early days

Thanks Avalanche. There is no chance of another day. I think its only tuesdays that the ops are done. Im raging because they knew last wednsday that I wasnt getting it done. Id love to know who was so important that I was bumped off the list.

Today has really dragged in, I have a headache and feel as if im going to throw up. Its going to be a long long...very long week.

On a good note, I will be able to go to the young womens support meeting in arc house on monday

Terrible communication, they should have told you earlier if they planned cancelling you. Everyone with cancer is a priority so don't know how could justify if they gave your slot to someone else. If they had to fit another patient in, it should have been an extra slot not someone elses.

Annoyed on your behalf! I expect you will be having some more vino this week

Hoping to make Mon work permitting

Oh audrey
I knew something was wrong today . . . I went up to the ward looking for you and they said (a) you where not there and (b) beds are at a premium at the moment and a lot of people are disappointed when they ring for a bed. I know this does not make it any easier for you to handle at the moment. I do know different surgeons have theatre time on different days but if the patient has no bed the operation is cancelled. Not fair I know but its our health system at the moment.

Hang in there girl consider this an extra week holiday. Its especially hard on you with the special needs children ( I am a special needs assistant) and the children do not like to be unsettled. My thoughts and prayers are with you.

Evelyn x x

Thanks for dropping up to see me evelyn...even if I wasnt there
It has been an awful week. I spent most of it in my pj's depressed.
The effect on the cancellation has been devestating. Until then i had been fairly cheerful, but with them not even having the decency to call me has left me with a feeling of being worthless. I know that its not the case, and the administration is to blame, but they knew from the wednesday before and nobody called. I had my 'bye bye boobie' party, had organised the kids, had gone out with my hubby for a lovely meal. I had really marked the occasion
Instead of being over the op now, Im still waiting and its sooooo frustrating. Delay after delay after delay.

I have to ring on monday at 12 to see if they want me in on monday afternoon or tuesday morning.

Just a quick question while im here. Were you all in mixed wards when you were in hospital? I was in a mixed ward...2 women and 4 men. I found it a bit distressing to be honest. Im worried that its going to be the same this time. I suppose with the fact that its a mastectomy Im even more worried, its such an emotional thing to be dealing with as it is.

Hi Hugs,

Sorry can't answer your question as was not treated at the Mater. Hope you are feeling a bit better now the wait is nearly over AGAIN! You know you are not worthless. You are a much loved mother, wife, sister, friend and important person. Just an overstretched system.

Hope you make it to the Arc tomorrow for some moral support from everyone

Thanks for that avalanche. Im not going to make it in the morning as i have to ring the mater at 12 to see if they have a bed for me. I might be taken in the afternoon, so I dont want to take the chance on having 2 trips into eccles street...lol.
If Im going in tomorrow ill probably have to take the kids off school early, if not it will be tuesday morning.
Im a bit aprehensive about the op, but l know its gotta be done, and if truth be told I wish they would take the other on off aswell. The way my luck is is that there is dcis in the other breast waiting to bite me in the ass as soon as im over this treament...lol

Im having my 'last glass of wine' for now....again... . So if i dont make sense I apologise

Please give my apologies for tomorrow if you can make it, Ill definately be there in June!!!

Good luck Hugs,

I didn't make it to the Arc unfortunately as was called into work, someone off sick.

I know the surgery is daunting but you will be ok. Get it over with and that one step closer to beating it. The other breast will be carefully monitored so hopefully will never cause as much stress.

I hope your recovery will be smooth.

Best Wishes
A x

Hi Audrey
Really hope you get a bed this week, we all know the waiting is very depressing. My operation was in the Mater and it was an all female ward. Two of us having the same op so was great we could support each other. Even with the drainage tubes we both made it to the front door for fresh air the night of our operations.
Keep strong, we are all on your side.
Love Evelyn x x

Hi Audrey,
Hoping it all goes well for you today.
Take care,
Celine

Well, its 2 am. They didnt take me in. I have to go in the morning, and sit in admissions to 'wait for a bed'. I was told to bring a book as Ill be there a while.
Its not doing my mental state any good at all
Im so fed up hanging around, waiting for a call that never comes, its just so frustrating. Its not as if im going in to have my tonsils out...although i wish it was

Fingers crossed it will be done tomorrow.

Thanks for your well wishes, it really means a lot xx

Audrey I am so sorry you are havimg to go through all this waiting it is just so unfair on you. Go tomorrow and dont leave till you get a bed it's some health service we have God help us. I will be thinking and praying for you
Evelyn x x x

My heart goes out to you A it is so so unfair. Shame on the system its a disgrace to treat someone this way. Maybe composing a letter to the Head of hospital & highlight the affect these delays have on a person already deflated might help you get frustrations out..i am so mad. ....heads. Ask for a pre-med if you are anxious when you do go in (it relaxes you, takes edge off & u be chilled - give it prior to surgery/couple of hrs b4). I am keeping fingers crossed that in many respects the worst part is over for you. You have every right to be crying a river but I know that good strong spirit of yours will bounce back. Feel free to rant on this we are all thinking of you.

Hi Hugs

I hope all is going smoothly for you now. Really sorry to hear the horrible time you've been having. It can only get better. Thinking of you x.

Phew...I made it
I went in on tuesday, and had to wait till about 10 for a bed. But I was brought up to a lovely ward (st elizabeths). There were 5 other women there (for different reasons), but I was completly at ease. I had been so afraid that I was going to be on a mixed ward.

My sister came into the hospital with me, and hung around taking pics of me in the 'sexy' hat and gown...we really had a laugh. The porter got in on some of the pics aswell..I think he thought we were mad

I was preped and brought down at 11.30, and had the op just after 12. I had a horrible pain blocker (or something), put in my back before the op. It was agony! They said it was going to be 'a bit uncomfortable'...eh I dont think so, so I would never get it again!!!!

But I came around feeling ok, the morphine was great. I had a look at the 'empty space' or the 'cancer free area'. I didnt feel to bad at all. I was afraid I was going to freak out, but so far so good.

Im home now (friday), and am just chilling. Bossing the kids around as per usual, getting cups of tea etc.

So Im back on monday week for the results (if they didnt get it all this time I give up ), then on to meet the oncologist sometime after that.

I feel so much relief its unreal. I have my 'fluffy foob' to keep me going until I get fitted for the heavier one in 6 weeks.

Now im off to take some pain killers (before the pain comes ), and Ill talk to you all soon. Thanks for the words of encouragement xx

Hi Hugs

Great to hear you are home and over the operation. Sounds like you got through it with the help of your great sense of humour too!! It's a nice feeling knowing 'the alien' has been removed..good idea to take the painkillers on time and don't let the pain get a chance to take hold...we put up with enough eh??
Mind yourself x

Hi Hugs,

So pleased you have got the op out of the way now. You are home very quickly. Make sure to take it easy and enjoy being waited on while it lasts

Will keep everything crossed for clear margins.

Try and have a relaxing weekend.

A x

Hi Audrey
delighted it's all over you and you are still smilling by the sound of it. It's really not that bad to look at where the boob was, in fact I think you were like me just wanted "the allien " gone. Honestly the feeling you are on the road to recovery is such a relief after all the waiting.
You have a great positive attitute and this will stand to you through the chemo.
Evelyn x x x

Hi all, hope everyone is enjoying this glorious weather.
Im still feeling pretty ok. I caught a cold, which knocked me out completly for 2 days, but im getting back to normal.

Im getting used to wearing my fluffy foob, although I need to change it because its too big, and makes my real boob look too small...lol
I had to do my own adjustmnts to the bra on the normal side to even it out...oh the joys
A friend called today, and i was sunning myself outside one sided, and i didnt run in to even myself up because i was too lazy, I must be getting used to my new look (although my tshirt is loose so not too noticable)

Im back in on monday for the results...please god they got clear margins...I have no more to give them

Hugs

Best of the best to you on Monday, will storm heaven for you. You have an incredible good humoured attitiude and it will stand to you.

Take care

Hi Hugs,

Thinking of you for Monday. Hope those pesky margins are all clear now

All the best
A x

Well its good news!!!! They got clear margins at last. I was beginning to think they were going to keep chipping away at me till there was none left

I am so relieved. The great news is that the margins were clear enough that I dont need radiotherapy.

Im meeting with the oncologist in 2 weeks. I think he is Dr McCafferty.
So deep breath in and on to the next stap

Hope youre all doing ok, and thanks a mill for the good wishes

Oh and i did ask the doc if he would consider a mastectomy for the other side as I am so afraid of it appearing there. He nearly fell off his chair then said no...too drastic...and no need, just to keep an eye on it. I could feel the relief in my dh

hugs

so happy you got good news for a change, I imagine you have had a glass of vino or two, you deserve them. Fantastic news and the sun is still shining, enjoy

Take care

Thanks petal, i really do feel good. Its like a load has been lifted.
I know the chemo isnt going to be a piece of cake, but the sooner it gets started the sooner it is finished

Then it will be onto hormone therapyu etc...but i will worry about that when it gets to that stage.

Hi Hugs,

That is a relief. One less thing to worry about. Try and relax for a while now and build your strength back up.

All the best
A x

Well done Hugs - great to hear that you are over your operation. Don't worry about the chemo - you will be fine with it - treat it as time out with a few icky things to do...... I also wanted my surgeon to take my other breast away and he said no too !!
I am two years post surgery soon and will be going for my recon. at the end of June so I will give all the sca on that while its fresh in my mind!!
I am having the op. where they take muscle from the back.
I am not thinking about the op. ...... just picturing myself in bickini's and nice tops again........... I am trying mind over matter..... convincing myself that it will be a ''breeze'' and I will just sail through the op.
Of course the fact that I will be off work for lots of weeks appeals too !!
I love my bed in the mornings !!
Sorry I can't add any of the smiles ... they just don't transfer across for me.....
Hello to everyone else ''in our club'' too - Evelyn, gosh that year flew - you will have to change the thread ''I am so afraid'' - you are now a brave and confident crusader, having tackled the seas of hospital visits and procedures !!
I am lighting up the world too with the ol tamoxofin - I have changed to taking it at night as I read on a U.S. website that the flashes improve. I used to take it in the morning ........
Oh... better head to bed now - my poor eyes are closing.

take care and keep the positive flags flying high in the wind

luv
r

-

Hi Hugs,

I haven't been on much lately but I just popped in and wanted to send congratulations to you on getting clear margins. Finally!!!

Great that you don't need radiotherapy now too.
Take care,

Flo.

Just a quick update. Chemo still hasnt started as Im taking part in the 'taylor x' clinical trial. The tumour has been sent off to america for a gene test to see 'if i definately need chemo' 'If I might-but they arent sure if i do need chemo', or is @i definately need chemo'

If i fall into the 'not sure' group, they send my name to a computer in belfast and it will be like a flip of a coin if i get it or not.
Im not sure which im more afraid of...having it or not having it.
Its sort of messing my head up

Other than that, im not too bad. I have had a lot of fluid, and im peed off getting it drained. The first week they took out 750 mls!!! I was in shock, then 300, then 400. Im going to just let it burst next time If it keeps growing, Im not going to need recon!!!!

Just one last thing. I have been feeling extremly tired, really unbelievably tired. I have to actually go for a nap during the day, and have hardly any energy to even do light housework. Any tips on how i can sort this out? Im suprised, I know ive had the 3 operations since march, but I really didnt think I would be this tired! God help me if i do have to have chemo, ill be in bits

Hi Hugs
Great news I am thrilled for you. They say a wee walk every day helps with the tiredness and I have been trying it and yes it's working. Now I still feel drained but it has lessened. The cancer society has a good booklet available on fatigue give them a buzz.
Evelyn x

Thanks for that Evelyn, Ill buzz them tomorrow.
Youre probably right about the walking. Its a vicious circle. Too tired to go walking....no energy because i havent been walking
Ohhhh im so lazy

Hi Hugs
Glad to hear you are doing well, I know what you mean
about the tiredness I kept talking about going for a walk today
but never got around to it again!!!!!!
Had oncologist app today at last, I had to keep ringing up about
it seemingly my referral letter got lost, you really have to keep
on top of things at a time when you are not feeling the best.

I hope all went ok with your results today
and maybe you wont need any chemo but I know what you mean about not being sure if you want chemo or not

Keep up the good spirits

Deema

Hi Hugs,

Just a quick note on the tiredness. You have had THREE pretty big operations in the past couple of months. Apart from the effects of the anaesthetic and drugs, all your tissues are healing after surgery - nerves and vessels are re-knitting, stitches are dissolving, internal bruising subsiding. This will drain energy from the rest of your body. So its important to listen to your body and allow yourself to rest and heal.

I am also a big fan of walking, particularly if you can get to a beach. I really find a stroll on a beach to be really revitalising and it helps clear away the stress and tension we carry with us (whether we know we are carrying it or not).

Maybe also have a look at adding in some superfoods that will improve healing? And DON'T OVERDO THE HOUSEWORK!!!

Hugs,
Flo.

Gosh, even my 'quick notes' take half a page.....

hello all,
Just spent a little time catching up on the thread..... hugs, you must be so relieved to be rid of the ''bold breast'' - at my time I couldnt wait to get it off too - it nearly killed me !!

Well, I had my lattiss dorsi recon done last week (the back muscle one) - I came home just yesterday so will be opening a thread and telling all very soon !!!
I feel great though and eventhough I was told it would be a much heavier op than a mastectomy and not to expect to be as livley after it...... I actually found it easier !!! Maybe its just that I was ''in a better, more positive place'' than when I had the mastectomy......
My boob still looks battered and stitched but its there for sure !!!
I was always between A and B cupsize so i'd say thats what i will have - my surgeon said he can ''bump me up'' later if needs be !!!!
...... going to see my ''plastic'' will be as common as going to the hairdressers lol !!!!
Even at this stage if I was asked if I would go recon. again.... I definately would............ the experience was quite positive and is continuing to be - booby boogie parties comin up !!!!

have a lovley weekend all and hugs - just caught up on your thread - glad to hear that you are rid of the bold boob - i have heard of the taylor x trial.... best of luck with it - remember ''attitude is everything'' and your humour and approach will see you through no matter what - i think us brave ladies were picked for this elite club just to show the world that there is alway positivity even in the face of adversity !!

angel glitter to all !!
r

Well, one down, 7 to go!

So far so good, im feeing ok. I had to have a blood transfusion as my blood count was extremly low (they almost didnt go ahead with the chemo). They said that is why ive been so tired lately. Hopefully the transfusion will give me an extra boost.

How are you doing roxanne? I hope youre healing well.

Deema, when do you start chemo yourself?

I hope the rest of you lovely ladies are keeping ok.

Just to remind you there is a meeting for young women in arc house in eccles street dublin, on monday the 12th at 10.30. Its for anyone under the age of 49 ish... Its a great chance to meet up

Hi Hugs
Glad they got to the bottom of your tiredness hope the blood gives you a boost. Will be thinking of you on the chemo road but with your positive attitude you will be fine
Evelyn x x

Hi Hugs,
Delighted to hear you are doing ok I think the waiting and wondering how we will feel is so hard, hopefully it wont be too
bad, at least the sooner we start the sooner it is over!!!!!!!!!!!
I am starting next tuesday but in on Monday to get in Portocath
by General Anaesthetic and he also wants to expand my tissue
expander at the same time so I may as well get it all done
when I am asleep, but dont know how I will feel after anaesthetic and
then starting chemo straight away, they are going to use veins in my hand
for 1st chemo and then the portocath

Good Luck and look after yourself

Deema