Support in and around Forrestfield
Hi,
I hope I'm doing this right!
Diagnosed 4/11/13. Lumpectomy and node removal 13/11/13. - bus and walk to hospital. op was scheduled for avo and I didn't get in till 9pm!!! Was so dehydrated by then.
Any how 4.5cm lump HER2 + 4/21 lymph nodes. 1 node x 2cm, 3 x 1cmGrossly affected, clumped together and in the lymph vasc system. (I read all this while waiting to go into chemo, halfway through chemo I realised why my onc was so serious - you are HIGH RISK Pam!! I swear I was ready to snot him if he said it again.)
So 4 AC chemo and 4 Dox / hercepton, followed by 30 radio blasts and the 9 mnths of hercepton. Which I only have 4 to go!!!
Recovering but not fast enough!!! Thought I would be a lot better by now. The stress of knowing it may come back gets to me fairly often. I've changed so much and I don't know whats wrong with me at the moment, don't know what to do with myself. Anyone else feel like this??
Anyhow live in Forrestfield, work in Belmont PT, weekends in Mandurah. Anyone like to meet for coffee etc occassionaly, would love to. Shortage of friends at moment, life gets busy and you forget to keep up with them.
Pam
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Thankyou Mitch
Would love a "quick coffee catch up" and to meet more "Perthies". Your holiday sounds wonderful I hope you had a great time.
I've finished chemo, thank goodness, I have just the last 4 hercepton doses left till finishing active treatment. You'd think I'd be over the moon, but the rot seems to of set in. Oh well. I go to The Mount hospital, and apart from parking is great, no complaints.
Pam
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Hi Pam, I'm Di. I spent a bit of time on this message board (or whatever they're called these days!) after my diagnosis in July, 14 and was given lots of generous, helpful support from the group. Have had some probs with chemo side effects since and have been a bit quiet.
But that's enough of me! I'm full of admiration for you and what you've successfully coped with over the past year. The challenges you're having now - the fear of recurrence - are a different sort of daunting I guess, and harder to get a grip on and blast your way through. Not sure I'm being clear but I'm thinking that it's one thing to grit your teeth, survive and get through pain, itches, altered bodily functions, etc. and another thing to know how to deal with stuff like fears for what might happen and feeling anxious and worried.
I remember reading somewhere on this site (or some other one - who knows these days?) that coming to the end of treatment is a really vulnerable time for us. So the opposite to your comment that people would think you'd be over the moon is officially recognised - it's definitely not the case that the end of treatment brings automatic relief.
It could be helpful to seek out just a little bit more of a different kind of treatment/support to give you some strategies for dealing with this. Your breast care nurse at the Mount should be able to suggest, and refer you to, a counsellor with experience in oncology issues (including the recognised vulnerabilities that come with the end of physical treatments). Solaris also has free counselling from qualified people with oncology experience http://www.solariscare.org.au/contact/ and RPH has a psych services branch that does the same http://www.rph.wa.gov.au/Our-services/Service-Directory/Breast-Cancer-Clinical-Psychology-Service
Good on you for posting to get some nice social contact happening, too Pam. (I feel so freaking inarticulate - my brain is mush) but I want to say something like mutual benefit and support, your coming through what you have, etc. etc. GAH!!! Also, writing this has helped me a lot thanks Pam - ie made me forget about my woes, etc.
As I'm currently in a close relationship with my toilet (thank you Docetaxel!) and a pair of ice gloves of my own design (cotton gloves on my hands inside two frozen wine sleeves - so proud, but it makes it hard to wipe .... you get the picture) to soothe an allergy rash, I'm not getting out much but I'd love to stay in touch online if you'd like to.Can I repeat that I think you're amazing?
And your example gives me encouragement that there is a light and the end of the tunnel (and it's not a train) and that treatment is survivable. I know that it is (in my rational mind) but some days you gotta wonder.You take care girl. Get lots of friends and social things happening (or just one or two really good ones!) and maybe a bit of expert guidance on negotiating the end-of-treatment/what-does-the -future-hold? situation, be good to yourself, and kind. Hugs, Di xx
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Thank you Di
I am still getting over the picture of the gloves / toilet!!! Oh thats going to keep me going for a while .... Wish I had been on this site before chemo, lots of helpful stuff!!
I am thinking of getting some help, thanks for the info, much easier through bc nurse at Mount than negotiating thru GP'"s. Hadn't thought of that. As you say it seems common to feel like me. But this site gives you courage.
Had my onc visit last thurs, stress stress all good til I mentioned dizziness ongoing (he must of forgotten). Brain scan next day!!! But he rang me that night to say all was normal (redeemed himself) big sigh of relief - may be damage to ears. And tomorrow I've got the first boob squash after diognosis!! (mammo & u/s). Why do docs appts cause so much stress.?? Hopefully after all this I'll be right for next three months hey.
You keep hanging in there too,I hope the rest of the treatment goes smoothly. And as someone said - for the majority of us, it is a CURE.
Pam - big hugs - after you've washed your hands hey ha ha ha
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Yep - BC nurses, worth their weight in gold!
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Hi Pam
I live in Mandurah and happy to meet for coffee. mobile is 0421574033. Having a quality day with Nuclear imaging on Wed 9th Royal Perth but 3 hours to kill between stuff and scan. I used to work in Forrestfield nearly 26yr ago the resturant called lamplite. It was just for pin money as I had 5 children and picked up causual work when hubby home from rigs. On my own now. Take care of you and the tag of reoccurrance is a hard one. You may like to catch up on one or two of my blogs. Don't want to scare you however and we are all different and fingers crossed you do recover and feel much better soon.
Cyber hug
Sarah54
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Remembered the source of the stuff I read about the vulnerabilities of treatment finishing. So much stuff I (we) read is "yeah yeah blah blah blah fuck off" but this is a goodie. I actually found it while doing a kindle book search and was pleasantly surprised to find that it's Australian and pretty current.
See http://onepieceofadvice.com.au/ and https://www.facebook.com/OnePieceOfAdvice
Good luck today Pam!!! Hugs xx
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Thankyou Sarah 54
I go down to Mandurah on weekends, most of them anyway. Working up to retire there. Lovely place. I've been to Lamplite restuarant - its gone now which was a blow, nice place.
Have read a few of your blogs, still can't get over the scan mishap - what good luck really. Yes we all know it can come back, and can spread, nature of the beast. And we all hope that we are part of the % that it doesn't happen too! Still they still seem to be able to do so much these days, we are lucky that it wasn't 10-15 yrs ago from what I've read.
But I'm celebrating today, 1st mammo / us after op.... all clear .... 6mths (first one) till i have to see surgeon again. Yay, Yay
Will ring you one day, (maybe over chrissy hol) would be lovely to meet. Thankyou for the phone number.
Pam
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'Thanks Di
As I messaged all good today. Couldn't see bc nurse today, but am seeing her next treatment day. This latest info looks good too!! Everything helps hey.
Pam
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really good news about the clear mammogram Pam. good luck with the bc nurse next time xx
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Hi Pam, haven't been on here for a bit and was reading thru your blog. It's a tough road but what a great outcome so far. I also go to the Mount and have found them to be very efficient and the breast nurses are wonderful. Some great advice and reference stuff has already been given to you but I just wanted you to know that someone else was sending you well wishes and I hope you relax and enjoy Christmas and a cancer free new year!0
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Hi Pam, haven't been on here for a bit and was reading thru your blog. It's a tough road but what a great outcome so far. I also go to the Mount and have found them to be very efficient and the breast nurses are wonderful. Some great advice and reference stuff has already been given to you but I just wanted you to know that someone else was sending you well wishes and I hope you relax and enjoy Christmas and a cancer free new year!0
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Hi Pam, haven't been on here for a bit and was reading thru your blog. It's a tough road but what a great outcome so far. I also go to the Mount and have found them to be very efficient and the breast nurses are wonderful. Some great advice and reference stuff has already been given to you but I just wanted you to know that someone else was sending you well wishes and I hope you relax and enjoy Christmas and a cancer free new year!0
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Hi All, am new to all this blog stuff as have never "posted" in my life before so here goes. 2014 has been one hell of a year I'll be glad to see the back of. Diagnosed with cancer and a mastectomy and reconstruction followed by chemo has been pretty daunting to say the least but each phase has its own little gremlins. Mine haunting me at the moment is the shape of my reconstruction. I'm very grateful to still be here and living a "normal" life, however I feel like I'm blindfolded at the moment because I don't know what my new "normal" is. I have seen pictures on line from bcna of one person but don't know if that is their "best picture" they show or is it the average look. My shape is far from normal and even tho I know it was never going to look like a normal breast I felt I should be able to get into a regular bra and wear normal summer clothing and look ok from the outside. Am I being naive I don't know as I haven't met anyone in my situation. I do know that breast cancer is like an epidemic now but still have not met anyone in my situation to talk to. Would dearly love to catch up with a group of people for a face to face coffee morning if that's possible before this gets me to a point where where I'm really struggling. Anyway besides all my whinging I plan on having a good Xmas and wish you all the same. Meg0
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Unfortunately I am not well enough to be running the Perth/WA group at the moment girls and I know this is a difficult time for you. All I can suggest is Cancer Council who may have support groups going or breast cancer care wa or there is the breast reconstruction group on here which would be very helpful. I am currently unwell again, this time with bronchial pneumonia again so I am unable to be of support to anyone.
I hope this helps and hope 2015 is a good year for you and sincerely wish I could be of more help to you right now. Luv always Mich xoxo0 -
Hi Mich, so sorry to hear you've been unwell. Love and hugs to you! xoxoxo
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