HI
I'm new to this forum, so to briefly introduce myself, I was diagnosed with stage 1 grade 3 breast cancer in January after my first mammogram after reaching 50. I had 2 ops – full mastectomy, plus lymph node removal because cancer was found in the sentinel node. All 13 lymph nodes removed in the 2nd op were clear of cancer. :) No chemotherapy because I was part of a trial looking at genetic markers for likely return of the cancer, and had a very low score. I had 3 weeks of radiotherapy, and I have a zoladex implant once a month and a daily exemestane tablet.
The reason I have joined the forum is more emotional than physical! Having reached the end of my hospital based treatment, I feel that all support has just ended. (Though I know that’s not quite true as I can still ring the wonderful breast nurse who has been great.) I have been given so many booklets about help to move one and they list support groups, free massage therapy at my local hospice, end of care appointments, and so much more, but absolutely everything is unavailable due to covid. I was given a booklet by the hospital about moving on at the end of your treatment, including a form sent to Breast Cancer Now promising they would be in touch regarding ongoing support if I completed the form and sent it to them, which I did a month ago and they haven’t even acknowledged it. I was promised an appointment about avoiding lymphedema, and another about signs of cancer returning, but neither have happened.
I am aware that these are very difficult times, and partly feel quite selfish for feeling that the NHS should be giving me this support at the moment. On the other hand, I have started back to work where I run a support service at a university. We have managed to arrange online support including 1-2-1s, but nothing similar is available from the NHS. I am being expected to look after other people, while receiving no support at all myself. My family and friends have been brilliant, but all expect me to be back to normal now, but, having finished treatment in July, plus the impact of the hormone treatment, I just don’t feel that way yet.
Any thoughts or suggestions?
