I just lie in bed and cry

janky · July 2018

Amica - so happy to hear that it went as well as it did these boards are wonderful, and I am so glad for the support and response to questions!

Have a great weekend everyone!!

couragement · July 2018

WOO HOO, Living large indeed! You did it. I am thrilled you are not in a lot of pain, that the nurses and the radiologist were nice, and that you have more treats than you can eat. What good choices . Way to go, friend. You did great. You got yourself there, had the procedure, and your strong life force is leading the way by helping you take care of yourself.

Glad to hear they got plenty of samples and that testing is happening soon.I think you might be right that they give themselves more time by saying 10 days.

Rest up, watch a good show, and get some good sleep tonight if you aren't too uncomfortable (maybe a little of residual sedative will help!). That's your job now, healing up.

Sending love and care!

Amica · July 2018

This weekend I have no fighting spirit left. I feel desolate and feel like I can't fight this.

I hadn't updated this particular thread, but I got my pathology results and it indicated my original cancer had metastasized to the lymph node. I will know more I hope as more tests are run,to see where else it has spread. I just can't face all this all over again. I know I have to but right now I feel like I can't

vampeyes · July 2018

Amica, I am so sorry it has turned out to be mets. {HUGS}. I have faith you will find the strength to kick this cancer's butt! We are here for you anytime you need us. 💞

Micmel · July 2018

amica~deep breaths. One day at a time.. much much love ~M~

ksusan · July 2018

Although "metastasis to the lymph node" is the technical term, this is different from metastasis to another area of the body (stage IV). It may not have spread beyond the node. Best of luck.

oxygen18 · July 2018

Amica,

Ksusan makes a good point, I had some nodal involvement and it sometimes was referred to as metastasis, SO annoooyyiiing, I kept flushing that from memory.

You might consider looking into support groups at local hospitals. Those can be amazingly beneficial.

Amica · July 2018

thanks all for your replies.

The pathology report says "positive for metastatic adenocarcinoma with primary breast origin." So that is what I know so far. I will find out if it has spread elsewhere with further tests that I hope they run.

My family doctor seems so inefficient, she is slow in sending the Cancer Center my past treatment records, all of which she got from me. I wish I could just send them directly to the Cancer Center myself since she seems so confused. I just have to keep phoning her office and making a pest of myself. I will feel some peace when I finally get an appointment at the regional Cancer Centre and this has been handed off to the experts.

thanks again,

Amica

oxygen18 · July 2018

This is frustrating, I am so sorry. You are absolutely not being a pest, good for you for ensuring they are sending the records. I don't know what it's like in Canada, but I give copies of records directly to whoever needs them.

A few days delay isn't likely to make a difference, but still, this is urgent. While waiting for scans etc., perhaps you could line up a medical oncologist appointment, in case it takes a while to get one.

I'd also make every effort to get out of the house and get some air and some exercise, to keep your immune system and your endorphins up.

Amica · July 2018

Oxygen18

thanks for the good advice. I'm calling my doctor's office today to try to get them to send the necessary info to the Cancer Center. I don't think I can send it myself, since I don't even have the referral yet, that is what my family doctor's office is supposed to be working on. If I ever get an appointment, then I would assume I can take hard copies of some of my past records and hand them over. It seems important that they know what treatments I had in the past, because I know some treatments cannot be repeated.

I had been doing pretty well in at least forcing myself out for a daily walk, but Sunday was bad, I laid in bed. I feel the same way today. It is just a way to escape what is going on, so I can doze off, listen to podcasts, and not have to think about what I am experiencing. Since the biopsy the lump below my collarbone has ballooned in size which bothers me a lot. My family doctor looked at it, and said that she did not think it was a problem, that it was due to the biopsy, but I do not trust her judgment. But there is nothing I can do. I don't think the emergency room would even deal with this issue.

In Canada, you can't pick your own medical oncologist. I mean, I can't just phone an office and make an appointment. There are not many options. In my area there is one regional Cancer Center and you're stuck with it. At the Cancer Center I will be assigned an oncologist I hope, and then I hope they will start ordering scans to see where else the cancer has spread. Right now I have so little faith in the Ontario healthcare system, and am afraid they will not do necessary tests or they will cut corners because they their system is so underfunded. And the staff are so often rude and rushed I find it stressful. It's like you are fighting the disease, but also fighting the staff just to get treatment. But it is what it is.

take care,

Amica

vlnrph · July 2018

By all means, get out for walks while the weather is decent (winter will arrive eventually!)

Even here in the US, it seems as though sometimes the health care system plagues us along with whatever disease we're fighting. I think you have to be a little bit of a pest because who else is going to speak up for you?

Watch that balloon shaped lymph node - it's probably just doing a good job of filtration but if it gets hot or you start running a fever, off to the ER with you. Infections can spread quickly and create an abcess or cellulitis...

Amica · July 2018

thanks vlnrph,

Yes I've been taking my temperature, and so far that area is not hot or painful. Years ago on my first go round I had cellulitis under my arm where I had a bunch of lymph nodes removed, and had the drain, and that ballooned up very quickly, so I know what it looks like.

I appreciate your support! Tomorrow I'll go for a walk

take care,

Amica

Amica · August 2018

I can't cope.

I don't how how the rest of you do it. It's not the idea of perishing it's all the pain, and procedures, how to get places, struggling with the bureaucracy, and dealing with my 94-year-old Dad.

All I had was a core biopsy on my collarbone and I have had pain all over my upper body since. I had trouble tolerating that supposedly easy procedure, let alone what lies ahead.

Amica

janky · August 2018

Amica - you need to see someone else, another GP even! There are many, many anti anxiety meds out there, that aren't 'addictive', or even counselling through a cancer center? I think that most of us struggle with pain issues and there is help for that too - please look into a different medical team, starting with your GP! Because my neutrophils were soo lowat the start of my Ibrance cycle I had to delay 2-3 weeks between cycles and that made me quite stressed, my gp gave me a script for 10 mg of Citalopram and things balanced out after 3 weeks or so...best of luck!!! Janice

Amica · August 2018

thanks janky

I will try to access support services at the cancer center. my first appointment there is next week.

take care,

Amica

MuddlingThrough · August 2018

Amica, ask if your oncologist/cancer center has a Patient Navigator or Patient Advocate. We met mine at our first visit before even deciding where to get treatment. She could put me in touch with anyone I need and she would keep after the doctor to get it done if his signature or a prescription were required. Find this person and put him or her to work for you. Also, my insurance company has a department for patients to call for help. I have a nurse from there who calls me to see how things are going. Maybe your insurancecompany has this?

For your elderly dad, see if your city has an Agency on Aging. When I became too ill to take meals to my dad who lived in another town, I got in touch with the agency in his town for Meals on Wheels but they had many other services available. We had lined up some home health CNA visits but he had to be hospitalized before they started. The agency had a variety of services from transportation to doctors or other errands, some house cleaning help, meals and others. I didn't know about it until desperation led me to a google search. (My sister took him to a nice nursing home in her town, hundreds of miles away when we all realized my serious diagnosis. I'll likely never see him again, but I know he's safe and looked after and she visits him several times a week.)

As to getting through tests and treatments...yes, they often hurt or are gross, at least for me. Yes, they are a pain in the a$$ to have to go to and endure. It is 70 miles, one way, to my oncology center. Some side effects are pretty bad but they can help with some of them. You'll find lots of tips and tricks on this site in the forums that pertain to your situation. I've only had my diagnosis since January but I've already done things I always said I'd "never" do. At first I often thought about stopping any treatments and letting nature take its course. If I had, it would have been my choice. Now that I am feeling better and only have to go to the cancer center once a month, I'm glad I went through it all. With stage 4 cancer, I know this calm time can turn quickly but I have hope that it will remain stable or even get to NED someday. I don't envy other BC patients with other stages because it is all awful, but keep in mind there is usually a good chance to get to the "other side" of the cancer except stage 4. Hopefully they're working on that for us stage 4 patients :-)

I will endure until I can't anymore. I'm thankful for the new treatments we have and the research that is going on all the time. Maybe "THE" answer will come about in my lifetime. Maybe not. I will always have choices.

Amica · August 2018

Thanks Muddlingthrough

I checked, they don't have Patient Navigators at the Juravinski Cancer Centre where I my first appointment is, only for Aboriginal people.

I will ask them at the first appointment who is available to help me navigate the system, but I think I already know the answer: it's on me.

The wait for my first appointment is interminable.

Amica

Pi-Xi · August 2018

Oh dear, Amica. Hang in there. Hugs.

Amica · September 2018

I am so depressed and defeated by all this I am at my wit's end. I have tried to transfer to a better cancer centre with more services---have been turned down each time. I can't get a second opinion - turned down, they are too busy. The psychosocial services at my Cancer center consisted of ONE visit with a social worker --- that's the limit. I don't understand my diagnosis . I don't trust my oncologist. She is mean and nasty. I have never been more depressed. I can't do this.

vampeyes · September 2018

Oh Amica I am so sorry you are going through this. I didn't like my oncologist either, but was lucky enough to transfer. Have you tried Toronto or London?

xxx

Amica · September 2018

I have tried two big ones in Toronto, and got No from both. But I do not think my doctors are going to be willing to give out any more second opinion referrals. My oncologist flat out refused, and my family doctor seems to have reached her limit. She was extremely snippy with me when she called to let me know that another center refused,and she said that I was using too many services that other patients could use, using more than my fair share, like I had booked a social worker at my cancer hospital and also at my family practice's social worker. The thing is, as I noted, my cancer hospital only let me see a social worker ONE time, So I feel I did nothing wrong in also asking to see a social worker at my family doctors.( which also has limit on visits.) The fact that she resented that and thought I was hogging services so to speak hurt my feelings. How much psychosocial support can you get in one visit?

Vampeyes---did you have to move in order to transfer? That seems to be the only way. And I can't move because I live with my 94 year old father and he is not going to move at his age. In what city were you able to transfer to?, if you don't mind me asking.

I can ask for another onocologist at the center I am at, but they will not let me pick one, and I am afraid I'll end up with someone even worse. It's not just that I don't like this onc, I don't trust her clinical judgment.

I can try to get an online opinion from Cleveland Clinic for $565 U.S. but it involves lots of hurdles, for example my original scans are in different cities many different hospitals, and Cleveland wants the original pathology slides, and I don't know if an Ontario hospital will give me my slides or they will say they are their property.

I am running out of energy for all of this, after making endless phone calls in the moring, I spent the whole day in bed, so I think I have reached my psychological limit. Most people on here seem very strong and positive. I am not strong or positive. You can only fight the system and push so much, until you realize you are not getting anywhere and need to give up. The system squashed me like a little bug and that is that.

janky · September 2018

Amica - I just replied to you in a different thread as well - so, sadly, I can see from this one that you really don't seem to have many options, Though not a huge centre I have access to Occupational Therapy, Counselling, Nursing staff that respond when I have questions etc. Maybe you should move to Alberta I do hope you are able to get some assistance as it should be out there somewhere?! What part of Ontario Best of luck and health!

Amica · September 2018

Hi Janky - thanks for replying. I'm in Southern Ontario, near Toronto. I seem to have ended up at a Cancer Center that simply doesn't have a lot of resources. Although on the internet they make it sound like they do offer some, in real life, when you actually try to access some of these resources you find out they don't exist, or it's a one-time visit only.

I talked to someone at the Ontario Patient Ombudsman office today and she suggested I phone the two large cancer centers in Toronto that refused me, and speak to their Patient Relations Departments and see if I might get somewhere that way. So I did that, and will wait and see what they say.

I just lie in bed and cry

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