hair loss???

Shell - I really am so so sorry to read your latest post, and just cannot believe that your hospital takes so long to organise tests and treatments. I will be thinking of you again on Friday… and have actually been thinking of you every day since you said about the neck lumps. Not sure what I can say … but even if they do test postive for cancer - they do not count as secondaries, and it is just your lymphatic system doing its job to trap cancer cells.

Gail, I know you are worried about the surgery - and I’ve written this before - but really it is over in a trice. The chemo, well I cannot believe how unpleasant it is by comparison… just hope it is working to keep the cancer at bay.

I went to Knaresborough this morning, a quaint market town about 20 minutes from York - with an impressive viaduct stretching over the river Nidd. There are many steep narrow streets with snickets (tiny passage ways) in between - where it is possible to touch both sides with out-stretched hands. Had morning tea and a lavender and lemon scone in a tearoom looking down on the bustling market square. An attractive feature of many of the buildings is that they are painted in a black and white chequer board design. Many of these are visible from the town’s highest point: a hilltop with the ruins of Knaresborough castle on the pinnacle - with outer sections of the walls remaining along with the dry castle moat.

Then went on to spend the afternoon in the spa town of Harrogate, complete with refurbished Turkish baths and a Victorian arcade of shops with wrought-iron work. The high point though was a late lunch of roasted tomato and celery soup in the drawing room of the Old Swan hotel, a grand hotel - most famous for being the place where in 1926 Agatha Christie ‘disappeared’ for ten days. She stayed there incognito under the name of her husband’s mistress - and her disappearance sparked the country’s biggest ‘manhunt’ at that time - the first to involve aeroplanes. Someone at the hotel eventually noticed her and called the police - and her husband went to collect her. She seemed quite calm, and insisted on staying on for the dinner dance before leaving with him as as couple. He put down her act of irrational behaviour to suffering the after effects of a car crash several days before (crashed and abandoned her car at Sunningdale Station before boarding a train to London and than an interconnecting one to Yorkshire). Her behaviour though was more likely to be a reaction to her husband’s infidelity at the time, and this may pan out as they divorced two years later… Today though I just enjoyed the views and the soup in the drawing room and almost nodded off in front of the log fire.

Sorry - realise none of the above has anything to do with bc. But have not been away since my diagnosis back in early November, and realised these last couple of days - that a change of scene can sometimes just make all the difference in learning to cope with the disease, and how precious life is - not least for sharing it with nearest and dearest and also for taking in new experiences…

Love Bright xx

Hi Girls

Boy, I have got to get to bed - reading through the site from day 1 and so much resonated with me.

I was diagnosed on 12 Jan, like one of the previous posts, from seeing the breast surgeon it wa a whirlpool og mammo (my 1st), ultrasound, needle aspiration, 2 cone biopsies to being told it was malignant with 2 hours. My own GP and I though that it did not seem like any signs of BC that we had ever heard of (more like a wee bit of sinew). I have never hasd lumpy breasts and this wee thing didn’t overly concern me. Like so many of you, I have always checked and considered myself be be breast aware.

My dx, which I got within a week was "poorly differentiated (worse case scanario), invasive ductal carcinoma, high grage. Tumour was 4mm wide, deeper than it was wide - size of a golfball - and attached to the skin of my top cleavage. Also er neg and pr neg, so it looked that I was also trip neg.

Then hte sausage machine of which we are all to familiar.

with me it was CT scan (still don’t have the results back!) echocardiograph ecg, Sentinal node biopy (which looked clear at ultrasooung, but proved to be 2 out 0f 5 involved) So will get all lymph nodes removed at surgery.

On 4 sessions of FEC - usual s/e, the worst being constipation and fatigue - boy lifting your head off the pillow is a task. Got FECed (so to speak) on 20th Feb, and on Tue got the dreaded ‘tingle’ and the hair is moultng more than my 3 cats. Still havent had my wig fitting because they brough forward my treatment because the cancer was so aggressive. Had to cancel 3 times, and the hairdresser had to cancel once as she had 'flu. Can’t wait to have my nice short black hair shaved. The feeling I have is of mild sunburn coupled with a feeling like you have bumped your napper on a cupboard dooe! Didn’t expect the loss of hair ro be a physical pain. Emotionally - for sure. The first thing the Nazis did was to shave prisioners heads as it it so intertwined with personal identity.

Getting my next FEC on Friday, but, chaps, I has one bit of good news, apart that at my age 21 + VAT ahem…, my heart was so stong that I could have surgery and chemo in the same week, as tey did. But God I am breathless and white as cheese. But I asked Simon, my wee Irish onc doc if my HER2 was pos, meaning I was trip neg -he said that he had a verbal report that I am HER+, which means a better prog.

Still feeling like warmed over crap though - no getting away from it. I try on good days to pack as much in as I can as the next day I amight be wiped out!

So lasses, please spare a thought for me on Friday at 2pm for my 2nd course of FEC. I ma hoping it will be easier than the first. The onc unit forgot to give me my follow up jabs, steroids and antiemetics so I had a rough few days first time aroung!!! Got chemo on Fri, got meds on Mon and my nurse sister gave me jab on Tue. I couldn’t open my eyes and had thrown up … a lot… of bile. After the meds, it was minor s/e except for the above … got everything in place now. Or so I hope.
Signing off with a sore scalp. Hope to see some wggies tomorrow as god knows how mush hair will be on my head and on my pillow tomorrow!!!.
On my big cancer shop I did buy hats, scarfs etc, so will have something to tide me over.

Just dnt want to wear Cancer like a signpost. At least now just yet.

Been great sharing your posts and hope you gals will welcome me into your community.

Love and lollipops

Nettie xx

Hello all,

Welcome lovely Nettie. You have an excellent way of describing things (warmed over crap…brilliant description)!!! I’m sure your next FEC will be better if you have the right drugs this time. Steroids were my friends!!! I wasn’t as sick the second time.

Bright - sounds like you are having a great mini holiday! I love Harrogate - haven’t been for yonks though. Liked the Agatha story.

Caron - My Tax hit me at the weekend…so it was about 4 days post chemo. Got aches and pains like flu. No nausea though! Then got tummy issues the following week.

Andie - hope you are feeling better an dgetting out and about more.

Thanks for all your reassuring thoughts on surgery. I guess it’s all the unknown to me as I’ve never had an op and of course i’m worried about managing the hospital phobia too. I know I will be in for at least 4 nights as that is their policy…no quick escapes for me. But… open opening hours and small ward, so hoping I will cope OK. Will just bury myself in Heat magazine and others!! Just keep looking at my breast and thinking “this time next week it will be gone”. It’s just weird!

Shell - thinking of you constantly.

Love all,

Gailxxxxx

Hi Girls

You are very welcome to join in with us Nettie. If you have read this post from the beginning you have earned your place in our little group. Which part of the country are you in. We seem to be spread all over the place.

Shell My thoughts are with you along with everyone else.

Gail You will be absolutely fine, and in a few weeks time reassuring others who are nervous of the operation part of this journey.

Caron I was never ever as amazingly curvacious as you. I’m green with envy.

Bright The break will have done you so much good. York is on the list of places I would like to go to one day.

Today my last drain has been removed. At clinic yesterday they checked the results of the sample that had been sent for testing and there never had been an infection. I must wait now to see if a seroma developes.

They did not have all my operation results available and I must go back next week; but the one result they did have showed that when they removed my cancerous breast there was no evidence remaining of cancer - the Chemo had cleared the lot. I could not stop smiling to the point my mind went blank(Yes-Again) and I forgot everything I wanted to ask. I will go with a list next week.

Love to everyone. Sorry to those I have missed out

Andie.

Hi

I’m bored again. Another one of my cats - Paddypaws. She is a dilute tortoishell and white British Shorthair.

Andie

Shelly, thinking of you and wishing you well.XX

Nettie, welcome! I remember the FEC(ed) feeling you describe and I’m sure 2nd will be much better for you now you’re properly prepared for SE’s. I had 3 FEC’s and each one was different.

Caron, how you doing after first TAX. Much better isn’t it? I had to have GSCF injection the day after this time as I was hospitalised with nutrapenia (not sure on spelling) last cycle so trying to avoid same happening this time. I’m on day 4 now and feel crap, have literally slept all day with aches and pains but they didn’t kick in till day 6 last time. I think it’s more a reaction to GSCF rather than TAX this time. Then to top it all , got another period Tuesay 6 days after the last horrific one finished. Hormones all over the place and still trying to reach a decsion as to have injections to switch ovaries off or not! Aaaargh! Why is nothing straight forward! Caron, have you got the sludge gob yet? That’s a bit of a bummer with the TAX thing, but only lasts about 10 days!! Can’t believe you’re hair is growing back already, why isn’t mine?

Gail, did you hair start growing back on TAX?

Andie, don’t worry if you do get a seroma, I had one which was up and down like a yo yo for about 3 months and then suddenly went. My nurse friend said it was a good thing because it’s all healthy fluids which aid healing. It did’t hurt at all, just felt a bit odd at times, but all fine now!

Bright, sounds like you’re having a nice time!

Lots of Love everyone
Jo XX

hello ladies,

just a quick update tonight as hands are sore (I have to guard against RSI).

Got back from York in the early afternoon and went straight to hospital appointments. Dermatologist is pleased with my arm’s healing this last week and says I won’t need a skin graft though will still take eight months to settle down.

Oncologist is happy for me to have third cycle on Monday after having PICC line fitted at 9am on same day.

House is cold tonight as heating not been on for a few days… don’t like feeling cold. I love the new cat shot Andie.

Bright xx

Hi Nettie welcome wonder where you are from? though from your speach( unless you type really fast lol).

Well I know I said I wouldn’t watch Jade again !! but I couldn’t stop myself! was soo sad poor girl.

My tax was ok going in alot better than the EC !! feel tired already though haven’t got sludgy mouth (yet!).
quite pleased with my eyebrow growth but my right eye seems to be growing faster than my left (why??).

Have still got a slight headache ( maybe tiredness or steroids? last of them gone now!)
I asked my nurse for some nystan (just in case! better to be prepared than have to wait for prescription!)

I have noticed pain in my tumor so hopefully something is working?.

Bright glad your getting your chemo Monday and your picc line no more injections for you my dear!!.
got to try and go to sleep now night night love Caronxxx

Wow that was a night to remember!! (NOT)

Kept getting sweats so put fan on then kept walking up all night]trembling ! thought I was on a train !! and dripping wet ! still woke up with massive headache!! :frowning: xxxxxxxxxxxxxx

Where is everyone today???

Stayed in bed all day (just had my ablutions!) Does anyone else get the smell??( chemo smell, I could smell it on EC and now on Tax)
I am not going to keep all my new satin PJ’s after all this!!

Also one minute I am starving then when I eat I feel bloated !
Can’t win.

Betty is going for her injection today Steve has had to take her , as I am a slob today and can’t be bothered to get up & moving.
Hopefully I will have more energy tomorrow?? ( can’t count on it though?) Love to ALL Caronxx

hi Caron,
Yes Iremember chemo smell, its horrible isn’t it?
The steroids made me feel so hungry, and then with TAX I couldn’t eat for days .I think you are wise stocking up on Nystan, I had terrible thrush. I lost count of the number of courses of Nystatin I had. I had oral and vaginal thrush. It really was most unpleasant.
Don’t feel guilty for staying in bed. I had plenty of duvet days while on TAX and even now 3months on I still have days when all I want to do is sleep.
Have agood weekend,
Kathy

Hello all,

Another Friday night marking the end of another week. It has been a mixed one for me - the week that is. On the one hand it was good to get away for a few days and to take my mind off the illness, and on the other hand, going back to the hospital yesterday for a check-up with the oncologist was a sharp reminder of my life as it stands for at least the foreseeable future - injections, scans, uncertainties, life expectancy projections etc etc. The act of going away made everything so much starker somehow: the battle between sickness and health and living and dying.

I used to approach life in a care-free kind of way - but now, I feel as if I have a cloud of uncertainty above me… dark thoughts I know, and I tell myself not to have them - that none of us should have them. And I pretend they are not there, by diverting my mind to other things - but they are there nonetheless. And if I only stop thinking about the other distractions for a moment like a project at work, or what to make for supper, then those scary thoughts come flooding back into my thinking space.

Well going to bed soon, it has been a long week. I am thinking about you all and the various issues that you face.

Hope you can enjoy the weekend.

And on a change of subject … I have a real love of New York City, and try to go there at least every year or so. I stear clear of the expensive Manhattan hotels which would mean that I could only afford to go for a mini break - and opt to stay for a week or so in the suburbs - especially Queens and then take the short bus ride into the centre each morning. In the evening - we stop by the tramways diner for supper and watch the cable cars sweeping up and down from the edge of New York City and landing on Roosevelt Island in the centre of the East River. Then on the bus journey back I like to watch the New York Skyline glittering behind me - getting smaller and smaller until we pass under the iron girders supporting the subways in Queens…

If like me you love the city as well as have a keeness for nostalgia then I can recommend a wonderful book, the slimmest of volumes written by E. B White in 1948 (most well-known for writing Charlotte’s web) - it is about his visit to the city on the hottest weekend of the year and he evokes the city like no other… here is a little account I just found on the web:

In the summer of 1948, E.B. White sat in a New York City hotel room and, sweltering in the heat, wrote a remarkable pristine essay, Here is New York. Perceptive, funny, and nostalgic, the author’s stroll around Manhattan—with the reader arm-in-arm—remains the quintessential love letter to the city, written by one of America’s foremost literary figures. Here is New York has been chosen by The New York Times as one of the ten best books ever written about the city. The New Yorker calls it “the wittiest essay, and one of the most perceptive, ever done on the city.”

From the introduction
In 1947, I was a young editor and writer with Holiday, a new and lively monthly that invited top-level authors and artists and photographers to participate in the emerging postwar travel boom …E. B. White was an inveterate non-traveler, however, and when Ted Patrick, the editor, invited him to leave his home in North Brooklin, Maine, and revisit his old haunts in New York for the magazine, he went along with the idea mostly because of me, I suspect, and because of the season. I was his stepson, and his byline in Holiday would be a thrill for me and perhaps even a little career boost. And besides, the assignment would take him out of New England in mid-July, which was hay fever time Down East. He called me up and said OK, he’d give it a try. He told me that Patrick’s letter, offering the assignment, had begun with the thought that he might “have fun” writing about New York, and he wanted me to tell him that the project had almost foundered right there. “Writing is never ‘fun,’” he said ominously. Just the same, he came down (by train) in hot weather, put up at the Algonquin hotel, across the street form his old New Yorker office, and then went home and wrote. The rest, including the heat wave, is in the book

Love Bright xx

Hi Bright - it’s tough, isn’t it, being two different people? The one who is your old self, who copes cheerfully with life, manages family, home, probably career, enjoys reading a good book or watching a weepie movie, or walking in the park. And the terrified “sick” person who has to have needles stuck in them and doesn’t know how close they are to falling off the cliff.

How do we all cope? I’m fortunate in that I tend to have a kind of natural bouyancy which keeps my spirits up. And I love old war movies, which have the bonus of reminding me that life comes with no guarantees anyway. I think of all the many, many people who have survived and thrived - like my Auntie Alice, who had a MX in 1937 (they used to take a chunk of the chest wall in those days, and there was no rads and chemo) and survived to 1957, when she died of something else! And my friend’s mum, who is still playing tennis 30 years later. I try to confine my “worrying” to specific times, and not let it spill over - like I will allow myself to go and look up Angelina Jolie’s mum, or Linda McCartney, but when I’ve read them I go to another site which has nothing to do with this horrid thing.

Katemate!
you have so made sense to me!
especially today Ive got thrush (already) and a sore throat ( don’t know if this is thrush too as never had it orally b4!!)

Getting pains in my legs / arms/ fingers / knees!! is this normal??

Nearly fell over twice !! ( already dizzy with my hearing loss and this makes the dizzyness worse )
Ah well at least no constipation with the TAX!

My Mum has been today ,I am still bedridden atm so Steve quickly tidied all my copious amounts of chlothes away!, don’t know why he buys me so many?? still got hoodles & hoodles I have not worn!

Coffee tastes garbage as does tea ! maybe I will have some Asti Steve bought me later??? ( maybe probably!)

Has anyone heard from Shelly ???
also everyone seems to have gone quiet!!
I’m not writing all these posts on my own you know !!
GET BLOGGING !! love Caron xx

Sorry Caron, just feel so achey and painy and headaches and sore nails and feet and proper sorry for myself and sludge gob and now trotski’s to add to my list of TAX SE’s and tired to, can’t be arsed to do anything much at mo, so prob best not to post when I’m on a downer! Had enough of this shit now, want my old life back!!!
Jo X

Aww bless you JO !!

Hows you think I feel when Bright says to me " hey you going out this weekend??“” EMMMM NO lol
Don’t know how she manages it ( I really don’t) even my fingers hurt now!
Glad your ok thought ( when will all these pains go??)
only just bloody started! love Caronxx

Aww bless you JO !!

Hows you think I feel when Bright says to me " hey you going out this weekend??“” EMMMM NO lol
Don’t know how she manages it ( I really don’t) even my fingers hurt now!
Glad your ok thought ( when will all these pains go??)
only just bloody started! love Caronxx

Aww bless you JO !!

Hows you think I feel when Bright says to me " hey you going out this weekend??“” EMMMM NO lol
Don’t know how she manages it ( I really don’t) even my fingers hurt now!
Glad your ok thought ( when will all these pains go??)
only just bloody started! love Caronxx

Aww bless you JO !!

Hows you think I feel when Bright says to me " hey you going out this weekend??“” EMMMM NO lol
Don’t know how she manages it ( I really don’t) even my fingers hurt now!
Glad your ok thought ( when will all these pains go??)
only just bloody started! love Caronxx

Hi guys,

Bright and Suzanne - your posts made so much sense to me. I think one of my (many) problems with the op is that it isn’t the end of anything. I have to live with uncertainty and querying every ache and bump. It really brings me down …plus knowing that my big nasty and HER2 status makes me high risk for more crap! I’m so scared i won’t see my little monster grow up!

Anyway…enough misery… I know we all have these demons. It’s so good for us all to be able to talk here isn’t it!

Monster’s party yesterday (20 3 and 4 year olds) went well. he loved it so so much. Of course I felt vaguely evil towards some of the Mums who I percieve as having a normal life!!! BUT…on the whole I forgot everything and had fun and last night I even have some wine.

Off out for sunday lunch today … and then d -day tomorrow…gulp!!!

Caron - aches and pains very very normal on tax! Take pain killers. Mine eased off in the second week to be replaces with tummy problems!!!

Much love all,
Gxxxxxx