one year on

[Isbfan]

Hi there ,

I have read a few posts and find you all very caring , inspiring and helpful . I was wondering if anyone had the same issue as me . I had pneumonia and pleurisy in November 23 and had antibiotics and finally chest X-ray. This showed a pleural effusion so got sent for cat scan . This showed secondary breast cancer in my lungs and bones . Had to have a pleuraldensis which stick my lung down so no more cancer fluid could fill it up . Was ill and had lost weight. Then had meeting with oncology team and am now on a regimen of ibrance , anastrozole and zometa once a month . I get a cat scan every four months . I am doing ok and am very fortunate to live in Scotland and get such amazing treatment and not have to pay either . I get sad at time and am working hard to be as positive as you all seem to be . Hopefully the treatment will continue to work as lung mass has shrunk and bones stable . Just worry about what next and need advice how to live in the present and not have dark thoughts.

thanks for such inspiring posts .

[Beryl71]

I too live in Scotland now although I started my treatment in England. Which hospital are you having treatment at. I'm nearly five years in and started on letrozole and ibrance. Then about eighteen months ago was changed to fulvestrant and ibrance. At some point I had a change of doctor and the zolondronic acid infusion was added in three monthly. I've moved back to six monthly scans .

I think as your treatment progresses you will gain confidence and other than having to plan around the medical regime , hopefully will be able to think in more normal terms about your life.

My diagnosis came during lockdown. I too had pleural effusion but that cleared quickly and I am left with bone disease which is stable. Travel insurance is expensive but I do what I can.

My life has changed completely as I met my partner post diagnosis and have moved to Scotland, bought a new house and now we're getting married. We've had some lovely holidays. So don't think.life has ended, just be careful, keep your emergency info with you and do what you can/want to do.

Best of luck. If you live near Bonar Bridge, we must meet up.

[Isbfan in reply to Beryl71]

Thank you Beryl. You are amazing coping with so much falling in love , moving to Scotland and cancer on top of it all . Amazing. Thanks you for your positive advice . I don’t want my life to end and shouldn’t entertain these thoughts . Just hard in the darkest hours.

I get my treat St John’s hospital in West Lothian where I live . They are wonderful people. I had breast cancer in 2020 and lumpectomy and thought it was all over . However I am living with cancer not dying from it .

You are in a beautiful part of the world and happy wedding. Haven’t been to Bonar Bridge but know the area . Thanks so much x

[Beryl71 in reply to Isbfan]

My cancer returned after 26 years. I really thought I had got away with it. Little did I or the doctor realise all those niggling symptoms were cancer until the lymph glands popped up across my clavicle and an x-ray revealed the worst.Try to stay positive. Xx

[Figletf]

I have found great comfort in knowing that God is with me thru my struggles with this horrid disease. Jesus too had scars from His satanic death.He comforts me and helps me to BELIEVE that. although my cancer is metastatic ( from breasts...which I lost to surgery,to bones and liver) it can be stopped from progressing with Enhertu.

I have no physical pain and have been stable for 18 mos.I am thanking God for every breath I am given each day❤️

[CTGirl1962 in reply to Figletf]

Amen and GOD BLESS!!! I am totally with you on this!!! 🙏🏻🙏🏻🩵🩵🙏🏻🙏🏻

[Figletf in reply to CTGirl1962]

💗

[Isbfan in reply to Figletf]

Thanks you for replying. So glad to hear that you are stable and have no pain and hope that continues for you . Glad that you have your faith . Thanks

[jersey-jazz]

Dear Isbfan --------Dark thoughts are just part of the picture of MBC. To me, it is the not knowing. As soon as I know the facts, the fog lifts. I always have a Pollyanna moment when I think that if that is the worst of it, I can do that. The warning I have is not to share all your dark thoughts with the Medicals. They may want you to go to have councilling by someone who is not one of us, the MBCers. We on this forum KNOW and we share very willingly and lovingly. I too lived in Scotland for many years and was married to a wonderful Scottish husband. Although I was very healthy back then, my husband had bad health latterly and received wonderful treatment in Scotland. As you say, you are very fortunate to live there. Good luck to you on this journey and welcome to the club that none of us want to enrolled in.

[jersey-jazz in reply to jersey-jazz]

correction: ...want to be enrolled in.

[Isbfan in reply to jersey-jazz]

Thank you so much for your thoughts. Glad you love Scotland and I am lucky to live here. You are right about the not knowing that leads to the dark thoughts. Waiting between scans is an anxious time . Thank you for being welcoming.

[Gingerann1]

hi Isbfan- my bc came back after 7 yrs in remission to stage 4 when bc cells were found in a pleural effusion on my left lung. Fluid was drained and never returned and after 15 months on Ibrance and Fulvestrant all of my scans have been NED ( no evidence of disease) for 3 yrs this month. I know whatever little cancer I still have will outsmart this treatment at some point but I hang on to every great moment that it doesn’t and try not to go to the place in my mind when there will be progression. My scans are only every six months since I’ve done so well but it is nerve racking to wait for those results each time. Hang in there, keep trusting the plan that can adapt to your future needs if there is progression since we have so many treatment options and more becoming available all the time and know that this group is here with support and love. Together we’ve got this!💜

[HelenWi in reply to Gingerann1]

So well said. I think it takes some practice but staying in the present is what we need to do. Find joy every day. Evaluate the choices you make and stop doing things that you don’t enjoy, if possible. And I think that understanding your medical plan and staying informed in a positive way is also helpful because then you don’t need to worry and think about scary things.

Sounds like you’re doing so well! Best wishes..

[Isbfan in reply to Gingerann1]

Great to hear that the treatment is working and long may that continue for you. Glad that I found this group as you are indeed helping me with many worries. Thanks

[Batiksforme in reply to Gingerann1]

Gingerann1, Our stories are similar. My cancer hasn't returned but waiting for CT results every 6 mo. is hard. I have 9 years behind me but not a day goes by I don't think about it. I thank God for research and a positive attitude.

[JEE123]

I'm not going to lie. I think the mental aspect is the hardest. I'm currently going through a likely treatment failure. I've been pretty depressed. I think you just have to acknowledge your feelings and then move on. Ive been doing much better the last few days. I felt better after the first year, but I'm also still in a bit of shock. It truly is a roller coaster. Just when you think things are stable things can change. I find this forum invaluable. You witness people going through the same emotions and when someone posts about a treatment that has pulled them out of a bad situation it gives us all hope. I don't know how I could be going through this without this group. No one else truly understands.

[Isbfan in reply to JEE123]

I do hope that they sort out your treatment and thank you for reaching out to help when you must be so anxious. I worry the whole time about the future and want to see my wee grandson continue to grow into a fabulous person . This forum is uplifting though. Thanks x

[Best521]

Find your purpose. As long as you have life you have a reason to be here. Mine has been to help cure cancer by participating in trials. Find a way to serve. It doesn’t have to be the grand gesture. There is a story about a janitor who worked at NASA. When he was asked what he did at NASA he told the interviewer “I help send astronauts to the moon.” This past year four friends in their late 50s and early 60s died unexpectedly. I did not. I was diagnosed Stage IV incurable cancer three and a half years ago. I refuse to stamp the terminal label on my head. Dark thoughts always come and go whether a person has cancer or not. My cancer is aggressive and moving faster than people who have indolent or slow moving cancers. I live with it and move forward anyway. How sad it would have been if I spent the last three years dying. Instead I have enjoyed my life, family, friends, travel and helped to try to cure cancer.

[Fancy-life in reply to Best521]

You are so inspiring. Sending you love and healing thoughts .

[Saltandlight]

Dear Isbfan-unfortunately we are all going to have those days but if you do believe that the Lord will sustain you and provide you with strength and support those days can be turned around. I’ve posted before for others that I’m here to pray with you or just listen so please reach out if you need an ear. Take each day as a gift and know you are loved.

Bible verse

[WhippetX2]

The ladies' replies were so eloquent that I'm not sure I could add much more. I will share that early in my diagnosis it occurred to me that the MBC battle was going to also be fought with my mind and stubbornness to enjoy every day and not give "it" one more minute than I had to. As you have found out, this group of women from all over the world will share their experiences and support you through this journey. You can do this.

[Isbfan in reply to WhippetX2]

Thank you so much . I think I am spending too much time thinking. Started learning Scottish Gaelic and enjoying the challenge. Won’t be posting in it though