hair loss???

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wow havn’t we been busy ! everyone writing while ive been sleeping !
Glad you have got your date Shell at least you can look forward to that ! ( how odd is that ! looking forward to a op ).I bet your counting the days down ( we all are 4 u ) x

About the hair thing I haven’t noticed my legs either ! they get neglected in winter ! but yes you do lose your body hair I hardly have any left downstairs !!!.
I am not doing nothing fancy today can’t be bothered ! so we are having southern fried chicken ( only it’s not fried ! ) and boiled’s ( that’s boiled potato to you Victoria ! lol ) and beans.
I am starting to think about next Wednesday already ! ( chemo ).
Bright has her first this Friday so she is worried , just think everyone is different and (well I ) was only feeling sick for just the day I had chemo and the first time it wasn’t that long at all ! and the only other thing is heartburn ( FOR ME ) but thats no problem if u got heartburn stuff at the ready ( get some in advance ) and just a headache , thats it mainly apart from no energy . you’ll be alright just think 1 done less to go !.
Hope your all ok today love Caronx

502

Hello Everyone

Just got back from hospital. Had an appointment with the oncologist, waited 2 hours and then was told that the oncologist that I see was not in clinic today but another one was prepared to see me! She was OK but I much prefer to see the same person. With this IBC she measures me everytime and tells me whether it has shrunk and by how much. This one did not even examine me. She did however go through what happens at the Rads stage and got me to fill in a consent form. Although surgery is still weeks away (or even a month or two) the waiting list is long and they want me in the system.

While at the hospital I had my bloods done and HOORAY they are fine and I can have my last Tax on friday as scheduled.

Shell Good News that you have a date even though it is a longer wait than you wanted. Someone must be able to find drugs that keep your pain at bay.

Bright Hope your appointment went OK. Let us know - we all think about each other - thats good because it stops us thinking about ourselves all the time.

Sharon Hello. My cancer was measured the same size as yours at the beginning. When I read some of the posts where people have relatively small lumps the size of mine really bothers me. Mine has shrunk considerably over the chemo sessions but it is still there and by no means tiny. All the inflamation seems to have gone though. Was the surface of your breast very red and mottled. Mine was, and despite all the chemo although it has faded it has not gone completely. I lost my hair while on AC chemo but it has started to come back on the tax. Just fluff really but definitely hair. Eyebrows and eyelashes have completely gone. I hope they come back. I am waiting for a surgery date hopefully end of Feb beginning of March.

When I first lost all my hair I wore scaves, buffs and hats. Eventually I plucked up the courage to wear my wig and have got quite used to it now. The problem is that now my hair has started to grow, although it really is only a tiny bit, I find that my head itches more and more. By evening time I have had enough and take it off indoors. You can usually guarantee that as soon as I have taken it off the doorbell will ring and I am scurrying around trying to get it back on straight before OH lets someone in.

I really feel on a high at the moment to know that by friday evening I will have had my last chemo. My worry head will reassert itself soon after waiting for my surgery date but for the moment I feel like celebrating.

Love to everyone

Andie xx

503

Hello all,

I wiill write later - but just writing to say that both bone and CT scans were clear - I am so relieved. Thank you for all thinking about me today. First chemo on Friday.

Love Bright x

504

yipeee yai yeah yippee yai ohhh,
just heard from Bright and guess wot ??? she sounds Bright !! ( bumbum ! )
ANDIE sorry can’t remember how big yours was now ???
Be careful what you say don’t say owt about my boyfriend ! Steve is reading this lol !
I am just having a glass of Ameretto (lovely , beats your wine Bright lol )
Thats me done for now see you all later love Caronx

505

Hi again

Really pleased your scans were clear Bright.Good luck with the chemo…

The hospital have just phoned to change my op appointment, now its being done at the Surrey site on 2nd Feb…
I dont even know where this hospital is…will have to put it into the sat nav…

Take care.

Shell
xxx

506

Shell
That’s great news Shell, I’ll be able to visit you. let me know when you get info as to which ward you’ll be on. Maybe Smithers, that’s where I was. I’ll be able to visit you on the Tuesday afternoon, the day after if you’re up to it. You can let the ward staff know if you’d rather I didn’t come and I wont be offended I promise. I spent 5 days after my surgery in hospital crying and really didn’t want to talk to anyone, so I completely understand, although in my case surgery came first and it was all rather quick and a huge shock and with you, I’m sure the 1st emotion you’ll feel is thank goodness it’s been done at last! Anyway you can let me know!
Take care
Jo X

507

Hi girls,

Hurrah Bright!!! Good good news…! Good luck with the chemo. Let m eknow how you get on with the coldcap.

Andie - you do sound bubbly and great news that you are looking at your last Tax. Hope you can celebrate a bit more next week.

Shell - more good news!! Excellent.

Caron - oh I envy you your Ameretto - yummy…yummy. I’ve had hardly any alcohol since i was diagnosed and I miss it. Just gone off it.

Well saw my nutter doc yesterday. I love being able to get all my rubbish out to him - makes me feel so much better. We talked a lot about “magical thinking”. How I seem to think if I think about everything hard enough…I might be able to change things (ie … go back in time to be having regular mammograms… for the oncs to have made a mistake etc etc). Had this idea that because I was thinking about bc so much in the Summer (thinking about my Mum)…I somehow brought it on myself!! See - I said I was weird. Anyway… it was good to talk about my mad ways and I do feel better today. Just need to avoid reading sad stories I think!

So…day 10/11 of Herceptin Tax. Still have hair, but look like a witch…so daren’t let small children see me!!! I feel better, but have terrible tummy aches (almost like period stuff) and other tummy related problems…has affected my appetite hugely! Not eating well…! BUT… although I have more physical symptoms, at the mo… I feel better than I did on FEC (still less fog). Starting “toenail watch”. Def a bit sore and look a bit red. Thinking I could get the webcam out and start a toenail blog??

Clearly… I am going insane today. Off for a cup of tea and to watch my recorded (sad sad sad) episodes of Project Runway and Come dine with me!!!
Love all,
Gailxxx

508

Hi Andie

Yes surface was very red, itchy and moulted, streach marks were the worst ever, nipple still looks weird and inverted but the skin has returned to normal, 1st and 2nd FEC i could feel it get a little smaller but 3rd and 4th felt nothing, now after 1st herceptin and Tax, i can feel a big difference which I think is amazing.

Eyelashes are so small and few at the moment, no eyebrows, hair staring to grow back, no what you mean about fluffy!! Lost hair down below, did lose hair on legs but now thats beginning to grow back (bummer), under arm hair still gone. Nails and toenails all went weird, big toenails have lifted, biggest problem this time is my dry mouth, even though I drink loads water it hasn’t helped.

I’ll get date for surgery after next chemo, after all this time still haven’t met anyone at the hospital :frowning:

Good to hear you sounding a cheerfull and bubbly like me, I tell you I do not know where I have found my strength from, I still haven’t cried, maybe there is something wrong with me!!!

Onwards and upwards thats what I say.

Sharon x

509

GAIL well I keep thinking I have won the lottery ! ( do you think it will work for me ??? )

Sharon I haven’t had any eyebrows for ages ( I feel naked ! ) I had lovely eyebrows as well ! lol well they were hairy !
We are having fish haddock today with my yummy home made mushy peas ! I have had to do 2 lots of mushies cos Steve was moaning last week that I had a huge plateful and he hardly got any !! ( going to be a windy night tonight ! )

I think my tumor has shrunk a bit more ??? but won’t know till next week till I see Carol ( chemo nurse ) .
Steve said can we all stop writing as he hasn’t caught up yet ! and he said " WHATS THIS , I CAN ONLY COOK EGG CHIPS & BEANS " lol yes you can !

Shelly it’s even better that they have moved you forward a bit it’s on a Monday now (not that I will have to tell you ! ) I’m sure you already know !
right I’m off to let Marble out ( moggy ) love Caron x

510

Hi Girls

After my high yesterday I have hit rock bottom this morning and can’t stop crying, in fact I think I have cried more this morning than anytime since my dx back in august.
Why - I accepted that because this is IBC I needed to have my chemo first, and I have and I have accepted all that it has thrown at me knowing that the next step is surgery. I saw the surgeon early January and he agreed that it was OK now to operate. A week later I spoke to his secretary (a really helpful lady) and she gave me a provisional date - 26 th Feb an evening operation. She had passed the date onto the hospital admissions office and said I would hear from them. To date I have heard nothing. Yesterday in clinic I had to see an Oncologist that I had never met before. When she was filling in the form to get me into the Rads system she asked if I knew my operation date. I told her 26th Feb but I hadn’t had it confirmed yet. Her answer was ’ these dates often get cancelled’. The date is 5 weks after my last chemo. My lump has not gone completely and I am now absolutely paranoid that if it gets cancelled the lump will start to grow again. I am probably getting myself into a state about something that will not happen but now I have started crying I just can’t stop. I don’t know who to speak to- if in fact I should speak to anyone. I don’t want them to treat me like a crybaby - other people have problems jsut as bad and probably worst.

Sorry I had to let this out. I feel that I can’t do this anymore and OH just says well you’ve got to.

Thanks for listening

Andie xx

511

Hi ladies

I have been back to the GP today and he has told me to start taking the Tramadol again and has giving me some anti-sickness pills to take at the same time,hope this starts to work…

Jo- it would be great to see you if you feel up to it, I will let you know the details as soon as i get my letter.All i know is that my op is going to be on the Monday afternoon.2nd Feb…

Hope your all well…

Shell
xxxxx

512

Andie,
Wish I had your number and I would call. I’ve been sat here feeling sorry for myself with terrible stomach cramps all afternoon!! Just thought I’d log on to see if anyone there. My stupid PC keeps coming and going ont he network too!!
You can do this. I know where you are coming from, but actually you have been through so so much already. i think that we all deal with this enormous life threatening evil thing we have and at the same time we all try to do our normal lives. We’re going to “blow” from time to time and we are allowed to. Don’t put yourself down - you are not a crybaby. You have every right to cry because you’re going through something huge. I find it’s quite often an admin or hospital related thing that can set things off. I got my oncology appoitnment letter with a different doc’s name on it and I was hysterical!!!
Can you call your breast cancer nurse?? they are the ones that can make sense of things and she will know how likely your appointment is and how prone they are to cancellations. Remember too that 5 weeks away from your last chemo isn’t the same as 5 weeks without chemo in your system.

You have a right to be upset. You do have to deal with it . We all do, although I wonder sometimes about the possibility of crawling under a large rock and hiding!! But … it’s really really hard to keep going sometimes isn’t it?. Be kind to yourself Andie. Give OH a cuddle. Plan something lovely for the weekend.Plan how you are going to get the info you need to make yourself feel more in control. This disease takes our control away and all this crap with changing appointments does not help.

Many hugs,
Gailxx

513

Stop apologising!!! We are all going through this and all have our own version of the disease. There are days when I don’t stop crying, days when I bounce around and days when i watch TV all day with a hot water bottle on my poor tummy (today). When i was in hospital over NY, I was so upset all the time. I knew there were people in the ward with really really bad pain and felt stupid to be so upset. The nurse said “there are different types of pain” and that I had a right to mine and must never ever feel silly. Of course I still do, but I do think of what she said. As for thinking of things that won’t happen. We all do this… it;s natural and I think it’s also part of the whole anger thing. I will have many wobblies…so be warned!!!

I’m down the road…Oxford!

Gailxx

514

Hi

Ok Wobble over for the moment.

I have decided to contact the hospital on Monday and start asking questions. I feel at the moment that I have coped with chemo and it is now familiar, and although not pleasant, and I know it will get worse before it gets better. It does not frighten me.

Surgery and its organisation are a whole new ball game, it is unknown to me and I don’t cope with the unknown very well.

I am at the hospital most of tomorrow for tax No.4 and Herceptin No.3 so will use the weekend to decide the best place to ask a few questions. Unfortunatey although friendly, my BCN nurses usually refer to you on to another department for answers to questions although I may wander down to their office tomorrow to see if any of them are in.

Gail You are a star and you make so much sense.

Shell Great news about your appointment. The Marsden in Surrey is actually in Sutton which you will have found out by now. Parts of Sutton are really nice and quite countryfied. I hope the pain drugs work this time.

Caron Where is today’s recipe. You really should think about a cookbook if only a small one to raise some charity money. You could be the new Delia Smith

Love to everyone. You girls are my lifeline at the moment

Andie xx

515

Caron, still eating yummy choccy cake from Michaels birthday, he was very chuffed as I never bake cakes, I always buy them, so thank you for your inspiration!!

Great Shell, look forward to meeting you. I’m in on the Tuesday afternoon for support group at 3.30 so I’ll come in before that. If you like I’ll give you my mobile number and you can text me if you don’t feel up to it or if you want me to bring anything in particular for you!

For all you other girls who haven’t yet had your surgery, let me tell you, I had mine the other way round. Surgery 1st and now almost half way thru chemo and I know which I’d prefere any day of the week! Apart from being in hospital for best part of week which is obviously miserable being away from kids etc, I have to say surgery was ‘a walk in the park’ compared to chemo. Sure it’s nerve racking, and you feel pretty grotty when you first come around after surgery, but they make sure that you are comfortable and manage the pain really well. And in my mind once it’s cut out, it helps you mentally to recover!!

Besy of luck ladies, but honestly if you can cope with chemo which you obviously all have then the surgery is the easy part!

Take care
Jo X

516

Andie,

Don’t panic about the time from the end of chemo til surgery - the lump won’t start to grow again as the chemo is still in your system and has built up over time ! I know it’s something that you think about but don’t worry about it - why not ask the nurses at the chemo tomorrow ? I had different chemo but had 5 weeks from the end of chemo to surgery and it was fine. The delay also allows your body recover a bit from the chemo battering it’s had and get your immune system up a bit. I was told that chemo can stay in your body for 6 months to a year afterwards.

Good luck,

Liz

517

Hi Liz

You have so reassured me. Thank you. I would win a gold star for worrying

LOL

Andiexx

518

Dear all,

I start my chemo tomorrow (11.30) and feeling worried to say the least: the needles; the knowing that I am not going to feel well from now for at least four and half months; the constant need to cosset the hair, wrap it up and lie still at night, in the probable futile battle of losing some, most or all of it…

BUT like Jo says - those of you fearing the surgery should have nothing to worry about at all (being a surgery first chemo later girl) - the unpleasantness of the chemo will outweigh the surgery by far. The surgery discomfort passes in a day or two - honestly, there is only the inconvenience of hauling around of the drainage bottles in an unfashionable plastic bag, and the few days stay in hospital. I found the need for pain relief was only for the first day or so - and it was certainly easy enough to sleep through the night. In some ways I treated the stay in hospital as a mini-break. The nurses were lovely and I quickly learned their names and recognised their personalities. And the views over the London skyline were magical, especially the sunrises and sunsets.

Perhaps at the right time in our treatments we should all plan to meet… I know we are geographically spread - but I am sure there is somewhere we could meet in the middle - or I at least would be happy to have the excuse for a break in the North East.

Love Bright xx

It was work again for me today and the usual pattern of having to try too much to do and too little time… but I have been looking at my diary and thinking about how to scale back. Hoping I will be recovered enough to work at home from Monday and possible go back into work for some hours on Wednesday. I need to keep busy as I have been having a real low again about the thought of never seeing the married man again. All part of my previous life (as one of you mentioned here) when there were exciting things to look forward to and no knowledge of the spectre of the dark days ahead - the cancer, the separation,… but still I need to be grateful - my scans were clear, I have a comfortable lifestyle a job I like and a loyal partner.

Still I know I am on the start of a new journey - that’s what Nick the chemo nurse said yesterday. Suddently Houseman’s A Shropshire Lad comes to mind. (A E Houseman who was from Shropshire - was pining for his county whilst serving in the trenches of the first world war… or at least I think he was) I love these lines from it. Longing for the past and knowing nothing will ever be quite the same again…

Into my heart an air that kills
From yon far country blows:
What are those blue remembered hills,
What spires, what farms are those?

That is the land of lost content,
I see it shining plain,
The happy highways where I went
And cannot come again

This evening I took my cat to the vet for his annual injections, and he was so braving lying there - as the vet gave him a jab and a worming tablet, And his weight was stable, which I had been worried about as I have fed him quite a few treats over the year. He has a developed a real love of chicken jalfrezi - even the rice.

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Apologies - my last post seemed to go a bit wrong with the end in the middle … but won’t re-post as will just make things even more confused
Bright

520

Hi Bright

Not sure what time you get your chemo today, but I will be thinking of you while I have mine. I will be in the chemo suite for at least 3 hours today so I feel sure we will overlap at some time. Good Luck and don’t worry about side effects that may not happen.

Keep us posted.

LOL Andie xx