New, breast ca w/ bone mets

Hi Bof, sorry to meet you under these circumstances. You'll find this group very supportive. We all know what you mean. You'll feel like this for a while. Just be kind to your self, ìf you feel like crying, cry, hungry eat, the first time I felt like screaming I just went in the kitchen and screamed, gave myself a fright, but it let a bit of pressure out. Do talk to people you trust or phone the Macmillan help line they are very understanding and offer good support. The number is 0808 808 0000. Take care, keep posting on here  and I'm sure more will be here to welcome you. There are new treatments coming out all the time so there is hope. Chat soon. XX

MOI

Good morning all, I woke up about 5.30am, sugars high so got up to have some insulin and made a coffee, peeped out the blinds to see Liverpool has snow so drank my coffee watching the snow coming down. I hope you all had a decent night's rest. I won't be going out today so will chat later. XX

Moi

Welcome to this group. I also have metastatic breast cancer, TNBC in my case, with spread to liver, no lymph node involvement. I have been metastatic since 2022, somewhat outliving the median survival period for TNBC with liver mets. I was initially devastated but settled into knowing it was something I had to live with and I therefore might as well try to enjoy whatever time I had. As it happened, I benefited from a then newly authorised treatment for my cancer - the immunotherapy Pembrolizumab. It has caused life long consequences for me but also put me in remission. My oncologist doesn’t expect that to last, given the nature of grade 3 mTNBC, but so far so good. The cycle of 3 monthly scans is awful to bear, knowing my future treatment options are few with this type of cancer. Thinking of you. 

Hi BoF,

my heart goes out to you and I wish i could give you a hug. I also have stage 4/breast cancer diagnosed in May this year spread to the lungs. I found out via a phone call this week that it’s also in my ribs so I’m feeling raw again with it all but that’s another story. I would say it’s completely normal to feel the way you do but when I get low I try and think about the women I know from my secondary breast cancer support group who are still going strong after years of treatment. I spoke to one amazing lady in her 70s with bone and brain mets who has had sbc for 6 years and often doesn’t attend the group as she’s still does charity work on the day it’s held. Other women have still been on their first line of treatment for more than 5 years. I wouldn’t deny this is really difficult though and I still struggle to come to terms with my diagnosis myself, especially this week and I know those moments at night time well. I resent is how much time cancer takes up with worry, appointments etc. so I’d also say that if you can try and treat yourself to nice things or whatever it is you enjoy doing do it as often as you can. Thinking of you and hoping for the best for your scans and treatment xx

Hi

I was also told of my incurable bowel cancer in November after several months of testing and trying and failing to find a curative pathway. I can totally related to how you feel as every consultation is more bad news. There is just no let up at all. Do you have close friends or relatives that you can talk to? I find many people will rally around and help you. Don’t be afraid to ask for help. I have certainly reconnected with many old friends since November. 

Yes, night time is especially hard , normally at 3am when I wake up, have to remember and telling myself the diagnosis again. It is like reliving the trauma over and over… But I seem to accept my situation now. I think it just takes time. Be kind and patient to yourself. Your reaction/ emotions are completely normal to an abnormal and hard situation. 

I am married but also childless and a cat lover. My cat is called Winston . Do you have any pets? 

Stella x

Hello Box of Frogs

And welcome to this forum from me! It is a great group of people who share the good and less-good times together. I'm sure you will get lots of support and encouragement.

You haven't said what your oncology team are planning to offer you regarding treatment. Has this been discussed yet? I'm sure they will have a treatment plan for you going forward.

Like others have said, try to fill your time with things you enjoy doing to distract yourself. 

And keep posting!

hugs

Kate

Hi BOF and sorry my welcome is late and also welcome today to Loved by Archie.

It is not where any of us want to be but the support here is like no other Forum. The hardest thing is getting your head to understand what is happening and trying to deal with things. It probably doesn’t seem like it now but you will get used to the new norm, eventually, we all have to in order to move on and live our lives.

Do you both have supportive Oncology Teams that you can talk to and ask questions of? When I was dx I used to write down questions as I thought of them, in a notebook which I took to all my appointments to get the answers. I hope your Teams have a Plan for you? As Kate (Candysmum) said I’m sure your oncologists will have something sorted for you but maybe you haven’t had that discussion with them yet.

During the night, the mind plays tricks on us and blows everything out of proportion, so instead of lying awake thinking, come on here and let someone know what’s on your mind. There is usually someone here you can talk to. Or like me, you can do free jigsaws on your iPad, tablet or computer, to keep you busy. I hope we are going to get to know you both in the near future. Maybe have a look at the Daily Chit Chat and join in!

Hi BoxOfFrogs welcome to the group, but sorry you have had to join us here. I have been on this incurable roller coaster now for 10 years, and it definitely does not get any easier. I have yearly scans now, and my next one is due soon, so my anxiety is high. I went through a terrible time of not sleeping, in the end I gave in to medication. I now take amitriptyline to help me sleep. There is also a great blog from Macmillan with lots of helpful information about sleep, I’ll pop a link below for you.

am-i-the-only-one-awake-cancer-and-sleeplessness

Thank you everyone. So much wisdom and support shared. 

 anndanv Candysmum I don't have an oncologist yet. Still with the breast surgeon as the nhs is broken and there aren't enough oncologists as one just went on maternity leave. I know. Had to fight to get hormonal therapy started before oncology appt as bone mets were becoming more and more painful, I could feel the lump in my breast getting bigger and numbness spreading. Oncology appt on 27th Jan hopefully..... I was priority referral in Nov. 

 chellesimo Sleep and fatigue are crazy. Trapped in a cycle I need to break. I've been prescribed sleeping tabs but don't like taking them, I'm so groggy for hours after I wake up, and one of my cousins got addicted to them which I don't want to happen. Maybe I do need to take them sometimes...

 Stella2020  you asked about pets, I too have a cat, Tiki! She's a 16yo tabby who I am determined to outlive. She's anxious aggressive and it would be so hard on her being rehomed again (we met when she was 7, her previous human had dementia and it's left her with some issues sadly). Here's her demanding tweeties from me! 

I'd welcome hearing more about Winston =)

I've told my friends, close ones knew pretty much from the start. Then FB announcement recently as I hate telling people individually but this is my life now. Family.... told what little there is (an aunt. cousins on both sides) but didn't expect much. One cousin is great but we've never been very close including geographically. My friends however are truly amazing and I'm so lucky to have their support.

I hope your journey has calmed now, and thank you xx