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Medical Forum / Diseases and Disorders / Breast Cancer / April 2006

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Facing the daemons alone!

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Jonette Wilton - 17 Apr 2006 10:55 GMT
Hi
I have recently returned to Australia for what I thought would be 2 weeks to
have a lump removed from my breast (assuredly NOT cancer from my doctor in
US) and to have my knee fixed (ski accident).  And so here I am still - of
course the lump was cancer, and then went the lymph nodes, and then in came
the port - I feel as though I've been under anaesthetic and fighting the
grogginess ever since.

It's not just the shock of finding my instincts were correct, or the
lumpectemy, then node removal, then port , then chemo 1, hair loss, and now
chemo 2 - it's the total removal from my comfort zone away from my two
daughters (who have had to continue school in US) and to live for the first
time in my life on my own..... It's very daunting and very depressing.  I
suggested to my oncologist I needed some anti-depressants which he
prescribed, and then I asked to see a psychiatrist - and he said he didn't
know any.  But he would look into it - that was over a week ago - too bad if
I felt like decking myself meanwhile!!

I know I'm tough - I lost my son in a snowboard accident 3 years ago, and
then my husband up and left .... the pain just never ends!!  But I crawl
on - I see myself as the guy in Monty Python who has his limbs chopped off
and he says "just a flesh wound" as he bounces around.  That's me - but the
flesh wounds are getting too deep!

It's just hard facing all these deamons on my own.

Jonnie in Melb, Aust.
Madge - 17 Apr 2006 11:22 GMT
> Hi
> I have recently returned to Australia for what I thought would be 2 weeks
[quoted text clipped - 5 lines]
>
> Jonnie in Melb, Aust.

Hi Jonnie, you will not be alone in here, I have read lots of lovely posts
of support.On the positive side, you did not go undiagnosed as you would
have in US.
Have you already started chemo ???
If so, perhaps you can talk to your nurses and get more help , support from
them

I can understand your feeling of loneliness, I too have just been diagnosed,
and while my investigations were taking place my husband continued to book a
6 week trip to visit relatives abroad, he did not think to postpone or
cancel it:-(

On hearing my diagnosis, he just said I may come back early.

So like you I too am still shell shocked and hurt and lonely and most of all
frightened, I also am a survivor of the hardships life throws at us.

I go for my op on Wednesday, then will have to wait for further news on my
treatment afterwards. I do know I will be having radiotherapy

I have no doubt that we shall both get over this in our own ways, so think
positive and try to keep smiling.

I am thinking of you, and send you hugs and prayers, you are not alone

Madge
alex - 18 Apr 2006 00:39 GMT
> I have no doubt that we shall both get over this in our own ways, so think
> positive and try to keep smiling.
>
> I am thinking of you, and send you hugs and prayers, you are not alone
>
> Madge

Wishing you the best of luck Madge... what type of operation are you having
lumpectomy or mastectomy? Alex
Madge - 18 Apr 2006 01:19 GMT
>> I have no doubt that we shall both get over this in our own ways, so
>> think positive and try to keep smiling.
[quoted text clipped - 5 lines]
> Wishing you the best of luck Madge... what type of operation are you
> having lumpectomy or mastectomy? Alex

Thank you Alex, it's lumpectomy with WLE, and sentinal node whatever,
followed by radiotherapy at the mo, but all depends on results

Madge
alex - 18 Apr 2006 02:55 GMT
Madge wishing you the best positive outcome. Most patients who opt for
lumpectomy ( with a confirmed invasive breast cancer diagnosed) need
radiation.  Let us know how you make out. Alex

"
Madge - 18 Apr 2006 09:01 GMT
> Madge wishing you the best positive outcome. Most patients who opt for
> lumpectomy ( with a confirmed invasive breast cancer diagnosed) need
> radiation.  Let us know how you make out. Alex
>
> "

Thank you Alex, although the docs have not mention the grading etc as yet,
they did say I would have radiotherapy. After the op of course I will know
all the further details

Madge
Jonnie - 18 Apr 2006 19:36 GMT
Dear Madge
Thanks so much for your words of support.  And I wish you the very best of
luck on Wednesday - you willl also be in my thoughts and prayers.  None of
us need this in ourlives - and you especially don't deserve your husband's
reaction... he probably just doesn't know how to deal with it - men can be
so weak at times.... I hope he has come around and returned with you for the
op???

let me know what the diagnosis is after the op - i'm praying it will be all
good!
take care
Jonette

>> Hi
>> I have recently returned to Australia for what I thought would be 2 weeks
[quoted text clipped - 32 lines]
>
> Madge
Madge - 18 Apr 2006 19:51 GMT
> Dear Madge
> Thanks so much for your words of support.  And I wish you the very best of
[quoted text clipped - 8 lines]
> take care
> Jonette

Thanks Jonette, I will do that, alas no my husband will not e with me for
the op, in fact he will not return till May 11. Thank god for friends !!

Madge
Barb - 17 Apr 2006 15:49 GMT
Hello Jonnie,
I am so sorry you are having to do this on your own. I had the support of a
loving husband, other family and friends and there were still times when it
felt like a very solitary journey.  I'm very glad you found this group.
There are many kind, wise folks in here with a wealth of experiences (both
cancer related and life related).  You are not alone when you can write to
this group.

Do you know how long you will need to remain in Australia?  Is there a
prescribed length to your chemo at this point?  Is there a social services
department at the hospital where you are being treated?  Perhaps there is
someone who would talk with you (not a psychiatrist, but a social worker).
I hope your Dr. is able to find a good psych Dr. also, and that the
antidepressants kick in soon. They can take as much as a couple of weeks, as
I understand.

It's been a long time since my diagnosis, so I'm not a good resource person
regarding treatment.  I'm sure some other group members will weigh in soon,
and may have some good practical suggestions.  In the meantime, I'm thinking
of you Jonnie and hoping that you get maximum benefit with your treatment
and few side effects.  When you want a place to talk, the group is here.

Hugs,
Barb
R. Fizek - 17 Apr 2006 16:24 GMT
Hi Jonnie,

It is very lonely - even if you have a wonderful husband at your side as I am lucky enough to have but the loneliness and fears sometimes seem insurmountable.  I was always someone who highly valued my private time alone and would get up early so that I had some time to sit alone and think and plan my day but now I can't stand being alone and will lay in bed wide awake waiting until my husband get up so I'm not by myself.  Everyone says that you have to have a positive attitude but it is truly difficult when you mind goes on trips of it's own.  I started taking xanac when I was diagnosed for anxiety.  I found that after I started treatment it got somewhat better since I was finally doing something about the problem instead of just waiting and all the tests.  But sometimes it comes back - like this past holiday weekend.

I've found that there is always someone here at the group who will be happy to hold your hand via net space and give you some encouragement when you can't find any on your own.

Take care.

Tamara
 Hello Jonnie,
 I am so sorry you are having to do this on your own. I had the support of a
 loving husband, other family and friends and there were still times when it
 felt like a very solitary journey.  I'm very glad you found this group.
 There are many kind, wise folks in here with a wealth of experiences (both
 cancer related and life related).  You are not alone when you can write to
 this group.

 Do you know how long you will need to remain in Australia?  Is there a
 prescribed length to your chemo at this point?  Is there a social services
 department at the hospital where you are being treated?  Perhaps there is
 someone who would talk with you (not a psychiatrist, but a social worker).
 I hope your Dr. is able to find a good psych Dr. also, and that the
 antidepressants kick in soon. They can take as much as a couple of weeks, as
 I understand.

 It's been a long time since my diagnosis, so I'm not a good resource person
 regarding treatment.  I'm sure some other group members will weigh in soon,
 and may have some good practical suggestions.  In the meantime, I'm thinking
 of you Jonnie and hoping that you get maximum benefit with your treatment
 and few side effects.  When you want a place to talk, the group is here.

 Hugs,
 Barb
Jonnie - 18 Apr 2006 19:48 GMT
HI Tamara
Thanks for your support.  I am so pleased I found this group - I have had so many lovely words of inspiration from so many people.  It just so reassuring to know there are people out there who care!  And aren't too frightened to talk about "it"

Jonnie
 Hi Jonnie,

 It is very lonely - even if you have a wonderful husband at your side as I am lucky enough to have but the loneliness and fears sometimes seem insurmountable.  I was always someone who highly valued my private time alone and would get up early so that I had some time to sit alone and think and plan my day but now I can't stand being alone and will lay in bed wide awake waiting until my husband get up so I'm not by myself.  Everyone says that you have to have a positive attitude but it is truly difficult when you mind goes on trips of it's own.  I started taking xanac when I was diagnosed for anxiety.  I found that after I started treatment it got somewhat better since I was finally doing something about the problem instead of just waiting and all the tests.  But sometimes it comes back - like this past holiday weekend.

 I've found that there is always someone here at the group who will be happy to hold your hand via net space and give you some encouragement when you can't find any on your own.

 Take care.

 Tamara
   "Barb" <ammerman@epix.net> wrote in message news:fWN0g.7913$lb.723309@news1.epix.net...
   Hello Jonnie,
   I am so sorry you are having to do this on your own. I had the support of a
   loving husband, other family and friends and there were still times when it
   felt like a very solitary journey.  I'm very glad you found this group.
   There are many kind, wise folks in here with a wealth of experiences (both
   cancer related and life related).  You are not alone when you can write to
   this group.

   Do you know how long you will need to remain in Australia?  Is there a
   prescribed length to your chemo at this point?  Is there a social services
   department at the hospital where you are being treated?  Perhaps there is
   someone who would talk with you (not a psychiatrist, but a social worker).
   I hope your Dr. is able to find a good psych Dr. also, and that the
   antidepressants kick in soon. They can take as much as a couple of weeks, as
   I understand.

   It's been a long time since my diagnosis, so I'm not a good resource person
   regarding treatment.  I'm sure some other group members will weigh in soon,
   and may have some good practical suggestions.  In the meantime, I'm thinking
   of you Jonnie and hoping that you get maximum benefit with your treatment
   and few side effects.  When you want a place to talk, the group is here.

   Hugs,
   Barb
Mary Fisher - 18 Apr 2006 20:25 GMT
HI Tamara
Thanks for your support.  I am so pleased I found this group - I have had so
many lovely words of inspiration from so many people.  It just so reassuring
to know there are people out there who care!  And aren't too frightened to
talk about "it"

Jonnie, we've been talking about it for years, to our friends, to each other
on the group, to strangers in the street ... I don't know that it helps to
talk but it certainly doesn't harm.

What does help is listening.

Keep talking.

Mary
Pam Cook - 17 Apr 2006 19:19 GMT
> Hi
> I have recently returned to Australia for what I thought would be 2 weeks to
[quoted text clipped - 23 lines]
>
> Jonnie in Melb, Aust.

            Hi, jonnie...pls don't think you are on your own...Most of us
have been down this road..or a loved one has...But I have to say I felt very
isolated at times...still do.....Still wake up nights in a cold
sweat.....still have the breathlessness,  which my  G.P  asssures me is
anxiety, but which I still worry about..that it is the cancer spread to my
lungs....Still feel in the night for any lump, bump or clump,  that might
mean that I'm about to do round 2 with 'the beast'   Sounds stupid to
others....Husband Bob seems to think they are monitoring me so I don't need
to worry.  But my next appt with onc is in August...an awful long time
away....   I really feel for you and hope you get suport from these lovely
people , who were so good when  needed them...and still are when I get
panickie (sp?)>
                                           cyber hugs to you ((((jonnie))))
Jonnie - 18 Apr 2006 19:47 GMT
Thanks Pam
This is a trauma that must leave you permanently "scarred".  I know it
probably makes you appreciate what you have in life, and what you have left
in life - but the fear is very real and very frightening.

When I lost my son I wanted to die - I wanted the earth to swallow me up and
take me to him..... but I also have two girls who I love and adore - and who
still need their Mum.  So it's interesting 3 years after my son died - I am
now trying to fight this thing and live on...

it shows that we are much stronger than what we think!

Keep up the positive thoughts....
Jonette

>> Hi
>> I have recently returned to Australia for what I thought would be 2 weeks
[quoted text clipped - 50 lines]
>                                            cyber hugs to you
> ((((jonnie))))
A. P. Thorsen - 17 Apr 2006 22:11 GMT
> I have recently returned to Australia for what I thought would be 2 weeks to
> have a lump removed from my breast (assuredly NOT cancer from my doctor in
[quoted text clipped - 8 lines]
> daughters (who have had to continue school in US) and to live for the first
> time in my life on my own.....
<deletions>

> I know I'm tough - I lost my son in a snowboard accident 3 years ago, and
> then my husband up and left .... the pain just never ends!!  But I crawl
[quoted text clipped - 3 lines]
>
> It's just hard facing all these deamons on my own.

Hi, Jonnie,

I'm so sorry you're going through all this, and on your own for the
first time, too!  My heart goes out to you.

I had some similar kinds of experiences:  Over about a two-year period,
I lost my husband of 21 years to esophageal cancer, both parents-in-law
(with whom I was close) died, father was blinded in a fall & had to move
to assisted living (I'm an only child & my mom had died a few years
before of BC), then I got diagnosed with BC myself.  Later my dad also
died.  Sometimes it feels like things are just piling up, and you think,
"OK, now what's next?"

Everything you're feeling now is very, very rational -- who wouldn't be
depressed & thrown for a loop?

But, I'm sure you're going to be OK.  You're doing all the right things,
and that's really important.  You're in there fighting.  You're not
giving up.

I'm sorry to say that I don't know much about the Australian medical
system, but here if the doctor wouldn't or couldn't recommend a
psychiatrist, I'd suggest calling a government community health
organization or a cancer organization and asking about referrals, or to
ask them about other places that might be able to give you referrals.

Having gone through BC without siblings, spouse, or children myself, I
know it can be hard being on your own at such difficult times.   I was
lucky, in my case my sisters-in-law were WONDERFUL to me.  I also
reached out to friends, and many of them were extraordinarily
supportive.  Even people I didn't know very well (such as co-workers)
offered to help me when they heard what was going on.

Another thing you could check into is breast cancer support groups (the
live & in person version).  Your cancer center may have information, or
perhaps you could get information from an agency or charitable
organization that focuses on cancer.

Also, here in the US, some American Cancer Society chapters have
something called "Reach to Recovery" where they match you up with a
volunteer who had breast cancer and who is somewhat similar to you (age,
family situation, etc., as much as they can match).  Maybe there's some
kind of program like that where you are.

Doing something active that you can manage, even during treatment, can
help with both health & mood, too.  Things like going for walks, or
working out (within parameters your doctor might set) at a gym, doing
yoga, bike rides, etc.  It reduces stress, reduces fatigue, helps with
mood, and helps you feel stronger.  Research is also finding that
exercise reduces or delays recurrence.

This breast cancer experience won't be easy, but it may not be as bad as
you fear.  Taken one step at a time, it's manageable.  No one *wants* to
do it, but -- especially for the kind of strong person you are -- you'll
get through it.

And this group is great, if you need help, need to vent, need ideas or
feedback, etc.  Just come here & post.  Please let us know how things
are going with you, as the situation progresses.

Welcome, and please know I'm beaming positive thoughts your way.

Ann T.
Remove 'dontsendspam' from address to reply by email
Mary Fisher - 17 Apr 2006 22:23 GMT
>> I have recently returned to Australia for what I thought would be 2 weeks
>> to have a lump removed from my breast (assuredly NOT cancer from my
[quoted text clipped - 22 lines]
> I'm so sorry you're going through all this, and on your own for the first
> time, too!  My heart goes out to you.

And mine. I have no experience to match yours but I do know that there is
lots of support available, not least here. Do keep posting, you'll always
have a response and you'll know that it will come from friends.

> I'm sorry to say that I don't know much about the Australian medical
> system,

Mazza was very happy about the treatment she had in Sydney, I met her when
she visited England and she wouldn't consider any comparisons with British
treatment - hers was the best :-)

> This breast cancer experience won't be easy, but it may not be as bad as
> you fear.  Taken one step at a time, it's manageable.  No one *wants* to
[quoted text clipped - 4 lines]
> feedback, etc.  Just come here & post.  Please let us know how things are
> going with you, as the situation progresses.

Yes, please don't go away now you've found the group.

Hugs,

Mary

> Welcome, and please know I'm beaming positive thoughts your way.
>
> Ann T.
> Remove 'dontsendspam' from address to reply by email
Jonnie - 18 Apr 2006 19:42 GMT
Thanks Mary for your words of encouragment.  I am so please I found this
group online.  Sometimes just putting your hand out for help is the hardest
step!

Jonette

>>> I have recently returned to Australia for what I thought would be 2
>>> weeks to have a lump removed from my breast (assuredly NOT cancer from
[quoted text clipped - 53 lines]
>> Ann T.
>> Remove 'dontsendspam' from address to reply by email
Mary Fisher - 18 Apr 2006 20:25 GMT
> Thanks Mary for your words of encouragment.  I am so please I found this
> group online.  Sometimes just putting your hand out for help is the
> hardest step!

Nothing worthwhile is easy.

Hugs,

Mary
Jonnie - 18 Apr 2006 19:42 GMT
Ann
Thanks so much for your lovely words.

I am in awe about this newsgroup thing. I have never visited one before and
happened on this one by chance.  It is great to meet the human side of this
disease and realise there are faces behind all the stats I've been told
about over the last two months.

Take care
Jonette

>> I have recently returned to Australia for what I thought would be 2 weeks
>> to have a lump removed from my breast (assuredly NOT cancer from my
[quoted text clipped - 82 lines]
> Ann T.
> Remove 'dontsendspam' from address to reply by email
alex - 18 Apr 2006 00:37 GMT
> It's just hard facing all these deamons on my own.
>
> Jonnie in Melb, Aust.
Yes, good for you to realize you need support. Are there any breast cancer
support groups near you? They could point you in the direction of an MD who
takes your concerns seriously, Alex
Jonnie - 18 Apr 2006 19:40 GMT
Thanks Alex
there are support groups here - and I guess I have been slack at following
them up.  Someteimes a self-help trip works better for me until I understand
what I'm dealing with - and now its time for the big guns - support! haha

After my son died I found some of these "support" groups unhelpful to say
the least - and am a bit wary of some do-gooders.  I'm sure there are great
people here though and now its time to go find them

Thanks for your support.
Jonette

>> It's just hard facing all these deamons on my own.
>>
>> Jonnie in Melb, Aust.
> Yes, good for you to realize you need support. Are there any breast cancer
> support groups near you? They could point you in the direction of an MD
> who takes your concerns seriously, Alex
Mary Fisher - 18 Apr 2006 20:27 GMT
"Jonnie" <jwilton1@hotmail.com> wrote in message
news:moa1g.9593$vy1.5685@news-

> ...  a bit wary of some do-gooders.

Do gooders???

You won't find any here!

LOL

We tell it like it is, as they say :-)

Mary
allan - 19 Apr 2006 17:00 GMT
I'll add my voice to the choir, Jonnie -

You can do this.  Sometimes you'll lean on us, sometimes we'll lean on
you.

big hugs -

allan
A. P. Thorsen - 19 Apr 2006 20:16 GMT
> Thanks Alex
> there are support groups here - and I guess I have been slack at following
[quoted text clipped - 4 lines]
> the least - and am a bit wary of some do-gooders.  I'm sure there are great
> people here though and now its time to go find them

Worth a try -- if it's not what you need, you don't have to go back!

The first time I went to my local support group, I felt awkward & like I
didn't fit in -- not much in common with others, who mostly had
hubands/children, for example.

But I made myself go back just one more time, found we had more in
common as BC survivors than I thought, and now am still attending 5+
years later.  Partly it's through having made friendships there, partly
an impulse to try to help the newly-diagnosed as others helped me.

It's particularly nice to have somewhere one can joke about the --
believe it or not -- funny parts, without others feeling uncomfortable.
 People who've never had BC often find joking about it very
distressing.  Those in the boat *need* to laugh about the journey
sometimes, I think.

Take care, and keep posting as you have questions or want to vent.

Ann T.
Remove 'dontsendspam' from address to reply by email
Mary Fisher - 20 Apr 2006 10:34 GMT
> It's particularly nice to have somewhere one can joke about the --
> believe it or not -- funny parts, without others feeling uncomfortable.
> People who've never had BC often find joking about it very distressing.
> Those in the boat *need* to laugh about the journey sometimes, I think.

Yes, but I also feel that this group, mostly, treats people with respect
too. Bodies are recognised as functional and important, they're not
diminished by euphemisms. Breasts are breasts, nipples are nipples ... I
can't quite express what I feel but it's important.

Mary
A. P. Thorsen - 21 Apr 2006 15:24 GMT
>>It's particularly nice to have somewhere one can joke about the --
>>believe it or not -- funny parts, without others feeling uncomfortable.
[quoted text clipped - 5 lines]
> diminished by euphemisms. Breasts are breasts, nipples are nipples ... I
> can't quite express what I feel but it's important.

Youbetcha.  When I said funny parts, I was thinking of things like
incidents that happen occasionally with prostheses -- ya just gotta
laugh, sometimes.

For example:  One woman mentioned how her teen-agers roll their eyes
when she asks "are they even?" before going out the door.  She thinks
it's funny, and the rest of the support group gets that.

Personal example:  I had bilateral mastectomies, so when I wear
prostheses, there are two.  I was walking around the store one day when
the back strap of my bra unhooked.  The prostheses themselves are in
pockets, so they weren't going anywhere without the bra. But essentially
my whole superstructure started sliding southward, and there I was
walking briskly toward the restroom, looking *quite* stern because of my
arms crossed firmly at about the lower-bra-boundary region, to hold the
silly things in place.

I found it pretty hilarious -- think that Lucille Ball could've made a
*very* funny scene of it if they did such things in her era -- and my
support-group friends see the humor in these things. But if you mention
it to others they laugh nervously & look for the nearest exit.

Ann T.
Remove 'dontsendspam' from address to reply by even
Mary Fisher - 21 Apr 2006 15:34 GMT
>>>It's particularly nice to have somewhere one can joke about the --
>>>believe it or not -- funny parts, without others feeling uncomfortable.
[quoted text clipped - 9 lines]
> incidents that happen occasionally with prostheses -- ya just gotta laugh,
> sometimes.

Oh yes :-)

> For example:  One woman mentioned how her teen-agers roll their eyes when
> she asks "are they even?" before going out the door.  She thinks it's
[quoted text clipped - 13 lines]
> support-group friends see the humor in these things. But if you mention it
> to others they laugh nervously & look for the nearest exit.

Because they don't understand, and they're even frightened of it... LOL!

Lucille Ball, you're showing your age.

And mine :-)

Mary
Miss China - 18 Apr 2006 23:55 GMT
Hi Jonnie,

I too have just returned to Oz after living in China for eight years,
where my last annual check up in December, they told me I had a
fibroid.  Also had another doc in Oz tell me it was probably a fibroid
and that was two years ago!  i have now been dx with a grade 1 and will
start post op treatment next week.  I too am going it alone in Sydney,
and have had a rough few weeks.

But,  the docs here are fantastic and I have found the service to be
pretty good, and feel pretty happy with the treatment and input that I
have received from my surgeon and the rest of the team.

I highly recommend the Gawler foundation.  They are a group based in
Melbourne and they do retreats and workshops.  try www.gawler.org

Next time I am in Melb would be happy to call on you too..really!

Jenny
 
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