Negative chat with BCN feel so upset and down

I'm so sorry to read about your experience today.  That sounds so awful. No wonder you are upset.  I think when we are let down by the professionals we are relying on to help us, it feels hellishly painful.  I hope this is not a usual experience of your BC care team and that the next interaction you have is more positive.  I had a terrible experience with part of my treatment and felt utterly traumatised and so upset.  I ran the Breast Cancer Now helpline and spoke/sobbed to the loveliest woman who was so very kind and soothing.  She helped me to feel better and move on a bit.  For me, the experience was awful but I was also heaping all of my negative emotions and upsets in on it and it was feeling unbearable.  I was grateful for the help she gave me.  I hope you find someone who can help you with this.  Much love to you xx

Thank you so much for your lovely reply

Im sorry you had a traumatic time with some of your treatment , that must have been awful , glad you were able to speak to  the helpline , they are absolutely amazing people that are on those helplines aren’t they 

The other thing that upset me was that I haven’t been told officially that it’s in my liver , no one knows for sure ( I mean clearly they suspect of course  but that is not the way the consultant explained it to me ) . I think it wasn’t her place to say that tbh 

Sending much love back , how are you doing with everything ? 
L xx

Thanks lovely.  I am doing well and getting used to my adapted body.  I have been told I need no further treatment now but I still have questions to help me understand that and what it might mean in the longer term and what actually happened to my body.  However, i am having a week of mainly feeling okay.  I am enjoying the rest from feeling mainly overwhelmed, so I am ignoring it all for now and just enjoying feeling a bit normal for the first time in a while.  The Breast Cancer Now support worker has helped me formulate my next questions and has directed me towards some reading.  However, I just go a bit swimmy when I look in the direction of it all for now so I will wait for a bit.  

I think when we have a hard time from the nhs it is difficult to know what to do.  I would absolutely hate any woman to have the same experience as me, but I also feel that complaining is not the answer.  I love the nhs & understand everyone is stretched beyond what is reasonable.  I also feel protective of the nhs and worry about being part of the nhs bashing that supports a political agenda.  We have so many things to take into account navigating all this eh?  

This week I am having that lovely moment of extreme gratitude for my life as it is and admiration for myself for what I have managed to get through.  I only know I have today so I might as well enjoy it.  

You would never know at the beginning of this journey what you are capable of withstanding.  The women you find here are just extraordinary and deserve the highest praise and admiration.  I hope you realise how amazing you are to have endured all this up to now xx

Some nurses should try for a career in Starbucks instead. Since diagnosis I have had four different breast care nurses. One of them was so bad that I made it clear I would not be having her. That resulted in an argument with their manager, but in the end they had no choice and they assigned me to the nurse I am with now, who turned out to be the best match for me. If you feel that this nurse is a negative rather than a contributing factor, perhaps you could request they assign you to someone else.

Regarding what they are suspecting and looking for, it's good that they are so thorough, but the wait can be excruciating. I know from reading the forum pages that a lot of ladies here find the support lines helpful, a lot of them recommend Macmillan, but there are other organisations, such as the one mentioned above.

Sorry you’ve also had bad experiences , I’m glad you have BCN now that is a match for you . I think I need to start trying to advocate for myself a bit more 

I feel like when I speak to her , I end up feeling more confused / worried  

I think the NHS are incredible , under such pressure  and I would hate to complain ! However I have to be able to stand up for myself and try and do what’s best for me for my MH as well as dealing with the obvious 

It is really good they are being thorough but yes the waiting is excruciating isn’t it 

I did speak to the Macmillan helpline once and they were lovely but a good idea to try and access them again , thank you 

Hope you’re doing as alright as possible ? 
L xx

It must be a huge mental as well as physical adjustment after surgery , I’m glad that Breast cancer Now are being so fantastic . Thank God for these organisation s, they are worth their weight in gold 

I would also hate to  be NHS bashing , I also feel very protective over it , it’s about trying to access the care you need in the best possible way , they are under so much pressure as we said already 

I think your outlook is just amazing and you absolutely should be full of self admiration for what you have managed to get yourself through !Like you ,  Everyone on here has my utmost admiration and respect 

It’s an empowering thing but something no one ever wants to be a part of ! 
love 

L xx

I think that our experience of the NHS, or any care-giver, depends on the person we are dealing with. A good nurse can make a world of difference. Sometimes it is indeed a question of matching the right nurse to the patient, but sometimes it is just down to a nurse's character. It is quite possible that the nurse I didn't get along with would get high praise from someone else, because their requirements are different to mine. I agree with you about having to advocate for ourselves. The breast nurse is, in most cases, the person we rely on the most in the hospital throughout our time with them, so it is really important that she would be someone who at least does not create more confusion or makes you feel worse. As for Macmillan, yes, you can certainly call them again. 

As for how I am doing, I am getting more and more impatient with it all. This includes dealing with chemo side effects and recovering from surgeries, but also where it comes to dealing with instances of stupidity in the system. A recent incident was around a blood test that was requested, blood was taken, then the lab somehow lost it, but would not say so, so a month-long chase after the non-existent test results happened, involving three different NHS trusts. In the end I contacted the complaints department of the hospital where the test took place (not the one I get my treatment at) and that's when the truth came out. 

In the past 15 months or so I have had the pleasure of meeting the best the NHS has to offer, but incidents such as the one I just told you about are really draining.

That sounds so draining and absolutely the last thing you need when dealing with this trauma already ! 
I’ve already seen how the system just is non sensical and not joined up in areas

The vast majority of staff are just fantastic and I thank them so so much for what they do for us , invaluable and some go above and beyond which is so much appreciated 

I hope the physical  effects are not too awful for you 

L xx

I agree she shouldn’t have been the one to tell you that but it can’t be unsaid now unfortunately. When I struggle to get on well with anyone I try to remind myself that we can’t all get on with everyone throughout our lives and there will always be lots of other people who find that person amazing, I’m not making excuses it’s just how life is in general but I’m truly sorry this has happened to you and made you so sad.

my chemo was held up for 7 weeks in total because my pre chemo PET scan threw up something in the bowel so I had to have a colonoscopy (what an awful procedure that was) I had been to see my breast surgeon for the results of my PET and CT and that’s when she explained the findings, she told me there was no way they could start chemo until we knew what else, if anything we were dealing with in the bowel, although it meant another hold up thankfully it was clear.

so different advice to your BCN, try and focus on your oncologist appointment first and see what they say.

good luck, thinking of you and sending hugs 

Thank you for this 

I absolutely agree , you cannot get along with everyone . It’s more that I end up hanging onto every word they say and get myself would up and upset thinking “ what do they know that they’re not telling me “

Sorry you had a hold up with your chemo , I’m really glad the issue with your bowel turned out to be all clear x

can I ask what the difference between a pet  and ct is ? 
I hope you’re doing alright ? Hugs back 
L xx