hi there 6 months in with her2 positive breast cancer with secondary bone - would love to say hi

Hello gypsyroseandmynaughtyboobs. Thanks for sharing your story. Raising young children without having to deal with a difficult husband can be tricky enough, having to deal with a difficult husband without kids being involved also tricky enough, so having both on your plate while mourning for a friend who, from what you are saying, seemed to have died earlier than expected, sounds very, very hard, especially as you are dealing with your own cancer. 

When I was first diagnosed I was staged as 4, and for the following 10 months I knew that my life expectancy was a certain estimated prediction, with a certain percentage of patients making it longer. Fortumately for me, it then turned out the had mis-staged me and what they had thought were breast cancer mets were in fact nothing to do with breast cancer, so I was re-staged as 2 and my course of treatment was adjusted accordingly. The only reason I am telling you this is to say that I do get it, what it feels like when you are told you have mets and now have to live with the uncertainty of life expectancy. 

Your oncologist sounds great. Mine is like that too, and I too have found a really good Macmillan nurse, a very good fit for me when I need her.

As for how are we all coping, different people would have different answers to that. Mine is, mostly ok, but there are difficult times both physically and otherwise. 

Thank you grey cats, I appreciate you replying so much. It's the juggle isn't! How did you cope with those ten months? I feel like I'm hurtling rather between corners in a black box a bit.

As for being misdiagnosed, how did that feel? Its my dream they say its osteoarthritis instead in my bones - I hope the news of new treatment is less harsh for you.

Docs and team are great, my first Macmillan wasn't a great fit 9that horse has bolted etc) but my current one is lovely as I can talk about all the grim side effects treatments...and man about my husband not helping lols!

have a lovely new year, thanks for your kind words. xxx

Good about finding another Macmillan nurse. Sometimes it's about who fits with who. The one who is my go-to is matter of fact, precise, no-nonsense, which is exactly what I need from her. She is also able to get into my hospital records when it's needed, and has helped me on more than one occasion by doing that and then sending an email to get people off their backsides.

At the time of the 1st diagnosis things felt somewhat unreal. My story is proof that scans and their interpreations can sometimes be wrong, which is one of the reasons I only truly rely on biopsies. Because I had gone through about 9 months of chemo and immuno, starting a new chemo regime was a little tricky, as my toxicity level is high enough as it is. The advantage is that I am now very familiar with how it all works, the chemo team, and so on. 

Regarding life expectancy, my oncologist, who did not yet know me, was very non-commital at first. I then told him that I was aware we were not living in Biblical times and he was not a prophet, that I was only asking for his best educated guess, and that I was aware that there were no guarantees and I could even get run over by a bus right outside the hospital after the appointment. He then gave me a cautious estimate, but I found out later that this estimate was not for me specifically but out of the general statistic for all patients, which included women whose general health was much poorer than mine, women who were much older, and so on. Still, it gave me some idea.

Thank you - I felt bad writing that on here re my macmillan as they are obvs all saints, the first was a bit yes stage four, could end up in a wheelchair etc which was not how I wanted to start my journey! The second was what I wanted to hear! you are not dying you've years of treatment etc...

Also think I said the same looking out at the bus stop from my oncologists room! I know we are all different but can I ask what he said? TMI?

I hope you toxicity is low now - I'm due my new chemo today...pacing a bit!

lots of love

Tx

It's ok to say when when something does not work out with any person who is involved in your care. I am quite open about these things, and unless there is a clear, gross, wrong-doing by the other person, I attribute it to the fact that not everyone is a good fit for everyone else. 

About non-curable cancers. There are women here who have been living with them for years and years. When my diagnosis was stage 4, at some point I also told my oncologist I fully intended to be here long after the statistics, and that we should focus on longevity. I was aware at the time that I might change my mind if quality of life became too poor, but at that time I was not willing to consider that possibility too deeply. 

Thank you, yes reading here is making me feel more positive and less funeral planny! 

Yes it was as simple as not a fit and I felt strongly this person wasn't going to hold my hand in this journey, the next nurse held my hand through my nose gruelling of days and feels like friend.

I hear you on the last bit, I want to focus on being here for birthdays weddings and laughter! Thank you for taking time out to reply so sensitively....I'll pop my death clock away!

Up your bum 2021 you've been a horrible year!

Tam x

Hi. Im so sorry for your diagnosis.  Mum had breast cancer twice,  a single mastectomy and then cancer in her bones too. She was a strong woman. Hope you're not in too much pain. I've had my first diagnosis and a mastectomy but no further treatment needed. Welcome to the group.  Xxxx

Hi

Have a look at Jacque Belatro who is a Sky Sports News presenter with stage 4 breast cancer and is very positive and upbeat , also very realistic. My sister in law was diagnosed last xmas with secondary breast cancer in Her bones , it took a while to get her medication working for her but she is also stable and feeling much more positive than a year ago. My aunt died 2 years ago from secondary breast cancer, on diagnosis she was extremely ill and just wanted to survive long enough to see two of her grandchildren born (which was a couple of months after diagnosis)- she ended up seeing not just those two but also another 4 being born,  went abroad on holiday and loved a really full life - 6 years since her very bleak diagnosis. There was also a master chef winner Jane , read her story here https://breastcancernow.org/about-us/news-personal-stories/having-secondary-breast-cancer-does-not-make-me-brave-i-have-been-able-live-well-my-diagnosis

Im just trying to give you some positive stories, rather than statistics so that it can hopefully give you a boost in your positivity. 

Very best wishes to you

Jo xx

I second the motion (last line you wrote  ) I have to admit that at some dark moments I too started to make rudimentary funeral plans, but it felt awful and I shied away from that. 

On the Macmillan nurse, what you wrote is a good proof that we don't all have the same requirements, so I am glad they have nurses who can provide what we each need, and even more glad you found someone who feels like a friend. 

Any familiy events coming up at your end in 2022? Those would indeed be something really nice to look forward to, much better than looking forward to the next treatment, I'd say....

I second everything the girls have said on here. Not sure if you are a book reader but How to Glitter a Turd is brilliant. The author.was diagnosed young with secondary and is still living her best life 11 or 12 years on! She is the lqcy who started the Coppafeel charity. Very inspiring. Good luck with everything xx