Well I’m off to see Oncologist on Thursday am i silly to ask. The answer to the proposed radiation was delivered to me by by the nurse coordinator that I wouldn’t be having radiation and a letter would be sent to my GP. None arrived at my visit with him this week sothe question is the sclerotic bone lesion in the Sacrum metastasis or is it the result of the coccyx pain which is now easing with the anti inflammatory tablet. and the smaller lesion on the chest bone.AndHow long will i be on tamoxifen do the side effects get less. Though i am getting less joint pain everywhere compared to the anastrol , but the hot sweaty flushes the Headaches and disturbed sleep and always feeling like i want to punch someone out Let alone the sudden feeling of dread that something is wrong. Feeling like I'm carrying lead weight all over. The tinnitus has trebled and the vision gets blurry there you go another load off. Now all i have to do is last till Thursday writing this all down Might help me remember. Then again my brain is mushy half the time I know others are worse off but sometimes it’s lonely and the why bother creeps in

Keep posting cranky_granny and share the load. I’ve noticed how few people can sustain conversation with me about how I’m going- it’s lonely because everyone wants you to say you’re doing great and minimise the impact of a cancer diagnosis and treatment. So you end up doing that, and I have felt very alone in not being able to be simply affirmed by anyone close to me. I feel minimised by other people, who do not know and can’t listen. I’m a bit surprised by this reaction. It’s not asking too much for a close friend to listen.So I wish you well and encourage you to vent here when you need to.

@Nefertari Just today I was asked that raised-eyebrow-and-you're-OK question. These days I just smile and nod and say yes, all looking good, or something like that. If people have a follow up health question I get into the NED conversation. And/or Letrozole. But it's a whole can of worms to open and really, who wants to listen to that?It's a reality that with a few exceptions, the only people who know about the ongoing effects of a breast cancer diagnosis are the people who have it and those very close to them.I've found that genuine empathy has come from the older people I've met along the way. People who've lived long enough to have had serious health issues themselves. It's a life wisdom I suppose.I'm striving for acceptance for the chronic pain and mobility issues I now live with. Part of me still rages in an 'it's not fair' kind of way, mentally lying on my back and drumming my heels into the floor like a toddler! But nothing ever is fair and there's a whole heap of people who aren't here anymore who'd love to be, screaming ankles and all. So I strive for grace, and as you say, when I need to unload I come here! K xox

I’m grateful for the insights shared here, thank you again. Remembering that overwhelmingly I am angry at cancer more than anyone or anything else and most times people are doing the best they can even if at times, it falls somewhat short of expectations that I am still learning. 🙏

It really does stink @cranky_granny when you can't get a difinitive answer on things. I've had back and hip pain since starting Tamoxifen 2.5yrs ago.. Same as you, there was no sign of arthritis or anything in the original staging CT or the many follow up scans I have had. Fast forward to May this year and apparently there are "mild degenerative changes" creeping in according to xray and u/s. The pain continued to get worse so I have had an MRI two weeks ago. So in a relatively short period of time there is now "endplate odema, bilateral sacroiliac odema, thoracolumbar spondylosis (whatever the heck that is) a couple of bulging discs plus a few other bits and pieces of "degenerative changes. Anyhoo, I was reading an article recently and it was saying that hormone therapy and induced menopause can age your body 6-8% faster than normal and exacerbates any minor dodgy bits you already had. Maybe ask for an MRI, you'll probably have to pay for it, but at least they tend to be a lot more specific than the rest of the scans and might provide some more definite answers.Hoping you get it sorted soon lovely.xoxoxo.

Before cancer I assumed people who did have cancer were better supported.Taking my foot off the pedal at work while I do radiation, I’ve been a bit forgotten and left out of things that is not fair and franklyI’m really pissed off with staff. I am the boss, but this is very undermining and people will use my temporary absence to their advantage. I’ll deal with them when I return in January though 😆😂😂But it does let you see people through a different lens, often not in a good way either!

The answer wasn’t clear | Online Network

Afraser
Member
6 years ago
Sorry to hear about the problems you are having @cranky_granny, it’s very aggravating. I confess I get ‘difficult’ when specialists provide my oncologist or GP with information but don’t tell me too! I may be having treatment but I am also an adult (paying adult frequently!). Best wishes and I hope you get answers very soon - and some relief.
cranky_granny
Member
6 years ago
@Afraser thanks.
Hate this not knowing stuff
Beryl_C_
Member
6 years ago
cranky_granny strongly suggest you take a friend or family member to your next appointment - rehearse any questions you may have and write them down; have your 'assistant' take notes. Stress impairs our thinking and memory, ie, our brain is 'mushy' which is hard for others to understand. Keep in touch with others on this forum - its a very safe place to tell it how it is for you. There are no rights or wrongs just you finding your way through the maze of side effects, appointments and treatments and you will never be alone in those awful times of not knowing. I think you are a bit feisty which will carry you through this challenging (aka 'bloody awful') time. Keep in touch!
cranky_granny
Member
6 years ago
Thanks Beryl C
I usually have one of my children with me. My Eldest tries to never miss an appointment
The loneliness is at home As i live Alone.
Sometimes i go to work early and leave late just to keep distracted.
This week might be better as i have one of my older grandkids staying over for the week. It will make the week go quicker
Likes it here says he can get more study done.
Nefertari
Member
6 years ago
@cranky_granny, good luck for Thursday. I will be thinking of you, the waiting sucks.
Sometimes when I asked questions I did not get a straight answer, round and round we went and I felt like I had to push to make them answer! Kind of like it was a secret and I didn't need to know, that was very frustrating. :(
Brenda5
Member
6 years ago
I had eye troubles on Tamoxifen. If you aren't on any blood thinners, I used to take a half of a 100mg Aspro daily. It stopped me getting burst vessels behind my eye.
cranky_granny
Member
6 years ago
Just an update from todays appointment
The Dr was great
this is going to be long
still unclear if its mets or arthritis
in my full body scan back in 2017 when bc treatment finished there was no mention of arthritis anywhere
2 years on armidex ( bones and joints ached the whole time ) and its in so many places but they only mentioned 2 spots i had pain prior to bc The neck and elbow.
In the 3 scans nothing was mentioned about the coccyx in the reports.
So I’m left up in the air.
Put back on targin with panadol for breakthrough
stay on anti inflammatory and as the tamoxifen has less painful side effects
stay on that
go back in 6 weeks to be referred for follow up scans to check on the lesions to see whats happening there
Did have a bitch re the lack of communication and rudeness of the response when i did get an answer.
So i don't have to see that one again.
Not sorry there he's the same one that brushed off the hiccups and reflux after radiation.
oh well might know something in 2 to 3 months
ill just hang in there
arpie
Member
6 years ago
All the best @cranky_granny - the side effects from the arimidex is very similar to arthritis - I had arthritis before starting the meds and it has been exacerbated bigtime. So fingers crossed it is just the meds/arthritis

take care xx
Nefertari
Member
6 years ago
All the best, I really hope that you get some answers soon. xx
kezmusc
Member
6 years ago
It really does stink @cranky_granny when you can't get a difinitive answer on things.

I've had back and hip pain since starting Tamoxifen 2.5yrs ago.. Same as you, there was no sign of arthritis or anything in the original staging CT or the many follow up scans I have had.

Fast forward to May this year and apparently there are "mild degenerative changes" creeping in according to xray and u/s.
The pain continued to get worse so I have had an MRI two weeks ago.
So in a relatively short period of time there is now "endplate odema, bilateral sacroiliac odema, thoracolumbar spondylosis (whatever the heck that is) a couple of bulging discs plus a few other bits and pieces of "degenerative changes.

Anyhoo, I was reading an article recently and it was saying that hormone therapy and induced menopause can age your body 6-8% faster than normal and exacerbates any minor dodgy bits you already had.
Maybe ask for an MRI, you'll probably have to pay for it, but at least they tend to be a lot more specific than the rest of the scans and might provide some more definite answers.

Hoping you get it sorted soon lovely.
xoxoxo

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