Hi Jo, you’ve got a lot on your plate at the moment so no wonder you’re feeling overwhelmed. I’m ER+ with mets in both lungs. I live in Newcastle and my hospital is a cancer treatment centre of excellence , so very blessed and confident I am receiving excellent treatment. I have never been shy about expressing my needs, so I have accessed many courses on both emotional and physical health at my local Maggies Centre. Macmillan also deliver support. I don’t know if you have thought of reaching out to professionals for help? Your GP would be a starting point. Lots of GP practices have a Marie Curie nurse available. My husband has been very supportive, but he does tend to cotton wool me, so I find attending TaiChi. Swimming , aqua aerobics and dance class at my local gym gives me some space as well as fun. Cancer doesn’t like exercise, so that’s another reason for being active! TaiChi has meditation as well as pain relief, so I just love that. I do appreciate how alone you feel at the moment and hope you can find the courage to reach out and connect to organisations who will help you. Best wishes. Ann x
It sounds like you’ve been through a lot, I’m sorry it’s so difficult at the moment. I am 39 too and would find losing my hair difficult too especially with a change of treatment. Hopefully though this new treatment will work well too like the other did to start with and you will settle into a new routine with it all.
Can I ask what led you to having the breast tumour removed? I am on ribociclib and letrozle for bone mets but have not had the breast tumour removed.
I am so sorry to hear that your previous treatment had stopped working. I am not surprised you feel overwhelmed. By the sounds of it, your life has been turned upside down since your diagnosis. Are you able to access any counselling or therapy either via your hospital or your G.P.? Sending you a hug xxxx.
I can’t begin to think how you are feeling, I’m not surprised overwhelmed. The nurses on here are excellent to talk to and I have someone who phones me up from Tenovus who I can say anything to.
I am so sorry they got it wrong but hopefully you will be on the right treatment now. I do not have the same as you but I’m sure someone on here will have.
Hi there, I was on Palbociclib and Letrozole for 17 cycles for bone mets which was working great- had initial breast tumour removed as was doing so well. Then I noticed I was sore in various bone places and was having more blood transfusions and I read extensive bone marrow infiltration on one of my scans. It turns out my scan was read wrong and a stable scan was reported when it was not stable and I had apparently been on the wrong treatment for months, meaning the treatment had stopped and there has now been a spread to the tissues in my spine is how they’ve explained it to me- this causes me nerve pain now and extra pain in spine but is controlled with pain killers and Pregabalin. I’ve been switched to EC chemo- hair has just fallen out which I have found more difficult than I thought. I’m 39 and have wigs on standby but just don’t want to use them. I’ve just given up work and I’m beginning to struggle after being so strong. I’ve had to move back in with my dad and move countries to come home. I’ve been away working for 15 years so I’m finding being at home very difficult too. Just feel like everything is getting on top of me again and I need space!