Hi blue3,
Thanks for posting here.
It’s understandable you feel disempowered with no control when you haven’t been able to communicate with the breast care nurses and have your concerns and questions addressed.
It’s also natural that you want to sound off and ask advice about what to do next. Getting the right emotional support and information is important and can often make a difference to your ability to cope and manage the worry and fear you’ve been experiencing.
You might find our information on Coping with breast cancer emotionally useful to read, but it also sounds like it may be helpful for you to talk through what’s been happening and how you’re feeling in more detail. You can do this by calling our helpline on 0808 800 6000 to speak with one of our nurses. If you’d prefer for one of us to call you, you can use this form to request this by ticking the box agreeing to a call back.
The helpline team have time to listen, talk through your concerns and answer questions as well as signpost you to additional support and information if necessary. We often talk to people who are considering moving their care to another hospital too.
Your call will be confidential, and the number is free from UK landlines and all mobile networks. Many people call us regularly for support alongside their hospital care.
At times like this, many people also find it helpful to talk with others who are going through or have had a similar experience such as the responses to this post from @jolm, @claspe and @jolou. You can continue to do this by posting in the relevant areas of this forum and also through our Someone Like Me service.
This service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.
If you still do not receive a call back from the hospital you may wish to report this.
You don’t say where abouts in the country you are, but the different nations have different services for you to contact to do this.
In England the Patient Advice and Liaison Service (PALS) can provide you with information and support. You can find your nearest PALS office on the NHS website.
In Wales government provide guidance to people living in Wales on resolving concerns or issues with NHS services. This is called NHS Wales complaints and concerns: Putting things right
The Patient Advice and Support Service can provide advice and support in Scotland.
You can register a concern or complain about your care by contacting the feedback and complaints team at your local NHS health board.
The Northern Ireland Direct website provides information on the standards of care which you can expect from NHS services in Northern Ireland. You can also seek advice from the Patient and Client Council They can listen to your concerns and are able to provide information, advice and help if you want to make a complaint.
As mentioned above, please do call our helpline if you would like to talk this through or have any further questions.
The number is 0808 800 6000. If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
Out of hours you can leave a message and we will call you back when we next open.
We’re continually evaluating this service. If you want to provide feedback, please click the link to complete the survey . It should take approximately 10 minutes.
Best wishes,
Catherine
Breast Care Nurse
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As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.
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do you mind me asking why you haven’t had a mastectomy as you’ve been through two operations already?