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Losing Confidence

2 REPLIES 2
Yorkie51
Member

Re: Losing Confidence

Hi Jaybro

I appreciate you taking the time to reply especially when I hear what you are going through yourself.

Trust in my team is essential but I have struggled to have that. I had more tests this week but i didn't know what they would be or what to expect. I phoned my breast care nurse last week to help me prepare but she didn't get back to me. However the radiology dept talked me through everything so I understood for the first time what was going on. They were brilliant.

I have only briefly met my nurse once but yes your right we don't always use that time to ask the questions we have. My mind tends to go blank & process it all later. I tried to reach out again to my breast care nurse this morning to ask who I would be seeing at my appointment next week. A different nurse phoned me back & she kindly took the time to speak to me.

The waiting in-between tests is awful, I don't mind waiting in clinic. I don't doubt for a second that the tests are needed but understanding the need for them stops you constantly second guessing. I was all set to talk through my treatment only for it to be cancelled very late the day before & told I need more tests.

I have consulted Dr Google but agree it isn't always a good idea but it did give me an idea what to expect with my lot of biopsies this week. 

I have started following Liz O'Riordan on Instagram, I think she's amazing! Thank you for talking me through a few things it really has helped & I will take a look on YouTube!

Best wishes for your ongoing treatment.

Take care p x

Jaybro
Member

Re: Losing Confidence

Hi Yorkie

I can fully appreciate your feelings about this delay. What I’ve learned from my current experience is that there are things we don’t even realise exist, various proteins, mutations etc, that can make a difference between what is and is not available. I, for example, am triple negative and it’s astounding how many treatments are not available to me because of this feature of my breast cancer.

Your team are aiming to get you the best tailored treatment to defeat your cancer. NICE advises a maximum of 90 days between surgery and commencing adjuvant treatments (chemo, radiotherapy etc) so you can see that, although we want it gone asap, they know that, once the right treatment starts, it will have a better result than a makeshift treatment now. Trust in your team is essential. The trick is perhaps knowing what questions to ask - you could ring your breast care nurse and ask why this new test is causing the delay and is there a risk in delaying it further. That might reassure you. The problem usually is that we don’t use clinic time well - we think of our questions later.

Waiting is awful. Be prepared for a LOT of waiting, waiting for each chemo or radiotherapy treatment, waiting for results, waiting in clinic… Resign yourself to the fact and work out how best to manage these times - meditation, mindfulness, crosswords, whatever… and understand that your team is doing it right. They aren’t dragging their heels - some of these tests take several days/weeks to get done and many are not done on site. But each tiny additional data will ensue you get the best treatment combination for your unique circumstances. There’s no one-size-fits-all in this. 

Do stay off Google and do work on building up your resilience. Treatments are all manageable (not great but doable) and mostly they do work. But the world of oncology is a mystery to most of us. Even Liz O’Riordan who now campaigns for breast cancer, she was a breast care specialist and was shocked when she was on the patient end of the experience! We need resilience and that can be built up by rigorous practice. There are NHS-endorsed apps like Calm and Headspace. Personally I rely on selected videos by Progressive Hypnosis which are free on YouTube. In fact, I’m off to do one now.

Two weeks feels an age but it can be filled usefully so you are better-equipped to deal with the tough experience to come. Best of luck.

Jan x

Yorkie51
Member

Losing Confidence

Hi i was diagnosed in May with grade 3 invasive duct & high grade DCIS. After many tests I was hoping to have a treatment plan when I saw a consultant last Friday, sadly that was cancelled at the last minute as I need more tests - 'magview'? Another appointment made for 11th July.

Really stressing & have lost confidence in my care team, a month down the line I hoped I would have a treatment plan.