sophie
think i am going to carry on with cold cap - see how it goes. I’ve got very fine hair anyway so if it becomes too thin. i’ll probbly stop and do the same as you. Youre very right it is only temporary, and i,m sure all these things we have to go through will only make us stronger in the end. thanks
maria x
They had better make us stronger, fitter, more beautiful and ultimately wealthy or someone has some explaining to do… <grin>.</grin>
Sophie xxxx
Hi all!
Day 3, final day of steroid, was a bit better, less queasiness and less shakiness. I have 2 more days of dom and of the anti-indigestion. I still find that snacking on small pieces of fruit (mainly grapes and satsuma slices this time of year) and sipping a drink seems to help best with immediate queasiness, but I also have the odd ginger biscuit or oatcake with cheese, peanut butter and so forth, as I’m still eating smaller meals than usual.
Unfortunately, my underarm pain from the lymph node surgery (x2) has returned, and aside from cold packs, it’s difficult to know what to do about it. There is still some swelling and discolouration as well. (I had gone back to using ibuprofen for inflammation as much as pain, but stopped with FEC1.) I really don’t want to take any more tablets just now, if I can avoid it. Any ideas? If it’s still bothering me a lot on Monday, I’ll phone the BCN or the chemo unit. I know that the after effects of surgery go on for some time, but i can do without this, or perhaps I’m just reacting more strongly to discomfort.
I went out for a walk yesterday, because the sun was shining, but turned back quickly, because even with one of my winter furry hats on, the cold wind gave me a headache. Blast!
Cheryl
Cheryl- can only help with the head issue, not having done surgery yet- double hats are the only thing! Thin, indoor type one, then your wooly one on top. Am very envious that you got out though- well done!
Tracey
Thanks for the tip, Tracey–I haven’t lost my hair yet, but had it cut short. I would have worn my heaviest hat if I had realised the wind was so cold. (This is why I didn’t ask for a cold cap.) I was thinking of tying a scarf under a hat as well, especially if they seem loose, once I lose the hair I’ve got. It’s hard to cover forehead and ears and back of the neck all at once.
Cheryl - you can get jersey cotton bandanas online - ready head shaped, if you see what I mean, and they make a huge difference under a hat or baseball cap - much warmer, softer and they cover lower down the neck and over the ears - which is much more cosy. Can’t remember offhand where I go mine, but most of my stuff was from scarf hut, Bohemia Fashions and Hats 4 Heads - so bound to be one of them.
Sophie xxx
Sorry…behind the times a bit, but going back to cold cap; I had it for FEC1. Wasn’t unpleasant and didn’t find it painful. Hair thinned very very slightly on day 18 for a few days then stopped thinning. Didn’t use it for FEC2 as didn’t have the time and now day 5 post FEC2 with no more hair loss. Am expecting it to all fall out around day 18 - but beyond caring now as got my head round it and luckily am not really bothered. This is odd as I thought I really would be, but I have to say that reading the posts across many different threads has put hair loss into perspective for me.
if it works for you, then I would say it really is worth it. A lot of lovely people have spent a lot of time raising money to provide the cold cap in chemo units around the country so that many of us are lucky enough to have the choice - and we should exercise it.
love to all
Annie
…and agree with Sophie about the hats. I thought hats looked stupid on me (they have done for my whole life), but the Bohemia hats actually work. So, knowing that you look OK in a hat is reassuring if you decide that the hair is going. I went for a soft hat and bought a couple of bandanas to go round them which gives you a bit of height to your head.
Annie
Thanks for the recommendation. I got a few cheap cotton caps for night and as an under layer, but they aren’t attractive on their own. I’ll treat myself to something nicer when I next need cheering up. FWIW, I’ve always found M&S furry hats good value for money for keeping my head warm in winter, if not exactly trendy. I still have the velour and plush one I got years ago to wear while waiting for home time, but it may be wearing a bit thin now, and so not up to yesterday’s wind.
Maria
I tried cold cap on thurs and found it bearable. Dont like the greasy look ive got going on now though. I was advised to only wash twice a week and no hairdryer. Yuck!!
Deb XXX
hi debs
i was advised to wash hair once a week, going to do it twice now. What a treat! i know the feeling about the greasy look.
will look at the sights recommended by sophie for the hats, cos i still feel i,m going to need plenty with or without cold cap. Think at the end of this i’ll have been converted to being a hat fan and will end up wearing them at every opportunity. i always admire people who wear hats. I,ve never had the courage before, believing i could not carry it off. Perhaps BC will give me some new found confidence.
Cheryl i,m sorry things been a bit rough for you. Hope yoour feeling better very soon. will be thinking of you.
Maria x
Thanks, Maria, some people have it a lot rougher, so I’m still counting blessings. I feel a bit better today.
Cheryl
Greetings January Feckers and Taxers!
Nobody starting on Monday is there? All the best if you are.
Good Luck Janet and Den42 for Tuesday.
Maria I was in Selfridges (Oxford St) on Thursday too and just as horrified as you. Went from there to Topshop but still horrified. So on Friday I went to Maggies in Fulham for some words of advice from them. Got an appointment in Kingston that afternoon to try yet more wigs, that was better than the previous two. I now have an appointment with the hairdresser and "wig man"at my hospital the day before I start the first FEC.
On Tuesday I had my hairdresser cut my own hair short- about three inches in layers and the last coulour for a while. I know I’ll have a grey re-growth! I got home on Friday night to find my buffs and Bohemia headwear had arrived. Pleased with those so may order more. I have now been up into the loft to bring down the zillion or so scarves I have acquired over the past 50 odd years. Even one that my father gave me when I was a child. Compulsive hoarder me- I have a tendency to follow the “if you throw something away you can be sure you’ll need it” philosophy! I knew all those scarves(probably about 50 or so) would be useful one day. Have spent the last hour happily tying them, one after another, bandana style around the hat I ordered. I went mad when I was in China and bought lots of scarves as they were so cheap -saw the silk from their silk worms being spun. Now I’m happy knowing I’ll cope very well-she says convincing herself.
Cheryl- hope you are feeling better. Let us know how you go with the underarm pain. On several of the threads it is mentioned so maybe it is a common side effect. Good for you for getting out of the house. -Pat on the back- pat pat pat.
Deb -re the greasy look- one of the radio announcers in Sydney took the challenge of not washing his hair with shampoo for six weeks. The theory was that the hair would be greasy for a while and then it would stop being greasy as it restored it’s own balance. He threw out a challenge to others and there was much hilarity as people rang on a daily basis to discuss their hair. Some saw out the six weeks and some only lasted a few days. The end result was that those who stuck with it did eventually find that just rinsing with water actually worked and they saved a fortune on shampoo.
Hope the red faces have calmed down and that the dizziness and aches and pains are resolving.
Only a few more days to go and everyone on this thread will “be on chemo”.
All the best ladies – love, hugs and positive vibes to all- Diana xxx
hi everyone
for anyone who is interested
Just had a text from a friend of a friend, who said she had had difficulty finding the right wig for her when she herself was going through chemo. She said she eventually hit upon wig-wham.co.uk
although she had to travel (from Manchester to stafford) it was well worth it. Very easy 1 to 1 apointment with a very understanding lady . Have a look at the site it does look fab
Maria x
I have a wig appointment for tomorrow–essentially a prescription to a particular supplier, though they make wigs for a big department store as well. I’m not expecting wonders. I think it will then come through the post, but I can imagine that actually putting it on for real might be hard. A friend who is a keen knitter is posting me a hat she has knitted for me–how nice is that?
I also have a considerable collection of scarves, though probably not 50, which I can wind or tie round some cheap but not very fetching cotton caps, or under my winter hats. Some of the long rectanglar ones will go round twice, once to cover and once to twist. If we ever get warm weather again, I must get some cotton bandanas or scarves. I’m sure I’ve got a baseball cap somewhere, but I haven’t seen it for a while.
I was pleasantly surprised by my wig fitting, was sent to a small boutique pace in the city centre. It was the kind of place you ring the bell for admission and was seen in a private booth, assistant really good, brought me lots to try on, different styles and colours left me lots of time to choose and review back and front view. I eventually picked a style I used to have some years ago, chin length bob with integral highlights!
I’m actually keen to start wearing it, all me friends/ colleagues complimentary, even daughter who is plain speaking approves!
Hi to everyone and thank you for the good luck wishes. Like most others I want to just get it all over and done with.
Re: cheryl’s under arm pain from lymph node removal, I had it in left arm during 1st couple of weeks after surgery but stuck with the physio exercises I had been shown in hospital and it was then ok. It’s now come back and worse and because my port catheter is on left hand side above chest I cannot yet lift my arm very high. I had to cancel a physio appt this week but am doing the stretching exercises that I am able to do which are helping. My understanding is that you need to be able to lift your arm up high if you are having radiography. Can your onc refer you to a physio? Also, i am in only in my early forties and want to have full use of my arm for many years to come as i’m sure you do and so it’s key that we are given the support/treatment to rectify such problems.
Also, anyone who hasn’t started treatment yet, I had not been given any advice from my onc or nurses about the flu jab. I rang them a few days ago and was told I should get it. I rang my gp who told me about the national shortage and had run out of supplies. My local chemist still had some and when my husband called them and explained my situation they held one back for me. Apparently morrisons stocks it as well though they could have now run out as it’s been on the national news.
Lastly, for anyone thinking about a port catheter, I have had one installed. I was Pretty uncomfortable for the first 48 hours but is has gradually improved. It took 4 days before I drove a car as my neck was so stiff. I am wearing high neck tops as I don’t want my young children to see the plasters (my son is nearly 5 and gets concerned at the sight of mum wearing even a small plaster!). I still think it is a good device for administering the chemo but will find out for sure on tues.
Very lastly, on the topic of birthday parties I have always used an indoor play centre and plan to do the same this march. The food normally looks like card board but the kids love it. I normally take my own shop bought novelty cakes (all the big supermarkets sell them) but usually make my own party bags. This year I will be paying for the party bags that the venue sell (the cheapest ones) as I have come to the conclusion that the kids don’t actually care about the content. I am making life as easy as possible for myself as with a nearly 5 year old and an 18 month year old I don’t get much time to rest as it is.
Best of luck for anyone undergoing treatment this week.
Den42
Hi girls, hope everyone ok, and Cheryl hope you are starting to feel human gain. Poor you… X
I was googling headwear today came across a good site called annabandana.co.uk, massive selection of ready tied scarves and bandanas in loads of lovely colours, also sleep caps to keep the bonce warm at night.
Going back to the dry skin again, aqueous cream is brilliant, my skin was horrendous after a week in hospital and dry as a crocodile after being kept at 80 degrees under the bear hugger blanket, and you can get aqueous cream on prescription I’m sure…and prescriptions are free so make the most of it!!
Looking forward to hopefully sleeping tonight with delightful thoughts of Rufus Sewell to send me off, anyone else watching Zen on a Sunday night???
Lots of hugs to you all xxx
Re: flu jabs…I was told to definitely have one, managed to get the last one my surgery had… Would certainly look into it those of you that haven’t had one especially if what tthey are saying in the media is true xxx
…flu jabs: I was advised to have mine a few days before chemo, so did mine 4 days before. I was also advised that the rest of the household should be done too, to protect me, so did this too…re: hair washing (after cold cap); I followed advice and washed mine really carefully (no blow dry). Kept this up for a week, then decided it was pointless having hair if I couldn’t do anything with it, so washed, conditioned and blow-dried it every day (but no tugging with the hairbrush!). Yes, bits came out, but I don’t think it made a substantial difference. My view was that once it has detached from the hair follicle, it is going to come out whatever you do - its not going to re-attach by not touching it, but maybe the 6 week ‘leave it’ as Diana suggested, would have been more sensible. Remains to be seen, but still got full head of hair after 1 cold cap, 2 FECs and 5 days, but don’t expect to have it by FEC 3.
Hope new and old FEC and TAXers are able to look forward to a good week.
Annie