LUPUS UK
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Breast cancer and lupus

Just been diagnosed with BC was wondering ,how if any of you luppies out there managed your treatment,I shall be starting with chemo, and very green I now nothing ,and have promised my family not to google, just need advise on anything that I should do or be aware of.

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I'm hoping others on the forum will be able to help, I just wanted to say that I feel for you, such a scary diagnosis. Wishing you strength and quick remission!

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The nurse has been amazing.thank you.

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Sorry to hear your latest dx - but it probably won't be as bad as you think.

There is nothing wrong with googling as long as you use it wisely. The NHS sites are totally reliable as are the charity ones. Just google breast cancer and you will get loads of links from Cancer Research UK, breastcancercare.org, Macmillan, Breast Cancer UK. There is more help for BC than most a/i disorders combined!

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The family know I will automatically freak out .

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I'm such a worry cat always think the worst.

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Hi chaimee. Sorry to hear of your diagnosis. I am a BC survivor of 22 years! Although I knew nothing of AI disorders at time of diagnosis of BC, I am convinced that I had AI symptoms long before BC. I had radical mastectomy and lymph node removal, followed by chemotherapy; removal of ovaries (I was part of a trial), and tamoxifen for four years (body wouldn't tolerate it for the recommended five years). Although the treatment wasn't a bundle of laughs, I came through surgery with a positive mental attitude, nothing was going to keep me from watching my children (and grandchildren) grow. This was really difficult to maintain sometimes. Everybody reacts differently to the chemo, but I used to start off immediately after treatment feeling ravenous. Always had treatments early on a morning, so when finished would go and eat a hearty brunch. After that days would peak and trough between feeling great and feeling nauseous, tired, weak and wobbly, weepy, sad, scared, and then peak again to feel positive, enjoy the day, make every day special. Make happy memories (this applies whether or not you have health issues!!)

What I would say is LISTEN TO YOUR BODY - DO AS IT TELLS YOU. If you need to sleep, then sleep. if you want to curl up in a ball and hide away for a little while, that's ok. Don't worry about washing dishes or housework. Don't stress the small stuff. Don't be afraid to ask for help. When you feel better, do things that make you and yours happy. Involve family and friends and talk, talk, talk, don't bottle things up. When you see your consultant/breast care nurse, ask questions, lots of them, be involved, they have the knowledge so share it.

Having AI problems and BC can be a challenge so BE KIND TO YOURSELF (doubly so). Eat healthy, fresh air, little exercise when you feel up to it. Hugs and kisses very therapeutic. Ask the breast care nurse about relaxation therapies available, some hospitals have therapists and therapy groups available for yoga, mediation, reiki, etc. There is so much help out there for BC. Wish there was as much for AI disorders.

Your family probably don't want you to google because they don't want you to read the negative things that always come up when you google health matters and they maybe bit scared too. My husband was my rock, and although he was probably as scared as I was, he made me feel strong, brought out my inner strength. We shared everything during treatment, thoughts, fears, positivity, and he never missed attending an appointment with me. He is still the same during this AI journey.

I wish you well in the days that come. Please update and share as things progress.

"Look at the sparrows, they do not know what they will do in the next moment.

Let us literally live from moment to moment." (Mahatma Gandhi)

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What a truly wonderful sensible supportive reply.

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Thank you so much for your reply just what I needed to hear,and take note . My husband has been marvellous and daughters so am lucky in that respect.

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Thanks

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Hi

I don't have advice really as haven't been there. I just wanted to say I am really sorry to hear about your dx and I really hope your treatment plan goes well.

Best wishes 💐

L x

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