I was diagnosed in August last year with stage 3 C ILC, her2 low, grade 2, er and pr 8 /8. 28mm tumor and 19 lymph nodes with metastatis and extranodal spread. Double mastectomy and axillary clearance done in November 2024 and January 2025 respectively. I was deemed not fit for chemotherapy (lobular is not responding well to chemotherapy anyway). I am on abemaciclib 100mg twice a day and letrozole 2.5mg /day. In July I had radiotherapy 15 sessions 40.6 grays in total, finished on 25th of July.
Now I have post radiotherapy fatigue. Was really extreme for a month, now very slowly fading away.
Yesterday had a scan to check for metastatis, as fatigue was very bad and my blood test couldn’t explain that level of severity.
I don’t know where or who I am anymore. It’s really hard to convince my brain to enjoy life. Before I was very active and successful at work, now it feels like I’m sitting on ashes where my life used to be.
I entirely relate & feel exactly the same. It just takes absolutely everything from you doesn’t it? All to “live” but you just aren’t able to during the treatment and if ever the same again. I am no longer care free.
Yes, cancer puts everything in some distorted perspective. I don’t do shopping anymore ( only groceries) because everything seems to be unnecessary. It feels like even buying green bananas seem to be over optimistic.
I have hundreds of books and beautiful collection of house plants - trying to find them new home, but apparently it has no value nowadays. Thought of them being toss in a skip breaks my heart but I take it as lesson - first stage of letting things go.
I have oncology appointment on Thursday. I know it might sounds rude but I hate oncologists. Those who I’ve met - they treat cancer, not a patient. I guess in that line of work you have to have no human emotions, otherwise you go crazy.
Well at least that one is honest I suppose. People really can’t unless they’ve been in the same situation. I’m not sure it’s particularly helpful either , though
I’m so sorry to hear how you’re feeling. You’re going through something extremely difficult and feeling hopeless - but please know that you’re not alone. If you ever need someone to speak to, even just to tell us how you’re feeling, you can reach our nurses on our free helpline 0808 800 6000. We can also arrange a specific time for the nurses to call you instead, if you would prefer that.
You can also reach the Samaritans on 116 123 or if you feel like it is an emergency or that you are in crisis, please phone 999.
We are all here for you, and want to support you through this, so please do keep using the forum and reach out if there’s anything we can do to help.
Thank you
After months of begging for help I know I am alone.
I have been labeled as challenging by mu MDT.
My treatment was postponed due to mental health but I never got help with it, as they expected me to miraculously get better on my own.
Now after radiotherapy all my symptoms were dismissed as “psychological”. I’m tossed between gp, oncology, mental health services like in pinball machine.
I think the sooner government will pass bill about assisted dying the better.
Hi Kate. I can understand - I have been pinged about a lot on that front too. I found it so stressful that I ended up just halting it all because I just kept being bounced from one place to the next. Did you see a psychologist at all? I was referred for a few sessions - I just cried non stop most of the time but it was a different pair of ears atleast.
@kateunlucky I sorry about everything you have been through. It doesn’t help to be labelled by your team when all you need is help.
Please call the BCN nurses 0808 800 6000 9-4 or MacMillan 0808 800 0000 8-8. As already mentioned asked for psychological help. I’ve had two lots of counselling and about to start some more.
Penny Brohn charity have online support as well as some in person if you live near Bristol/North Somerset. I highly recommend them and I regularly use their services.
I’m sorry you’re feeling so let down by the system, it must be so frustrating when you’re already feeling so isolated. Please know that you can come back to the forum as often as you like, and post as much as you need to. There will always be someone here who is willing to listen.
Not to repeat myself, but if you would rather speak to someone over the phone rather than online, our nurses are more than willing to listen to whatever you want to talk about, whether that be to vent or rant, or if you have any questions about any further support that may be available to you.
You can call them free on 0808 800 6000.
Our typical opening hours are:
Monday to Friday — 9am to 4pm
Saturday — 9am to 1pm
Samaritans also provides confidential non-judgemental emotional support, 24 hours a day, for people experiencing feelings of distress or despair. You can call them on 116 123 or email jo@samaritans.org
Please do keep coming back and updating us on how you’re feeling if you find it helpful, we’re all behind you and hoping you get the help you need soon,
Hallo Kateunlucky
I’ve had a similar experience. Also gaslighted.
5 years and 4 recurrences in.
I have a self euthanasia plan.
I am never going near a doctor, nurse or hospital again. I call them the evil ones.
It’s bad enough having cancer, mental health and autism. I don’t need a bunch of people who should know better being nasty to me.
Oncologists. Did they swear to Do No Harm?
Think they have forgotten.
I’ve been called unwise and irrational because I declined chemo that only has a 4% chance of working. I’d have to be irrational to take that deal.
Especially as there are 2 much more effective treatments (PARP inhibitors and immunotherapy )that actually are at least a bit more effective.
Why would I poison myself?
Also they divorce you from your loved ones when you need them most.
Please don’t say this😢 about wish you succeeded.
It sucks, cancer is very lonely place. I really want to say something meaningful and full of wisdom, but it would be like blind leading the blind😏. I guess we need to find strength within ourselves, no other way around. Funny enough Nietzsche and Camus books helped me. Finding logic and sense where in none.
You had a right to refuse and you were strong enough to be true to yourself - this is bloody courage. You should have support regardless to your choices. There is no two the same roads in this corner of hell. Sending hugs.
@bea2 I’m so sorry to hear you have been treated unfairly.
Please know that the BCN nurses are available tomorrow between 9-1 on 0808 800 6000. But if you need to speak to someone outside of these hours MacMillan are 8-8 7 days a week 0808 800 000. And Samaritans are 24/7 always available to listen on 116 123.
I hope you feel you can reach out and have someone listen to your concerns and feelings.
Thank you so much unlucky Kate, that is very kind.
I used to be a very active dog walker, breeder and canine behaviourist.(so if anyone has dog problems please say, I’m so bored out of work) so I empathise with your distress at the loss/ change in your role.
If I had known the cancer machine would be so unrelentingly nasty to me I wouldn’t have started.
I’m angry and upset, who isn’t in these circumstances?
I so hope things improve for you Kate.
Don’t let dismiss, deminish and demean you.
This people (oncologists) get a ridiculously large salary for treating You and it’s their job to help you not make you feel shit about yourself at a time when you most need support.
And thank you again for your kindness. I’ve also read Camus and Nietzsche! Yay, kindred spirit.
As an avid reader I’ve found one of the only that hat has taken me back to a happier time is re reading childhood favourites.
