What's new with Kath
Warning...long post ahead with much whinging
I've been struggling the past 6 months.
I have developed bilateral bursitis of both shoulders...for no apparent reason.
Initially it was tight with restricted movement and occasional pain in certain positions. No problem...a steroid injection will fix it.
But it didn't.
Within a month I had less movement and pain so bad I couldn't sleep as I couldn't lie on my shoulders. I would wake up every 20 minutes in agony.
I felt unwell. Chronically fatigued and struggling to do my job. If I didn't go to the pool and do some water arm exercises I could barely move at all.
Terrified of metasteses I discussed this with my GP. Blood tests done showed only a raised ESR. (Inflammation)
He couldn't order anything under medicare but another ultrasound which again showed bursisits. I wanted a MRI.
Recommended I see my oncologist. Too busy they said in February.
Contacted the breast surgeon...nope GP can deal with this. Breast care nurse here had no pull. Breast care nurse in Adelaide suggested I try no letrozole and see. My head goes...too scared to try this in case it is metasteses and it grows quicker.
So by March I'm seeing a rheumatologist. He listened. He was worried it is an inflammatory response. He sends me for a bone scan and an MRI (300k away) to exclude anything more sinister and was angry it hadn't been done already.
His verdict is possible polymyalgia rheumatica...which means inflammation of several joints...no known reason.
So meanwhile I had 3 cancelled oncology appointments despite talking to cancer care coordinator about the issues and my last visit to breast surgeon (in Setember) was just suture removal not a bloody review...and they'd cancelled my January appointment as I'd seen him. Uuugh.
So I get a call 2 weeks ago...we've made you a face to face appointment with the oncologist. The time was changed 3 times that week.
So I see him last Monday.
He listened. I cried. I told about my ongoing fatigue. My whole body restricted movement which I was coping with up until the bloody shoulders. My general feeling of being not right and my genuine fear I had metasteses but...bone scan was ok (thank goodness)
So he wanted me on painkillers. ..which concerned me as panadol makes me tired. Quality of life he says. Then drops the bombshell...since you'll be on AI another 7 years..what?..all along they've kept saying 5 as no nodes...but now saying emerging results still recommend I do 10. My coping...was knowing I've only had 2 more years...but bloody 7. So More tears.
I then explained how much restrictions /pain /stiffness I had. No...I didn't whinge much before (always said its doable and was better than initially) but with the shoulder issue it's now just too much. His physical exam was much more intense than before including liver and abdo area...I'm sure I haven't had this before.
Sooo...I'm on a letrozole break to figure out whats drug related, whats age related or just bursisits. 3 days free and I can stand up from bed and walk normally. I can step down a step. My hands can rotate. Bloody marvellous.
The plan now is too see what else improves and try a different AI.
So even prior the break...I am sleeping better.
My shoulder pain is less after resting since March any upper body exercise other than controlled stuff set by physio. I'm not feeling quite as fatigued. I really wonder if I do have another bloody autoimmune thing happening.
Anyways...life goes on. Kath x
I've been struggling the past 6 months.
I have developed bilateral bursitis of both shoulders...for no apparent reason.
Initially it was tight with restricted movement and occasional pain in certain positions. No problem...a steroid injection will fix it.
But it didn't.
Within a month I had less movement and pain so bad I couldn't sleep as I couldn't lie on my shoulders. I would wake up every 20 minutes in agony.
I felt unwell. Chronically fatigued and struggling to do my job. If I didn't go to the pool and do some water arm exercises I could barely move at all.
Terrified of metasteses I discussed this with my GP. Blood tests done showed only a raised ESR. (Inflammation)
He couldn't order anything under medicare but another ultrasound which again showed bursisits. I wanted a MRI.
Recommended I see my oncologist. Too busy they said in February.
Contacted the breast surgeon...nope GP can deal with this. Breast care nurse here had no pull. Breast care nurse in Adelaide suggested I try no letrozole and see. My head goes...too scared to try this in case it is metasteses and it grows quicker.
So by March I'm seeing a rheumatologist. He listened. He was worried it is an inflammatory response. He sends me for a bone scan and an MRI (300k away) to exclude anything more sinister and was angry it hadn't been done already.
His verdict is possible polymyalgia rheumatica...which means inflammation of several joints...no known reason.
So meanwhile I had 3 cancelled oncology appointments despite talking to cancer care coordinator about the issues and my last visit to breast surgeon (in Setember) was just suture removal not a bloody review...and they'd cancelled my January appointment as I'd seen him. Uuugh.
So I get a call 2 weeks ago...we've made you a face to face appointment with the oncologist. The time was changed 3 times that week.
So I see him last Monday.
He listened. I cried. I told about my ongoing fatigue. My whole body restricted movement which I was coping with up until the bloody shoulders. My general feeling of being not right and my genuine fear I had metasteses but...bone scan was ok (thank goodness)
So he wanted me on painkillers. ..which concerned me as panadol makes me tired. Quality of life he says. Then drops the bombshell...since you'll be on AI another 7 years..what?..all along they've kept saying 5 as no nodes...but now saying emerging results still recommend I do 10. My coping...was knowing I've only had 2 more years...but bloody 7. So More tears.
I then explained how much restrictions /pain /stiffness I had. No...I didn't whinge much before (always said its doable and was better than initially) but with the shoulder issue it's now just too much. His physical exam was much more intense than before including liver and abdo area...I'm sure I haven't had this before.
Sooo...I'm on a letrozole break to figure out whats drug related, whats age related or just bursisits. 3 days free and I can stand up from bed and walk normally. I can step down a step. My hands can rotate. Bloody marvellous.
The plan now is too see what else improves and try a different AI.
So even prior the break...I am sleeping better.
My shoulder pain is less after resting since March any upper body exercise other than controlled stuff set by physio. I'm not feeling quite as fatigued. I really wonder if I do have another bloody autoimmune thing happening.
Anyways...life goes on. Kath x
