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Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxi...

Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by maplepower on Aug 20, 2020 1:53 pm

Hi. I am 2.5 years post diagnosis for stage 2b breast cancer. I am taking my letrozole and trying to carry on with life, but every little bump and ache terrifies me. Is it back? Has it spread? 

Now I have an enlarged thyroid gland with swollen lymph nodes in my neck and pain in my jaw and ear. My doctor referred me for an “Urgent” ct scan, but I just found out that our provincial health care system is currently working on the MAY backlog of “Urgent” cases! I can expect to wait about 2 months they said. 

Ya. This is an emotional roller coaster all right. 

My lump, statistically speaking, is probably not cancer so I don’t want to go to urgent care and bump someone who may really have cancer. But I cannot live with the not knowing. Will it be too far gone in two months to treat successfully? Is it nothing? I am left with a feeling of having lost control of my life and I have become profoundly hopeless. I’m exhausted from waiting for the other shoe to drop. It feels like now the only way I can control my life is to end it - when I choose and on my terms. I’ve been giving people the things I want them to have. Cleaning out the clutter. Fixing up the house for sale. 

Covid-19 may not kill me, but what about all the diagnostic and treatment delays that are happening?! How can I just sit here feeling my lump grow (and I do feel the pressure it causes constantly - wish I could forget about it) and live life today? I’m too depressed! Yes, I want to live but I also want control over my life and death. And I do not accept being put in a cattle queue to find out if it is over for me. 

How does everyone live with the constant uncertainty? The never ending fear? These excruciatingly painfully waits for tests and treatment during the pandemic? I honestly don’t know if I have the heart for this. 

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Danae on Aug 21, 2020 8:08 am

Hi maplepower‍ 
​​​​​​Can you go to the ER and complain about your pain and pressure? I assume that they will run some tests and with your history maybe a CT?
In which province are you? Maybe there is a way to work around it. Lacey_adminCCS‍  maybe has some resources that can help. Please do no be afraid to reach out for help in your community or here.
I hope today is a better day.
​​​​​

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Kuching on Aug 21, 2020 8:33 am

Dear maplepower‍ , you say you are thinking of ending it all.  Please don’t!!!  You have been cancer free for 2.5 years, and you are almost certainly still cancer free.  You are half way to the magic 5 year mark.  It would be pretty silly to end it when, chances are, you are perfectly healthy!  

Yes, the waiting is really hard.  And once you have been diagnosed with cancer, every ache and pain makes you think it has spread.  That’s perfectly normal, and very stressful.  We have all been there.  But, 99% of the time, everything is fine.  Do you really want to end your life for a 1% chance?  PLEASE, hang in there and wait to get that scan done.  And if you just can’t, then tell your doctor you need to go on the REALLY urgent list, not just the average urgent one.  Ask for a referral to a psychologist.  Talk to a good friend.  And don’t sell the house!  

Just hang in there.  You have already been through so much, don’t give up now.  We are all here to help you through this.

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Lianne_Moderator on Aug 21, 2020 9:46 am

maplepower‍ 

I am glad you reached out. That is not always easy to do.  I am so sorry you are feeling these overwhelming thoughts. Many of us understand the feelings that you  are experiencing Life after having cancer can definitely be fraught with emotional ups and downs and uncertainty..
You have heard some wonderful responses from Kuching‍  and Danae‍  and I hope you feel their support and caring.
You are 2.5 years post treatment. That is certainly something to be celebrated.

You say "Yes I want to live" so that is excellent, but having thoughts of suicide is very serious. I want to give you a phone number for a crisis line Crisis Care Canada can be reached 24/7 at 1-833-456-4566 .. I urge you to call them .. Is your GP someone you can also share these thoughts with? Are they someone you would be comfortable talking with?

I am going to send you a private message in a couple of minutes. Please look out for that and I look forward to hearing back from you.

Lianne

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by IamJay on Aug 21, 2020 10:09 am

Hi maplepower‍ 
I've learned that there are two ways to access help. One through your family doctor and one through the oncologist. The family doctor route tends to have longer wait lists for scans and biopsy results etc. Have you gone back to the oncology team with your concern? I suspect they would be a faster option for testing etc. Just a thought. 
It's so hard not to panic isn't it? Can you find some distractions to help pass the time?
Hold on tight....the ride isn't over yet.
J

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Wendy Tea on Aug 21, 2020 10:22 am

maplepower‍  You have received great advice. Sometimes words just aren't enough. I hear your frustration.  I became severely depressed when I was on Letrozole.  I could barely form sentences.  I called my nurse hotline and after she connected with my oncologist,  I was told to immediately stop taking Letrozole.  Within days I started feeling better and was able to handle all the medical issues that kept coming my way. 
No one really knows what causes these feelings of despair.  It might be due to meds, or overwhelming issues,  covid-19 restrictions,  hormones,  or a variety of other issues. Please reach out to your team. I want to hear from you to let me know what happens next. I am cheering you on.
Healing takes time and opportunity. Wendy Tea

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Mammabear on Aug 21, 2020 10:41 am

Sad to say this feeling of anxiety is very common for cancer patients. Most bottle the fear up and don't verbalize it so good for you to be able to express the fear.
Most cancer agencies (if not all) have counselling services. A cancer diagnosis is traumatic and you have PTSD. 
Hang in there. If you can't wait, go to urgent care and get the scan. Don't think of it as bumping someone in more need, you ARE in need. The need to know is real. 
Keep us posted because we are all here for you. 

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Kims1961 on Aug 21, 2020 11:39 am

Dear maplepower‍ 

Thank you for reaching out and for the courage to share how you are doing.  Sometimes these powerful emotions are too much, but some people may try to repress them rather than express them.  You have some excellent responses and am hoping you are feeling less alone, less scared.

Much like you, i am 2.5 years from my cancer diagnoses and am on Tamoxifen.  Letrozole caused me difficult side effects so i had to change.  For sure, I feel like you do - when a lump, bump or ache pops up.  Add COVID into the mix and life has definitely become more complicated.  I found for my anxiety, I spoke with my family doctor.  Sometimes mental health feelings are connected to our medications and certainly by the impact of treatment.  Sometimes a good overall physical is helpful, or a look at the meds you are on.  Your doctor or oncologist would be really helpful here. There are also some excellent counsellors out there and sometimes medication is needed .  I do feel the mental health journey needs more attention from our health care professionals - but its hard for them to diagnosis as we can present so well on the “outside”.

The Crisis numbers are there for all of us.  Sometimes when we just can’t distract our thoughts - its well worth debriefing with a counsellor. It’s safe and anonymous - they also may be able to lead us to where we can get help.  There are some online tools as well that are sponsored

https://bouncebackontario.ca/.  A program sponsored by Canadian Mental Health
https://togetherall.com/en-ca/ - 

Both of these links offer free support and links to other professionals if wanted.  

Thank you for your courage, you may have also helped others on this site, who are also looking for this info.  If you feel up to it, please let us know how you are doing.

Kim



 
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by MCoaster on Aug 21, 2020 12:54 pm

maplepower‍ Thank you for reaching out to us.   Your post has touched many here and I hope that knowing this may help you to feel a little less alone.  

You talk of giving your things to others.   Have you also spoken to them of how desperate you are feeling?   Often we cast ourselves in a role of putting our own needs behind of others and those others are not aware of how we feel because of this.    Whether your feelings are because of medication, past experiences or present situations etc. they are based in fact and are very real so please do not fear that your are taking a place from someone in the system.    

You are a special person who needs to know that, so please, please know that we here for you and please also get in touch with whomever you feel comfortable with, be  they professionals or friends including your new ones here and share with them.

Many of us here also have pets who offer so much love and support so please give your little one a hug from me.  

I care and send a big hug and lots of warm thoughts.

Margaret / MCoaster





 

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by WestCoastSailor on Aug 21, 2020 12:57 pm

maplepower‍ 

You would have to be a stone to not feel the fear that cancer brings into your life. Reaching out here is a huge step. Terrifying to lift those concrete galoshes and say out loud "I need help." Saying it here may make it easier to say it to the people in a position to change things. Rest assured that there is a team of resources that can walk with you. Keep saying it till you are heard. Explore the medications. Talk to the oncologist, GP, social workers, a trusted friend or partner. So much good advice already given.

"How do I live with the constant uncertainty?" So easy to ask. So hard to answer with resorting to cliches and tropes. I'm not a doctor and I'm only speaking from my lived experience.

I think the answer lies in "Living." I'm a terminal cancer patient. How soon will the grim reaper drop by? I don't know. All I know is that they are on their way. So I live while I can. Some might call my life small. I have only left the five block radius of my house a few times since March. But I had a Zoom birthday party a few weeks ago attended by friends and family literally from around the world. I choose a theme of "Adventure" for my year in January little realizing that it would be curtailed by a pandemic - covid-19 response. I've been using everyone else's inability to travel to my advantage. Virtual travel, exploring the world of watercolor, creating poetry to capture my experiences, and making new friends. Refusing to be defined by my cancer diagnosis. I have no idea what your interests are but I encourage you to explore them. Distraction works.

Eat well, sleep well, exercise are underrated in the medical world of drugs and physical interventions. Between the lines of your post, I heard a strong will to live. Harness it as motivation. And know that we are here to listen as you struggle with it. Thank you for sharing with us and reminding us where we come from.

Angus
My story: http://journey.anguspratt.ca

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Goodtogo on Aug 21, 2020 7:14 pm

Hello Maplepower
   I hope by now you have gleaned from the advice offered previously that so many people are very concerned for you & your well being. Cancer sucks. Let’s just put that out there for starters.  I too suffered from the will/ wish to just end the torture, the mental anguish, the bottomless pit of  depression that comes from a cancer diagnosis and yes, successful treatment. It truly is PTSD isn’t it ? 
    The pressure that the lump in your thyroid area is causing sounds very distressing to me. How can you distract yourself when this pressure is always there? Please get yourself to Urgent Care if you have not already done. Eliminating the worry of that acute issue may give you the clarity to revisit your situation. Be gentle with yourself. I’m cancer free as far as I know since my surgeries in March & April of 2017. Every day, every single day is an opportunity to find the way through your torment. I am finding that exercise... just simple walks, short bike rides, & gardening .... is helping me tremendously. I  do not sleep well. I make myself recite my gratitude list each night as I lay in bed as a kind of meditation and I swear to God, this one act gives me such peace. Try it. I count this group among the precious items for which I am most thankful. It it here that you can find love & support. It is here that you can be your true version of you. You’ve helped people you don’t even know by your honesty. Give yourself some love. 
                                                   Joy

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Goodtogo on Aug 21, 2020 7:36 pm

Maple power, 
I suggest you look up the website “Living Beyond Breast Cancer” and have a read of this article. It’s helpful. Read more content about fear of recurrence from Living Beyond Breast Cancer including our Guide to Understanding Fear of Recurrence. If you would like to speak with a person who has been in a similar situation, try the LBBC Breast Cancer Helpline to be matched with a volunteer.      Joy

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Essjay on Aug 21, 2020 7:50 pm

maplepower‍ I’m so glad you trusted us with your worries and posted your fears and feelings. So many of us can relate...

I’m a two-year breast cancer survivor myself and just back to civilization after a 6-day backpack in the Canadian Rockies with my partner. 

My post cancer mantra for life is to ‘wear out, not rust out’. I’m living the best life I can, working hard, volunteering hard, exercising hard, spending quality time with friends and family. If cancer comes back and takes me I want people to be able to say ‘she lived life to the full’.

Every morning I’m grateful to be here, and I try to find 3 things to be grateful for each day before I go to sleep.

Like you I’ve had my worries about things going on with my body since my treatment. My colon’s messed up so that must be colon cancer, my shoulders troubling me so that must be Mets, I have a cough so it must be in my lungs...

Your thyroid needs checking out and I agree with everyone else that if it helps to get answers through urgent care, then do it for peace of mind...

It could be anything, an infection, an overactive thyroid, a cancer, at this stage you just don’t know and that’s terrifying...

I hope you get some answers very soon.

please know that we are in your corner and we are listening.

best wishes. Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Kuching on Aug 23, 2020 9:50 am

Hey, maplepower‍ , thinking of you and wondering how you are doing today.  Hugs from sunny Ontario - although we had a hell of a thunderstorm here last night.  Please let us know that you are OK.

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by LLG on Aug 23, 2020 10:09 pm

maplepower,

How are you feeling today?  

Hope you are having a better day.

Caring thoughts are with you.

LLG

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by maplepower on Aug 27, 2020 3:38 am

Thank you all for your kind and resourceful responses. I am touched by your understanding and kindness. I apologize for not responding sooner. It was very inconsiderate of me. I have now read all of your responses, and I am very glad that I did so.

I'm going to be okay... this time... and will work to find the support and resources I need for the "next time". I'll read more of other discussions and join some topics, too. So much wisdom on these pages. I hope that some day I can contribute some of that wisdom myself. 

Blessings to you all.

Susan

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Lacey_Moderator on Aug 27, 2020 10:10 am

maplepower‍ 

Susan,

Nice to hear from you. It's okay to wait until you are ready to respond, we are always here. I'm glad you found it helpful to read the responses you got.

You found your way through it this time, and you are building up your resources for next time. That is all we can do. Each time we go through something we grow more resilient and put tools in our toolbox for next time. It took strength and self awareness to reach out. Reaching out also helps others see they are not alone-thank you.

Have you had a chance to read the Let's discuss...fear of recurrence thread? We also just posted a webinar this week Fear of cancer recurrence during COVID-19. I think you will find both helpful.

Glad to have you as part of our community on good days and bad.

Lacey

 

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Cynthia Mac on Aug 27, 2020 2:34 pm

maplepower‍ , I’m a bit late to the discussion to be of much help, but I am relieved to hear that you’re having a better day today.

My favourite author has a saying I’ve adopted and used on many dark days. It is, “A thought is a thought, and a thought can be changed.”

I think that deep down inside, you know you want to stay with “us.” I truly believe that it’s no accident that you chose a username with “power” in it.

PS: Just so you know, I’m pretty sure there is no requirement that there be a “next time.”  “This time” could be your “last time.” That is something within your power, I think.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by MCoaster on Aug 27, 2020 3:57 pm

maplepower‍  
Hello Susan.
It was so good to read your last post and know that our responses helped.  It is a scary world out there and certainly my personal experience is that sharing our concerns and knowledge is more important than  ever.   Your reaching out and  sharing your wisdom about how you feel is already important to our general pool of wisdom and will help others.  

I think of this community as an important part of my “cancer toolbox” along with family and pets, my garden, meditation and mindfulness all of which are readily available should there be “next” days.   I highly recommend a 🧰 ​​​​​​.

Kind thoughts to another community member.

MCoaster


 

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Kuching on Aug 28, 2020 8:30 am

maplepower‍ , I was so glad to see your name on the list of posts this morning!  I was getting worried!  So happy to know that you are feeling more positive about things.  You have a whole bunch of friends here who will always listen, and who will truly understand what you are going through.  
Hugs,
Kuching

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Ann66 on Sep 1, 2020 1:47 am

I'm so sorry they are making you wait for this test. This is unacceptable so my suggestion would be to just go straight into an ER department and see one of the ER doctor's. If you go in after midnight, they may do one while your there. Demand they do something now as it's causing you severe distress!!! Don't give up either, you gotta keep going. You can get through this. 

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Lianne_Moderator on Sep 10, 2020 5:09 pm

Hello maplepower‍ 

Just checking in to see how you are doing and if there are any updates with the tests ?

Thinking of you

Lianne

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Lacey_Moderator on Sep 10, 2020 5:10 pm

maplepower‍ 

Just checking in X2.

I hope you are doing okay,
Lacey

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by triplepos on Sep 10, 2020 7:34 pm

maplepower‍ 
Hi. I hope you are reading these posts. I go have suicidal thoughts and from what I gather they are more common than not. I try to think of the most happiest things in my life. Me. My son and Grand daughter. I would be robbing them of a fantastic woman should I choose the easiest path. From my education on cancer it takes 3-5 years for a cell to split and grow into a microscopic cell that can be seen by the pathologist.  I have a superficial cyst and the growth was extremely quick. I know that my experiences are no where near what you are going through and for people to not hear you is very difficult. I get that a lot. I left messages and phoned after a while I became strong e l ohhh to allow people to really hear me. I went from a two month wait list to having a test in 2 days. I became the controller. Make your life important. There are so many beautiful things in this world to see. I hope hat you are not discouraged and that you phone them back and get them to understand how important you getting in is. You are not a number and you matter. I hope you are still there and read this 

Re: Trigger warning: suicidal thoughts... COVID-19 caused delays in testing - can’t take the anxiety of the unknown

Posted by Cynthia Mac on Sep 11, 2020 10:10 am

triplepos‍ , you make a very valid point. So often, people who want to die by suicide don’t think about the wave of heartache they would leave behind for their loved ones. I had a grandparent and a brother-in-law both die by suicide, and it leaves so many questions in the minds of the loved ones. I was angry at my BIL for years. He had a brilliant mind, and he thought the world of me as a SIL, yet he did that. Eventually I was able to move on, but it took a lot of time.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying