New To BCNA
Hello Everyone,
My name is Gavin and my wife (Karen) was recently advised
she had BC (March 9th), I’ve been a rock for her and our two kids at
home (we’re in our 50’s) and have advised my girls living at home that I’m
there for their mums journey and will be her biggest support person, I’ve done
a bit of reading over the last could of weeks through these boards and reminded
our kids to be strong and positive around mum but also mentioned that it will
get a bit tougher for her as the months roll on but if they needed to share
worries or concerns, I would be there for them and would love the chance to share
mine with them if and when needing too, however advised them we would need to
do this away from mum so we can ensure she remains strong and has positivity
around her.
We have our first appointment with a care team to learn more
about things this week and I was wondering what I may expect with regards to her
treatment (yet to know) causing tiredness etc, I was hoping to take her on a
short cruise for 3-5 days to give her some enjoyment and relaxing time however
I see most of the good ones are limited / full meaning the next available time could
be Jan 2020. I will ask the doctors but was hoping to surprise my wife but was
wondering if I should look at something else prior to commencing treatment or
wait until after treatment even though I’m unsure of recovery timing.
I know each and everyone’s plan is different and my question
may not be readily available for an answer, I’m just looking at things she’s
been wanting to do but has never really had the time to so.
We’ve already been through a lot of health issues together
and I’m just wanting to take some of that worry I see away and for me to try and
pre-plan a bit.
Comments
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Hi Gavin, and welcome. Congratulations on finding your way here. I hope Karen does, too.
In terms of what to do and when, a lot will depend on your team's treatment recommendation, and there is a large number of variables depending on the subtype and extent of the tumour.
In the meantime, try researching Otis retreats in your area, to see what might be available. These a free stays offered to those going through Breast cancer treatment, and there is something available in all states. If nothing else, it could give you an idea of something to do.
Becareful to listen to what Karen wants & needs. She may just want to keep busy for the moment until you know more about what might happen, or she might want to retreat from everything, and everyone. She may fall anywhere in between.
How old are your kids? It's probably worth mentioning here that I don't have any, so definitely no expert.
I would say that honesty in all your emotions is important. One thing I will also say is that endless positivity from those around you can be wearing,, and it led me to hide my emotions from family and friends. Sometimes you just have a bad day, for no discernible reason
I'm sure I could go on, but also sure that there will be plenty of others along to offer support2 -
Welcome to the group, @GavinCh - ask away any questions that may help you and Karen thru this. Your support for Karen will be a real asset in helping her thru this - as well as the kids' support.
Once you've seen the team & had the tests & biopsy etc you'll have a clearer idea of a Plan of action. There are lots of 'waits' as you wait to see the team, wait for the appointments, wait for the results, which can do both your head in a bit as well as Karen's?
Yep, keeping busy is really good (in my books - it worked for me!) I have a few hobbies that I buried myself in - and they were my saviour.
Re the holiday - I saved mine til after I'd finished my Rads (this time last year.) I went to Norfolk Island with some Ukulele buddies!
Just be mindful of how Karen is coping. It is both mentally and physically demanding. There will be good days, there will be tough days - but both you and Karen can do this xx
Where abouts are you (Town/City?) Others may have info on services that are near you xx
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I understand you wanting to surprise her @GavinCh but as @lrb_03 says, it's best to listen to what she wants. For me, at the beginning, I just wanted to hibernate. I was happy for people to know what was going on, I just didn't want to have to talk about it and I absolutely could not think of anything else. After surgery, (2 surgeries, 2 weeks apart) there was pain from the node removal and there was also the issue of keeping the site dry and clean. Then I had the consult for chemo a couple of weeks after that, and so on. I guess what I'm saying is that until she has a plan, you won't know what is likely to happen, and that plan could change depending on the path report. But ask your wife what she wants and maybe just let her know that you really wanted to surprise her. Maybe the cruise could be kept as a treat for getting through the crap (give a decent amount of time for recovery).2
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@GavinCh
Your love and care is shining through however this is about her and how she copes and or reacts to treatment .
There are good things available for free for us that you could look at and show her.
https://lgfb.org.au
Look Good Feel Better
Especially in the middle of treatment
And the gorgeous people at Otis a free holiday which helps as the treatment takes it toll
https://www.otisfoundation.org.au/page/1/about
A cruise maybe fun later
Best wishes1 -
Thank you
so much for your replies, all noted with thanks.Karen is
only just talking about things as she too whilst in shock does generally keep
to herself even before this. To update, Karen has had the ultra sound, which
looked ok but needed more investigation and as such a biopsy was done which has
lead to the results received March 9th (Her birthday). We’re based
in Western Australia and I feel Karen didn’t want to join BCNA just yet but I
think this might be to slow down the reality of things.I do ask
how she is and what she might need, do the small things around the house and do
stop and listen and try to be someone she can off load on.Are their
locations or forums both Karen and I can attend to start with in WA? I see one
com’n up in Bunbury this month but it reads as more for the locals (small town
couples of hours away.
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Hi @GavinCh
After I was diagnosed last month my husband and I went to Sydney for two nights between appointments. It was lovely to feel normal and be a tourist and forget about cancer for two days. If you can’t do the cruise I highly recommend something similar. Ask your breast nurse when you meet them about timing of appointments, there is usually time to do something like this 3 -
@GavinCh - we have some WA members (you an add your town or state to your profile - just click on the 'settings wheel' on the top right hand corner & click on 'edit profile'.
A couple of WA ladies who may have info to help you ..... @Annie C @JJ70
Are you a couple of hours from Bunbury? The girls will be able to help you with info re travel expenses etc. ....
All the best xx
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Your wife will come to us in good time if that's what she wants. Many of us stalked the discussions in silence before getting up the nerve to join in. It often comes with the need to ask practical questions about tests or treatments.1
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Thanks for tagging me in @arpie .
Hi @GavinCh. Jo here - I am based in Perth and coming up to 18 months post diagnosis. I have a great friend @Shellbelle_75 in Busselton and another, Marianne - located in Bunbury, but I don't think she is on BCNA. Let me know if you want contacts as this goes on. Both women would be awesome supports and would love to help.
I see there is a support lunch in Bunbury March 23. Check out the thread.
Unfortunately there are no longer any Otis Foundation properties in WA. The only one we had in Denmark was removed from use recently. They are currently looking for new properties.
Have you made contact with Breast Cancer Care WA - this organisation is the most awesome support - counselling, financial support, breast care nurses who know ALL about treatment and are often more 'grass roots' with helpful hints and remedies than doctors and oncologists are.
https://www.breastcancer.org.au/
(08) 9324 3703
Phone and talk with them. They will allocate Karen a Breast Care Nurse adn even a phone connection is helpful, if they can't see you in person. My breast care nurse from BCCWA was a godsend and I don't know how I would have got through the early stags without her. We are lucky to have this organisation in WA - it is unique.
Please ask anything, as things unfold. We are all here to help.
So good to have a hubby here - 10/10 Gav!4 -
Hi @GavinCh welcome I am sorry you and Karen have to be here. I am based in Busselton and would be very happy to offer any support I could to you both as a fellow WA member.I am 43 and was diagnosed in August 18 I have just finished chemotherapy. I am totally aware to begin with things can be very overwhelming,please don’t hesitate to tag me and I am happy to chat online and help where ever I can.
@JJ70 is an amazing soul who helped me and reached out to me at my time of initial diagnosis.
There is lots of support available and many many amazing people in this community who while going threw their own experiences will help others.6 -
Gavin - do you know of the Cancer Council in Perth (Cottesloe)? You can phone their counsellors with any questions or concerns. I have found them to be both friendly and informative, they know how to listen. I have also found this discussion list to be a 'life saver' at times and this community has some very well informed contributors, for example, do you go Public or Private? What about work? And all the information you could hope for with regard to treatments, medications, dealing with the 'experts'. You will also learn that priorities change, some things just have to be let go, being diagnosed is sufficient to create stress and fatigue for all family members.
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Hi Gavin
Welcome. I was diagnosed 2 days before Christmas. I am half way through chemo and face a lumpectomy or mastectomy in July. Iwas told about this site and kept away initially. I now follow discussions and have only just put my name down to have lunch with some beautiful girls in April (who I have never met) and a support lunch in May. Heaps of support and love here whenever you and Karen need it.4 -
There will be times when none of you can do anything right for her and that's ok. It's just part and parcel of what is a crappy disease to get.
Believe it or not when we heard sexual things might be pushed to the sidelines we made the most of the time we had in the short time before treatment. We even went to a sex aids shop (first time in our entire lives) and had an absolute ball, laughing our heads off when we got home and compared notes. I remember that day with fondness as it was totally out of character for us but it was fun!8 -
Hi @GavinCh Sorry you have to be on this site but you will find a bunch of people who just get it and as everyone has said if you have any questions just fire away. When I was diagnosed last April I just wanted to hibernate to deal with my emotions. It is the worst time knowing you have BC but not sure what type, what stage and the waiting game just sucks. Your mind goes into overdrive thinking of all the worst case scenarios.
I agree with the others and save a lovely cruise until once all treatment has finished. It will be a godsend but in the mean time just go with how your wife is feeling on the day. It truly is a roller coaster. For me there was days I just wanted to hide under the doona with a good book or days I got out and did some exercise while I was waiting.
Generally once a plan is formulated by the BC team it takes a little pressure off in regards to being able to concentrate on a set plan moving forward. I like "Sister" was a bit of a stalker until I eventually posted but have found that whatever question or concern I had there is always some one who has travelled the same road before me or with me. If you have looked at some of the threads here you will see a bit of black humour helps us along the way.
Hope all goes well and just be prepared that plans can change as more results start to come through.
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