Caretaker

StubMac

My life partner was diagnosed with invasive ductal cancer on 4/16.  She had a double mascectomy on 5/12, and the good news is that it was just in her right breast (modified radical on that side with simple mascectomy on the left).  She's had two chemo treatments since then, and there are four more scheduled.  I'm finding it harder and harder to function in everyday life.  My partner was the rock at home, and I'm scared of how weak she is during the chemo.  I have been to all the appointments and will continue to go when I can, but I can't attend the next chemo on 8/14 due to work concerns.  It freaks me out not to be there, but we have supportive friends who can be there.  I want to cover all the bases but, as time goes on, I realize that I cannot do that.  I keep looking for a suport group for lesbian caretakers in my metropolitan area, but there don't seem to be any.  I have found a therapist but have only gone twice to date.  I would appreciate any words of wisdom from spouses in a similar position about how to manage everything.

NoH8

I'm so sorry for what you're going through. I've said many times I think it was much easier for me having cancer than it would have been to watch a partner go through it.  I've found that it's really hard to find lesbian support and I wish you luck doing so. We're all here for you and your partner.

xxjenxx

Hi StubMac-

I have lurked these boards for years, but your note was the first that prompted me to login and write.  My partner also as breast cancer- originally diagnosed 3 years ago. I helped her through the 9 months of chemo and radiation.  This last year her cancer returned and metastasized to the bone, lung and liver.  We now attend weekly chemo together and just make the best of every day.  We have been together since our early 20s (15 years total) and have two children together so I'm baffled how to ever life without her. 

One thing I noticed (and maybe you are different) but that in moments of crisis I have been remarkably calm and supportive, but once she is stable I fall apart a bit.  My hardest time was when she was first done with chemo after the first year and was ready to get on with life... that felt like the first moment I could be sad.

So hang in there.. my heart goes out to you... and lastly, where do you live? 

StubMac

Thanks so much for your reply, Amy.  It is an incredibly tough journey for both.  I know the importance of support for the first time in my life.

StubMac

Hey xxjenxx,

Gosh, my best wishes go out to you and your partner....I can only imagine what you two are experiencing.  My partner and I are going on 3 years, but, for the first time in my life, I've found my life mate.  My life without her is unimagineable so I don't even go there.

I completely understand the dichotomy of being strong when my partner needs it and falling apart when she is strong.  Which, given my partner's nature, means that I fall apart (in private) a lot.  Then, I start to worry about the future, and I almost become paralyzed.  But, since I am the main financial support (with a compassionate employer who has partner health insurance benefits), I don't have the luxury of falling apart too much or for too long.

Since I'm in the Denver metro area, I would have expected a lesbian support group.  I've been looking since April with no success.

You both hang in there, and what are the resources in your area?

StubMac

xxjenxx

Hi again StubMac-

Do you know much about the pathology of your partner's cancer? The stage?  There is such a wide range of reccurence risk depending on the histology.  Shoud your partner have few (or no) lymphnodes positive and a lower stage, the rates of mets is much lower and you might be worrying for little chance of the cancer returning.  Remember, most breast cancer is cured and goes away and you and your partner will live together for many more years to come.

And yes, I do live in a large metro area (SF California) but again, with two kids and a sick spouse I barely have time for the grocery store let alone other support.   I have also been at this awhile and have found a pace with this "new normal" so my coping mechanisms are (for the moment) strong.

My biggest worries are around being a single mom someday and wondering what it will be like to be widowed in my 30s and once again single.  I feel that as long as I have my partner I'm "ok".... but I wonder about when she is gone....

StubMac

Yes, the pathology of my partner's cancer was positive.  Her stage was IIB and she only had two positive lymph nodes on the right side.  None on the left.  Thank you for reminding me that there is a good prognosis.

My heart does go out to you and your family.  It's just us two, and I am tapped out most of the time.  My partner has four kids but the youngest is 24, so they are all pretty self sufficient.

Your use of the phrase "new normal" homes in on exactly what I am struggling with right now.  It's the idea, well, reality, that this is our new normal.  I am constantly staggered by the thought that every check up from now on will be nerve wracking and that every nap she takes will scare the heck out of me.  I hear from your post that it is possible to adjust and to make peace with this new normal.  I take hope from that.

I used to do some estate work, and the idea that we all will pass at some point was very abstract to me.  A breast cancer diagnosis certainly takes all the abstract away from that concept.  As for the biggest thought of possibly going on without my partner, I do also take hope from something I read not long ago about how medicine continues to make advances in this area, and how, with each passing day, the chances of survival increase.  Along with having to find a place for cancer in our lives, I hang onto this thought to help make the future be a not so scary place.

NoH8

New normal is a favorite phrase of mine. I think what's hardest about cancer's new normal is so much of that normal is the unknown and a sense of powerlessness. For those of us who are control freaks, The idea that I could do all the right things and still have a "wrong" outcome certainly gave me a new perspective on myself and on life. It also gave me the ability to give up on a lot of stupid worries and for me, looking at the positives of the cancer experience helped me grow as a person and appreciate life in a better way.

vkfrainbow

I like "new normal".  In our household, there is a sign outside of the laundry area that says, "normal is just a setting on the dryer"

Since it is a fairly new diagnosis, there isn't exactly a leveling off of emotions, tests and expressions of shock by folks who are just now finding out about the cancer.  I vaciilate between sitting and staring at my computer screen and staring at Judy (my partner) in a way that she doesn't know that sometimes I am freaking out.

This is not the first medical challenge our relationship (33 years) has encountered, so our question is sometimes, what else?  Still waiting for clarification of the PET scan results.

Our son is getting married at the end of this month, so Judy is on Arimidex until then and then the "real" chemo begins.

Glad y'all are here!

NoH8

Val for me the waiting is the worst part. I could deal with anything once I knew what I had to deal with. My anxiety was all about wondering. Congratulations on your son's marriage!

StubMac

Val,

Wow, what a parallel.  Between my partner's surgery and her chemo, we had the absolute pleasure of attending her daughter's wedding.  She debated whether the chemo should start first, but, in hindsight, she was right in waiting.  She is now four of six treatments in and it would have been hard on her to make the trip, given what we know now about chemo.

The fact that we have these wonderful things in our lives at the same time that we are dealing with cancer absolutely amazes me.  I hang onto the good stuff and it gives me hope for the future.

Hang in there.

Stubs

rayne_23

"the waiting is the worst part. I could deal with anything once I knew what I had to deal with."

 i couldn't agree more with Amy's phrase.

My partner was Diagnosed in july, and summer has been a whirlwind of stuff. (hence why i haven't been posting lately)

In our relationship, i'm normally the financial providor and my partner (whom also works) is much better at keeping our house actually homely. I don't know how to do it all myself, and i'm worried i'll disapoint her.

I'm in toronto canada, and there are no lesbian support groups that i've found iether.

this group has helped with talks and general opinions, and when surrounded with with such love and positivity, I "fall apart" a heck of a lot less.

-Rayne

WoundedHeart

Hello!

Since my partner was diagnosed with HER-2 type Breast Cancer in May of this year, I have been looking for options to help me along the way.  She is doing quite well at this point and had four rounds of chemo, surgery to remove the lump and two more rounds of chemo.  She will start five weeks of radiation in early November.  Really, she is really moving forward after such an intense battle with no surprises along the way (no new cancer or complications).  Yeahhhhhh! 

Here is what has made my situation so complex; I have lost a number of people to sickness or accidents, I had moved to another country for us to be together and had been there for 9 months at the time of diagnosis, I work for myself and was in the process of getting my visa and setting up a new company in this new country (where I do not speak the language), I'm 6,000 miles away from family and friends, therapy is hard over the phone but I tried it, and in general, we have spent the last six months at the hospital, clinic, or other medical office as well as catching up on work and life in between treatments and appointments.

I have searched for some type of online support group (in English) as there is little suport in the country I live in and none of it for English speaking same-sex partners (that I found).

So, we can see the light at the end of the tunnel, but I feel very wounded inside.  My fear turn to frustration which turned to sadness which turned to anger which has made it hard for me to be me.

I welcome any suggestions I may have missed as we are not all the way thru and there will still be much to do, support and witness.  My partner gets extra credit for her great attitude and spirit. 

Thanks in advance for any input-

Wounded Heart in Europe

TorchSong

Wow, Wounded Heart--I don't know what support to offer except that you certainly do have these boards as a way to vent or share or get support. I know it's not the same as a support group right there in town, though....hugs to you both.

My partner and I haven't been together very long--a bit over 6 months. We've known each other for a few years--one day we took another look at each other and said, "HELL-o!" We're a good fit, and the  relationship feels very good. She had some surgery a couple of months after we became partners, and stayed with me during a good part of her recovery. Then she went back home, we continued to grow the relationship--and boom, my dx.

I don't want illness to define our relationship. We have so much going for us--we are similiar in many ways, but different enough that we complement each other. We are in the same (demanding) profession, so we can support each other in that, similar backgrounds, etc.  It's kind of frustrating--it's very comforting to me to have her present for appointments (like the initial meeting with the onc, port placement, my first chemo, etc.), but at the same time, I don't want "us" to be all about my BC, anymore than we were all about her surgery. We're trying to carve out "cancer-free" time, but it's hard.

I want to strike a balance between letting her know I do need her and demanding too much. It's hard on her too (she's a survivor herself), so I don't want to ask for too much. And yet I know she's a big girl and can tell me when too much is too much. I know she loves me and I am very much in love with her...but how do we work through this?

Anyone else been in a new relationship when they were dx'ed?

NoH8

Wow wounded- my heart goes out to you. Are you comfortable saying what country you're in because maybe there are people on the board from different countries and maybe there's someone english speaking hear you.

Torch- I can understand not wanting your illness to define the relationship.  That's a tough balance to try to maintain, particularly when dealing with cancer procedures. At least she's  a survivor so she's probably not as freaked out as someone without any knowledge or experience in what we go through. I was single during tx so I can't help you there.