Worried about the periods of limbo

Oh that is so tough.  I think both forums are relevant and can probably help you understand what might be coming and how to deal with it - the breast cancer forum for more specifics on diagnosis etc, and here for carers challenges and support on all kinds of cancer.  For us, the waiting is the worst part.  Sometimes it just feels like too long for us, and sometimes it is too long and you need to be aggressive in advocating next steps.  It seems weeks is normal (excruciating for those of us waiting, but not much time clinically).  If it’s more than two weeks I’d start advocating for an appointment/decision.  Once you have your treatment plan it can also take some time to get started.  If an operation is needed, it is usually 3-4 weeks of waiting.  If chemo, it’s usually 7-10 days.  I say usually but what do i know?  Just our own experience and things I’ve seen on this site over the past year.  The Macmillan nurses will know and you should feel free to call them for advice- they are brilliant.  I know every single day waiting is a nightmare but we did start to realise clinically it can take several weeks and that weeks don’t mean that much In getting started.  However we sometimes had to advocate to get remembered/scheduled and if you are worried about specific symptoms (like nausea/weight loss) I would call with your concerns because sometimes they will have a solution.  All best wishes and let us know how it goes.

Thank you, Juppy.

I have managed to get through to our GP, eventually, and organised a telephone appointment. We will see where it leads. It is the weight loss and weakness that is the most distressing thing to witness.

I will certainly try the Macmillan helpline.

Thanks