Diagnosed 29th - Hello Ladies.

system · 27 January 2008 08:51

Good morning Ladies!

I am a bit of a morning person, so am getting on here while I feel bright and breezy (or should that be winsome and windy? lol) The leakage is now down to “half a maternity pad down the bra” and the swelling is going down, thank heavens. OH said I nearly took the roof off with my snoring last night, it is the only decent sleep I have had in a week.

I am going to work this afternoon, not to do any work but to drop off a printer we don’t need any more, also I think OH will be glad to have a change of scenery. I was very down last night but pulled myself up again this morning. This leaking is just so frustrating and it keeps soaking through to my clothes etc. It will clear up on its own, apparently, although if I don’t see it stopping by tomorrow I will be back at the hosp.

Dear Dilys, I won’t even begin to say that I know what it is like coming out the other end, all I know is the Dr Peter Harvey article and when I read that, I thought how I could imagine it. Have you seen it? For anyone who wants to see it, just G**gle: Peter Harvey+after treatment finishes. Anyway, Dilys, I hope you are still on holiday countdown? That’s great news about the hair as well. Are you going to continue wearing your turbans for a while or can’t you wait to get rid of them now? When people come to the house I have been modelling my buffs and turbans for them ie so they don’t get so much of a shock when they see me in them later.

Julie A difficult day for you yesterday, honey. Well done for being so brave, it is my head shaving next week, my friends think I am crazy doing it in advance but I want to show it who is boss! OOOH it sounds very complicated your work set-up, at a big place there are always so many procedures and people to inform, glad to know there is a plan in place now.

Dyzee -blowing a hooley? What a brilliant expression and very descriptive! Hope you enjoy your roast dinner. I haven’t seen anything of Wendy on any of the threads, she will be back when she feels up to it, all we can do is keep her in our thoughts and hope all will be well. I can’t believe your next chemo is here already, just think, you will be halfway through! whoo-hoo. I already know what you mean about putting on a happy face for yet another person ringing or coming round so heaven knows what I will feel like after chemo, it always seems as if people call when I want to be left alone and times when I am down, like last night, I get not a single text! Well, people aren’t psychic and I guess it is for me to initiate contact (but when I feel bad I always think they will think I am a right moaner). Have an enjoyable day, my love.

Shonagh-What are you up to today? Re babies, I am in a funny situation in that all the procreation is going on for my husband’s kids, not mine (luckily, cos one of mine is 13, lol!) so I am only a step-grandma and it is a new role for me to play. I have a very small family, Dad no longer here, Mum lives 70 miles away, so does my sister (who doesn’t have anything to do with me and hasn’t even dropped me a card to say she is sorry re my BC!!) so it was strange to marry into a family where OH is one of nine kids and he has four kids himself, I am still finding out all my step nieces and nephews names (and their kids…lol) Hope you have recovered from your party now, I loved your idea of laminating the latest news of your dx and treatment and leaving copies at the bar!

Lots of love to everyone, Maddy and Wendy too!

Louise

system · 27 January 2008 10:26

Hello Ladies

Well my weekend just keeps getting better. A couple who are the best friends we could have rang up yesterday to see how I was and They are having a baby so even though its not a sister or niece or anyone its flamin marvelous news and WOOOOOO HOOOOO!!! they thought they were going for a 12 week scan and its come out as 18 and a half so they are due 14th June. Lovely Lovely Lovely!!!

Louise: My sister was a stepgrandma before she was a mum so kind of know what you mean but its still lovely news and another thing to look forward to. We are a small family too, I have 2 sisters with two children each and mum and dad who are separated. I do have various aunts uncles etc but they are all in New Zealand or Scotland so dont see them apart from weddings etc. Phils family are the worst excuse for relatives I have ever known and its far too long winded to type but they haven spoken for years. Its a real shame for him as he is the sweetest man alive and would do anything for anyone but they just pushed him too far once too often so he just stopped trying and they prompty dumped him like a hot potato!!
Hope your drainage situation sorts out soon and no lifting that printer. I can only assume the fact that Phil not letting me lift a finger has helped with the settling down so I know its fustrating but just try to take it a bit easier will you. I have vision of you after chemo still doing your shopping with a handy little barf bag just in case!!LOL

Dyzee: I know I was feeling like I was missing out but sorry I’ve kind of joined the waiting for the baby club but not on the scale of all these glamourous grannies in here. Blowing a Hooley??? Love it I am going to add it to my vocab we get some awful gusts as we are open fields at the back so that is just the word. Re the Buffs have you thought about tying a floaty scarf arounf the buff a bit like Biba in the 70’s to give you a glam look? If tomorrow results in chemo thats the route I’m hoping will work best for me.

Julie: Hi hun my OH is on 10mg citilopram a day and I am on zopiclone for lack of sleep so snap. I went to the docs and the zopiclone is only supposed to be for a month (according to the instructions) I have used 20 but over the 6 week period. He has given me another 28 but also something else to try first as he is a bit worried about the zopiclone being quite addictive though I’m not sure its the drugs thats addictive more like the thought of a decent nights sleep. He has suggested a mild anti anxiety drug I have forgotten the name (normally taken as 75mg in the day) to take 25mg at night instead of zopiclone so I will give it a try. He has said it may leave me a bit like I’ve had a glass of wine for a few days so I am leaving it until after Monday as I have my ongology appointment tomorrow and want to be clear headed.
Well done for the hair shaving. I have found my friends with clippers preparing myself for the chemo news if it happens tomorrow.

Dilys: Raspberry flavoured!!! now I’m all for extra fruit and veg but aI draw the line at licking shower gel for vitamin c. Joking aside enjoy. It must me lovely after using none scented stuff for so long. Enjoy. Less than a month to the holiday now. You must be counting the days.

Well I am hoping the get out the wellies today and talk the OH into a bit of bog trotting up the canal but he is on antibiotics for laryingitis (sorry if thats spelt wrong) so it may end up with me pulling out my bottom lip (another tip from the crazy sexy cancer tips book highly recommend it if you are that kind of girl. ( there is a web site Crazy Sexy Cancer have a look if you have time its not too new age I promise).

No doubt I will be on later tomorrow night with the onco outcome. Fingers crossed (still kind of hoping they deide on chemo just because I think I will feel like everwhere is getting a good clear out…mad I know and remind me of this if I ever complain!!!)

Hope Maddy and Wendy are Ok. Passing out good wishes, love and luck to all. Shonagh xxx

system · 27 January 2008 15:55

Me again, just a quickie. How strange that having written this morning that I haven’t heard at all from my sister (in fact havent spoken for almost 3 years) she actually phoned at lunchtime and said she would come and help me or whatever I wanted. How much of a coincidence is that! I said the best thing she could do is to bring Mum over occasionally as Mum is 76 and only drives in a radius of her local few miles. But it was great to speak with her.

Good luck tomorrow Shonagh! will be thinking of you, chuck.

Love to all

Louise

system · 27 January 2008 19:45

Hi All

Shonagh - if it is chemo then it is for the best my love. We are living proof that it is doable. And if it is and if you complain then we will give you a good slapping my darling!

Louise - so pleased about your sister. Hope you and she stay in touch.

Aren’t familes complicated? I have a brother and two nieces. Both parents now dead sadly. No children of my own. But also a step daughter, and her husband and two step grand children. They are wonderful and such a joy in my life.

Can’t flick back now! Damn. Love to everyone else and more tomorrow once inflated!

Love

Dilys
xxxx

system · 28 January 2008 08:17

Hi Shonagh,

Good luck today. We will all be thinking about you and holding your hand.

Love and hugs,
Dyzee.X

system · 28 January 2008 12:37

Hi everyone -
A weekend away in Dundee helping our daughter finally move out of her flat and move to Dublin and I return to 26 posts from you all !

I’ve finally got the results of my hormone receptor status…they haven’t tested ! The oncologist finally rang this morning and admitted that they don’t routinely test DCIS so I will never know ‘officially’ if I need the Tamoxifen ! He did state that it was ‘very high grade’ and had the potential to escape into full blown cancer so, as my surgeon originally felt I ought to take it I’ve weighed up the pros and cons and decided to carry on taking it ! So there!!!

Louise - I can’t believe you are still leaking!!! How much more can you be expected to put up with? How lovely to hear that your stepson and partner are expecting a baby boy - funny how you wait so long for a grandchild and then two come at once

Julie - how high was your temperature??? Glad that it has subsided for you - it was probably your body’s way of preparing for the head shave - hope that went well and you’re not feeling the cold too much.

Dilys - know what you mean about the cleaning - having seen the skirting boards in my daughter’s flat this weekend I’m beginning to worry about mine - and I do have to find space for the trailer and car full of the possessions she couldn’t ship across to Ireland so I may have to bite the bullet and start work.

Dyzee - hope you are well - I’m starting back at (real, paid) work at the museum tomorrow for two sessions - should be fine as its with classes from the school I used to work at - i.e. sympathetic teachers and great kids

Shonagh - your scar sounds very similar to mine - mine was just around the nipple and only sank due to the second op - I think I may have my other breast reduced in size to ‘match’ (hopefully without the sunken area!!!) rather than having the damaged one ‘tweaked’ as suggested by the surgeon - I still want to walk along Maspalomas topless without feeling ‘different’

Sorry can’t remember who wrote about Noddy in a post but I thought you all might appreciate this : At the weekend we visited several of our daughter’s friends, one of whom has a very bright three year old. Our daughter was teaching her how to say ‘Cheers m’dears’ when taking a drink but changed it to ‘Cheers Big Ears’ - the little one replied (without prompting) ‘Cheers Noddy!’ Thank goodness we didn’t have full mouths at the time!

Love to you all (and those I haven’t mentioned by name)
Maddy xxxxxx

system · 28 January 2008 21:15

Hello there Ladies,

Well after getting off the phone to basically everyone and explaining everything here I am with the treatment programme and facts and figures. I am so impressed with my oncologist and his registrar I was begining to think they may have my house bugged because they did exactly what I wanted. Gave me the treatment programme they want to use and then backed it up with %'s and even showed us it on his blackberry palm pilot thingy.

Here we go…19 sessions of rads, 15 on whole breast and 4 targeted at the crater, tamoxifen for 5 years and as it seems I am the incredibly er+ the machine says zoladex injections in my stomach for 2 years is the way to go. The % with this programme are 94% of reaching 10 years + and if I do rads, tamoxifen and chemo it only goes up to 94.8%. they have said I can have chemo if I really want it and he almost insisted I have a second opinion but both Phil and I had discussed this long into the night on more than one occasion and had decided anything over 90% on the 5 years was good and to make a difference the chemo had to be over 1% or more
so we decided not to swap the box and Deal at programme option number 1 without chemo. A big scarey decision and I suppose only time will tell but the 3 monthly check ups for 2 years and 6 monthly for the remaining 3 and the monthly doctors appointment for the zoladex has re-assured me that I will be closely monitored.

Got a sick note too, for 2 months to get me used to the hormones and through radiotherapy (starting in about a month) and they have suggested if I can manage not to go back to work until its all sorted and settled down (mid April). Blimey that seems a long way off!!!

So thats it for the time being from what I can gather no more hospital visits until rads at Christies. Feel very wierd to think I start the menopause tomorrow. At least I am kind of prepared for it. Oh one small hic-cup the cyst in my left breast that started this saga has started to fill up again. Oh joy!!! it looks like its going to be a bit of a pain. I have an appointment in two months to have it scanned and re -drained but as its the thing that may have just saved my life I find it hard to be annoyed with it so I suppose I should welcome it back.

Maddy: Welcome back I was beginning to worry. I’m very interested in what you said about getting the other boob (none BC) made to match. I have been told that rads may well shrink my BC boob further and lift it too so this reduction/lift on the other sounds fab.

My BC nurse said it would be a year before my naughty boob settled down so I may just go for that now I know its an option.

I would like to say thank you so much for all your wishes (they obviously work) I couldnt have got through the last 6 weeks without you and I know the rads and hormones will be so much more bearable with all you ladies good advice and tips. Thanks again (((((Hugs))))) to you all and here I go. Hot Flush City!!! good job i’m pale (almost blue).

Love luck and big huge thanks to all. Shonagh xxxx

system · 28 January 2008 22:19

Hi Shonagh

Such good news my darling. I am so pleased for you. Think you have made the right decision. Don’t worry about taking time off work. You need torest and get over the shcok all this can be. And do take care of that cyst. As you say, you may just owe it a lot! Rads are NO problem honestly. Nor the menopause. You darling - thanks for some good news.

Sleep tight

Dilys
xxxxx

system · 28 January 2008 22:24

WooooooHoooooo,

Fantastic news Shonagh. Cannot begin to tell you how happy I am for you my love.
I hope you are planning that holiday as I type this post. Do as Dilys says, she always knows best.

Love and Hugs,
Dyzee.XXXXXX

system · 29 January 2008 09:24

Shonagh that’s brill, and good call!! that is the right decision, honey. I spose the reason they are pro chemo for me was that mine is Grade 3. So, off you go to the next section of treatment, phew!! and lots of time to rest (yes I know, pot-kettle, lol) and your holiday at the end of it all. Oh it has been so stressful for you and I am delighted that you have got the treatment plan to hang your hat on now WAY HEY!

Love, Louise

system · 29 January 2008 09:41

Hi Shonagh super super news,

You,ve thought long and hard together with OH and have a great Onc by the sounds of it.Good decision ,Im with you all the way.
Now you have a plan, you can organise your life more clearly, ie breaks/holiday. Good to hear you;ve been signed off for some rest time too.

LOL Julie xxxx

system · 29 January 2008 20:12

Congratulations Shonagh - you’ve made a very brave decision - chemo was never mentioned for me despite the ‘high grade’ diagnosis so I’m grateful that discussion was never raised. The zoladex injections in your stomach sound a little worrying - are you sure they’re not treating you for rabies?

Think I’m going to take the question of Tamoxifen further - either it is right for me to be taking it or its not - if they don’t test for hormone receptors how can anyone know that I don’t need it?

Benjamin has the first of his inoculations tomorrow - hope he doesn’t have a reaction - what a waste of a perfect life that would be!

Hope you are all well
Love Maddy xxxxx

system · 29 January 2008 21:33

Hi there ladies,

Well I started the tamoxifen today and was only saved from sitting waiting for some sort of reaction by my sister coming round with sushi and fresh pineapple. She is a midwife and is doing a night shift tonight so I really appreciated her taking the time out and its easy talking to her about whatsgoing on because she understands the medical stuff more than I do so we get the BC stuff out of the way early on and get onto normal conversation must quicker. My other sister is an occupational therapist so its the same with her too. Its so nice to talk about other things.

Maddy: Hey Rabies now theres a thought…I am feeling a bit Ruff!!! LOL
I cant believe you still havent got yor hormone receptor status. They gave me mine from the core biopsy but the oncologist did remark on just how oestrogen receptive mine was & the my surgeon said its 100% er+ and 80% pr+ (not sure how they work it out) so perhaps you are borderline and they are just covering all bases.
I’m sure Benjamin will be fine. Its wierd I bet we wouldnt even think like that before this happened but I suppose we have to stop thinking we can ever be that person again. As my OH say never look back. Dundee to Dublin blimey thats a move for your daughter, my Mum was born in Dundee and my Dad is from over bridge, Tayport. I love the city especially the ferry beach and the castle but Dublin is fabulous too she must be so excited.

Louise: How strange is that…its obviously meant to be and she may be a bit late to the party but at least she has arrived. Better late than never and great news that she can drive your Mum over too as you will be taking i easy from now on wont you!!! Never mind pot and kettle. Take it easy girl.

Wendy: I hope your are Ok and not feeling too bad. Thinking of you.

Dylis, Dyzee, Julie, Louise, Maddy. Thanks all for your congratulations. You dont know how much it means to me that you are all out there rooting for me. Getting a bit emotional now so going to go before I start blubbing, managed to keep a lid on it since my mini melt down just after surgery and Phil is on a late shift so due home soon. If he finds mevred eyed he’ll only worry (bless).
Love, luck and ((((hugs)))) to all as always. Shonagh xxx

system · 29 January 2008 22:16

Hi Shonagh

Hope Phil is home by now and you are ok. You deserve to be. Take care my love

Dilys
xxxx

system · 30 January 2008 12:22

Hi Everyone,

Just a quickie. I have come down with a rotten cold aching from head to foot and generally feeling crappy so been in bed.
Called my chemo nurse and they have put my chemo back to next week.

Back to bed now!

Dyzee. XXX

system · 30 January 2008 14:58

Dyzee - Pleased to hear from you hon, take care and keep warm you’ll soon feel ok, glad there’re leaving it a week so you’ll be strong again, speak to you soon.

lots of love GillMc xx

system · 30 January 2008 15:48

Hello everyone

Well I have sort of “finished” work ie can work from home for a few days and then see whether chemo comes to pass on Tuesday. If not then it is back to work as I can’t afford to waste my sick leave, I want to be have plenty for chemo. The good news is that the human watering can that is my right boob is leaking much less. I was at the GP yesterday for dressings and will be back on Friday, had my Mirena removed eek! OH was too embarrassed to buy any condoms so they are in with my online Asda order this week (and he can answer the door!)

Off to see The Magic Flute tonight, I know quite a few of the tunes so I hope I don’t embarrass my friend by singing along.

A couple of clients are joining a pole dancing class here and asked me to come. No-one knows about the BC so I just had to laugh along. It is difficult listening to peoples’ (trivial?) problems at work when I am so anxious about all my treatments and outcomes.

Maddy hope Benjamin is Ok, I know it is horrible to think of an injection in that perfect little arm, be assured that it is to protect him against nasties. I totally agree they need to sort out whether to take Tamox or not, I have not heard of such long delays, what a pain.

Shonagh lol re sitting waiting for Tamox to take effect! Hope you have started to recover from the emotional strain of waiting for the treatment plan.

Dyzee aww sorry you have a rotten cold, you must, must take it steady and get strong for the next “dose”.((HUG))

Julie How you feeling?

Dilys Hope you have some sun down in London like we have in Yorkshire and you have been able to get out and about. When is your next Herceptin?

Love to all

Louise

system · 30 January 2008 16:05

Hi Louise

Lovely to hear from you, and yes it is sunny and gorgeous here too. Love the thought of you cowering away from the Asda delivery man! Bet he has no idea what is in there (as if he cared!!!) ne thing I have learned from all this is that noone actually notices anything! And if they do they aren’t going to say anything about it. There was me waiting for everyone to comment on my gorgeous new eyelashes but of course they hadn’t even noticed they had gone in the first place! Next herceptin tomorrow before I shoot off to meet some ladies from another thread. So exciting.

Glad you are finally stopping leaking. That must be such a nuisance, you poor thing. Enjoy the Magic Flute and sing along if you feel the urge!

Dyzee my dear - are you tucked up in the warm? I hope so.

Shonagh - how goes it with the tamoxifen? If it is any comfort I have been fine on Arimidex. It is a bit like being back on the pill. Same sort of size and packet and everything. And hopefully it will work.

Julie, Maddy and all - how are you?

Much love

Dilys
xxxx

system · 31 January 2008 09:13

Hi Ladies