hair loss???

Hello all,

Today it is a real effort for me to post! Feeling unbelievably tired and nauseous still. But just about managed to do my work from home before going off this afternoon to St Thomas’ to get second inflation of implant. It is really beginning to get some shape back, and have been told to expect about four more fills until there is enough skin stretch for perm implant to go in at the end of rads. I met someone in the waiting room from the same chemo clinic as me - she is a few weeks ahead, but was really ill on her second cycle. She got an infection, had to have a tooth removed and had a very low platelet count. Still she is recovering now. Makes me realise, how lucky I was the first time round, and how potent the drugs are that we’ve all been taking.

When I was walking through the underground passage at Waterloo Station - I saw this poem painted on the wall. Apparently it was specially commissioned for the trains and the tunnel. Thought I’d share with you here. I really like it.

Eurydice…

I am not afraid as I descend,
step by step, leaving behind the salt wind
blowing up the corrugated river,
the damp city streets, their sodium glare
of rush-hour headlights pitted with pearls of rain;
for my eyes still reflect the half remembered moon.
Already your face recedes beneath the station clock,
a damp smudge among the shadows
mirrored in the train’s wet glass,
will you forget me? Steel tracks lead you out
past cranes and crematoria,
boat yards and bike sheds, ruby shards
of roman glass and wolf-bone mummified in mud,
the rows of curtained windows like eyelids
heavy with sleep, to the city’s green edge.
Now I stop my ears with wax, hold fast
the memory of the song you once whispered in my ear.
Its echoes tangle like briars in my thick hair.
You turned to look.
Second fly past like birds.
My hands grow cold. I am ice and cloud.
This path unravels.
Deep in hidden rooms filled with dust
and sour night-breath the lost city is sleeping.
Above the hurt sky is weeping,
soaked nightingales have ceased to sing.
Dusk has come early. I am drowning in blue.
I dream of a green garden
where the sun feathers my face
like your once eager kiss.
Soon, soon I will climb
from this blackened earth
into the diffident light.

So good to read from you Shelly and to see that you are coming through this. Much luck for tomorrow for your pathology report.

Tinned tomatoes on toast: another novel recipe Caron. We’ve got chicken tonight stuffed with pears. Should have eaten it last night -but could not quite face it.

Hope everyone has a good evening.

Love Bright x

right well this is the second time Ive posted ! ( lost it first time !)

Well have deciided on BETTY !!! it was a choice between Betty ( whhich suits her !!!) Belle ( which means beutiful ) ( which she is !)

Jordan wants me to call her Autummn or Shanne ( which an old lady had the same dog but she had a heart attack ) but she was dead nice she rolled over when she saw us & wouln’t move ( till we’d gone ! )

But I think Betty suits her ! so Betty it is !
what have I done today? caught up with washing mostly got it dried but had to finish off in drier ! but done loads .

Jam came to see me but didn’t stop ( he was going to work ).

Well thats all I done getting up early tomorrow as appointment to see chemo nurse at 10.30 am and to have have blood test and Jordan is coming with me ( bless ) and then we are getting the bus home as Steve is away and it’s only me.

Just want to say that Steve’s friend Diane , ( who found out she had BC the week after me ! and has chemo the same day as me ( although is 3 weeks behind -) so her 1st is my 2nd ! hasn’t wrote me although I live 3-4 minutes away? some people find different ways of support !
I suppose but I am glad ive got u lot !!! ( thinking about jade !)x

Hi

Went shopping today to get a few bits and pieces for my short(I hope) hospital stay. PJ’s, toiletries, puzzle book, reading book and because my BC nurse told me to, a non underwired post surgery bra. I got that in M&S and as it is needed because of a MX if you sign the declaration attached they take off the VAT. Saved me nearly £3 which paid for the donuts which went with the coffee.

Staying home tomorrow because the pile of ironing is taking over.

Glad to see you back Shell and great that you are feeling a bit better. Good luck tomorrow. Do you expect to move onto rads now.

When do you bring home the new puppy Caron - she will give you something to focus your attention on. I remember house training our last dog - it only took about 2/3 weeks but they were long weeks. Mind when he got the hang of it he was very reliable. It probably helped that I wasn’t working at the time so he didn’t get left on his own for long spells.

Have to agree with you Caron - My heart goes out to Jade and her boys.

Good Night, Sleep Tight

Andie

Hello Ladies

Gail, thanks for words of encouragement re TAX. Spent all morning crying in ONC’s office about TAX and terrified about a reaction like you had but he calmed me down and the chemo nurses were fab and very reassuring and sat with me for ages making sure there was no nasty reaction and had the antidote to hand, and guess what NO REACTION!!! Hurrah I was over the moon. Hopes dashed slightly when they told me that it was nore likely with 2nd dose, which indeed is what you said and of course what happened to you, so we shall see! The next dose for me is on my birthday, oh joy then if I suddenly have that reaction and, my imagination running riot again, they don’t notice or have antidote ready and then I snuff it in the chair on MY BIRTHDAY!!!Lol

Caron, good luck for your final FEC on Wed, be thinking of you! When’s Beautiful Betty moving in? Oooh bet you can’t wait, I’m excited for you! I’ve not offically gone back to wobblewatchers, but I’m a life long member so I’ve got all the stuff I need and am getting weighed regularly at hopital anyway, so that’s incentive enough for me. ONC told me today that it would be more difficult to loose weight whilst on steroids but thought it was a good idea for me to do it, for damage limitation purposes! Providing I eat sensibly and don’t go silly, trying to starv myself as we need all our strength to get through chemo, he also said reassuringly that onece chemo and steroids finished water retention weight gain comes off quite quickly!

Bright, nice poem, did you stand there for half an hour scribbling it down in your notepad or did u take a photo and write it up when you got home!!! I love the London underground, I’m a bit of a country bumkin at heart and don’t go up town as much as should really, considering I live so close to it thse days, but when i do go I really love London, and whenever I’m in the underground I always think of that movie from when I was a teenager, American Werewolf in London! Did you ever see it? it probably wasn’t as good a I remember it!!!

Shell, great to have you back! Can’t believe you’re coming back to the Marsden tomorrow, we really are destined not to meet you know because normally I’m there on a Tuesday but tomorrow I’m going to Guildford hospital for my Look Good Feel Better workshop which I’ve been waiting for ages, can’t get on the Marsden one till end of April, I’m hoping things will be starting to grow back a bit by then! You sound much more cheerful and I’m so pleased that your tonsilitis and wound infection are much better, will you have to come back to the marsden again after tomorrow? Take care of yourself.

Andie, thanks also for your words on TAX but I think by the time Summer gets here I’ll be all saladed out! Beginning to resemble a raddish a little all ready!!!

Well this is the first time I’ve been able to post on a chemo night, usually in bed throwing up by now on FEC so maybe this TAX isn’t so bad after all, I actually feel ok at the moment although my left foot is tingling slightly and my right knee aches a little, so we shall see, it’ a bit like waiting for the axe to fall, but again it’s the fear of the unknown, so hopefully it won’t b so scary next time!

Night night ladies, cor that was a long one, must be on steroids again!!!

Morning Ladies!!

Good Luck today Shelly , hope they have really good news for you!

I get Betty tomorrow , after chemo !! I am worried now how my moggies will get on with her??

I got up this morning thinking my appointment was this morning but when I checked it is this afternoon ! ( could have had a lie in been waking up all night ).
thanks for good wishes , just heard a woman on skynews say Breast cancer normally gets women past the menapause !! tell us all that then !.
love Caron xx

Hi girls,

Jo - glad to hear you survived!! I really did not miss the sickness…it was such a change to come home and feel normal. Don’t panic about the reaction thing either. I am phobic about hospitals and it didn’t panic me at all because everone moved so quickly and they all knew exactly what to do. I won’t be worrying about it when I go in again next week and believe me…I am a worrier!!

I’ve been signed up for a “Look good feel better workshop” too. Let me know how it goes. Mine isn’t until May sometime as they have waiting lists.

Andie - good tip about the bras. Have some underwired ones but all different sizes. Need someone to sort me out. Will head to M&S. How are you feeling about the surgery? I feel like I’ve been cushioned by chemo (weird I know) and am coming out of some kind of fog.

Caron - Betty is a perfect name for a perfect cutie. Very jealous! I cried when I read about Jade. Hubbie had hidden the paper from me, but I found it. It’s so so sad and so so quick. Can’t get my head around it.
Re: smears. Can’t have one. BC nurse said chemo messes up your cycle and to wait. But surely my cycle will never be the same again with Tamoxifen etc??? Will ask again.
Caron - did you find out if you were HER2 positive in the end?

Bright - hope you feel better. Loved the poem. You’re so good remembering to post things for us.

Shell - It was good to hear you feeling better and good luck with your results.

Lazy day for me today. Little monster and I went for a long walk with his bike yesterday. Felt like I’d aged 10 years! Thank goodness for Starbucks on route. Tea for me - a chip buttie. Shows the level of my cooking (with Andie on this one) and level of my appetite. Currently can’t look at cooked minced beef…so most of my staples (chilli, bolognaise) are out. Weird!

Love all,

Gailxxxxxx

Gail, still don’t know about her2 they havn’t said anything to me, mind you I only really see the chemo nurse, and for some reason never have all my notes together !! love Caronx

Re Jade story, devastating news, poor, but very brave girl and those poor boys! haven’t stopped crying about her actually, think it brings things very close to home if you know wot I mean!

I actually spoke to ONC yesterday about having a smear whilst on chemo. Seems to be a difference of opinion here, so I’d be interested to hear if anyone else can find out any other angle on this. I spoke to GP when first diagnosed with BC, and said that I was now due a smear, but she said everything else you have to contend with now, it’s the least of your worries! Actually it isn’t as I had pre cancerous cells 11 years ago which obviously I had removed and then had annual checks, until I got so many years clear, I forget now how many, then went back to 3 yearly checks, which in my opinion is too long anyway. GP said don’t worry, if there was anything major wrong you would know about it by now and on the off chance that you had pre cancerous cells starting now, then the chemo would sort those out and anyway whilst on chemo you may not get an accurate reading!!! So I put it to the back of my mind.
However, with jade being at the forefrount of most our minds at the moment, I ran this past ONC yesterday, who disagreed. He said that providing you have your smear test as far away as poss from last chemo, in my case the Fri before my next hit on the Mon, then that should be fine, it’s the white blood count that they worry about and he said that in the event of pre cancerous cells being found then he would want the normal course of action to be taken ie, colposcopy removal again! and not leave it to the chemo. In my GP’s defence however, i had just had to have a termination when I found out about the BC and that was 4 days before breast surgery so there was rather a lot happening and she did feel that the terminated pregnancy might effect the result as well. Somehow I forgot to mention this to the ONC yesterday, but I am going to get on the case this week and see if I can organize one sooner rather that later as it is important, and I also start tomoxifin as soon as chmo finished and am worried that in itself could effect a reading!
JO X

Can I just leap in on the subject of smear tests - I was due to have my overdue test today but period started so couldn’t. I start chemo next week. I asked whether having chemo would give a dodgy reading and was told it wouldn’t, so I will reschedule the test probably for in my 3rd chemo week when I’m hopefully feeling ok.

AWW Chloe is gonna be so upset !! Pepper has stamped on her last remaining baby !! and now it’s FLAT ! & DEAD ! ( stupid pepper , call yourself a mother ! ).

Well this is me in my FAB wig Victoria sent me ( I LOVE IT ! ).

Been to hospital today to have bloods taken & to see Nursey who said my tumor had shrunk to 9 !! I said you said that ages ago ! so then she back tracked and said " well it is shrinking " she told me it was 9 cm after my first lot of chemo !, so now I’m thinking it’s not shrinking ???
Got my last lot of EC tomorrow then onto Tax what if it doesn’t shrink anymore? what will happen ? will they give me more chemo or just operate , and hope for the best ?.

Had tuna & cucumber sandwiches today ( they were nice ).
Off to bed early tonight need some sleep after last nights waking up all night !.
Love Caronxx

Hi

Good luck for tomorrow Caron - half way through chemo. I bet when you started, halfway actually seemed a lifetime away and here you are at that point already. How does your nurse measure the lump. I found that the way they measured was very hit and miss. At the halfway point I had to have an MRI to get an accurate gauge of what was happening. Physical measurement at that point was indecisive but the MRI showed a good shrinkage. Do you see your oncologist every chemo or just the nurse. I don’t think I have seen anyone on this site who has had more than 8 chemos in one batch - think positive IT IS SHRINKING and TAX WILL HELP IT ON ITS WAY.

I love the new picture. Is it easy to change pictures - I thought I did quite well getting one on here let alone altering it.

Gail at the moment I am not worried about surgery, in a way I am looking forward to it because finally I hope the cancer will be cut away. Sorry I have forgotten, have you already had your surgery.
Over the months of chemo my OH has learnt how to cook and clean but I have managed to keep the washing and ironing under control. The leaflet the BCN has given me says not to use things like vacumn cleaners and irons for a couple of weeks. I’m not sure that OH has ever used an iron in his life. We will probably be very crumpled people for a short while!

According to the hospital admissions department I should only be in hospital for 48 hours and then a surgical discharge team will visit me at home. That sounds like a really good plan to me, I just hope it happens like that.

I well remember when I used to breed pedigree cats how stupid some mother cats can be.Several times it took days for the mums to realise that the kittens were theirs and I had to hand rear them for a few days until maternal instinct kicked in and mum worked out what to do. I never had a mummy cat stamp on a kitten but I did have mums with large litters roll onto kittens and suffocate them by accident.

Right of to bed with my really good book

Take Care everyone

Night Night Sleep Tight, Don’t let the bed bugs bite!!

Andie

Andie, No I only ever see the nurse ( who never has my notes ) Ive only ever seen the onc once before I began chemo.
The nurse only uses a tape measure and she always says " what did I measure it with last time " .
I am having a scan on Thursday 27th Feb but I doubt that they will tell me anything.
I will have to wait till I see nursie again .

I know I am really mad with Pepper ! poor baby was doing so well and all ! till his big clodopping mother came along that is !
( pepper is a guinea pig ) . well batter go to bed got crappy chemo tomoz !
Has anyone heard from Shelly? love Caron

I let you know how it goes when I come home, ( should be getting Betty tomoz too, hope my moggies are ok with her? ) xx

Caron you look fab, with that wig, isn’t it long? are you hot in it, i find I get really hot and bothered in mine, but the trevor real hair is much more comfy! It’s needs to be the way I’ve been hot flushing today on these blommin steroids.

I had a fabulous day at look good, feel better, people there were so lovely, learnt a few tricks for when eyebrows and lashes leave me later this week!! And came home with a wonderful goody bag full of lots of lovely expensive make up and perfume! A realy lovely treat. Two of my girlfriends came with me so after we went shopping for a short while then went for a lovely italian dinner! Feel really great, hardly slept a wink last night and expect tonight to be the same with steroids. don’t think I’ll clean out anymore cupboards tonight though!! so Far, I feel much better than the Fec but it is on;ly day 2. Had lots of hot flushes today and been quite red in the face, but don’t feel poorly! finger nail on right forefinger just bginning to hurt as I type? ache in knee disappeared as soon as it arrived, but we shall see. Expecting to feel a bit ropey tomorrow as steroids finish.

Decided to put old pic up of me bore nightmare began. thought it might help me stay a bit more positive if I didn’t see the new me staring back at me all the time, when I’m on here, although new Trevor wig has made me feel much better that I did, just not ready to stare at it all the time yet!!!

Shell, how did you get on at the Marsden today??? Good news I hope?

Caron good luck tomorrow for your last FEC, then come and join me on TAX, don’t worry about nurse and shrinkage thing, can’t you demand an ultrasound scan to have it measured? or at the very least demand an appointment with ONC to voice your concerns???
Lots of Love
Jo X

Dear all,

Today must have been worst day so far since starting chemo. Felt so tired and also had an unexpected day in the hospital, as my arm rash got a bit worse as did the swelling in my forearm so went back to the chemo unit. The doctor there sent me for an ultrasound which showed I had several clots in superficial veins which could be contributing to the swelling - and arm rash is a bacterial infection. This means that I’ve been prescribed antibiotics (for rash) and now have to inject daily anti-clotting agent into subcutaneous tissue (for clots). One of the nurses trained OH to inject me as I could not bear to inject myself. I also have to have a PICC line fitted which I am really scared about as the line goes really near the heart.

At least my hair is still holding out so far. I would love to wash it but dare not take the risk, but will celebrate mid chemo (after next session) by gently rinsing it in tepid water if it is still in situ. There is still a long way to go - including the possibly harsher effects of Tax. Just have to wait and see.

Jo so pleased that you feel better about yourself with your new wig. And would love to know the tips about they eyebrows and lashes.

Gail - i did photograph the poem, and then also found it online - so it was a matter of just copying and pasting.

Shelly - hope you are okay.

Caron - good luck with the chemo … still thinking about the guinea pig baby.

Love Bright x

Love Bright x

Hi girls,

Sick of this cough now!! Wish it would go away.

Am seeing surgeon this afternoon and am nervous. Makes it all very real. had pushed thoughts away. On the one hand…will be good to have the c cut away. On the other… getting used to a new flat side. Also, it’s the same clinic I was diagnosed in, so hoping my panic response does not kick in.

Re: size. My Onc measured it this time and when I checked my notes from my last visit…it was a centimetre bigger!!! BUT…she said it was slightly smaller. I think the way they measure is a bit hit and miss. I have an MRI after my last one next week…so I guess that will say for sure. It doesn’t feel much smaller to me, but it is much softer. Onc said they would do surgery whatever happened. . I see my Onc every time I have chemo.

Gennie - thanks for the info about smears. Will ask about it.

Caron - my goodness…a guinea pig massacre!!! Hope your chemo goes OK. Love your “hair”!

Jo - glad you’re surviving Tax. I had red face too!!! Lovely photo.

Bright - what a nightmare. Glad to hear you’re OK. They keep looking at my arm with suspicion as it has developed abit of phlebetis (???) too. Just hoping it can hold out for the last Tax.

Shell - hope you’re OK!!!

Time for another cup of tea now…

Love to all,
Gailxx

Victoria >>>>>> When I got my ablutions this morning ( swallowed a dictionary in the night ! ) I put my long lovely curly hair on and Steve said " wow I really like that one , it’s just like your hair only curly )" so can’t thank you enough !!!.

Jade Goody ppl have been calling her saying she shouldn’t be selling her story , but who can blame her she’s only doing it for her boys.

Ive had my brekki and my anti sickness pills (just in case) so they will already be in my system and working by the time I get to hospital.

Thanks for all good wishes yes last EC YIPPPPEEEEE , I hate that epirubicin!!! love Caron xx

Hi

I have just walked to the chemist and back!!(Just over a mile I think) So what you may be thinking.

Since the last two doses of tax my legs have been a real problem, I like walking but have had to walk very slowly and not too far in case I could not make it back home again. The big muscles in my thighs and my shins have been very painful. Well today I had had enough and after OH had left for work decided that this was not going to beat me, and I made it all the way there and back without getting stranded.

Enough of me I hope everyone is having a good day

Andie

Dear all,

I cannot stop thinking about Pepper’s baby - and how terrible to be squashed.

I have a bit more energy today - and like you Andie I decided to take matters in hand regarding exercise and I’ve not even started on the Tax yet (still have another FEC to go). But walked to and from the railway station today which meant a steep uphill climb this afternoon. Good to get the legs working and expand the airways.

I worked in the office this morning and then left about 2.30 to come home for a rest and do some more hours from the comfort of my sofa. I do enjoy going into to see colleagues as it gives me back a sense of normality.

We are having lamb chops for dinner with sprouts and cous cous. All is easy to make which is what I like.

Write later.

Love Bright x

LOOK here she is !!! isnt she a darling !!!

Shelly thinking of you xxxxxxxxxxxx
love caron x

Betty, welcome to your new home and your lovely new mummy! Caron how did your last EC go today, I do admire you being able to post after chemo, I’m normally too out of it after FEC!

Shell, thinking of you and hope to see you posting soon!

Day 3 after 1st TAX, still feel fine, much better than after FEC. Finger and toe nails throbbing a bit though and couln’t taste my dinner without a pound of salt on it, so if the BC doesn’t get me, then a Stroke will I’m sure, how cheerful!
Night night everyone.
Jo x