Limbo land

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Hi all

I’ve been diagnosed with invasive lobular breast cancer which has spread to my armpit lymph. Plan is to have an op to remove lump and nodes but also waiting on a CT scan to see if the cancer has spread further - if it has then the op won’t happen and I will start chemo instead. The wait for the CT scan has 7 days so far and now have an apt for next Thursday - a total of 13 days since diagnosis. Is this normal? 13 days of living in limbo land seems so long … and torturous! Any advice on how to keep positive in this time is very welcome!! 

  • Hi Kate, I was diagnosed a month ago and have had all the tests and waiting to find out if chemo first then op or other way around. I wasn’t sleeping or eating and just literally going through the motions. Thankfully after finding this community only a couple of days ago I don’t feel so alone even though I have good friends and family around me. It’s seems as if things are moving quickly but sometimes you can feel not quick enough and all I can suggest is keeping busy to try and take your mind off things even for a short while. Someone said to me to make sure I have my comfy clothes sorted prep meals etc which I have also find helpful. Just go with how you’re feeling, I woke up positive then had a little cry watching Lorraine so it’s swings and roundabouts. Hope this has helped even in a small way. Sending you big hugs xx 

  • Thank you … keeping busy seems to be the key- but I’m running out of things to do - already done and wrapped all my Xmas shopping, defrosted freezer ready for batch cooking which I plan to do next week..! comfy clothes shopping sounds like a great plan too…

    thanks for the support x

  • I need to catch up! We have our Son’s birthday on the 26th and will then be able to prep more for Xmas! I purchased some comfy bras today and comfy clothes is next on my list xx Kissing heart 

  • I found distraction was key too. Doing practical things to prepare. Knowing that exercise improves outcomes. Also sounds like you have healthy batch cooking planned. Managing stress actively is helpful for outcomes too - yoga, meditation, a bit of wim hof youtube breathing exercises. Whatever you find helps. I use a lot of YouTube’s over in person classes. 
    Other practical things are a good dental hygienist clean. I had my eyebrows tattooed - a powder brow (which has faded almost 2 yea on) but was great on chemo as no one could tell eyebrows thinning and easy to colour in or pencil in missing lashes. A non foaming toothpaste like sensodyne or green people toothpaste is less irritant on chemo. Unscented shampoo like faith in nature is gentle for your hair and same for skin. A good eczema moisturiser to use in the shower like E45 - my GP prescribed it. Your prescriptions are free for next 5 years. You collect a form from Gp surgery and get it stamped and then send it away for medical exemption certificate. There are probably more things, but it’s quite a list already! Just ideas to fill your time with.

    other charities like Penny Brohn are helpful in supporting nutrition through chemo and offer other bits and pieces too. 

    wishing you all the best and hope you get your plan soon xx

  • Wow! So much great advice - thank you xx