Spiralling and feeling alone

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In April I found that my nipple had inverted and my whole breast felt harder, not a lump, the whole thing. On 28th May I was being told I had a 17.5cm invasive carcinoma. It’s very large they said. It’s a lot. I have now been waiting for 8 weeks for surgery and just had it postponed by another 5 days to 10th August.

I am spiralling a bit today, especially as I have had to pause the anastrazole due to some problematic side effects. I feel very alone with this right now and am really struggling not to catastrophise and to feel that I am being as well cared for as I should be. I know another few days after such a long wait is not much in the scheme of things but it’s tipped me over the edge and the fact that it was the bookings sec who informed me of this yesterday in a very matter of fact way rather than anyone on the team calling me feels a bit uncaring

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Sending hugs.

Take a deep breath then ring your breast cancer nurse and talk it through with her. You’re not being a nuisance it’s their job.

If you can’t get them ring the nurses here or the Macmillan helpline. There is support available.

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Seconding @bluetit11 ‘s helpful advice.

Try and phone your BCN now, they are your advocates and support.

Failing that either one of the team here, or Macmillan.

You are not alone. I think talking it out with someone will help you order your thoughts.

Lots of love

Xxxxx

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I just spoke to the nurses, they are all angry my date has been moved and said I should speak to PALS

they also said that my only alternative to anastrazole was tamoxifen and there would be no point in starting it now and having to stop again in a week because you have to pause it two weeks before surgery

I might try the anastrazole again and have antihistamine and calamine on hand, I feel helpless doing nothing

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You are doing something, my friend

You’ve called the nurses, you’re thinking of ways to combat the side effects, you’ve reached out on here.

Xx

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Dear Scribble,

Please don’t apologise for feeling the way you do. I would feel exactly the same. Eight weeks already seems like a very long time to wait, and now even a further five days feels like too much. I know that, on paper, it may not seem like a significant delay, but after everything you have already been through, it is completely understandable that this has tipped you over the edge. And really, our own lives are the grand scheme of things, because none of us has a spare one.

Very often, the way medical teams communicate, or fail to communicate, could be greatly improved. It takes very little to acknowledge that there is a frightened and vulnerable person on the other end of the phone, and to show some basic respect, kindness and empathy. Being told so matter-of-factly by the bookings secretary, rather than receiving a call from someone on your clinical team, must have felt very uncaring.

I often feel as though I am being treated at a distance, with emotions carefully kept at bay, rather like an enormous but strangely unmentionable elephant sitting in the consultation room. I also find it difficult to explain how I truly feel to close friends and family, and that sense of isolation is sometimes broken only by Mable the dog, my favourite neighbour.

Love and all the best

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