Like everyone living with metastatic BC, I feel like an entire year of what will likely be a short life has been taken away. My treatment has continued, but everything takes longer than it should and I spend more time speaking to my oncologist on the phone than face to face. Scans take far longer to arrange and have had to be chased up by my team and by myself. This was extremely evident recently when I experienced some progression in the lining of my lung which caused a large pleural effusion. I was effectively drowning in my own fluid.

Two and a half years ago I had a medium sized effusion in the same lung which was treated as urgent and I was brought in the next day to have it drained as a day case. This time a scan appointment had to be chased up and took yet another week, when I was already in pretty poor condition. The clinical teams are trying not to have hospital admissions in order to avoid the risk of COVID and any other infection, completely understandably. However, in my case once the scan result came in the respiratory team took over and I ended up in hospital for 5 days with chest drain in for 3 of those. So I was admitted in worse condition, spent longer in hospital than I would have if this had been dealt with earlier and it is taking me far longer to recover.

Clinical support has been as good as it can be in that I can contact my excellent team and they will get back to me quickly, but our system is stretched to the max and advocating for yourself is far more important - as is the relationship you have with your key people. I depend on them to work their way around the system and they do their best in very challenging circumstances. I've also found if I'm perceived to be "sensible" and " pleasant to deal with" ( words used by my team), they are just that bit more likely to give me a little time. I need them on my side, so it's worth the effort even though sometimes you really just want to scream!

Our vaccination roll out is continuing apace, so there is hopefully a bit of light. However, I think the systems and processes around our treatments will take much longer to improve and there is also the concern that new drug developments and approvals will take too long now to benefit those of us at stage 4. I know it is complex but I do question why vaccines ( albeit with underpinning work already in place) can be approved in 10 months, but it takes 10 years to approve cancer drugs!

SFCakes, wow, you were diagnosed with mbc during Covid. Of all times to have to go through the start of that kind of diagnosis. And to never have seen the full faces of your medical team! It’s almost like something out of a science fiction movie.

I agree 100% that yes, you do have a lot of emotional strength to move through your journey with not being able to have someone accompany you to doctor visits, radiation, ect. That is a lot on just your shoulders, and as you say, isolating. But you are doing it! And there’s a lot to be said for that.

Hopefully, with the Covid vaccine rolling out, we shouldn’t have many more months of distancing, and things will be opening up more fully. You still have a lot of good times ahead of you.

COVID VACCINES:

Just Google COVID ARM ...For those with lymphedema ( and we are all at risk) you may wnat to get PFIZER...only MODERNA lists covid arm as a side effet and I have it ( in my leg since I have BI LAT LE) Sure hope this helps someone.

After being diagnosed and going through the shock, surgery, etc, you finally seem to come through to the other side. Take a little more time to enjoy, having learned you never know what will happen next. This pandemic has stolen time, freedom, stolen the joy of just being around other people, seeing family, gabbing a bite, browsing in a store, even my favorite,,the beach has somewhat lost its appeal with masking up, Even now when you go by the beach you are reminded of the pandemic as it is one of our State vaccination site. Dr' visits feel impersonal, colder with wearing a mask. My onco visit was virtual last june. Sounds crazy but I really needed that reassurance of her examining me,,rather than just asking me via virutal how I'm doing. I had a breast mri in August..bad enough being face down, but a mask for the whole time I felt like I was suffocating. Like I said,,things that may have been hard enough to do before COVID , really got toug during.

I want to get back to living life, not just living in limbo, waiting on what is going to happen next with the pandemic. Cancer is enough to worry about what next. All control taken away again, throw in the politics of it all..soul sucking, life sucking and all around stinks!

Hoping that there is an end in sight sooner than later.

I was diagnosed last March the very week that my state was going into lock down. I was lucky enough to get in immediately with my MO and made a plan in the event Covid prevented the usual treatment plan. She also advised me strongly to have a lumpectomy instead of the BMX I wanted. Her thinking was to get into and out of the hospital as quickly as possible. It was during this time that NY was absolutely falling apart due to Covid cases and being completely overwhelmed. The fear was that our area and the hospital system could become the same way. I listed to her. Had an MRI (they had the national news on in the waiting room and I got to see the horror in NY...it did nothing for my already ramped up anxiety) and they found a second tumor. Luckily I was able to get in for the lumpectomy less than 3 weeks after my diagnosis. I started Letrozole in the even radiation had to be postponed. It didn't though so I just stopped it for radiation (under the direction of my RO). The fear was always present and really weighed on me that I may not get the treatment I needed due to Covid.

I was fortunate. My care was excellent and treatment not delayed at all. However, I will always be a bit bitter that I didn't get the BMX that I wanted. My plan had been to talk to my BS about it at my 6 month follow up. I didn't. My husband checked out emotionally/mentally after my diagnosis. I have gotten no support and no help. He has ignored my cries and pleas for the support I desperately need. He didn't even ask or notice any of my follow up appointments and ignore me when I cried about how hard radiation was on me emotionally. Then didn't even realize I finished radiation. No way am I putting myself through major surgery when I don't have the support I need. He failed me in every way this past year. Between Covid and my husband this journey was harder than it would have otherwise been. It has also been very lonely and scary because I went through it all alone. I never dreamed my husband of almost 35 years would desert me the way he has.

I had it done in MSK. I did not feel this way at all, it was crowded, but there were spaces in waiting room(11 floor) and i waited there 5 minutes. I was alone with a nurse when getting my shot. I was waiting 15 minutes after, again -there were people but on a distance.

In elevator there were 3 people.

I felt comfortable and actually said thank you there because of very efficient and quick organized way it was done.

going there on 13th for the second dose.

Just after I was diagnosed in fall 2019 I can very clearly remember going home early from work as I didn't feel very well and closing my locker and having a very strong sensation that it would be a long time before I opened it again. And I was right! Sacral fracture happened the next day and then I was on crutches for a few months and by the time I was able to start going back to the office a few days, Covid shut it all down. Ive seen the office four times since October 2019, but they were quick visits and now all the electronic locks are dead on the lockers so I can't open it anyway

Karen and I are in the same system and you can just tell its on survival mode. The first wave my cancer hospital had wards filled with Covid patients transferred in, which meant I couldn't get up to the chemo floor to have my bone injections so they were paused. All MO visits were phone only, though they did try to make it easy for the blood and zoladex by setting up a separate clinic in another building. There was a lot of miscommunication and "dont call us well call you". The govt told us all to shield (in fact, I think we are supposed to until end of March) but I could only get to the hospital on the bus or an Uber so...Im home most of the time anyway because there is no place to go.

I did opt out and switch MOs and into the private system (but within an NHS trust, in a "cold" hospital) and while now I see the same MO for longer every month and in person, I've never seen the bottom half of her face. Or my new MBC nurses face, etc. And we keep wanting to shake hands every monthly chat! I do have to sit a bit in the day patient waiting room sometimes while they pull my drugs, but its fairly well spaced, everyone is masked, and when the wait gets too long or the waiting room a bit full then they find a private room for me/others to wait. The MO still hasn't seen my original diagnostics or imagining because those hospitals were in some of the worst hit parts - while its not hugely important, it would be nice to see the changes!

I've tried to see the positive side of Covid in that it forced the WFH considerations and capabilities to the forefront of every business which, if you are still trying to work with MBC and are way off retirement age, is extremely helpful for now and the future. I wasn't really mobile before July anyway but it would have been nice to go on a real vacation last fall and certainly this winter. I've found I am becoming more impatient and frustrated about the situation the closer we get to "the end" even though that is a good few months away yet in the UK. I haven't seen my family in a year and a half and we are hoping for a trip home to the US in late June.

CM2020, I was following up on some of the posts and wanted to respond to your post. I am so sorry that your treatment course was determined in some way by your husband's checking out on you. The last couple years hard on our marriage and 2020 seemed to be a culmination of everything bad to the point that soon after my diagnosis I wanted a divorce. I felt we were so distant and had grown apart that I could cope better on my own. I gave him an ultimatum...be there for me or we were not together at all. I was surprised and very grateful that he was with me every step of the way after that. We have gone back to our "normal" lives and we are both still trying to make things be okay. I hate to think a cancer diagnosis was what it took to bring us back together but yit was. It could have gone the other way and been the final nail in the relationship. Looking back it would have been so tough to have navigated this process by myself so my heart goes out to you. I hope you find the support you deserve and need from other folks. I had few friends but have been humbled by the outpouring of concern from folks which I didn't expect to reach out. I hope you are doing better now with both health and home.

New here. I was also diagnosed during covid. Lockdown here was intense, our business was shuttered, the city was shut down and nobody went outside for months. I noticed something late summer 2020. Finally got appt to see my gp in Sept. School here (and my related job) was a disaster and we finally settled into a remote routine deep into Oct, so I FINALLY made my mammogram appt. Earliest was Dec. Call back was new years eve. Biopsy was scheduled for Jan 16. Diagnosed w covid Jan 12 (exposed at my preschool job. Covid is no joke. 2 weeks of low grade fever and intense cough. Even though I isolated as soon as I started feeling sick it was too late. My kids had fever and cough for a few days. My husband was SICK. 3 weeks fever and more of very terrible cough. He was in bed for a month). My biopsy was pushed back week by week. They kept saying I needed a negative pcr in order to have the biopsy. But no one knew why, as it's known that you can test positive for months. Finally I was allowed to have it in late Feb. I got my vaccine appointment for mid March.. Then a Mastectomy was scheduled for April 1, so vaccine had to be canceled. Then the testing really got going, I'm sure you are all familiar, Ct scans, MRIs, MRI guided biopsy, insurance wouldn't cover the PET scan so more ct and bone scans. March 29 my surgeon called me to say she was canceling the surgery and I should see the medical oncologist the following day instead. The scans show something in my sternum. I'm now on letrozole and Ibrance, although I keep having to take 2 week breaks instead of one, and my dose is now reduced to 75mg. I hope my body can take it. I feel pretty ok, a little tired and easily winded, but nothing unmanageable. But my ANC is always too low. (500 on day 15 each cycle). Oncologist said they will reasses with the surgeon after I've been in treatment for 6 months. Luckiky they were able to get me vaccinated before I started the ibrance. Everything feels so in the air. We are finally beginning to open up here, but I haven't been able to schedule anything personal because I can't predict when my 15 day and end cycle blood draws will be, or if/ when surgery will be, plus in so afraid of getting sick.

I also wish my husband would STOP telling people!!!!! Its MY body.

Ok, thanks for listening.