I have the big 'C' in the big 'B'

I have posted this on behalf of new user Daz

Kind regards
Lucy

Dear all
Crikey I am such a newbie - how the devil did all this happen - one minute life was quite normal and sane, next a lump in the boob takes me down the road of two lots of surgery to have the lump and nodes removed and now Chemo - all in the space of 3 months. Does anyone know what happened to Jan, Feb and March cause I sure don’t!!!
In all seriousness, am about to start Chemo next week and am terrified. I have so tried to keep the old chin up over all of this - but having had all my hair cut short on Tuesday in prep and knowing I only have a matter of weeks before the lot comes out seems so much more to bear than the surgery. Especially as I am very likely to be bald for my one and only daughters’ wedding.
Has anyone got ANYTHING they can offer, in terms of advice, on how to deal with, cope with or even how the devil they carried on as normal?

Oh and am very very new to all this forum stuff - be gentle with me!!!

Daz

Hello Lucy
Welcome to the site -but sorry you have had to join us.

My only advice to you is to read,read,read the posts in threads such as …undergoing treatment for breast cancer+ undergoing treatment :chemotherapy,newly diagnosed with breast cancer , living with breast cancer.

If you go back and read through from perhaps the start of this year and work towards the present you will get a fuller picture of just how others have coped in very similar situations to your own. You will ‘meet’ others who share your point of view,your fears and also hopes for the future. You’re in for a bumpy ride but its ‘doable’ and you will have company …you will be okay.

Wynn

Ooops -sorry Daz didnt read the name properly.

Cant claim chemo brain 3 years on…or maybe I can?

Wynn

Dear Daz

Welcome to the forums.

I am writing to let you know about the Breast Cancer Care ‘Headstrong’ service. They give practical tips and information on looking after your hair and scalp before, during and after treatment. You will be able to try on a range of hats, scarves, fringes and hairpieces in a comfortable and private environment. You also have the opportunity to buy selected items of stock. As well as being free, you can attend as many times as you want – and you are welcome to bring a companion along for support.

For more information either click on the link below or contact the helpline on 0808 800 6000.

breastcancercare.org.uk/content.php?page_id=2458

We have also published a booklet about hair loss containing useful tips and hints which may also be of some help to you, you can read it via the following link:

breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf

Best wishes
Lucy

Posted on behalf of Daz

Wynn
oh yes you can claim ‘chemo brain’ for as long as you wish - have been using ‘I have a hole in my boob’ so need new handbag, chocolate, etc etc and it soooo works!!! Its the only good side to all of this - and I am finding out to my horror how little ‘good’ sides there are!!

Posted on behalf of new user Daz
Kind regards
Lucy

Thank you for that Lucy - have duly ordered!!
The ‘Headstrong’ service only seems to be available in the North and I am in the South!
Am taking researching hats and scarfs to my heart at the moment and it seems there is very little out there for this situation - but am not really that worried as will just order loads from the few websites and stick with them. Not sure how to tie a scarf though - any clues anyone?
Daz

Sorry you had to join us Daz,

I had my first chemo last week. Like you it was a whirlwind through February and March!

Try not to worry about your hair, there are some FANTASTIC wigs out there, and it is just temporary. Whilst I still have my hair, it already feels odd and strawlike. In preparation for loss I’ve got a “Diana Dors” platinum blonde, a couple of blonde wigs (my colouring, but much longer - well, I don’t have to wash & dry it every day!), a copper wig with wild flicks and a pink wig! My attitude is I’m going to have some fun with it! My local wigbank was a good source of cheap wigs - look up www.wigbank.com

I have some bad news for you… Chocolate doesn’t taste as marvellous as it did before chemo!! However, I’m struggling through manfully!

Your daughter will just be glad you are at her wedding.
Take it easy, be kind to yourself, you’ll get there.
Sue xx

Sorry to hear that you have had to join us here. I was wondering about Jan/Feb/March too … they seem to be listed on my calendar as normal but I can’t seem to recall them happening either.

I can’t offer any advice on the hair loss situation cos I am one of the lucky ones who escaped chemo and skipped right on to rads… but I would echo Sue’s advice and go have some fun with zany wigs.

Hi Daz,

Sorry you’re having to be here, but you’ll find this site invaluable and full of support. I’ve just finished my course of 4.Fec and 4 Taxotere and am impatiently waiting for my hair to grow back! I bought a wig well in advance of my hair falling out which tends to happen round about 14 days after first Fec. I also bought lots of scarves from websites and H&M. I found scarves about 70cm to 90cm worked the best as they give you lots of material to tie at the back in a double knot to stop them slipping and you can drape the long bits around your neck a bit to hide bare back of neck.

I actually ended up only wearing my wig twice, I preferred to wear scarves, but I don’t regret buying it as it was a great security blanket at the begining of my treatment.

I hope your treatment goes really smoothly, take good care of yourself, take it easy and let us know how you get on.

Love Louisa xxx

Dear Daz

Hi there. Wigbank in Edinburgh do some fantastic wigs for charity, £15 each. I had several last year when undergoing chemotherapy and returned a couple to be “re-circulated”. However, one was so good I have kept it for those “bad hair” days. I actually only wore a wig when going to buy groceries at Tescos and to buy a new car - the rest of the time I wore a bandana or nothing at all. I had a very brown head and all my friends got used to it very quickly. It didn’t bother me as I didn’t have to look at it!!! It’s sometimes interesting to see how friends and acquaintances deal with it - treat it as a psychological exercise!

Good luck - like the rest of us, you’ll be fine.

Sharon

Posted on behalf of Daz
Kind regards
Lucy

Now I am really upset - not like Chocolate - how the devil do I get through this - I need counselling - I need therapy - I need a bar of choc right now!!!

Both Hubby and I are really strugglig with the lost months - we are seriously concerned that someone carved a hole in the calender and we sort of dropped through it. Sort of guess it will be like this until the end which is predicted to be October sometime!

I do have a question - has anyone gone back to work during the process - I am really keen to do so but am not sure who’s advice to take - GP says no but the wonderful Breast Nurse seems to think it is a possibility.

As for wigs - I feel quite strongly at this point (and who knows how this could change) that I will stick to hats and scarves and some outstanding earrings - I have called on every friend to start collecting some really good scarves for me where ever they go - Tiffany’s, Radley, Bloomingdales etc as I feel I would weather it so much better with these types of scarves for company on the low days!!

Thank you lovely ladies for your responses!

Hello Daz, sorry you are going through all this with the rest of us…going back to work really depends on what job you do and how you react to chemo. I have met a few women who worked right through, and others who hardly got out of bed the first week after chemo. I didnt feel too bad, but I am a nurse and had to avoid all the bugs! Also all the lifting. Finish chemo next week but fed up and have told them I’m coming back on April 24th…hope thats not too optimistic.
Alos, only wore my wig three times, really used to the very short hair thats just coming back…nobody looked at me when I was bald, but they do stare now!
Anyway, it all goes by quickly, you wonder where all the time went.
Try not to worry because being happy and laughing (if you can) is the best medicine, keep in touch, love Zoe

HI
I prefer to wear my wig as not comfy with scarves/hats, and it looks as good as my hair, it is starting to grow back slowly. I have not worked sinc Oct and not likely to go back until earliest July, which is a a struggle financially and am climbing the walls with boredom, hope your wedding is fantastic and am sure your daughter will appreciate that you are there
Mary

Hi Daz,

I haven’t worked through my chemo (I had given up work a few months before dx in order to ‘do up’ our old house prior to selling) but think I could have continued to work through Fec. I was very lucky and didn’t suffer badly with side-effects of Fec but found Tax harder and don’t think I would have coped with working whilst on that. I think the thing is to see how you go, I have seen threads on this site where ladies have worked throughout whole treatment, I suppose it also depends on the type of job you do. Maybe you could do something on a part-time basis? I know I have had periods of time when I’ve felt really quite lonely at home even though I’ve got three school age children and a dog to look after!

Treat yourself to some gorgeous scarves, I’ve felt very comfortable wearing mine,especially a really good Hermes copy (never got the real thing even though I hinted to o/h like mad!!).

Love Louisa xxx

Hi Daz,

I worked all the way through, just taking off two or three days each chemo cycle. As others have said, it depends on how you react to the chemo, and what your working environment is like. I work part time, in a very small office (so not coming into contact with lots of bugs) and it is a desk job, so I could sit slumped at my desk when I was tired. I figured my bosses would prefer me to be there working at half rate than at home not working at all. I found for me that I was mentally much better for going to work - on the days that I was at home I got very depressed.

Hi Daz

Sorry to see you here but it will be fine.

I am halfway thru chemo - just finished epi and will be moving on to xeloda on the Tact 2 trial. I am a baldy - when I started getting motheaten i just had the hair zizzed off - it was short anyway.

Surburban Turban do some good long crinkly cotton scarves which stay put and they send pictorial instructions on how to tie. If you stick scarf tying into google a fair few sites will come up.

I have a good wig via the NHS but it does get very hot at times. My breast care nurse didn’t realise i had lost my hair when she saw me on Wednesday until I told her. Anyway as mother of the bride you’ll want the fab hat for that day for certain!!

Returning to work is very individual - because you can’t tell how you will be till you have the first one an as Knowles says it depends what you do. My sis also had BC and she couldn’t work because she teaches small kids so too many bugs. I’ve been lucky with not having too many side effects so I went back to work part time last month for about 15 hours a week and it’s been fine so I am upping my hours to about 21 next month. My oncologist said it was important to live life as normally as possible and it was up to me about work. For me it’s important - Partly because I am alone most of the time because my kids are at uni and my chap lives 5 hours away and partly because I love my job!! Besides, when you start planning your days round Cagney and Lacey you know you need to do something!!!

Best of luck with it all and I hope your side effects are minimal

Jennifer

Hi Daz,

so sorry you’ve had to join us, but ‘welcome’ to this most awesome site. I was diagnosed last march, age 34, and have found this sie to be invaluable ever since.

I had E-CMF chemo from May to Oct last year. Before I started it I was terrified. As with yourself I had my lovely long hair cut v.short in preparation for starting chemo and ultimately losing it. I was so scared when I went for my first chemo session, I literally had to be pushed through the door! Soon as I got in the chemo unit everyone was so lovely and the staff really put me at ease. I still cried when the chemo started, but to be honest I knew I would. I was just scared about how horrid I thought it was gonna make me feel.

Anyway, if I can do it then anyone can! Chemo was tough but v.doable. Personally I found the whole hair loss issue very hard to take. The day we got home from my first session my boyfriend shaved my hair off to a No3 for me. Dramatic maybe, but I had to take some ‘control’ back (if you know what I mean?). My hair actually came out 2 days after Epi No2. It was a shi**y day to be honest, and I cried buckets. However, I soon got used to my bald head and the perks that it brought! I think I compensated for not having any hair by spending a fortune on skin care products and make-up!!! I did have bad days on chemo, as everyone does, where I felt really rough and couldn’t leave the house. However the good days definately outweighed the bad.

I haven’t worked since I was diagnosed, although I am planning to return soon. Whether you decide to work or not is a very individual thing. Personally I couldn’t have, for various reasons, but fortunately I have remained on full pay throughout so this hasn’t been a problem.

A while ago I started a thread called ‘top tips going through chemo’. loads of forum users have contributed and many people have commented on how useful they’ve found it. Check it out if you get a chance. Almost finished waffling now I promise! When I was having chemo I hated wearing my wigs and much preferred to wear a lovely head scarf. I got nearly all mine from an american site www.headcovers.com. The delivery is v.quick and reasonable. Check out their terry towelling sleep cap, its a must!

Take care and I wish you well,

Kelly
-x-

Hi Daz, sorry you’ve had to join us here, you’ll be surprised just how invaluable a lifeline this forum is. Just sharing with someone who’s been there, is going there, who understands, counts for so much, even if the family do get a bit twitchy about me spending so much time on the internet.

I lost those months too so I completely understand - routine mammo early Jan, recall for ultrasound and core biopsy mid Jan, result of biopsy end Jan, SLN biopsy Feb, firm dx, appts to discuss reconstruction, getting angry with breast surgeon, less so with comforting plastic surgeon, mastectomy/axillary clearance/ DIEP recon 1 March, 11 days in hospital, now 6 weeks on and had first chemo yesterday, Epi-CMF for 7 months, then rads, and five years Tamoxifen. Phew. This year is written off. My youngest will do GCSEs and start 6th form. I may not be back at work all year. Can’t look as far as 2009, too many hoops to jump through first. Still, chemo will be something to add to the ‘done that’ list!

Hi Daz
Like others have said reactions vary but its good to write/post here as all support each other and actually writing down fears etc helps get it out of the system a bit anyway…
I had DCIS 3 years ago and went through mastectomy & reconstruction, 3 years later c escaped and am one of 2 % that this happens too. was dx on christmas Eve after a battery of tests, have lumps under my arm which are reducing slowly on FEC chemo, have had 5 out of 6 then am having op to remove them all - meeting with surgeons (surgeon & plastic surgeon - due to reconstruction) next week. They have talked about radiotherapy & tamoxifen, but may have to have more chemo - Taxotere but none of this confirmed as yet…
I also have mets/secondaries on my spine ‘a small deposit’ they call it.
It is frightening but trying to take each day as it comes - rest and sleep is important - listen to your body and eat what you fancy i do - OH makes what I fancy - got him to buy fish & chips the day of chemo 5! then he made lasagna last night cos thats what i fancied - enjoyed it too

weight - have put on about 5 lbs - round my tummy…:frowning: it will go ( I hope)

Work - I actually had an interview for a new job day 6 after 3rd chemo - was exhausted for 2 days after but got the job. then had to negotiate how to manage work and chemo, op etc
they seem to be great about it all, official work hours are 25 per week but I can only manage 12 max - 2-3 hrs at a time, so a slow process of getting into job but hey the longer term view is better to look at!
I wore my wig once at the interview, lost some of my hair from day 16 1st chemo, then again day 16 after 2nd then it stopped so i wear it at 5mm which is very like all my 3 sons (in 20 & 30’s) and have great compliments about it. It does look thin and cant see the back so not sure how good it is there, the top is great! I wear large necklaces and earrings to take away from the head but hey its a good look and temprary, wasnt as upset about it as i thought before treatment - think it was the support here that helped me through & the compliments from family & friends.

I do have bad days but my breast care nurse has been so supportive esp with job, she recognised i needed a focus to the day as i can easily spiral down into myself! a few days ago I had urinary tract infection and cried a lot due to pain and no sleep at all until 7am when the oncall doc gave me antibiotics. i delayed calling anyone as my temp was ok but after drinking 5pts of water i had enough and phoned. he was kind and discovered blood in urine hence the pain & burning. that was my worst night except for the fears after dx & 1st chemo which was a shock to the system, I lost my appetite and couldnt eat choc, meat, for over a week. even now the taste of stuff is odd, am persevering with wine & g&t tho !!! :slight_smile:

hope this helps
keep posting
Jan

Hi Daz, So sorry you have had to join us, this site is amazing and I am sure you will draw much strength from it , it has helped me so much.

I am a “newie” dx in mid march with a 4cm tumour having 4x A.C. chemo to downsize before surgery and thats all I know so far.

I decided from day one that nothing will change what I have so better get on with it. I am lucky so far only had first chemo 12 days ago and have had only minor side effects.

I replaced all my lovely wine( which I drank far too much of !) and replaced it with gallons of juices, soothies etc. Also changed my diet, fruit, nuts lots of fish and vegetables and can honestly say I have never felt better. I make a conscious effort to exersice each day if only a very good walk at the moment my energy levels seem to be soaring…I know it`s very early days but I am treating every one as a wonderful bonus!

Somewhere lurking deep down inside is an absolute terror, which I have experienced only once and I absolutely refuse to let it show it`s face again!!!

My friend who was a breast care nurse for 30 years said I was about to embark on an amazing journey and I was about to meet the most wonderful people so lets get on with it and beat this thing together

Good luck with the first chemo,

Will be thinking of you,

Take care,
Love ,
Janx
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