Your problem is equally as deserving of help. Please never compare - perhaps long experience has made me more assertive about it (I laugh as I write that as I was literally a quivering wreck till I got their assurances. I could so easily have refused the treatment and lived in additional fear). I too have a fear of what goes into my body - I was so relieved that they failed 4 times today to get a cannula into my hand or arm so gave up on the dye for the MRI lol - so I can empathise. And control is paramount, which is partly why I had to switch off me and let them get on with it without questions for 6 months. Control is something we do more or less have to hand over as we entrust ourselves to the experts. However, it’s always your right to maintain your privacy and find others ways round it. I do hope you find a way - it’s so destructive of our self-esteem at a time when we need it. Good luck x
Thanks for the reply - I am so pleased that your team were able to support you so well given your very real problems - I remember nursing someone once with emetophobia and we were able to ensure they were not sick post op which was enormously important to them as only you can imagine - like you, I think the actual surgery was a minor concern given the anxiety about their post operative care! My issue is not as specific or as serious as yours and is more about me losing control of what goes into and what happens to my body and, for me, the changes that will mean that people will know - I am intensely private and that, to me, is a real problem. I suspect I am not alone but I know that I have to deal with it and get things into perspective. This is probably the biggest challenge I have faced and I know that I am extremely lucky in that. Take care and thanks for the good wishes. x
Hi Wolvesgirl (apologies to Cheekychops for hijacking her thread)
I have had emetophobia (fear of being sick) all my life and am treated for general anxiety disorder and phobic disorder. You can imagine my thoughts about chemotherapy! Yes, worst nightmare and beyond. That was after I’d got through the general anaesthetic horrors 🙂 . I can honestly say there has been zero room for fear about anything as mundane as bc! However, I decided to be open from the start. I presented a list of all my worries and the oncology team addressed every single one of them, knowing this was not simple anxiety or fear of the unknown - it was genuine terror. I had a very effective anti-nausea prep and meds (with extra back up in case) and never felt sick in the 5 months. They initially treated me in a room off the overflow room, in case I had a panic attack. I never did. They provided 2 lorazepam (diazepam would have been useless) to take before each treatment. I felt totally normal for once in my life - wonderful! I honestly would advise you to consider what ‘my worst nightmare ‘ means to you. If it is causing real problems, tell them as soon as possible ie tomorrow. I wasn’t the first and I wont be the last - but I am so grateful for the team for listening (and acting) and not being dismissive like my useless GP who assured me every woman feels the same. Chemotherapy itself was fine, the after effects pretty awful - but we all react differently. Good luck tomorrow - I hope they can offer practical ways to ease that nightmare.
i haven’t been assigned a bcn yet. When I call up I have to speak to whoever is there or calls me back. I think when I get my full diagnosis/plan I will hopefully be assigned one. I will definitely take your advice and ask for another if it is the one from my phone call on Friday. It’s the only bad encounter I have had. Everyone else has been amazing at all levels. Xx
Hi Cheekychops, I just wanted to add a little extra to the advice you've already been given. It is possible to change your breast care nurse. Like you, I found mine was a bit stern and off-hand with me. I imagine that approach suits some people, but I'm a person who needs to be treated with compassion and empathy first and foremost. I phoned my breast clinic and explained this to them and they changed my breast care nurse to someone who is much better suited to my needs.
Big hugs xx
Thank you so much for your replies. It is so good to speak with others who understand how you feel and to know there is support and advice when you need it. I had a lovely night out with my family last night and today I feel recharged and not as panicked as yesterday. Onwards and upwards. I need to accept that things won’t happen as quickly as I would like them to and that the journey may change along the way.
I have a big birthday in 2 weeks which is on hold and a holiday in September for our 30th wedding anniversary is probably going do be cancelled but as the nurse said when I was diagnosed I will have a big party to celebrate at the end of treatment.
I look forward to chatting more with you, reading your stories, blogs etc as it really does help xx
Hi Cheekychops, sorry you find yourself here. Of course you feel up and down, you’ve had some pretty big news dropped on you. It’s going to take some time for you to accept your diagnosis but I promise you will laugh again. Try to not overthink the scan results as there can be lots of checking of things which appear abnormal but turn out to be nothing. I had an abnormality on my liver which turned out to be nothing sinister. None of us wanted chemo so I understand how you feel but it’s doable. I think the hardest thing is having your diary heavily committed with appointments for 6 months. I was locally advanced at diagnosis in March 2017, including 9/12 lymph nodes and still here and doing well. Here’s my story which you may find some comfort from: http://lifeafterlola.com/
Hi cheeky chops ❤️👭❤️Sorry you find yourself on this journey and you’ve been treated so off hand by what should be your support team at your unit. You don’t have to stand for that and you should be supported with care and dignity. Please do use the ask the nurse facility on here and also the someone like me facility. Please use the threads as your treatment plan gets underway, there is ❤️❤️❤️👭👭👭and nuts as it sounds plenty of 😂🤣😂🤣😂along the 😳🤯💩oh and a bit of 💃🏻💃🏻🕺🕺💃🏻💃🏻As you celebrate each stage you 🥊🥊🥊please keep off google, it’s hard but please do 😘😘 bcc and breast cancer now and everyone on here is 👭👭💪💪👭👭for you 💕💕✨✨Shi xx
The not knowing and not being able to plan is the worst aspect of this pathway. Like you, I am a planner. I was recalled at the beginning of May from screening and it seemed to me that everything happened in two week blocks - had the core biopsies then a two week wait for MDT to discuss before I was seen. Then two weeks to surgery, two weeks to follow up etc etc. I get why it happens like that but the waiting and the not knowing and the way your mind works is incredibly distressing. I couldn't plan anything but was told that once the treatment plan is in place it gets better. I have no words of advice really as like you I am fairly new to all this - I have an appt with oncology to discuss chemo on Monday. The community champions on here really helped me and the fact that you are not alone may also be helpful to you as people really do empathise. As a nurse (albeit just retired) I am sorry to hear that your BCN was offhand - it is extraordinary how, even when you know what the system is as I did, how incredibly sensitive you become to every nuance and I am sure she would not want you to feel that way. I must have been a total pain as I kept querying things that I knew the answer to but they were very patient with me. I am having despairing days at the moment as chemo is my worst nightmare but I know I have to have it. You are not alone. Keep strong. xx
I'm new here - I had my appointment on 31.7.19 and was told I had invasive bc with cancer cells in my axial node. It is oestrogen receptive but my HER2 was inconclusive and is being re-tested. I've had a CT scan and am having a MRI mammogram next week. Once they have all the results they will give me a full diagnosis and treatment plan but they said I will need surgery and chemotherapy. I am a fairly positive person but my emotions are up and down and one minute I'm positive and the next in the depth of despair.
I called the breast care nurse today as I've had issues with x2 appointments for 14.8.19 being sent for the same day but at different times. She was so offhand and dismissive that I feel I don't want to call anymore. My HER2 results are not back but my CT scan results are. She said that there were incidentals on it that would be discussed at the meeting next week. Is this good/bad? She also said my appointment might be cancelled as the consultant is not there that day meaning I still wouldn't have a diagnosis or plan and probably have to wait another week at least. My mind is in overdrive trying to analyse everything and every little ache or pain I am now worrying about. I feel like a changed person already and nothing has really happened yet. The waiting game is so hard as I'm a planner by nature and like to know what's next. Looking forward to chatting to you all xx