New To BCNA
Comments
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Hi @GavinCh,
Welcome and good on you for finding this place. Already some fantastic advice as usual. This forum is a godsend and for me has provided more insight and information than most of the doctors. They've got the technical stuff under control but some are quite lacking (there are exceptions) about the emotional side of things and how it actually feels to have been told you have cancer.
The start of this thing just plain out sux. Waiting, waiting, waiting for a game plan. Ugh!
You know your wife better than anyone so you're probably in tune with how she's going to feel about support groups etc. Some people find them very helpful and some do better on their own. This forum is support group enough for some of us.
Personally, I wanted as much normality as possible. Kept myself as distracted and busy as I could. There were hide in the bedroom days and nobody could help with them.
I opted not to take anyone to appointments with me, except the breast care nurse, that way I didn't have to deal with anyone else's emotions but my own. I took my mother to the first surgical appointment and she broke down crying so that was that.
My husband came with me to my first chemo treatment and looked upset and sorry for me so I sent him home.
I found this much easier, that way I could come home from appointments and explain as much or as little as I wanted to. Kind of gave me a bit of control of the situation.
The best thing to do right now is just look after the kids and the house so she can deal with her own headspace and be the shoulder to cry on when she needs to. Probably a lot
It all just depends on the person. Once there is a plan things will move along and she'll feel a bit more in control of the situation. Then she can let you know what she wants.
All the best to both of you.
xoxoxoxo5 -
Morning All,
Again thank you for your thoughts and comments, it is great
to know we have somewhere we can talk about things and with people who Get itKaren had her first appointment last Wednesday (20/03/2019) which provided
some great news and some not so great, I’ve started a secrete page on facebook
for Karen which was suggested by another person going through BC, Karen and I
thought it was a good idea and saved either one of us having to make a number
of phone calls to keep other up to date on things and saves us having to talk
about the same things to different people over and over again. Our appointment
went for around 6 hours below was how the day went and whilst Karen had built
herself up for the appointment and not knowing how it would play out we were let
down a tad as we need to go back again next week as another biopsy was needed for
a second concern we only found out about so we had no plan or dates etc. We
will head back in with a bit more knowledge once the results comes back (Should
be Mon) and have a better idea on things. Below was the description of our day
in summary but I would like to highlight again how wonderful everyone has been,
Karen received a phone call yesterday from Breast Care WA and will have someone
come by even just to talk.I'm lucky to have a great company I work for and I have around 80 sick days available (plus long service if needed) so I'll be by Karen side the whole way.
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Today
20/3/2019 Karen had her first appointment at Fiona Stanley since finding out
she had “BC” which was March 9th, 2017 (yea on her Birthday) to review what her
treatment plan might be. Today however Karen found out she had another lump
which was around 15mm is size as such Karen needed to have a Mammogram,
followed by another Ultrasound and straight after, another Biopsy this morning
for the second lump located at 6 o’clock.The good news is that the original
lump located around 1 o’clock on the breast was around 5mm in size and is a
grade 1 out of 3 with 3 being the more aggressive. Grade 1 has been described
as a slow growing lazy sloth cancer cell.Until we know more about the
second lump the plan would see Karen having surgery and with the current 5mm
lump we would be able to have this removed without needing the whole breast
removed. If the second lump is a cancer cell and of the same grade as the
smaller one they could both be removed without having the whole breast
removed.However worse case would see need
to have the whole breast removed but only if it’s a must.Karen will be contacted once the
results are avail (Fri, Mon, Tue) to come back in to review the results and to
then look at options for treatment.Post-surgery Karen will need to
visit Fiona Stanley five days a week for five weeks for radiation treatment
followed by a tablet medication for five years which does however provides
protection between seven and ten years.If however Karen does require
stronger treatment because of the results from the second lump we will cross
that road then.One day at a time.
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Thanks for the update. Thinking of you both as you wait again1
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It's good to have a clearer idea of what's what, it makes dealing with the whole sudden business a bit easier. Great too that you are so supportive.
Everyone needs to find their own way through this one though, and the paths are many and various. Like @kezmusc, I wanted things to be as normal as possible, at least at first. I worked through chemo (67) full time and while I can't say I enjoyed chemo, it wasn't quite the nightmare I had imagined. I too went to sessions by myself and valued the peace and quiet - and the occasional unplanned conversations with someone else having treatment. I made some changes about what I wanted in my life (a new job, resumed singing) a full 12 months after diagnosis and I feel poised to make another soon (6 years on). Cancer's a bit like having a baby - you are still exactly the same person except you are not! You are less likely to make assumptions about time and how you spend it. You may want to be more active (travel, exercise) or concentrate on your inner self. The first few months are a blur of treatment, new language and experiences. Even if, like me, you come through it well and positive, you do tend to think about things just a little differently. Some space and time to reflect and embrace those changes (they can be good changes) are important as well. Best wishes to you both.4 -
Thanks all. We received the expected call yesterday however are unable to get in any earlier than April 3rd meaning Karen will worry for a bit longer. I'll be looking to see if she can keep busy and take each day as it comes.0
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The delay in appointments does mean you have a little more time to come to terms with things and cope. There was some sort of research done in which one surgeon was doing operations pretty much the next day with not much waiting times at all. They found those that were processed faster had more anxiety and depression later on down the track as they hadn't had time to come to terms with breast cancer. Best wishes for next weeks appointment.1
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Hi Everyone,
Sorry I've not been on here for a short period, the days seem to fly by these days, below is the general information I've posted for my wife's close friends and our family keeping them in the loop without having to ring every one individually.
March 28th
Karen received a phone call from her doctor March 28th letting her know the
results of the second lump because her doctor knows how anxious Karen is at
this time and wanted to discuss both the biopsy results as well as the
mammogram outcome.Second Biopsy Results.
Some fantastic news received, this being that the second lump is not cancer cells and it's just normal breast tissue clear of cancer.Mammogram Results
Karen’s doctor advised this test highlighted some small white areas which they
need to investigate to determine if these are cancer cells or not, this will
require another biopsy however unlike the prior ones under an ultrasound
procedure, this will be whilst having another mammogram, this process can be
more painful however must be done. The doctor is arranging for this to be
completed tomorrow, more so to ensure she has all the information and data at
her finger tips before Karen’s appointment next week on Wed.So some great news and some not so great,
we’re just taking each days it comes, and Karen’s trying to not get ahead of
herself, something so easy for me to type and say as I’m not the one going
through the procedures. We just need all your thoughts and prays again.--------------------------------------------------------------------------------
March 29th
After four and a half hours at the hospital
we’re now home. The procedure has been done now. Long process for Karen and not
very pleasant at all, lots of pain being clamp’d in a rig (I would call it) however
the needle and local as well as the staff were great. Once again it will be a
waiting game for these results. We expect to know more after next week’s
appointment. We should finally know what the recommended treatment plan would
be.
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Today a small clip was inserted in Karen’s breast in
preparation for surgery. There will be surgery but what type will be known next
appointment.
I must say, the staff in this section of hospital are
fantastic, very caring and helpful. Answering all our question and describing
the team here as an extended family. Karen is starting to see the benefit of
knowing and learning more and as I mentioned to her, will give her the information
to assist in her making informed decisions.
Again thank you all for your support and for giving me a place I can vent, talk or even just read, I know a number of ladies are or have gone through such and ordeal and whilst all new to us I do spare a thought to all going through this situation.3 -
Surgery is booked for Monday.4
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It will be good to have it over and done with Gavin. I hope it all goes well. K xox1
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All the best to both of you, @GavinCh - most of us find that after the actual surgery, a HUGE weight is lifted off our shoulders - and the recuperation isn't as bad as our minds have built it up! Once the Pathology results are back, you'll both have a clear idea of the followup treatment.
Yep, keeping busy in the mean time is the way to go. Maybe see if you/Karen can cook up a few meals for the freezer as she may have limited arm movement for a little while afterwards.
Re preparing for hospital - a few things that helped me get thru it was my iPad with charger (for messages & amusement), my eye mask (as from airlines) and ear plugs were a god send (hospitals are noisy places with lights on all the time!) A few magazines (short stories) rather than books. Maybe some treats (biscuits/lollies.) A warm top (hospitals can be cold places too.) A front opening nightie (for ease of putting on/off and also for Surgeon's inspection the next day.) Don't forget to take any 'regular medications' with you that Karen may be on as well. Let the nursing staff know what she needs to take.
Take care xx1 -
Hope all goes well @GavinCh and ditto to what Arpie has said re previous post for preparing for hospital I also included a packet of baby wipes which I found handy and a small bottle of something to drink ( instead of water all the time ). Is Karen having the lumpectomy and any sentinel nodes removed. ( in which case they will insert a blue dye to map out the nodes ) For me I found this procedure to be quite painful although some don't have a problem. The pain from the op is really okay and manageable and not as bad as what we have built up in our minds and the medications they supply work wonders. Just have a spare pillow in the car for support on the way home as Karen will feel every bump. Normally on the day the breast care nurses provide a special Zonta pillow which goes under the arm and is great for support and comfort even when recovering in hospital as well as when you get home. Thoughts are with you both. xo3
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I have booked a
couple of weeks leave to help around the house, I’m not going to stop Karen doing
what she need to ensure movement is made but to be their even if just to chat.
Really appreciate the suggestions and will assist in the preps for hospital.In short Karen was
advised of three options and the one selected is a lumpectomy and any a
couple of nodes removed, Karen had once of the Breast Care WA team come
visit earlier in the week and was a huge help with Karen and her acceptance / understanding
of the road ahead, however it was a good chance to just sit and chat about
anything. Whilst this is such a horrid situation for Karen and you all, the
support, services and care we have seen and experienced is so wonderful and a
huge credit to everyone, including those helping me vent on these boards.At this point Karen will only be staying overnight however
she did suffer a DVT a few years ago from a prior surgery (Foot) and the casts she
went through would have been the main factor but in saying this everyone knows
so might cause a second night stay for precautions.iPad with charger Mine is old so great reason to replace it
Ear Plugs Can
provide as we have heaps at work (not sure Karen will use them tho lol)
A few magazines Great
Idea, I’ll get a couple of these for her.
Treats (biscuits/lollies) Yep a must, Karen love a bit of Chocolate now
and again
A Worm Open Top Yes,
I read this in one of her booksDon't forget to take any 'regular medications'
with you that Karen may be on as well. Let the nursing staff know what
she needs to take.Thanks @Arpie I hadn’t even thought about that xx
kitkatb, thank you
Cheers
Gavin1 -
How terrific that chatting with the WA Breast Care team has relieved Karen of some of her worries and anxiety.
That is terrific you are able to take time off to be with Karen too.
Make sure (as @kitkatb says) that Karen has a small supportive pillow, hopefully given the day she arrives at the hospital - I wasn't given one, but had one from previous shoulder surgery that worked just as well. I found that once the anaesthetic had worn off, my arm didn't like being 'by my side on the bed' - and the pillow under the arm lifts it up to mid chest height, which was perfect. Eventually, when I was able to roll onto my side, I put the pillow on the other side to control the 'angle'. And it does come in very handy for the trip home, re bumps, which can be really painful in the first week. I ended up just 'holding my boob' every time I went over known bumps in the car to stop the 'bounce', driving around town .... and I always remembered where 'new ones were' that prior to my surgery, I had never noticed. That discomfort lasted a few weeks.
I also had a lumpectomy/sentinel node/breast conserving surgery with immediate 'tidying up' and now 15 months later, my scarring is negligible. I was given some basic pain care tabs & encourage her to take them for at least a week after the surgery, to minimise pain. If she is in pain, she won't sleep well & it can set back recuperation.
I found these ear plugs to be the best and still use them ..... just squish half of it down to the thickness of a pencil - and shove them in as far as you can - and they take the shape of your internal ear & are brilliant! Easy to fit & you don't even know you are wearing them - no discomfort.
Re the DVT - I was fitted with a pair of 'blow up leg pressure' thingies that I assume were to prevent DVT? Maybe advise the Medical Clerk/Nurses/Matron specifically about it when she is admitted.
Take care xx
(The meds need to be in the original boxes showing her name etc .... they don't like loose tablets just for the night!)1 -
Gavin and Karen, make sure you write both your name and patient ID number on everything you take into the hospital. I also made a list of all those items. Hospital b'fast is mainly sugar so you may consider packing a few health bars. The little pillow is essential for car travel and sleep. I kept my 'pressure' stockings for future travel. Hoping all goes well!
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