I have to gripe

linn65 · 01-08-2013, 06:40 PM

My first outing since mastectomy surgery. Sitting in gym watching a basketball game and all I can think is my head is itching from this stupid wig. And wearing a bra with insert thing is just aggravating!!!#breastcancergirlproblems!

Laurel · 01-08-2013, 06:45 PM

Well listen, Linn, it may not get a whole lot better, but it doesn't get too much worse! LOL. Of course, the hot flashes are hell in a wig! Hang in there. Life goes on.

karen z · 01-08-2013, 07:02 PM

I am impressed you are in a gym!
Your comfort is the most important thing. Maybe ditch the wig for the gym and wear some cool scarves or a hat. I realize that this doesn't solve all the aggravations but is perhaps a start.

IrvineFriend · 01-08-2013, 07:09 PM

I'm sorry to read your frustration Linn because I had my bilateral a day after your mastectomy and it seems like this is never going to end. But I did get one of my drains removed today and hopefully I'll get the last one out next week. Apparently I've set a record on fluid output.

I also like that the next poster was honest in that it may not get better for quite awhile. I'm learning that. Although I've opted to go back to work very early post-surgery, it keeps my mind off my pain and the associated headaches that come with this journey.

But kudos to you for getting out and being part of life again. I start my chemo next week and hope I'm one of the lucky ones that doesn't really get too sick, etc.

BonnieR · 01-08-2013, 08:47 PM

Stupid cancer! I recall feeling just like you. It takes awhile to find your pace and what feels right I ditched the wig pretty early on. Could not stand that THING on my head. Wore hats and scarves etc instead. It took me a lot of trial and error before finding the bra arrangement that works for me. Finally have settled on the Coobie bra which is not even intended for mastectomy patients. I donated a whole lot of stuff to Look Good, Feel Better. The ACS program that gives supplies to new patients
Keep the faith. And it's cool that you are annoyed. That means you are probably feeling better! At least you are not thinking about cancer

linn65 · 01-08-2013, 09:24 PM

I know I am just vain and from a small town, and I have never went in public bald. I just can't do it and I have scarves but I just don't want to draw attention to myself even though I am sure people know.... I know it's stupid. I lost my hair 16 days after my first treatment, and I miss my hair soooooo bad. Now, losing a breast just sucks! They gave me a post op camesol but it has no support for the right breast. The left side incision goes from middle of chest to all the way under arm, and I don't know if I should get a special bra or what to be more comfortable? I don't like leaving the house because of this, but I don't like being home all the time either. 6 months in and it's a long way to go. Then I thought oh one good thing I can get a free tummy tuck......Well the more I read about DIEP thing it sounds like its a nightmare. How is a person to know what to do?.

BonnieR · 01-08-2013, 09:48 PM

Your feelings are never stupid. You are entitled to them. We have all been there.
It sounds lilke things are all still very new for you. You just had the surgery recently. There is alot to learn about how to make all this new stuff work for yourself. Is there any prosthetic store in a nearby town? A place that fits for bras and mastectomy products? It might be too soon if you are considering further surgery. Maybe your doctors nurses or staff can offer advise. Or the social work staff at the hospital. Also, American Cancer Society are good to talk to. You can even phone them
I think that we are more sensitive about how we appear than are the public. Some people will figure out you may be in treatment, others probably wont even notice. But no one will be critical. Except you!
You ask how is a person to know what to do? It takes alot of soul searching, talking to experts, getting more than one opinion, weighing the pros and cons. It helps so much to be on this board to get input from those who have walked ahead of you. Just take it easy. Stay open to everything you hear. Take a deep breath. Stay in the moment. Keep the faith.

Pray · 01-08-2013, 10:02 PM

Hi, I am so sorry your having hard time with all of this, me too.

They do make cooling caps for under your wig they worked great for me. As for the reconstruction I had expander, implants in, implants out, iimplants in, implants out, free tram flap, tummy tuck awesome, one more nip and tuck and I will finally be free after 3 years. There is an end you just have to find what works for you. It was very hard for them to even come close to making a match with implants and 1 real breast. You can do this. Hang in there. Please know that you are in my prayers. Gods blessings to you. Peace my friend.

Nancy

IrvineFriend · 01-08-2013, 10:05 PM

I was put in a bra following my surgery much like a girdle. Since we had our surgeries a day apart, I understand the entire bra issue. I was told to buy a bra that opens/closes at the front without an underwire. They are not easy to find and I'll let you know where/when I find one that is comfortable. American Cancer Society is a great source of help in this area.

I just signed up for the looking good feeling better class. They teach you how to wear scarves in very pretty ways. You'll probably have to make a drive, but the American Cancer Society will tell you where the closest class is, and you'll be with other women who are also uncomfortable with their appearance. I'm starting chemo next week and will buy one wig, otherwise, I'm going to be wearing cute hats and scarves.

Living in a small town may give you an opportunity to be a support to another newly diagnosed cancer patient. Given the rate of BC diagnosis, you're likely not alone, even in a small town. I've always looked at women battling breast cancer as hero's. I know if I saw you in public I'd be impressed with your ability to stay active and part of life.

carlatte7 · 01-08-2013, 10:43 PM

My sister made me some awesome stretchy hats out of tshirts- the frilly, stretchy kind of shirts. They were snug on my head, cool in the summer, a little sassy and wouldnt slip or move. You might look for a pattern online...it was basically a tube with a circle sewn on the top. Loved those things. Only wore my wig twice.

linn65 · 01-08-2013, 10:50 PM

They did give me a bra before I left the hospital and it does have like 6 hooks in front, so I should try it.

What kind of chemo will you be getting Irvinefriend?

I imagine the class would be 40 minutes away if they have one around.

And as of now I don't know anyone in the town I live in with BC, but if someone does get it in the future I would know how to be supportive. This is by far the hardest thing I have went through. I think sometimes I am just numb and I am going through each process. At the Same time I can cry out of no where and it is life consuming.

I am doing it but I think how do people do this. I think it would be nice if they sent BC patients away some where warm for this long treatment and come back when it's over.

IrvineFriend · 01-09-2013, 12:36 AM

Hi Linn,

I find the bra from the hospital VERY comfortable. I'm mainly looking for another bra to shower in so I can keep the one given to me to use during the day and so I can wash it while wearing the other. As I posted in another post, I'm still in a lot of pain and can't go without the bra on for more than a couple minutes unless I'm taking pain pills which I'm limiting as much as possible. There are stores that specialize in bras for mastectomy patients but like most things, will probably require you to make a trip. American Cancer Society will be able to give you their locations. I personally wouldn't buy one online as I would really want to know how it feels first.

I think I'm opting for TCH vs. ACTH, then radiation and then finish the year on herceptin. Initially I wanted to go with ACTH based on a paper written that showed a slight improvement rate, but I also don't want to compromise my cardiac function so I can ensure I can still do the year on herceptin. I've been a runner all my life so I don't expect any issues from my MUGA tomorrow, but I also like the longer rest periods that TCH offers between treatments vs. ACTH. What are you planning on doing?

I think the 40-minute drive would probably be worth it for the class. They cover all kinds of topics like applying eyebrows, dealing with eyelashes, and using makeup and different products to improve skin appearance. I've been also very down on myself as I have a nice wardrobe that I'm not able to wear and some days I'm too tired and sore to mess with my makeup, etc.

I get the feeling numb to feeling like crying as well. I do read the success stories on here, and it really HELPS me. The fact that you are on here, and reaching out tells me you are a fighter, and that is going to go a long way.

Keep us posted on how you're doing.

XO

jaykay · 01-09-2013, 12:45 PM

Linn65 - I am so jealous that you finished chemo! I had a bilateral mast in October with tissue expanders and do wear the Coobie bra (as Bonnie mentions). But I would imagine it's more difficult with one "real" breast.

I'm like you - I am not a scarf person and would not go out without my wig on (except to walk the dog!). Plus it's winter and my head is quite cold. I wear a knit cap or baseball cap around the house. Your wig may need some adjustment to make it more comfortable. I've been back to my wig person twice and it has definitely helped.

I started chemo on Nov 29th. To me, surgery was the easy part and was dreading the start of chemo. I'll be halfway through after tomorrow (6 TCH/1 year H), so the end is in sight. Then radiation and finally implants. I've done radiation my first go round and it was literally a walk in the park. But I didn't have chemo at all so it may be different. Can't wait to get these tissue expanders out!!

Hang in there, we're all stronger than we think.

Janis

prolifejoan · 01-09-2013, 05:19 PM

It gets a whole lot better after the drains are out. Also, I take a natural Immune Booster from www.cukierski.net, and I had no trouble with infection after my bilateral mastectomy on November 16, 2012. Also, I weathered through two weeks of bronchitis during the Christmas Season without having to get antibiotics. Tomorrow I have Herceptin injection.... I have 200 mgs every week instead of 600 mgs every three weeks, I cannot tolerate the 600 dose, I was getting heart pains, fillibration, etc... too much for me.. so I am grateful for the way it is going.. which will continue till August. I have 5 more weeks of daily Radiation... (5 days a week). That is going smoothly, although side effects are kicking my butt. I am Catholic so it helps me to meditate on the suffering of the Saints and of our Savior, and this gives me a great deal of peace. I chose to not wear a wig, I wear hats, usually a stocking cap in the cooler months. For make-up, I only wear lipstick and blush. I bought those really light bean bag inserts from the Cancer catalog, and they work well for me. I just put them into my regular old bras... I am praying for you and for everyone on this list...

linn65 · 01-09-2013, 05:32 PM

I will have other breast taken off in 6 months then reconstruction. I know you are not suppose to rush life but I will be happier in a year from now when this is done.

I feel naked without my wig on in public, and I admire those that can go bald in public. I just can't do it. Now, I know what it's like to be a bald man and it sucks ESP with Chemo induced menopause. One minute my head is sweating and the next it's cold. My sister did buy me a little battery operated fan from amazon and it is really nice to have when those hot flashes come.

chekmark · 01-09-2013, 05:59 PM

Boy do I remember those feelings so well, I would refer to myself as a freak show. Bought an expensive wig that looked real but so uncomfortable and the prosthetic, yuck. My insurance paid for bras so I went to a local store that specialized in fittings, they had pretty, not so pretty, comfortable and not so comfortable but they worked until reconstruction, but I did find a cool wig hat there. It was a baseball hat with hair and I wore it the most when out. I never went anywhere bald either even at home I always had something on my head. The hat was cool, when I donated it it was a hit. It was sporty and I looked like I was just wearing a baseball hat, no one knew I was bald underneath. I actually had a hard time parting with it but since I hate anything on my head now I said get rid of it and it felt good to donate everything. Cancer takes away some of our self esteem also but we get it back SLOWLY, Someone said to me when I first started my journey something that I clung on to, it is only temporary. So my her2 sister, it is only temporary. Good luck to you.

CoolBreeze · 01-09-2013, 06:14 PM

I've been bald twice now. I haven't managed a wig either time. Second time I had a bit more expensive and lightweight wig, so I could tolerate it a couple hours.

Scarves all the way for me!

CarolineC · 01-11-2013, 10:50 AM

I have lost my hair twice now and have worn a wig just a few times. I felt uncomfortable, it was itchy and didn't look like my hair at all (I had shoulder length curly hair originally). The second time I went through treatment I thought I would be smart and get my hair cut in a fringe to attach to a hat, but I ended up in the hospital on my first treatment and lost my hair before I could do that.

I now wear a lightweight jersey-type hat-seen in my picture- in different colors (black, brown) that I wear with a scarf headband with an elastic back. I made a few in different colors and I can color-coordinate with different outfits, I feel comfortable because I can see my face and feel more like me.

Catkins · 01-13-2013, 03:51 PM

Hi Lin

I'm six months ahead of you re diagnosis and treatment schedule.

Very well done for going to the gym!

Like you, I lost my hair after the first round of chemo but...it's a year since my diagnosis (January 2012) and I am cancer-free.

Hope this will encourage you to crack on in all you do.

Best wishes

Catkins

Jackie07 · 01-13-2013, 04:44 PM

Hi Lynn,

I used a small silk hankerchief to cushion the wig during chemo in 2007 while teaching in a local high school. Silk is wonderful! It keeps you warm when it's cold and make you feel cool when it's hot. And it's soft to the touch so the wig lining would not scratch my head.

If not for the huge long scar on my head (from the brain tumor surgery in 1990), I'd have gone bald... (not really!

For informal outings, I just wore/wear a baseball cap.

Feel free to gripe... We are listening!