Not sure why Im on this forum
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Hi
I'm not sure why I'm on this forum after what I just read about @time. As I'm one of the lucky ones I have the most bestest support network both at home and work.
I don't want to take away from someone in need, I've come on this forum looking for something, but what I'm not sure.
So my story goes in May 2018 diagnosed with Early Onset Parkinson disease.
Then MRI found deposits on my brain which now I am under the care of a neurogenetsis at RNS - they only take you if your an obscure case.
But my year ended even worse in Dec 2018 when I found the dreaded lump. In January had a left breast mastectomy with 11 lymph nodes removed, my results were 4 x invasive tumours (Stage 2 IIIA), numerous in situ carcinomas and 5 lymph nodes were positive.
This now involves 6 months of Chemotherapy then 25 rounds of radiation treatment - BLOODY long year!!!!!!
I have completed my first cycle of the really yucky Chemo - that was fun..not. Next week I start cycle 2 of chemo for 12 weeks, whilst I try and go back to work.
Returning to work is for my mental stability, I have realised that at 46 I'm to young to retire and I don't want to - I love my job and my work colleagues, I miss then terribly.
It is funny what you miss when you can't have it.
So this is my story about Cancer (and other health issues)thus far!!
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Hi @December2018 You are here for the same reasons as the rest of us. We all need support and answers which often our medical team are either unable or reluctant to give us. You have had quite a year. One of the other ladies will hop on here with a heap of information. You can ask any question you like on here. Nothing is taboo. Sending a big hug your way. In the meantime enjoy the Friday funnies and the positive thoughts threads. We sometimes have a warped sense of humour.3
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Yep! Doesn't matter what point on the rollercoaster you are or how you are travelling - we're all here to give and receive support as and however it's needed. A cancer diagnosis messes with your head and with your life and not everyone out there, including the bestest of friends, gets it.3
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Talk about a double Whammy! That's hardly fair! I am so Sorry to see you here @December2018 - but you are in the right spot for support & info on any step of your progress. How terrific that you have good family & work support - as @Sister says - sometimes, it is hard for even them to 'understand' all the time - specially after the active treatment (surgery/chemo/rads) is over. Often they just think 'You must be well, now' - without realising the complexity of the whole issue - specially the meds etc that all muck with our heads as much as our body.
All the best with your next round of chemo - keep as busy & active as the treatment allows you to, both at work and at home .... and if any of our ladies can help you with any query - just ask away!
BTW .... I retired at 50 and LOVED every minute of it! I am 66 now (youngest in the family & the first to 'retire'!!)
Take care xx
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@Newbie
Well what a horrid time you've had. Have you been linked with a breast care nurse?
Have you looked at the resources.
Even though you have lots of home support, it's not the same as having the support of others who have walked in your shoes.
Emotions can be up and down but for friends and family "the brave face" is what we show. Here its ok to rant, cry and just be silly at times. Ask anything...no question is silly. Kath x2 -
Thank you to all for your welcoming words and opening my eyes to what this forum can do for me.
Yes sometimes a good rant and foot stomp can help, I will keep this in mind when I can't do this in front of my beautiful family and friends.
P.S. I have been reading a lot of the posts in all the different areas and it is nice to hear from people who actually have been there and done that!!!!
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Isn't it ace @December2018?! I love us! K xox2
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Dear @December2018, ditto to all the greetings and info from network members above.
and keep in touch. jennyss in Western NSW0 -
I am Back, had two appointments today, one chemo dr, one radio dr, got to hospital at 8.30am, saw the first at about 9.30, this is chemo dr, after weight taken, a few questions, then a hands on exam which I kinda yelped, she asked me if i had beeen drinking, she had my last blood work results, said it wasn,t her area and I needed to make an app with my gp, so I leave and go to waiting room for dr #2, boob dr radiation, and I wait, two hours later I get a male, the hospital registrar radioligy, who asked me about my arm, just one, scars on both, I asked him to read my file 4 cancers all at once all unrelated, he tells me brain tumor can be fixed, later I see radiation dr, she is on phone to him, saying no we do nothing she is fine, how confusing, I have been on wdge for a week thinking I would have chemo, I was left with get off lyrica, and get use to not sleeping and the pain0
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I had the lumpectomy march 20 saw the surgeons side kick, small cancer clear margin I was told. I have to see the surgeon again evidently , so im worried sick , why ?? was there a clear margin ?? then next week I see the oncologist. my boob has been sore along the cut line since it was done. my gp says its nerve damage and it takes time. I worry that waiting this long for treatment the small invasive cancer may have invaded. my depression is through the floor I cant stand it . 3 types of arthritis , cancer , dental issues that I cant get seen to till at least july ( that is when ive been waiting long enough for the govt ). and what happens to daughter if anything happens to me ?/ I tried talking to beyond blue last night and they cut me off ( I didn't know there was a time limit for such things. they said I could reconnect if I wanted but I didn't. im at the end of my tether0
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You'll keep seeing the surgeon as he/she checks your recovery and to co-ordinate treatment. The sentinel node removal can cause a lot of residual pain for awhile - I was convinced that the area was rubbed raw when it looked fine. That will settle down although you may not get full feeling back. The other spot that doesn't seem to recover for me is where one of the drains sat along a rib bone - it's still tender 16 months later. Try not to overthink things although I know it can be hard. Your body has gone through some trauma and it's going to take some time to recover.1
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If you have a breast care nurse @relign it might be a good idea to talk to them and ask if they can unpack the reports and explain what is going on. They often have more time to read everything (which the doctors often don't seem to do) and they are used to dealing with complex situations.2
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