Forum Discussion
Thank you and Hello
I’ve been a member of this unique club since diagnosis in Jan 2019 and as some have written, chose not to be an immediate contributor. I feel moved today to say hello and say a humble thank you to those contributors who have provided some of the most thoughtful, uplifting and honest advice that to members in such angst and crying out for additional support.
My journey todate ...
Mammogram taken in November and would you believe I was rung on Dec 17 to say follow up required to which I said yes sure I’ll come in tomorrow and have a further mammogram. The response floored me - no we are closed tomorrow for Christmas but I’ll pop you in on Jan 10. So I gave my happy Christmas back ... what was the point of telling me prior to Christmas ...
Biopsy confirmed ILC 3cms so Lumpectomy surgery and SNL Biopsy 31 Jan with unclear margins and clear lymph nodes. Further lumpectomy and armpit drain last week with reported clear margins. Unfortunately I am producing fluid at a rate of knots so 3 drainings later I now have an infection and purple armpit. My surgeon and GP are just lovely and so responsive - even ticking the bulk bill box when I’m going private!.. But it’s wait wait wait as we all experience that is the absolute worst ! and having spent most of my life a woman in control of most things - WTF !!
So, I’ve done a real head spin on my diet since diagnosis, not that it was bad or that I wasn’t into exercise. Was able to get to the gym 2 days after my first lumoectomy without issue. But I’ve rehashed what I can and can’t eat so many times having made the mistake of referring to DR Google. No red meat, no almonds, yes almonds, no soy, yes soy, no tomatoes, only organic, no dairy, no sugar, no alcohol, no fuji, apples, only walnuts in shells... the list goes on and on contradicting on... in the meantime I’ve almost destroyed the only real stable aspect in my life - my wonderful supportive partner of 18 years.
I guess we all process in different ways and mine has been to desperately try and control my physical state. Just letting go is 3 simple yet very condescendingly complex words.... I am trying to go with 1 step at a time and at times so scary ...
I marvel at those of you juggling work, juggling children responsibilities or having no immediate support around you and yet you are getting there...
I see my Oncologist for the first time bright and early Monday morning and I hope for minimally invasive treatment ....
1 step at a time and thank you again ... and yes the club sucks but hey whilst we have joined how lucky are we to have found this space to support one another 💕
My journey todate ...
Mammogram taken in November and would you believe I was rung on Dec 17 to say follow up required to which I said yes sure I’ll come in tomorrow and have a further mammogram. The response floored me - no we are closed tomorrow for Christmas but I’ll pop you in on Jan 10. So I gave my happy Christmas back ... what was the point of telling me prior to Christmas ...
Biopsy confirmed ILC 3cms so Lumpectomy surgery and SNL Biopsy 31 Jan with unclear margins and clear lymph nodes. Further lumpectomy and armpit drain last week with reported clear margins. Unfortunately I am producing fluid at a rate of knots so 3 drainings later I now have an infection and purple armpit. My surgeon and GP are just lovely and so responsive - even ticking the bulk bill box when I’m going private!.. But it’s wait wait wait as we all experience that is the absolute worst ! and having spent most of my life a woman in control of most things - WTF !!
So, I’ve done a real head spin on my diet since diagnosis, not that it was bad or that I wasn’t into exercise. Was able to get to the gym 2 days after my first lumoectomy without issue. But I’ve rehashed what I can and can’t eat so many times having made the mistake of referring to DR Google. No red meat, no almonds, yes almonds, no soy, yes soy, no tomatoes, only organic, no dairy, no sugar, no alcohol, no fuji, apples, only walnuts in shells... the list goes on and on contradicting on... in the meantime I’ve almost destroyed the only real stable aspect in my life - my wonderful supportive partner of 18 years.
I guess we all process in different ways and mine has been to desperately try and control my physical state. Just letting go is 3 simple yet very condescendingly complex words.... I am trying to go with 1 step at a time and at times so scary ...
I marvel at those of you juggling work, juggling children responsibilities or having no immediate support around you and yet you are getting there...
I see my Oncologist for the first time bright and early Monday morning and I hope for minimally invasive treatment ....
1 step at a time and thank you again ... and yes the club sucks but hey whilst we have joined how lucky are we to have found this space to support one another 💕
35 Replies
- And just when I had a plan and thought I was back in control !
Arggggh and a few other words....
A larger extended team who meet weekly reviewed my case yesterday and my Oncologist has rung me this morning to pass on the news that the consensus was to undergo chemo. Yes, it’s still my decision but I feel gutted .... just when I had a plan of radiotherapy and we were taking steps forward. I’ve decided to go with the pathology micro analysis test which will then measure the virulence. Only problem is it takes up to 10 days and it’s $2900 payable upfront . At least then I’ll the absolute makeup of this BC pest and I need a sledge hammer or fly swatter ....
so bottom line is never ever think you have a plan and it’s 1 day at a time and there are likely t9 be curves along the way...😢 - @scoops absolutely. Its also good to get a good skin routine going now as any light massage in the area is good for recovery. I see a physio and she is always telling me to carry on with moisturising and light massage to make the blood flow and help with recovery of the cells . Moogoo all the way xx
- Thanks for sharing @Nicksta and here’s hoping and sending positive energy to you and that your scans are all clear. I’ve started the lathering on of moogoo cream and I agree with you - having that empowerment to know that you are giving your body the best that you can give it in all ways at such an out of control time hopefully will be so beneficial...
- Glad to read your post from today @scoops , it really sucks to have to go through any of this but you are ticking boxes and moving along now.
It's all the waiting and going backwards and forwards , so a plan is good for now.
Our mind is a powerful thing so keep your mind clear, one day at a time. I am certainly not an expert but i started this journey last year in May. i haven't been on this page for a while as I have been in a good place . But the last few weeks I have had to have scans and things so back on that roller coaster. It helps to be on this page as we are all connected through this.
You could prepare your skin for the rads now ( I used moogoo soap and the udder cream even before radiation so i felt like I was doing the best I could, ( not sure if it helped but it was something positive I felt I could do to help my body, which helped my mind. I finished radiation end August and have been on Tamoxifen. All I can suggest is listen to your body write things down ( just in case you need to look back on some things,and try not to read too much into other peoples side affects for now, keep that mind positive.
My surgeon was not really big on getting base lines or blood levels but my oncologist is and I am so glad they did bloods in the beginning as a few things have come up and at least we have something to base things on and they are ale to get some answers faster than if we didn't have the base lines.
I wish you the best for your radiation, you can do this.
Thanks for sharing your story ( its another step , you are taking control of what you can and you are able to share it with us , its a massive step )
Wishing you all the best xx - It's amazing how a plan can get you out of that godawful daze.
- So Glad you have your plan sorted @Scoops ..... and hope you have minimal side effects. I was really lucky & didn't really have many side effects at all other than the usual - warm breast, itchy, some redness & a small bit of peeling. Lathering the lotions on is the way to go.
Same with the medications - some are lucky enough not to get any/much side effects - fingers crossed you are one of them xx - I'm glad you're feeling a bit better @Scoops. K xox
- Hi all,
just wanted to let you know the outcome of the Oncology meetings.
No chemo which I’m relieved about as Im not sure I could have made the decision to proceed with that treatment.
So 16 Rad sessions and not to the armpit then Anastrozole for 5 years and tamoxifen for another 5 ...I asked about the protective film as mentioned on this forum and my Radio Oncologist explained the pluses and minuses very clearly so again I feel very comfortable with the team I have entering into this next phase.
With the lack of control I have felt since starting this journey - now that I have a plan and can see the rad sessions booked in ... my control over this experience feels a little more balanced shall we say ....
my concerns now turn to the medication and the many side effects mentioned . I understand no guarantee that all will have the same side effects but I’d prefer to be fore warned....
thnaks all once again for your well wishes and sharing info xx - SO true @Scoops.
- Yes interesting @primek re the phytoestrogens ... I think the only major warning that should apply is to limit one’s intake of Dr Google ... you go looking and you are bound to find both for and against of any topic you are searching and with such convincing articles too !!
