What they don't tell you!

When you get that initial diagnosis you know there is going to be surgery. At least one of your breasts, whether you have a mastectomy or lumpectomy, is never going to be the same again. That's the first blow.

For most of us there is also chemotherapy and we lose all our hair - another knock-out blow to our self-esteem and femininity. It's been nearly a year since mine started falling out and I still cringe everytime I look in the mirror. I alternate between the wig and hats but I'm soooo fed up with it.

Maybe I'm vain, I don't know, but I've not been able to come to grips with baldness and now very short hair. It depresses me very much. But the assault to our breasts and the hair loss are expected. What I wasn't prepared for, and what has slowly dawned on me over the last 13 months or so since diagnosis, is that breast cancer - or least the treatment for it - can fast track you into old age.

Estrogen, that lovely hormone that once kept us young and sexy, is now the enemy. If your ovaries aren't blugeoned into an early retirement by chemo, then tamoxifen will hoover up your estrogen leaving you in a menopausal limbo. Better get used to hot flushes at the very least.

Previously my comments about tamoxifen on this site have been mainly positive. But after 4 months of popping the dreaded little white pill every morning I'm starting to wonder whether I've been kidding myself. Am I just imagining it or is my skin recently become much dryer and crepier (like an old lady)? Why have I been awake since 2.30am this morning? Am I depressed because of tamoxifen or because I've been awake since 2.30am this morning. And actually despite what I"ve said to the contrary here previously, now that I've been paying closer attention I think my libido has dropped away.

All of this sucks but I don't really get to complain about it because, hey I'm 47, and menopause would've happened soon anyway. "It's all part of the normal aging process," is my thirty-something oncologist's way of briskly dismissing any of these issues. And while I'm sure she is correct, I can't help feeling I've been cheated out of the last five years of my "youth".

I'm just not ready to be an old lady yet.

As I write this I am very concious that there are many of you that have suffered a great deal more than me with this wretched disease - women much younger than me dealing with these issues, women with advanced breast cancer.

I'm sorry if my complaints sound trivial but today at least I need to vent.

19 Replies

LisaC
Member
12 years ago
Thanks girls. I will check it out. Yes my hubby has been patient too. I'm the impatient one. Would be nice if we didn't need any help in that department. Lisa xx
Janey235
Member
12 years ago
Yes they don't tell you about the loss of libido or the pain you might experience having sex. Viv has given you the link to a great blog which I am a part of too and I have tried a few of the products mentioned. So far none have worked. I have now purchased a product called YES online and I'm currently trying that out. It has helped a little but I have only used it once so far. My husband has been extremely patient with me but I must say I've been frustrated and upset that things aren't working for us yet. I have my fingers crossed that YES might be our answer. Janey xxx
Janey235
Member
12 years ago
Yes they don't tell you about the loss of libido or the pain you might experience having sex. Viv has given you the link to a great blog which I am a part of too and I have tried a few of the products mentioned. So far none have worked. I have now purchased a product called YES online and I'm currently trying that out. It has helped a little but I have only used it once so far. My husband has been extremely patient with me but I must say I've been frustrated and upset that things aren't working for us yet. I have my fingers crossed that YES might be our answer. Janey xxx
Janey235
Member
12 years ago
Yes they don't tell you about the loss of libido or the pain you might experience having sex. Viv has given you the link to a great blog which I am a part of too and I have tried a few of the products mentioned. So far none have worked. I have now purchased a product called YES online and I'm currently trying that out. It has helped a little but I have only used it once so far. My husband has been extremely patient with me but I must say I've been frustrated and upset that things aren't working for us yet. I have my fingers crossed that YES might be our answer. Janey xxx
VivW
Member
12 years ago

Hi Lisa, check out this blog:

Tamoxifen side effect relief please?!

Posted by fungooleyruley on 16 Nov 2013

Interesting and informative blog, lots of lol.

Viv
VivW
Member
12 years ago

Hi Lisa, check out this blog:

Tamoxifen side effect relief please?!

Posted by fungooleyruley on 16 Nov 2013

Interesting and informative blog, lots of lol.

Viv
LisaC
Member
12 years ago
hey ladies, one thing that isn't usually addressed is the loss in libido. It's probably not all tamoxifens fault but it does seem to hit all at once. I had a hysterectomy 18 months ago but they left my ovaries & had major work done a year before that. However my ovaries had gone into a bit of a shock . Anyways luckily 50 shades of grey was around and that gave them a little kick start lol! Didn't last for long though, the red room of pain really isn't my thing - I found it more comedy than anything but what I have found is a cream that "helps" and a lubricant that doesn't irritate. They are called "xscream cream" & "just like me" lubricant & get them online from pure romance site. They are made for women like us. They come in an unmarked package also just in case you might be scared the postie will spread it around town!!! I wanted to try this before having to go to doctor and asking for a prescription cream. I'm not a prude by any means but it was something I was too shy to ask about. I stumbled upon this from another online forum 2 years ago (for hysterectomy induced menopause) It has helped me immensely as I felt at 44 y.o. I was too young to have lost all my mojo!! Hope this helps if needed, I will just go an be embarrassed by myself now lol Lisa xx
LisaC
Member
12 years ago
hey ladies, one thing that isn't usually addressed is the loss in libido. It's probably not all tamoxifens fault but it does seem to hit all at once. I had a hysterectomy 18 months ago but they left my ovaries & had major work done a year before that. However my ovaries had gone into a bit of a shock . Anyways luckily 50 shades of grey was around and that gave them a little kick start lol! Didn't last for long though, the red room of pain really isn't my thing - I found it more comedy than anything but what I have found is a cream that "helps" and a lubricant that doesn't irritate. They are called "xscream cream" & "just like me" lubricant & get them online from pure romance site. They are made for women like us. They come in an unmarked package also just in case you might be scared the postie will spread it around town!!! I wanted to try this before having to go to doctor and asking for a prescription cream. I'm not a prude by any means but it was something I was too shy to ask about. I stumbled upon this from another online forum 2 years ago (for hysterectomy induced menopause) It has helped me immensely as I felt at 44 y.o. I was too young to have lost all my mojo!! Hope this helps if needed, I will just go an be embarrassed by myself now lol Lisa xx
NaturalBel
Member
12 years ago
I still come back to BCNA and read what you are writing and agree with what you are saying. This site allows us to throw a tantrum verbally, be listened to and most importantly UNDERSTOOD!

Dont get me started about the hair thing. I keep throwing the line "Who stole my fringe" and "I want my hair back, who stole my hair!" Yes, we are all vain about hair. Ask my husband who had a failed hair transplant proceedure in his 30/s (smiling).

I am a triple negative, so they havent given me anything! But my new best friend, I met at the Northern Cancer Support Centre through Confidential Coffee and Chat, in Launceston (nice plug!), has to have hormone inserts, and she says it is giving her hell too. I often wonder what happens to us, the ones who dont have it, and our bones etc, but thats another conversation.

I had an MRI on my knee and have joint pain, that I didnt have before Chemo and Cancer, to discover, it is just a coincidence! So I recommend all to start bumping up their Fish Oil, at 2000mgs twice a day, or like I do, Flaxseed Oil Caps, 6xs a day, which had double the Omega's as fish oil does, and no repeat! (I work at Legana Amcal Pharmacy in Launceston!).

My latest evidence of what happens after, is I did too much with my surgery arm. For those who get told "exercise it, but dont do too much!" 7 hours of weeding and gardening in a week, is too much. I was doing so well too. Now I have to go back to lymphatic massage (100 strokes a day with sorbelene cream, as though patting a cat ), and have made bookings to see a physio and a lymphatic massage specialist.

Every day when I get out of the shower, I use sorbelene cream and focus on relaxation and moisturising entire body. I also do breast examination each day, with the moisturising. Urederm Cream by Hamiltons is brilliant for dry skin, and I use that on my face.

Hot flushes are a bugga, but they are controlled with a half hour walk each day, avoiding spices and alcohol, and thats all I am doing. Have spent a lot of nights in spare bed!

Going back to work after a year away with cancer, a whole other subject.

But no matter what I ALWAYS HAVE BCNA TO GIVE ME SUPPORT AND ADVICE AND A COMMUNITY OF WOMEN, WHO GET IT! THANK YOU

Love Bel
LisaC
Member
12 years ago
Wow, I'm so grateful I'm not the only one feeling these feelings. Everyone around me says, you made it look easy (surgery and chemo). I was very active and also fortunate that my body coped quite well. Now it has caught up with me...bone pain, weight gain, cranky, sleep deprived, burning feet....I could go on and on. I usually keep it to myself as I realise I am more fortunate than some others but I've lost my mojo. My smile is forced some days and I keep wondering how the next 5 years are going to be. I was sort of hoping that it would settle down a bit. Oh well, I've booked into the dentist and optometrist - at least I can hopefully do something about that. Yawn....Lisa xx