I tried to cope with it by putting it in a box in my head and shutting the lid firmly. The nurse at Breast Cancer Now said to focus on the facts as you know them, and don’t imagine stuff that you don’t know. I tried not to discuss it with anyone except the medical people at the hospital, because other people tend to say the stupidest things which are completely irrelevant to one’s own circumstances.
It is very important that you should keep up eating well and taking exercise so you are physically fit enough to deal with whatever comes your way. You don’t want to collapse in an exhausted heap before you actually have to deal with treatment.
Running, walking, riding, cycling, salsa dancing, whatever rocks your boat, and listen to music because the music blocks other stuff in your brain.
You could try doing something naughty, like having a cigarette three or four times a week (even if you don’t smoke!) and a glass of sherry. Whatever counts as naughty to you.
I don’t know if it’s just that they can’t enter your details before they get you in the room or something but that happened to me at a check mammogram a couple of years ago and I pointed it out to the Radiographer . I assume it was the image and personal details of the person who had been in before me which I pointed out I should not be able to see regardless of any other concerns .
You may be familiar with the Kubler Ross model already, but I will put it here in case you’re not. Denial is a classic reaction. I had the same ‘what if they’ve just taken a bad photo and they need to take it again’.
Whatever the outcome of this experience is for you, just know that what you’re feeling is completely normal. Also, I think it is a great idea to journal and the fact that you are paying attention to discovering who you are through this experience is a really positive and healthy strategy.
It’s all very daunting and I’m sorry you are going through all of this and the advice you’ve been given already is excellent!
The waiting is horrid and you don’t know what you don’t know so don’t second guess anything. I went through it 2 years ago and regardless of any outcome, try to keep up your exercise as if you do have to have treatment it really helped me mentally and physically. The nurses are great - talk to them about anything and this website is excellent. I’ve never used a blog or online forum before but I found similar people - all going through different journeys and we have stayed in touch 2 years in our own WhatsApp group and even met up a few times. If nothing else it’s a great support mechanism and normally someone answers you even when you are awake at 2am in the morning worrying.
Be kind to yourself and have a super weekend with your friends. Good luck to you.
Thank you so much, I did have a lovely weekend with friends, we watched a local band which meant there wasn’t actually much time for talking, just listening to enjoying the music. It was perfect because there was no intense catch up sat round a table. I’m now full of a cold, and it’s probably the worst one I’ve ever had! I’m gutted because it’s not helping how I feel mentally and I’m not well enough to exercise. I just want to feel well so I can tackle this obstacle in the best mental and physical state
I’ve started to spiral a little bit because I’ve been unwell and just doing a lot of lying around…looking into wigs and false eyelashes even though I’ve not even had a diagnosis or treatment plan. I’ve bookmarked posts online about coping with chemo without even knowing I’m having it! I suppose it’s good preparation in case I do need it, and if not I can just remove the bookmarks and feel grateful about that.
Feel like banging my head against the wall and I’ve still got 9 more days to wait…
So sorry you’re in the waiting room. It really is the worst place on earth!
It’s understandable you’re wanting to do prep and research as it’s a way of retaining some kind of control over a situation where you don’t really have much at the moment. And honestly if it makes you feel better right now, why not. Like you said, if you get a benign result, you can always just delete those bookmarks. Between my biopsy and being diagnosed, I actually called the Macmillan helpline and sobbed down the phone to a wonderful nurse for over an hour even though I’d not even been told it was cancer at that point and it really helped a lot.
I’d definitely recommend giving either the Macmillan or Breast Cancer Now helplines a call if you’re ever in a serious spiral. I’ve contacted them again since my diagnosis and it really changed the course of the day for me so it may work for you too.
Sorry that you’re feeling so unwell - lots of nasty bugs going around at present . My friend has just recovered from one - she didn’t test but thinks it may have been COVID . I would echo @mssteel and say to ring one of the helplines if you are spiralling - we have a helpline for work and I rang that a couple of times. I’ve often found when I’m ill that letting out emotion / talking something through brings about an improvement in physical health as well. Some of the info you are looking for may be supplied by the person you speak to or they may tell you the right place to start. My BCN sent me a huge parcel of from Breast Cancer Now which arrived between second screening and formal diagnosis - I read all of it . I didn’t research chemo etc but I did look at post - surgery bras and I’m glad I bought a couple as my particular trust doesn’t supply them .
I would advise if you’re going to do research to do it from proper reputable sites like this one . The thing about the waiting and not really knowing is that it takes away your power and control over your own life and the urge to research is you trying get control back . You could also make a list of questions to ask at your appointment .
In the meantime spoil yourself as best as you can - long hot baths or showers , music , audio books . I know you want to get as physically fit as possible but a few treats ( if you can taste them !) won’t hurt .
That wait is honestly one of the hardest parts, I remember that limbo feeling so well from my own diagnosis. Feeling out of body and anxious makes complete sense with everything you’ve been told. Nobody knows anything for certain until the results are back, so try to let yourself hold a little hope alongside the worry. What helped me was keeping my days simple, small distractions, and one or two people I could say the scary thoughts out loud to. Thinking of you for the next couple of weeks
I am sorry your waiting to hear about your biopsy results in 2.5 weeks. Mine was only a week and that was bad enough.
I totally get what your saying about having an out of body experience. I am still feeling like that, and I was diagnosed in May, subsequently surgery done twice, and awaiting Radiotherapy. I think the out of body experience is a coping mechanism…I still feel like it’s happening but am mot registering that’s it me.
I think this protect us in many ways from going insane, with the worries, fears and anxieties. Take some time off work too.. I hope you can find was to keep you busy during this difficult time. The normal distractions TV, reading or socialising just don’t cut it.
My distracion. I spent a week clearing the tons of stuff up my loft. It was very therapeutic. Also audible books and podcasts immerse your brain in something else. It really helps.
The wait and anxiety are very tiring and being poorly can only add to your worries
If you’re employed don’t forget that you may have access to Employees Assistance or support through medical insurance, your HR team should direct you ( and you don’t need to tell them why)
I echo what others have said take 1 day at a time do 1 thing a day to bring you joy such as getting your nails done, going for a walk, listening to music , doing some mild exercises like tai chi read a good book , bake a cake sort out your wardrobe…until they say it you are in limbo
The nurses on here are brilliant and extremely supportive so call or email them
Just want to quickly say a huge thank you to you all…because every single one of your replies is getting me through this torturous wait period. I’m two and a half weeks down, with one week to go. This time next week I will be preparing to receive the information I need to move forward.
Something I have noticed in the last week and a half…and I’m sure you’ll all agree…is how INSANE are algorithms! Even though I have mostly stayed away from googling about BC and treatments etc, I have obviously typed things into Google related to BC at the start (such as this breast cancer now forum), and my social media is absolutely flooded, and I mean FLOODED, with cancer content. I go on Instagram and I am immediately greeted with reel after reel of girls filming themselves crying and shaving their hair off, as well as people sharing their cancer-fighting diets saying they have beaten cancer with celery juice and kiwis. I’m sure if it was as simple as eating celery and kiwi, this website wouldn’t even exist
I don’t want to come off social media as it’s a way I connect with friends and I do like it normally. Has anyone managed to clean up their social feeds so they’re not seeing all this and how did you manage it?? x
