Newbie here and to cancer

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jane dio
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Re: Newbie here and to cancer

Postby jane dio » Wed Mar 22, 2017 2:36 am

I have had a glance at the site but I didn't want to get to ahead of myself. Until i have the lump removed and test results are back, I really don't know what the plan is. I know I have IDC NOS but nothing more. I don't even know how big it is (feels like the size of a walnut but I guess that could be my imagination too) I know if I start reading I am going to get swamped again and start drowning. Over the last couple of days I've been able to tread water a little. Do you know, I'm actually a piece with the surgery. The sooner the lump is gone the better and if it means part of my breast well, i'd rather that than have that nasty little critter in me. Maybe the specialist told me he would remove a portion.. I don't know, honestly I can't remember it feels like a life time ago and I guess I was in denial and that's why I went by myself. Everyone around me was saying, "you have nothing to worry about, breast lumps almost always turn out to be cysts. I've had pain in my left breast for maybe 4 months and of course everyone (the experts they are) oh you have pain... then it's definitely not cancer because cancer is not painful. The pain ranges from stabbing to throbbing, burning, itching. Water from the shower at times has been like razor blades. I put it down to the big M.. I've had sketchy periods for the past 6 months, hit and miss even on the pill. Hot flushes, night sweats and of course the pains in my breast. At the moment my breast looks no different to what it did a year ago.. 6 months ago. I have no physical signs that I have cancer.. no dimpling, no discharge nothing BUT I can see it if that makes sense. I can point my finger and touch it without having to feel around.
You haven't distressed me, you've been a great help.. everyone here has. This is the first post I have written where I haven't cried my eyes out - don't think l have any tears left :D . I booked in get my 2nd tattoo. (first one is a heart with an infinity symbol - meaning to me is my infinite love for my family and of course Karma). My 2nd will be a pink ribbon with a heart sort of attached to the left side, with my kids names in the ribbon. I've since canceled the booking til I get thru the other side of this as apparently if can affect chemo and radiation. I booked in to get my hair done as after surgery l'm not going to be able to do much with it (can't do much with it now. I've not had it cut in 12 months and this is the first time I have ever grown my fringe out. I had really really short hair the last time it was cut and now most of it is about shoulder length but I were it all in a bun most of the time), I was also going to colour it but have also been told that's a no no at the moment. I really don't want to start taking meds unless I absolutely have to. I was on panadine forte for back and hip pain for 5 years. Started just 2 tablets a day but eventually I was on 8 tabs a day. I would count the days the script should last and I would book in to get another script. The last time I went in to get the script I was refused.. I actually got my phone out and showed the doctor the date and he still said I was 2 weeks early. That was my ah ha moment and I told him I wanted to get off them. It was supposed to take me 6 months but I did it in 10 days. I don't like the person I was and i'm afraid if I start any sort of meds, i'll be right back in that place. Thankyou for listening. It really does help.
17/3/2017 IDC NOS -, E-Cadherin + ER + PR +. Lumpectomy & Sentinel Node removal 30/3/17

JudyB
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Re: Newbie here and to cancer

Postby JudyB » Tue Mar 21, 2017 10:26 pm

Jane, anti anxiety tablets are not like sleeping tablets, they don't knock you out they just relax you so that it's easier to fall asleep. I don't believe that they would stop you hearing your son any more than normal sleep. It's worth talking to your doctor about it and explain about your son etc. They helped me immensely and I am not one to take tablets at the drop of a hat.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Newbie here and to cancer

Postby ruth1 » Tue Mar 21, 2017 4:06 pm

Jane - have you been on the BCNA website yet? Its Breast Cancer Network Australia - bcna.org.au

This site now has a new interactive tool that guides through choices for reconstruction - its called Breconda - invented by breast surgeons at Macquarie Uni here in Sydney which has a teaching hospital as well. So, type in bcna.org.au/resource/breconda. You will have to register before you can use it.

This might be a bit early to suggest this to you but then again it might help. If its too early to cope with then just leave it until you feel ready. I don't want to be the cause of further distress.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Newbie here and to cancer

Postby Mighty Oak » Tue Mar 21, 2017 11:42 am

Hi Jane,
Why do things always seem so bad in the middle of the night? I guess it's because there are no distractions from our internal monologue. No tv, no kids squabbling, no dog wanting to be fed etc., etc., etc., just us alone with our fears. I found that listening to sleep apps or hypnosis apps on my iPhone really helpful; gentle music and soothing words were key to me getting a good nights sleep in those early weeks after diagnosis. I still listen to them if I'm having a restless night.
Hugs,
Mo xxx


jane dio
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Re: Newbie here and to cancer

Postby jane dio » Tue Mar 21, 2017 6:10 am

Judy, I know exactly what you mean by not looking at yourself. I can't. I can't touch it. I won't let my hubby touch me and that makes me feel awful. I hold myself together whilst the kids are around only just. The whole bra this yesterday has knocked me flat. I've had a headache like a bad head I (suffer migraines and the headache is on part with that but different) for the past 7 days. A friends told me to go to Dr and get sleepers, which I have never had in my life.. My kids are asthmatics and quite often have attacks in the night. Anyways, I'll get there, I just need some time and need 5 minutes to close my eye and not be consumed by the words breast cancer and tumour and everything else that goes with it
17/3/2017 IDC NOS -, E-Cadherin + ER + PR +. Lumpectomy & Sentinel Node removal 30/3/17

JudyB
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Re: Newbie here and to cancer

Postby JudyB » Mon Mar 20, 2017 10:18 pm

Hi Jane, I didn't feel that my lump was dirty but I felt very betrayed by my body. From the moment I was diagnosed to the day of my mastectomy I didn't touch the breast with the lump, I didn't even wash it (it was only a week) just let the water run over it. I kept my eyes averted when I stood in front of the bathroom mirror getting in and out of the shower. I only looked and touched it just before getting ready for the surgery. Gosh, this was nearly 8 and a half years ago and seeing what you are going through and hearing how you feel is making me teary, it's strange how I can still be taken by surprise like this.

Be nice to yourself Jane, it's so difficult at the beginning when all you know is that you have breast cancer and need surgery. If you are really finding it difficult to sleep maybe you should speak to your GP and get a prescription for some anti anxiety tablets. I certainly needed them, they just helped me get to sleep and once asleep I was fine. I am not a pill pusher but they really helped me.

Please come here and vent any time you need to, we are all here to support you. As I often say, try not to worry about what might never happen, just take one step at a time.

:hugs:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Newbie here and to cancer

Postby ruth1 » Mon Mar 20, 2017 5:01 pm

Jane - you have options that can be done after initial surgery. I was booked for a lumpectomy to begin with but I decided to do double mastectomy because of family history, my age and I opted for immediate reconstruction with my own nipples and implants at the same time. By doing this I avoided rads. I didn't know I'd have chemo so that was a later surprise. My mother died from bc so I knew I should do the max to survive - I'm a single mum and daughter was 14 at the time. The main thing right now is to get the damn thing out. All of this is done in a rush so its very hard to come to terms with it all and also make sensible decisions which are life changing. I think it might be a good move to see a trusted Dr or see breast surgeon again asap if you need to. It just might make things a bit clearer amongst this horrible fog.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

jane dio
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Re: Newbie here and to cancer

Postby jane dio » Mon Mar 20, 2017 4:07 pm

Hi Ruth, I did speak to my breast care nurse and unfortunately they don't have bigger sizes. I have one shop to go into tomorrow and at least get fitted for the right sizing and she has promised me that if she doesn't have anything then she will do a special order and have then here in 3 days. So, my next step is to try and hold my emotions so I can get that done. If I could remember the name of the store that was so rude to me i'd make a complaint but you know.. I don't have the energy to waste. I am exhausted, I can't sleep. I cry myself to sleep and I wake up crying. I know that is self pity and I know I am extremely lucky I've caught it early but it's hard. I didn't know how invasive a lumpectomy was.. it's too much is a short time to deal with> they were talking bra's with pockets or without and I said what do you mean. The nice woman said so you insert "a chicken fillet" to make the bra fit post op.. I said why.. she said in her experience most women end up with a large dent.... too overwhelming..
17/3/2017 IDC NOS -, E-Cadherin + ER + PR +. Lumpectomy & Sentinel Node removal 30/3/17

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Re: Newbie here and to cancer

Postby ruth1 » Mon Mar 20, 2017 3:52 pm

omg the stupidity of people just makes me soooo angry - how incredibly stupid. Jane - you will probably be given a surgical bra through the hospital post surgery - I did but it was for mx so check and see if all procedures get a bra post op. I think as I remember I begged and got 2 so I could wash 1 wear other. Call up the hospital cancer centre and speak to the breast care nurses or the social worker and they will advise you. Failing that call the cancer council and speak to them and ask where you can pre order so you get your size.

Well done at the school - the emotional response is totally normal. If this overwhelms you don't just try and battle through it - go and see the GP and get something to take the edge off things. This is a very difficult time. I remember going to a parent teacher evening - my daughter's schoolwork was down to bottom of class and after hearing negative comments from several teachers I burst into sobbing tears and couldn't stop - very embarrassing at the time but it just got to me. Girls headmistress grabbed me and dealt with it. I can tell you that daughter got through HSC and is now at Uni so despite huge issues we got through it and you will too. It is a big few months ahead though.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

jane dio
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Re: Newbie here and to cancer

Postby jane dio » Mon Mar 20, 2017 3:11 pm

So I went into school this morning. I sat down last night and typed a letter because I can't say the words out loud without breaking down. I am so glad I did because I did get past I have... anyway so that's another thing crossed off. Next.. post op bra.... I live in regional Victoria and my choice is limited. I'm a bigger girl so that doesn't help. I have call 4 lingerie shops in the surrounding areas and oh my gosh. First off, if they don't have in stock then they don't order til the end of month... too late.. One woman just said Really.. you need it in a week.. why did you not call last week. I cried couldn't talk.. got myself somewhat together and told her I have only just being diagnosed and the woman actually said maybe if you weren't so big you would have found it earlier.. OMG.. I cannot believe this.. Talk about kicking me when I am down. :grr: :bawl: :bawl: :bawl: :mad: :sniff: :crybaby: :bawl: :bawl: :bawl:
17/3/2017 IDC NOS -, E-Cadherin + ER + PR +. Lumpectomy & Sentinel Node removal 30/3/17

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Re: Newbie here and to cancer

Postby jezza » Sun Mar 19, 2017 3:40 pm

Hi Jane

I always say that having breast cancer is a huge learning curve. It's so confusing at first and impossible to take it all in before you have had all your tests and talked to your medical team about the results. It's natural to fall to pieces in private (or even public).

I had 3 kids when I was diagnosed...the youngest 16 months. He's now 26 years old. I still remember how terrified I was at first...no internet or forums around back then either!

Sounds like you should keep away from MIL for a while! Some people can't help but say the wrong thing.

Hugs...and hang in there. I think you already know you can say anything here.

jezza xx
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Newbie here and to cancer

Postby ruth1 » Sun Mar 19, 2017 2:34 pm

Jane I can only talk of my experience which I know might not be yours so read this that way. You have done a great job of coping so far and the way you've told the kids. Please be ready for the feelings of guilt for causing all this disruption - that's how I felt as I watched my daughter struggle with this - the guilt thing is weird cos I knew it wasn't my fault and not something I can control but it happened. Informing the relevant people at school and organizing extra support such as Counsellor is a big step that needs to be done. My daughter seemed fine at home as Ive said but it was a different story away. She decided to protect me by trying not to show any changes at home then fell apart at school. She was not sleeping and having nightmares and not handing in work etc. I had informed everyone so it was dealt with quickly. Be aware of the balance you need to find between making it sound like nothing but if you need extra treatment as I did then that initial playing down can be viewed as not fessing up the truth down the track - this happened here - me hiding away and making light of it all so when I hit a few speed bumps my daughter became suspicious of things and thinking I wasn't telling her everything. I took her to meet the Onc one day and had him tell her that things were really good after the treatment woes were over. This made a difference when she heard it from him. Don't kick yourself - just vent away and keep it all together the best you can. If the family sees you crumble it wont be a disaster - they will cope. Their behavior towards you may change a bit so keep that in mind and don't take it personally. My daughter went through a time of pushing me away and I felt that but it was a coping thing for her. Hope some of this helps.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

jane dio
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Re: Newbie here and to cancer

Postby jane dio » Sun Mar 19, 2017 12:24 pm

I'll look at this in a few days and kick myself up the butt. I can vent here and no one thinks any the less of me but. Real time Family and friends will. Once I get my emotions in check and I start to really understand what's happening I'll be fine.. My inner me with flourish , I just need a little time to get there and it's hard because if hubby or the kids see me crumble, they will crumble. Tomorrow, when school is back I will fall into a heap and move thru
17/3/2017 IDC NOS -, E-Cadherin + ER + PR +. Lumpectomy & Sentinel Node removal 30/3/17

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Re: Newbie here and to cancer

Postby Janette » Sun Mar 19, 2017 10:25 am

Jane wow the bond between mother and daughter at it's best. Kids are very resilient and bounce back.

You're feeling vulnerable at the moment and she will feel that. Things will normalise pretty quickly and you will look back on all this. :hugs:
Janette


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Re: Newbie here and to cancer

Postby The new girl » Sun Mar 19, 2017 9:31 am

:hugs: . :hugs: :hugs:
Sending hugs Jane


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