Dear @3minimes and @lollipop1. So sorry to hear what you are going through! The fear and confusion are ‘normal’, but then of course you are not in any normal situation. I’ve never been so scared. To add to what the other ladies have said, I found Rosamund Dean’s book ‘Reconstruction’ very helpful in trying to understand what was going on. You can get it in most libraries. Also, if you are lucky enough to be near a ‘Maggie’s’, or Future Dreams (King’s Cross, London) I found the help and support there a real lifeline. Maggie’s is for cancer generally, men and women, & FD is specific to breast c. Macmillan’s telephone help service is also very good, and via Breast Cancer Now, you can get telephone support from a nurse. Or, you can ask BCN to ‘buddy’ you with someone in a similar situation to you. Sometimes, what you need is to be able to ask a specific set of questions. Sometimes you just need a human voice down the line, and it may be too much to load your friends or family with. If your own BCN is not available, these telephone services are a godsend. My other advice is to try, if you can, to take a friend or family member to significant appointments because whatever the medics say, you may go into a daze and not fully remember. (Even when it’s good news!) Good luck. It may not feel like it but honestly, the fear will get better with time! Love to everyone on this forum, who’ve had to go through so much. https://www.maggies.org
Thank you skysurfer! It’s very kind of you to share all of these resources. BCN have phoned me and sent me links to their resources (very helpful!) and offered a buddy. My consultant finally phoned today. They all feel bad about current extended waiting times, and are very apologetic, but are powerless to do anything about it. She advised me to stop counting the days. So, I’m going to go away to a cold seaside for a few days in the new year and let the wind blow away my stresses. Life goes on!
This journey is not only about accepting cancer, it’s also about coming to terms with powerlessness in the face of a very strained NHS that sometimes seems not to be on your side. And letting it go instead of stressing about something you cannot change (you end up with a very sore head if you bang it on the NHS wall!!)
I hope everything is well with you!