair? This is something she could investigate before her hair actually comes out (usually about 3 weeks after first chemo). Her BC clinic / nurse should be able to advise her about the NHS system …or again there will be advice on this site. BCC have a group of volunteers that go to hospitals with style tips re scarves, they are called Headstrong and are worth looking in to.I’ve worn scarves and have got really creative with them. I’ve had loads of compliments and have enjoyed buying scarves, headbands etc to match my clothes.
I can’t say chemo has aged me!!It’s everything else!!!
Chemo wont change your sister, she will still want to look good and dance etc.,but she might have to slow down for a while.I also think keeping herself looking good will help her focus on a positive thing.
If you want to ask any other questions or once your sister has started her treatment and you have specific questions, there are lots & lots of very helpful people on these forums so please don’t hesitate to ask.

Wishing you and your sister “all the best”, Sandra x

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Hi

So lovely that your asking these things for your sister. My sister has been a big support to me through this.

Everybody is different in how they react to treatment. I have kept working through treatment with a few days off for each lot of chemo. I have tried to walk as much as possible too which helped. Have had chemo and mx and just going to start rads. I am tired now but i can get about and do things but just get tired easily. I think if she is fit it will help her stamina throughout. I think it’s so easy to get frustrated with the tiredness though, you just want to be normal and have the energy you had before. But i am sure the energy will come back.

My skin got really dry with chemo andi started to get lines where i had never had them before. Found that good vit E cream from the health shop worked morning and night,not too many bad things in it either. I don’t think it has aged me too much, maybe a bit.

I got cold all over when i had chemo so nice warm comfy clothere were good. I will send you a couple of links to shops i got my head covers from they are a good price and deliver quick. I used the head covers for bed or under hats.

My sister kept in touch regularly and came to visit she lives in Scotland and I’m in London. She came when i had my 3rd chemo and it was so good to see her, i just cried. I am sure you will know what to do and say.

Good luck toyou and your sister.

Love

Jxxxx

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Hi Kittyhola

Like the other ladies have said, we all have different experiences of chemotherapy. But I think that the leaflets we were all given before we started give the worst possible scenarios.

I really didn’t experience extreme fatigue. Like Murdo, I worked throughout treatment with two days off at the beginning of each cycle. I work full time in an office, so much less physically demanding than dance, but there were very few days when I was just too tired to walk for a half hour when I got home and prepare dinner for the family etc. (we did have a couple of take aways on the days when that just felt like too much).

I know that some people do feel fatigue - but your sister is relatively young and very fit and active, and unless she is extremely unlucky will probably be able to do everything she usually does, but more slowly :slight_smile:

I had WLE, 6 x chemo, mastectomy and recon - that was only 8 weeks ago - and I am almost 50. I have had more compliments about how I look since I got back to work 2 weeks ago than ever before. People love my newly short hair, my eylashes have grown in thicker than before, I have eyebrows again and my skin is better than it has been for years once the dryness of chemo wore off. My nails are still ugly, but hey a coat of nail varnish hides that, and I know it is temporary.

There are a few months when it takes a lot of work to look good when you leave the house (no hair, eyelashes, eyebrows, nails and probably pale complexion and grey circles under your eyes), but it is worth the effort and they pass quickly. I became expert at tying scarves and doing imaginative things with pashminas and even though I had an inexpensive, synthetic wig ,I got lots of compliments and many people did not realise it wasn’t my own hair.

Chemo sucks! No getting away from it. But for many of us is not as bad as we fear. I have seen other people say it here too, but my advice is to be aware of the worse SEs but not to expect them. I am sure that as your sister’s appearance is important to her she will make sure that she looks just as good after chemo as she does now.

I did feel the cold more when I had no hair, but bought some litle cotton sleep caps that I wore.

Your sister is very lucky to have you.

Jacqui

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So true that everyone has a different experience with Chemo. I have two primary school children and didn’t miss a day of the school run or any of the after school activities, we also moved just after my mx&recon and completely renovated our downstairs during my Chemo (fec&tax). Your sister’s Chemo team will monitor her very closely and there are many drugs for the side effects. Almost two months after my last Chemo my lashes/brows& hair are starting to sprout back. I had a beanie on my head in bed to stop the cold. The days I felt less well, I rested more when possible. Good Luck, my sister came to visit from overseas last month and it was lovely to have her over. There is a thread here top tips for going through chemotherapy, you might find that useful. Tinax

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Tiredness/fatigue - Yes I have suffered with that - not to the extent that I couldn’t comb my hair (I haven’t any hair anyhow!) but the tiredness just seems to build and by cycle 6 I was feeling very fatiged. However I did work throughout chemo - had 3 sick days off (due to fatigue) and booked annual leave on my ‘good’ weeks to give me a break

Hair - lost it all, plus eyebrows and eyelasher and nails a mess. Had my nails done and they look good now. used eyebrow pencil and eyeliner to give my eyes some definition and make me feel more glamerous - My wig is ok and to be honest no one notices its a wig. around the house I wear a nice comfy hat, my head does get cold and I wear it in bed too! although when I wake its usually fell off.

I think chemo does affect your stamina. My last chem was around 4 weeks ago now (just about to start RADS) and I don’t have much strength in my legs and get out of puff quickly. Was surprsied by this and I do need to work on my fitness levels to get myself back to where I was before. I was never a athlete, but at least could enjoy a long walk - at the moment I have to sit and rest on benches a bit like an old lady - but I am sure thats only temporary.

Since I finished Chemo my biggest issue is my emotions - they are all over the place. I think I thought I would start to feel well straight away and I am finding I am still a bit weak and generally low - and very tearful! Not sure why as I should be on cloud nine - but I expect its all I have been through and it has taken its toll on my both mentally and physically.

good luck to your sister I am sure she will be fine
x

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buy your sister a luxury towelling bath pillow, mine sent me one in the post when I complained about the bath feeling horrid with no hair, little thoughtful things that people do really buoy me up at this time.

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Your sister is really lucky to have someone who cares so much and is thinking about her all the time even if you can’t be with her in person. I agree with everyone else - everyone reacts differently. Here are some of the things that I really appreciated, maybe your sister would too.

Lots of lovely soft warm PJ bottoms or loose jogging bottoms and baggy sweat shirts, soft furry bedroom slippers - dunno about everyone else but every bit of me ached (on days 3-5) - my skin, my teeth, my finger tips!! Just wanted something really soft and warm next to me.

An electric blanket! (Even when it was warm, I felt shivery)

A cordless phone that you can switch off!! Everyone telephones to see how you are and it’s too much effort to get up and answer it or to talk to people sometimes!

Magazines - too hard to concentrate on books!

Some really nice moisturiser to slather on extravagantly

Something to take away the rather nasty taste in your mouth - esp if feeling too nauseous to eat or drink. Those fruit sweets in little round tins were nice.

You can get really good brush on eyebrow powder in a little silver metal compact (two colours of fawn and brown in one tin) - looks really natural and better than pencil. Boots do it.

Don’t know how she feels about wigs - I hated the NHS ones, was not prepared to fork out loadsa money for one I was (hopefully) only going to wear for a few months so used turbans. Lots of scarves and turbans are really uplifting. (I had some soft fleecy/towelling ones which were so comfortable I forgot I had them on and often went to bed in them.)

Nail polish and / or a nice manicure and pedicure

As for feeling tired - I think everyone has a pattern. For me, the day after was usually fine, the 3rd day was horrendous, the 4th day not much better but after that I was fine again till the next time and I didn’t feel especially tired.

I think it’s nice when people remember what your pattern is and work around it - it’s really thoughtful. (Like the bath pillow - what a great idea!)

Yes, she probably will feel like she’s 90 for a bit - and she may look like it too but it’s only temporary! If she looked 10 years younger than her age, she probably will again as soon as the chemo stops!

Hope this gives you some ideas

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Hi, Kittyhola, I agree with all the other ladies. I am 62 but have been told I don’t look it and I don’t think that’s changed. I am half way through my chemo and. although I lost all my hair ( I coped with this by having it first cut short then shaved), it is noe growing back. I was lucky not have lost all my eyebrows and eyelashes. I got a NHS wig but went for something a bit outrageous, My OH calls it my Rod (Stewart), he also bought me an alternative which I call my Glam wig, not real hair but microfillament which looks like I have a parting. I also have scarves. I havn’t needed to wear a hat in bed but then that might change as winter approaches. Your sister is entitled to complementary therapies either through the hospital or the local hospice. I go to my hospice day centre and massages and hydrotherapy. when she speaks to her BC nurse she needs to mention this as not all patients are made aware.
I also get tired which is frustrating when you have been used to rushing everywhere, but your sister should get her stamina back as she is fit now.
I send you and your sister my best wishes

Carol

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also have a look on the lookgoodfeelgood web site i got a booklet and dvd from there it shows you how to tie scarfs,find the right wig,draw on eyebrows and lots of makeup and beauty tips.also think they offer day courses you can go on for a treat.see if you can get her on this site its really helped me,espesialy at the begining when i felt at a loss where to go and what to do for me and my family.tell her to be kind to herself and enjoy each and ever day.
i have got a couple of leadies who i send private messages to we are all going through this together.best wishes lynne

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Ladies, thank you so much for the time you have all taken to post replies to me. I appreciate every word from every one of you. So many useful hints and information, fantastic. Sending healthy wishes to you all. xxx