I'm finding waiting torturous

Hi All
I know I am not alone in feeling the wait for an MRI and then the result is absolute torture. The wait for the result of the biopsy was bad enough, then the result of an enlarged lymph node, then the result of a brain scan (because I also have vertigo) but this wait now for the MRI is the scariest.
My breast is still painful from the biopsy and I have very scary aches and pains all over the place that make me fear the worst.
I was diagnosed with grade 2 Lobular a few weeks ago. My MRI is next week but every day is like an eternity. I know I have to be patient but I have had a bad cold and so been feeling tired and achey which doesn’t help.
I think I know I have to not look anything up (hard to do) and as the breast nurse said focus on what you do know and not on what you don’t. Such good advice, I wish I could follow it!

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So very sorry about your diagnosis. The waiting is very difficult. I had never known anxiety like it going through my scans and results. I had to put a time limit on my ‘googling’ and also just trying to keep mind occupied with other things.

Breathing exercises helped me, trying to meditate and stay calm. Going for a walk, decluttering, just anything to keep your mind off it, not easy though I know. One day at a time is all we can do.
Sending very best wishes and hope you don’t have to wait too long. Remember you’re definitely not alone x

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@gillkat Sorry to hear you’re having to go through all this. The waiting is always the worst. Try to keep busy, see friends, plan things you like to do. Good luck

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Hi Charlie, thank you so much for your reply. I think what’s worrying me most is feeling unwell and breast ache. It’s very hard not to fear the worst.

Sorry you had to go through this too x

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Welcome to the forum @gillkat

I am so sorry you’re going through this and as you said, many people here will be able relate to your feelings about waiting.

Something that you may find interesting is a Facebook live we did in July last year. One of our Clinical Nurse Specialists, Cassie, spoke to Dr Peter Blackburn, Consultant Clinical Psychologist about living with uncertainty and worry.

The forum is full of kind people like @charlie1 and @elsie1 and I hope that you find the support you are looking for here. Please know that our nurses are always here to talk things through too (on 0808 800 6000).

Sending our warmest,
Lucy

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Yes I know what you mean. I did have the breast ache too and bruising for a few weeks unfortunately. Am rooting for you x

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Hi gillkat,

sorry to hear you’ve joined us, I can empathise with the difficulty of waiting, I posted on here just before xmas with the same issues. It is very hard. The wait between tests and scans seems forever and I really feel for you.

I’m similar to you in some ways. I was told after a mammogram and ultra sound that things looked “suspicious”, biopsies were taken and two weeks later saw a consultant who confirmed Lobular, grade two and ER+ve. Then the wait for the MRI appointment and results and then another appointment with the consultant. All culminating in my op (single mastectomy) next week. All in all from the mammogram to op date has been 8 weeks. And, even now after those 8 weeks I get aches and niggles from the biopsies - it’s very hard not to let the imagination run away but my (absolutely lovely) breast care nurse reassured me all the way that those aches and pains are quite normal. If you’re worried about anything you might find it useful to have a chat with your breast care nurse, they are so patient and understanding.

Lots of different things help me with the waiting, keeping busy works for me, and (just as you said) trying to focus on what I know, not what I/they don’t know. I also found it useful to prepare questions for each appointment so I could get worries dealt with.

I do, pretty much, manage to stay off Dr Google - my consultant recommended this site as “the one” to look at and she’s right, I’ve found things on here to be very helpful and informative (the booklets are vey helpful) and a really caring great community of BC ladies.

Sending you all best wishes and hugs.

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Hi Elsie
Thank you for your message.
Good advice…I’m going to keep trying!

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Hi Lucy
Thank you so much, that Facebook live is incredibly helpful! And thank you for the telephone number for the nurses. This is a wonderfully supportive forum
Thanks again!

Hi Bee2
Thank you for your message, so reassuring, your story sounds very similar. It’s very helpful to know I’m not alone.
I have promised myself not to look things up now, to keep busy and to try more positive thinking.
Yes I write so many lists and notes before and from every meeting, clinging to anything positive, then rereading.
I really hope everything goes well for you next week! XX

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So sorry you’re suffering. Yes, it’s very hard. Agree with what Charlie says: good to meditate, or go walking with a friend. The medics themselves aren’t very good at dealing with issues like pain or mental distress. BTW There are services out there like Macmillan or Maggies. If and when it comes to it, The Royal College of Aneathetists has issued some new hypnotherapy-type techniques on its website. No-one seems to know about them, or I’d have used them the day of my surgery, because ‘terrified’ doesn’t even begin to describe my state of mind at the time…
(Preparing your mind before surgery | The Royal College of Anaesthetists)

Perhaps also contact the Breast Cancer Now Someone Like Me service. It may be helpful just to talk. It’s sometimes hard to share your fears, anxiety and worries with your friends and loved ones. Best of luck.

Hi Skysurfer
Thank you for your advice. Yes, I’ll go to Maggies, have already contacted my local one re how to deal with stress and anxiety. But at the moment too stressed and anxious to do anything!
And thanks, Someone Like Me will be v useful too.
I have been distracting myself as much as possible but so hard.
I’m just so rubbish at this. X

You’re not rubbish, don’t worry. You mustn’t put yourself down - no-one is ‘good’ at this, believe me! Let yourself be vulnerable sometimes and open up sometimes, I’d say. Stiff upper lip helps to keep you going, though - breaking down is very tiring!

Thanks Skysurfer I have had a mini breakdown over all this, but feeling a bit better at the moment. But you’re absolutely right breaking down has been totally and utterly exhausting.

Support on this forum is incredibly supportive and helpful XX

Hi you are not alone as I am sure the posts and replies show.

I am in a similar waiting period and the “scanxiety” is at times all consuming. A rant on here or with a friend does help a little - I am sending you and anyone else who needs it lots of positivity- we will get through this.

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Hi gsd1007
Sorry I missed your post.
I hope your waiting period is over now and there’s some positivity on the horizon.
Sending you positivity too and hope all is well. X