You’ve asserted yourself. I am pretty certain not many could do that in these early days.
As regards control, I really do understand. You mentioned them taking something from your body upsetting that equilibrium. Mine’s the reverse. I don’t mind needles, but I am very fearful of anything like the flu jab going into my body. Once in, I can do nothing about it - as if I‘d need to but that’s control-freakdom for you.
I looked back at your earlier posts and saw what you are dealing with. You may well find they can give you your informations as you request. That will be good news. I’m crossing my fingers for you,
Both of you have been amazing and given me the best advice I can only say thank you 💗💗😘
Hi Bluecat and Jan
Jan - I love that people share different opinions on here, and that you were so kind and tactful when you disagreed with me.
Bluecat - I apologise if I have encouraged you to do something that wasn’t a good idea. But I do think that explaining your fears to your nurse is the right thing to do, and as Jan says maybe they can do something to change the way the appointment is conducted.
Hugs to you both
Thanks Jan 💗 trouble is I've already pressed the red button by emailing them and said i would not be attending any face to face appointments and to email it to me.
I think i want the initial shock on my own, then have a follow up appointment with them. I know it seems abit of an odd way but I need to be on control of my own initial response. Psychologically I need home for the initial response so I can just breath fresh air. My throat will close up at the hospital and I will pass out! Then the thought of having blood pressure air and gas does not do anything for me lol or having to stay their! nce Once I know i can then move forward about any treatments required.
Im just preparing myself for the worst.
I'm guessing they are deciding what type of calcifications it is from the biopsy.
I'm that much of a control freak I hated the fact that they even took something from my body to test it 😒
I've never been so frightened in my life...
What you’re facing is something potentially terrifying and you don’t know how you’re going to react. I really do sympathise with you. I’m phobic, with almost lifelong panic disorder - control is the key aspect of my life. Any power imbalance and all my defences come up.
BUT, I think for the first time, I don’t agree with Evie. I do agree about talking to your breast-care nurse about your fears but I don’t agree about the alternatives. GPs are not oncologists. You aren’t, as far as I’m aware. I don’t see how you could make sense of all the specialist jargon and abbreviations and their implications for you without guidance.
What I do know is that your consultation is not just to deliver results. It’s to discuss the MDT’s proposed treatment plan, answer your questions (write them down), talk about alternatives and relative success rates, get your consent to treatment - there is so much more than just results.
I presume consultations so far have been over a desk. This really surprises me. I started in the private sector and moved to the NHS after surgery. Not once have I experienced such an outdated format. The closest has been their turning to the desk at the side, usually to study the screen for details. If you talk to your b-c nurse, they can probably make changes to redress this apparent power imbalance so you feel comfortable. This is a hard time for you and they need to be seen to support your needs. You might also, btw, see a different consultant oncologist, the one who’s taking over your treatment (they all seem to have specialisms at my hospital like type of chemo, radiotherapy, endocrine therapy) whose room may be set out like 21st C rooms!
It occurs to me as I write though, this is an illness that you cannot have control over, except by heeding advice and making the right choices. What are the right choices?? As a control freak, this registered with me from the start. Once I got assurances related to my phobia and panic disorder, I let everything go. I asked as few questions as necessary and just got on with whatever was necessary. This was nothing short of a miracle and I don’t know where it came from but it worked for me. I got through everything and had my first year since the 1960s free of panic!
You may need to know every tiny detail to get through your treatment but, for it to work, you are going to have to trust your team. This isn’t a weakness; it’s simply acknowledging that we can’t be experts at everything. Trust is essential
If you haven’t read some of it, I suggest you look at Liz O’Riordon’s initial blog, 2015. She is a breast surgeon who found she had breast cancer. It’s open, raw, emotional, pragmatic - and inspiring: http://liz.oriordan.co.uk/styled-2/blog/index.html
I hope you can get this resolved in a way that doesn;t put you at a disadvantage or delay your treatment.
Hi Bluecat - I’m sorry, I meant to reply to your other thread too. I really don’t think what you say is ludicrous in any way and it’s really great that you feel comfortable on here to open up and share your emotions.
In your other post you talked about liking control and feeling out of control at the moment. People/counsellors talk about not always being able to control events but instead trying to control how you react to them (I think that’s a rough paraphrase of it). From what I have seen on other posts I think you have a good control of how you react - I saw for example you talking about how you put the diagnosis/waiting in a box for the time being and let the medical team deal with it. You are now taking control of how you want your results to be delivered. It isn’t at all unreasonable to call the nurses and explain how you are feeling and how you would like your results to be delivered in the post. You could perhaps have any follow up appointment afterwards, once you have had time to get your head around the news, which of course I hope will be good. It is your body, your life and if there is any way to have the news delivered on your terms then what is the harm in asking? Maybe also say that you are scared of coming in because of rising Covid cases, to strengthen your case?
I really understand the control feeling. If things are going wrong for me I like to walk away/go for a drive or whatever I can to get away - but when I got the diagnosis I couldn’t run away as the lump came with me.
You have already been advising others at a similar stage to you, which I admire you for - my head was all over the place in the initial stages. You should read back to yourself some of the supportive posts you have made. Think about how you might reply if someone else had just written your post.
I hope some of that makes some sense. Hugs, Evie xx
I'm going to be getting a letter shortly to confirm my appointment results from a biopsy next week. I've parked my concerns for now...but for me to deal with the whole process im trying to manage how I will deal with being in the consultancy room which seems more worrying to me than the actual result. Ironically I can handle what will come my way, I think!
I know this sounds absolutely ludicrous, but the thought of being sat one side of the table and the clinician sat with a folder on the other side of the table with my future in that folder 📂 is just overwhelming 😳...there just seems too much power for me and my little life sitting in the corner waiting to see what journey i will be on.
Don't get me wrong I have complete faith and admiration for these Angels, I really do. But I cannot handle the power ( in my head that is!) I'm not sure if it has anything to do with my job as im an investigator and the thought of me being in the vulnerable position does not bode well...
So I am.considering if they will let me have the results through the post or my doctor to explain it to me, at least there isn't a table between us... which seems better than having to go to hospital receiving bad news...
I'm trying to prepare myself for the worst, i csn do that, but its the set up of the room that bothers me...i know this must just sound mad to anyone that reads this!!
So I guess my question is, do you have to actually go in for the appointment 🤔? Is it always normally done this way?? X