Hi Ive recently been diagnosed with triple negative for the 3rd time, i first had a lumpectomy and chemo/ radiotherapy in 2012 then discovered i had the Brca 1 gene, had preventative double Mastectomy/ ovaries in 2019 and cancer was present in my opposite side so chemotherapy again, no follow-up appointments at all afterwards then i discovered a lump underneath my reconstructed breast the week before Christmas 2023, biopsies confirmed triple negative again and pet/ct scan found a nodule in my lung and pericardial nodule, this time incurable but can be treated. I started treatment last week nab paclitaxel weekly and pembrolizumab 6 weekly, my main struggle is how im feeling emotionally- will i ever lead a normal life ever again, what about working/holidays/ just living life in general, the breast care nurses/ oncologist seem so negative not giving me any hope at all, saying treatment is never going to end, im 59 and just feel so lonely/ desolate even though I know there’s so many people much worse than me…how do I get some positivity x
Hello @tew30
So sorry to hear of your situation, you are having an unfair share of this crap.
Maybe taking some control will help you get some positivity. Having something planned to look forward to, could be something small like a massage or lunch with a friend or something huge that you have always wanted to do.
Have some fun and settle into a good routine.
Try and take the stress out of life.
Are you a reader? I’m reading Chris Beat Cancer at the minute and just read about a guy called Stamatis Moraitis, who was given 9 months to live, changed his lifestyle then lived another 30 years.
There’s many people out there that have lived decades after. Chris Wark did it, Allan Taylor did it, to name a couple who’s holistic cancer healing ways can be found online. There will be a way for you to have normal life again too!
Keep it going, you’re on the right track, you will find your way to positivity xxxx
Hi @Ahbc21 thank you for your reply, im reading Radical Remission and Your life in your hands at the moment and do find it helpful but then the worries creep up on me and I don’t know how to control it. It’s the fear that the treatment won’t work, other problems it may cause and just basically the lack of control. I know its early days yet as ive only just started my treatment but i just feel like I can’t make any plans to look forward to with it being every week/ risk of infection etc. The breast care nurses haven’t been very helpful, i couldn’t really understand everything the oncologist registrar was saying as his English wasn’t great so that didn’t really help. I probably need to slow down and take things one step at a time but its hard when you’ve always been in control. Hope you’re doing well and thank you again xx
Sorry to hear your update, try joining the secondary breast cancer support groups with breast cancer now and your local group. I had primary breast cancer in 2018, secondary in 2023. I’m 59, I don’t have triple negative. There are 60,000 2BC patients in the uk we are a community out there to help each other find our new way forward.
There are also drug treatment groups and make 2nds count group on Facebook. Try them out for some guidance and support.
It is not easy but doable
@tew30
I feel for you
It sounds like you are already taking control, you are on here and you have your books. You have said it yourself too, slow down and take things one step at a time. The transition into this isn’t easy but you will get there.
The fear comes in waves doesn’t it, I remember sitting in the waiting room and being tired and thinking bad things, I spoke to my husband about it, very scary for me to admit what was in my head but I had to say it cos I new thinking bad things wasn’t good for me . He came up with “I wish I was on Benidorm Beach”. It’s a gorgeous place and every time my mind went dark I said this to myself, it really does help. Would this be classed as a mantra . . .
My GP said I have one goal and that is to get rid of cancer, I added to it that to do whatever it takes to prevent recurrence.
Making good changes to your life helps dampen the fear.
When I read Allan’s report on how he cured his terminal cancer my daily mission was to put in place changes for myself. This gave me purpose and control
I studied and searched for vitamins, minerals and powders. Planned food I could eat, read cancer books and recipe books, shopped for non petrochemical cosmetics and toiletries. Tried my best to get 2 30 minute walks in a day going as fast as I could, which some days after treatment was a snails pace, best was being full belt.
This all kept my mind focused and helped me feel I was in control, doing good things for me.
People also talk about mindfulness and colour Healing. So I changed the TV light and living room light to orange and breathed in the orange visually and out the black when I was doing my yoga. I would follow this up with breath work and meditation.
Meditation is so good to quieten the mind, I’ve been doing it at bedtime this week as I’ve been struggling with flushes and been in puddles in bed, the meditation has helped me sleep really well. It’s The Mindful Movement on you tube, just listening to Sarah’s voice calms me
Ask for a copy of your letters from your Oncologist to your GP, this should help with the major details of what was said in the appointment. You could always ring the oncologist’s secretary/ reception staff if you have questions they can ask and get back to you.
Have you thought of counselling? My BCN / consultant was able to refer me to an holistic centre, I was able to get free sessions of counselling, massage, reiki, acupuncture.
Sorry I have rambled on here is a link to Allan if you are interested
Be kind to yourself
I’m sure you’ll dampen that fear xxx
@SMBW18 thank you for your reply, i should be grateful for feeling ok physically at the moment and pick myself up emotionally, its just fear of the unknown i suppose, hope you’re feeling ok at the moment x
@Ahbc21 thank you for your good advice, i was reading Allans journey yesterday but worry about the supplement advice whilst on chemotherapy and immunotherapy, are you on treatment at the moment ?its strange that you said about imagine you’re on benidorm beach, we fitted a 4 day break in to benidorm before i started my treatment and it was so lovely to do something normal, i just fear that I won’t be able to because of the risk of infection with how the breast care nurses were talking x
Hi @tew30
I had chemo, took bio curcumin, Liposomal vitamin C and selenium. That was 3 years ago. I am still taking them now. I also drank barley grass, Spirulina and matcha.
It is wise to check, my oncologist said I could but obviously there’s different chemos.
If you have a blender make up a anti cancer smoothie
Handful Kale
1/4 lemon
1-1.5 cups berries
Half banana or 3 dates
1/2 handful of walnuts/almonds
Water
I also add ginger and garlic, to boost immunity
How weird . . Benidorm, you’ll have no problem in visualising your happy place.
Covid brought in masks and sanitisers, maybe you could do more than you think. Now the weather is nicer fresh air and walks in greenery are fabulous especially when the birds are tweeting.
Hope it goes well xx
2023 diagnosed with breast cancer went through mastectomy chemotherapy , and radiotherapy now all follow up treatments put on hold found out last week l now got another primary cancer in the Oesphage just starting all the usual scan and diagnosis I know I am going to have chemotherapy again but not sure what grade cancer or whether it has spread. All I’m doing is taking each day as it comes and l will take the treatment and keep on plodding on I know l want be the same has I was 2 years ago but then again I am 2 years older ,l will keep going l will think positive and I will continue to walk my dog , do my jig saws and listen to my calm apps.
And hopefully l can get through this again xx
@janeymay7 im so sorry to read about your new diagnosis, it really is tough, I admire your strength and positivity in dealing with it, as for myself after reading other peoples stories i think I really do need to pull myself together and accept that i just need to get on with it, sending prayers and hope to you x
Hello Tew,
I’m so sorry you’re having to go through it all again - it can be soul destroying, can’t it.
I’m also a third-times, previously diagnosed at 38, then 50 and last year at 64 with lung mets.
On one level I’m grateful that ive been able to see my children grow up- they were 11 and 9 when i was initially
diagnosed, but alongside that I’m enraged, and also
distraught at times looking at my grandchildren and my son
and daughter.
I’m a year on, and still on Capecitabine, which seems to
Hi Methnic. Im 6 months in and still waking up every morning in a panic, i started nab paclitaxel weekly in March and have immunotherapy every 6 weeks, had my 1st scan and things have shrunk so i should be happy but I’m still not reassured because i know things can change, glad the capebectine is working well for you, how do you feel on it, are you able to lead a normal life? X