mastectomy stuff

That book sounds like a laugh. I get my daughter to make sure im not lopsided before i go out (shes 14 and finds it halarious )

Everyone is different when it comes to the ops. It depends on if you need lymph nodes clearance (ive heard thats worse), and i suppose people heal differently.

It is good if your consultant says you should be ok.

The thing is that its your daughters graduation in Edinburgh...and im sure youre not going to miss it regardless of what he says

Just take it easy, rest as often as you can, let people help you if they offer! Bring lots of pain meds. I found mine great but to be honest I didnt need to take them all of the time, but took them 'just in case'.

Good luck on tuesday, let us know how you get on.
I had mine 6 weeks ago, so its all fresh in my mind...lol

Hi JaneyMac,

I hope you do get to go. Just make sure you take things really easy.

I would ask your consultant to give you a letter summarising your condition and surgery (incl. any drug allergies!!) to bring with you 'just in case'. That way, if you had a build up of fluid or, god forbid, an infection started, you should save some time getting treated at an Edinburgh hospital. I would also suss out a decent hospital near where you will be staying. The Western General Hospital in Edinburgh has a good breast cancer service, apparently.

Good luck!

Flo.

Thanks Flo & Hugs
That's good advice re letter. I was completely up for it up to a day or so ago but as it gets nearer I'm starting to think is it too much. We've decided to wait til the wkend aftr op to see how I feel before I book and will book the rest of the family today. Leaving it all very late but this has thrown everybody's plans out
will keep in touch
Janeymac

Hi there and welcome on board (even though you dont want to be here). I had little pain following my operation however I did get the fluid build up. Flo's advice re hosp in Scotland and taking letter with you sounds like sound advice.
Evelyn

well the first step of this new journey is over. mastectomy & axillary node clearance completed on tues, home yesterday, feeling really good. Absolutely no pain even when anaesthetic wore off, now that's what I call amazing . Family support great, left boob looks lonely but it will just have to get used to it

Drain still in, took another poster's advice & carry it round in bag. Tip: put it in plastic bag for shower & hang it on hook, handle etc.
PHN coming tomorrow to remove it.

Decided not to go to Edinburgh, diary filling up wt all these new 'friends' who want to examine me & poke me & scan me. (Also don't want to risk infection etc when away). All this new stuff, some of it gives us such a laugh e.g. advice after bone scan "don't let small children sit on your lap for more than 30 minutes after scan"! And I thought Homer Simpson had a problem with radioactivity

Thanks for support,
Janeymac

Hi JaneyMac,

Congrats on being through your surgery. When you get back in, they should talk to you about prosthesis to make the left breast feel less lonely. Make sure to ask about it if they don't bring it up. You usually get a soft cushiony one at first until you heal up a bit and then can switch to a heavier, more realistic one. you can even get stick on ones now that are pretty good. Here's a website with some examples. Don't go paying for anything until you talk to your Breast Care Nurse about what you are entitled to for FREE.

http://www.almacare.ie/

Glad you have retained your sense of humour through all of this. Its strange what we find to laugh about sometimes during this journey, isn't it? It must seem very warped to others on occasion. I found that sometimes if I didn't laugh about it, I would cry so I chose the laughter. I believe its better for the soul and the health anyway! So keep laughing!!

Hugs,

Flo.

thanks flo for encouragement, able to wear soft bra & prosthesis from today as drain has been removed. Dont feel like invalid any more, now have both hands free (& starting to think bout Edinburgh again!) We'll see.
Will be fitted for permanent prosthesis in couple wks, at the moment don't see myself looking to go back to hosp voluntarily for recon. At 53 I just want a body that functions ok, I'm not too concerned how it looks under the clothes and i've no plans for streaking
Janeymac

Hi Janeymac
delighted surgery went well for you, i found it a relief to be rid of the breast. Knowing there was a wee alien in it I just wanted the whole thing gone. Like yourself i was not too bothered about appearance (I am 50 next month) however my consultant said i was too young not to think about reconstruction . . long time since I was called "too young" for anything I used the cushiion boob first then the permanant one and really want a boob back there now. My appointment with plastic surgeon is October. There is no time frame on the procedure so you have all the time in the world to think about it.
Evelyn x

well what a difference a week makes! Felt great after drain was removed, so went to Edinburgh for graduation on Tues pm, returned early Thurs. Had a wonderful time so pleased to be able to go.

Had some fluid removed Thurs and told to come back next Thurs
to remove more but it feels like its building up quite rapidly and think I will try and get it drained tomorrow.

Waiting now on: bone scan results, blood tests, & oncologist appointment. Definitely do not like all this hospital stuff and having to think about myself in this way but life goes on and is very very good

Thats great, Im glad you got to go away! Its nice to do something nice for yourself.

I find the waiting around the worst, so its great to 'get something done' and to be able to move on to the next step

Keep the chin up

Hi Janeymac,

Great that you were able to get to the Grad in Edinburgh and that u enjoyed it so much. I'd say the break from 'cancer, cancer, cancer' did u a power of good.

Hope the waiting for results passes quickly and you get good news.

Keep us posted.
Flo.

hi janeymac,
delighted to hear that you got to the graduation - it definately did you a power of good - the vibes from your post jump out positivity !!!

best of luck going forward - The bold breast and its bold inhabitant is gone now so the next stage is just mopping you up and making sure you
are spic and span inside.

keep the positive spring in your step and you will be a marvel.
You certainly are going well.
r

thanks everybody for encouragement. Moved house on Monday as we are getting work done on our own house & wanted me to be settled before treatment starts. Just in time, got letter re oncologist on Monday! Saw him yesterday, will be getting 8 treatments every 2 wks, but can't start yet as I'm still retaining fluid but hopefully that will be resolved over next wk or so. Don't ask me what the drugs are cos i haven't a notion but I know for sure they are not gonna be much fun

But - I'm grateful for what I have and what I've done even in the past few weeks

so its onwards & upwards

I hope youre settling into your new home, good idea to get it done before treatment starts. We will be moving shortly, and its going to be a bit of a nightmare as im in the middle of chemo.

I had my second treatment on monday, and seriously it isnt as bad as I expected at all. Im rushing out at the moment, but ill come back and give you the low down when I get back!

Hey what is it about us ladies moving house !!! I also moved house while undergoing chemo and found it a great distraction - the first week after chemo I used to sleep in during the morning and head off out in the afternoon shopping for furniture, paint etc. At night hubby would fill the car with moving stuff and i would drive it to the new house next day after my shopping trip and he would empty it
It kept my mind off what was going on with chemo - I really enjoyed the house moving time because i had plenty of time to do it - if i was working i would have cracked up i'd say
So look on the positive - you will have plenty of time to go shopping looking for bargains and ideas -even visit a few showhouses along the way - get plenty rest and then gather up your energy and shop shop shop !!!
Chemo is ''doable'' for sure so you will be fine - all spic and span for christmas - should i even mention the word

luv
r

Good luck with the house moving hugs and glad to hear the second treatment has gone well for you. I had my first yesterday and so far so good

RoxAnn, it's fine to mention Christmas!! I'm already focusing on it as I'll finish my chemo around the second week of December (all going to plan), so I keep saying to myself - I'll have this part over by Christmas!

Hi everybody, enforced silence due to move and no internet, hope to get sorted nxt wk. had 1st treatment yesterday, feeling great. on ac&t every 2 wks for 16 wks. getting injction today to help production of blood cells i think. have wig, prosthesis, and awash wt water, what more could a girl want

Hi Janeymac

You sound so positive well done, I am on the same regime
as you but had my third last week so I keep saying nearly
half way there, just make sure not to do too much this week
as you will need all your energies as time goes on
Good luck

Talk soon

Dee

Hi JaneyMac,

Glad you found the first one ok . Don't do too much too soon, many people find days 4-7 worse when the steroids are stopped. Rest, rest, rest!!!

Hugs,
Flo.

thanks everybody for continued encouragement. Finally have internet, am back out of cyber wilderness
I found after my 1st treatment last wk that i was so well informed bout side effects i was waiting for it to hit me. then I decided I would just get on wt my day & deal wt any side effects as they came. The only things I found were sat & sun i lost my usual healthy interest in food, altho i was hungry when it came to thinking bout food, my mouth rebelled & didnt want most stuff. I ate mostly fruit, soup, ice cream, craved jelly ! but by mon my appetite was back wt a vengeance & i am now eating all around me.

Another thing is that altho most of the time i feel really good, my energy levels dip mid afternoon esp if im wt ppl, im ok doing physical stuff but I have to crash for an hr or 2.

But for me the worst thing is the water drinking or the effects of it. From when i start in the morning, im literally peeing every 15/20 mins and I cannot go far from a toilet. Its not so bad in the afternoons or at night. I know its not a side effect as such but it is a total inconvenience (ha! spot the pun )

Getting my bloods done tomorrow, hoping that as I feel ok that they wil be ok. Is that the way it works? (she asked hopefully )

Hey JaneyMac,

Glad you are doing ok. Continue to take those naps in the afternoon, they will stand to you! I used to need them a lot too. And I really miss them now!!

I always felt like the cravings were my body telling me what it needed so the jelly one you're having could be that you need sugar for quick energy. You may also find you crave salt at different times, I always made sure I had salty crackers and ginger or digestive biscuits in the house. Chicken soup and plain chicken with mashed potato also hit the spot with me. Or a plain shepherds pie or cottage pie. Think comfort food!

If you are feeling good, then that is a sign that your bloods should be ok, but its not a guarantee. The tiredness could be down to a dip in your red blood cell count so a bit of red meat and green leafy veg should help that come back up (or Guinness!).

Hugs,
Flo.

2 down, 6 to go, jelly & ice cream craving kicking in again but its more I just can't face solid food. Hopefully it will only last a couple days again. Hair gone & sporting a good Sinead O'Connor likeness
Had worried where to get bandanas but my teenage daughter's collection of hats & my own scarves will do nicely when not wearing wig.
As another patient doing chemo same time as me says "it's not nice but it's doable".
Saw radiotherapist yesterday, talking bout starting rt week before Christmas. But will see how things develop thru chemo.
Hope everything is going well for all of you going thru this.

Yes it is doable, 4 down, 4 to go!! Taking longer to feel normal after each cycle and the weight is falling off, but I eat what I can when I can. Pleased we took on the house project, it is now demolished and construction starting soon. What a distraction! Beats cancer any day:)
Hope everybody else on this journey is doing ok and finding plenty of good things to distract:)

Hi JaneyM,

Congrats on reaching the halfway mark!!! Is that all your AC done now? Will you be switching to Taxol next?

If so, you will find the effects change. Taxol is usually easier on the tummy and you are on a higher dose of steroids for it so you may find a renewed interest in food. Myself and a chemo buddy became obsessed with it and the nurses used to laugh at the two of us discussing all our food fantasies! Be prepared though, Taxol has to be given slowly so you end up spending a longer time in the hospital for each infusion.

Taxol can give you numbness and tingling in your feet and hands which is annoying. It can also give lots of bone aches and pains which drove me mad. I used to hobble like an old cripple for a while every morning. I found gentle walks (esp on a beach) very therapeutic and the exercise helped ease the pains. They will also give you pain relief and Diazepam to help relax you and counteract this effect.

Keep up the good work and positive attitude.
Hugs,
Flo.

How time flies when u are having fun;)
I just want to encourage anybody going thru chemo - yes it is manageable, yes it does have an end! I hve 2 taxol cycles left, will be finished end of Nov. How far away that seemed when I started in Aug!
Have been up to St Lukes for marking, rt should start aftr Christmas.
I have been very fortunate, side effects on both ac and now taxol haven't been severe. Had reaction to 2nd taxol which is not uncommon, but as soon as it was stopped, I was ok. However, had to do it again the following week ... very very slowly ... but no reaction.
Bone pain not bad, nurses encourage us to continue taking motillium which seems to help. Soles of feet get v hot at night, sweat a lot the first couple nights after steroids.
But there are good things: Hair loss - chin hairs disappeared (that has to be good!), eye brows don't need plucking, underarms don't need shaving.... Lost about 10lbs, that's good. Get lots of help in house if I need it.
Tip for cold head at night - nylon swimming hat - light & warm.
Btw house totaly demolished & construction started at last on new building. Hope to be wel settled this time next year.
I know a lot of you have had very difficult months and I really admire you for battling thru wt humour and grace. Unfortunately, many others are starting off but please be encouragd by the knowledge that others have been down that road and can offer support from their own experiences.
Now... back to X Factor

Last chemo yesterday wahey never thought in Aug i would get to this.
Hope my eyebrows & eyelashes hold on, they’re slipping away rapidly.
Weight lost is creeping back on must be a combination of steroids & return of normal appetite
Glad this part of the journey is over, I’m grateful to God for bringing me this far

Congrads Janeymac and well done.............. I slip in and out and am always happy to see people who started out flabbergasted having made their way through the rocky road. I am post chemo since feb 2009 and
life is great again thank god. My hair came back darker and nicer than ever - you will have all that to look forward to !!!
I also got over my mastectomy very well and am back at the swimming pool and gym trying hard to get those extra two stones off which funnily enough crept on after chemo was finished - I did SO much celebrating with food (... and wine too !!!)

Get the radio out of the way and keep that onwards and upwards trend !!

well done
r

that last email said i got over my mastectomy well........... i meant to say reconstruction !!!!
I was watching the toy show and then decided to check my emails............ better go to bed ........... the ol brain is wondering when i am going to get up those stairs !!!!

choi
r

JaneyMac,

Congrats to you on completing your chemo! Well done girl, this is certainly a major achievement and I hope you are/will be celebrating. I know my sis felt she could not celebrate till more than two weeks after her last infusion cos thats when she really began to feel like the toxins were leaving her system.

Now enjoy the break before RT begins and I hope you have a wonderful Christmas. Don't worry about the RT, its the easiest part of the treatment for just about everyone. Just make sure you do NOT overdo things. Your body has been through a lot already and although the RT may seem minor in comparison, it can be very tiring.

Take care,
Flo.

Thanks Roxann & Flo, Its good to be finished chemo,. You prob won't believe this - we were set to go out wt our daughters for a meal last sat to celebrate, anyway we didn't get to go... my husband had a heart attack & he is now in hosp & I'm running round aftr him! You couldn make it up. Anyway he'll be fine, went to St James yesteday, got 2 stents put in, hopefully out tomorrow. Don't know whether to laugh or cry!!

Good God!

Janeymac, glad he is alright. But what a shock for you all! What age is he? I'm sure he will need to be watching himself very carefully after that episode.

Please don't do too much running around after him, you need to be 'watching yourself' too. You'll be surprised at how you feel ok one minute, do something not too strenuous and then feel completely exhausted later on. How are your family, will they be able and willing to call daily to help out? You must let them do stuff to help if they are willing because it will affect your recovery if you do not.

If they are not around to help, try calling your local health nurse and ask for advice, or possibly home help. I got some for after my double mastectomy and it really was a great help! It doesn;t have to be every day if you don't need it, but a few times a week is great for helping with laundry, changing beds, hoovering, etc, Jobs that you should prob not be doing at the moment! Even if you feel you can!!! And yes, I am wagging my finger at you as I type this!!

Hugs to you all,
Flo.

thanks Flo, no worries - I've got the live in house elves but to be honest I'm feeling really good, the energy slumps are not now so bad, I'm watching what I do & the better half is doing ok. Started Tamoxifen, R/t set to start Wed after Christmas & the thaw has set in - Life is good