When you are diagnosed with cancer, the focus is often on the physical side of your illness- on symptoms, treatment choices, side effects and what the test results show. But your emotional health- your feelings and how you cope with them over time is also important. It deserves as much care as your physical health. Emotional health is equally as important for caregivers.
How are you doing? What helps you cope?
Has your ability to cope changed over time?
@Lacey_Moderator Lacey hits this right on the head . Your emotional and just plain mental health is so very important in dealing with this.
This may also help. For me I kept hearing that I was in palliative care from my Doctors and to tell the truth I was getting uncomfortable hearing it. I looked up the definition :Palliative (pal-lee-uh-tiv) care is treatment of the discomfort, symptoms, and stress of serious illness. You receive palliative care at the same time that you’re receiving treatments for your illness.
So don't let that word stress you out ( like me ) or bring you down. I hope this helps,
After I was told that my cancer was back both in my leg and in my rib, I decided that this time, I would be strong and live my life as normally as I could. And I did…for the most part. I kept on teaching, walking or simply doing the things I wanted and loved. Suddenly, after 6 months of treatment, the pain started; excruciating pain in my leg and my foot (numb but painful). Now, the fact that I can't sleep, am in pain and was sent to the palliative care really took a toll on me. I am still trying for my family but I find it really hard as I can't do all the ordinary things. I feel like a burden. It is a terrible feeling and I think I may need to see someone.
I read the little booklet Lacey mentions when I was sitting in the cancer centre waiting for treatment, or a doctor visit I don't remember. I read all the little booklets they have. The points it makes are mostly things we already know (common sense) and so non-specific that they aren't really helpful.
Best advice for coping is talk to family and friends - being alone makes things harder
@Dave58 - Such a good point! Thank you for sharing it is definitely helpful there are a lot of misconceptions about palliative care and it can be so helpful.
@Julie44 -Thank you for trusting our community to share how you are feelings. Insomnia paired with pain must be so overwhelming. If you are looking for someone to talk to please call our Cancer Information Helpline and they can help you find some support. You can reach them at 1-888-939-3333. We are here for you too, talk to us anytime.
@JMS- Thank you for your feedback. When going through an experience like cancer it can be helpful for some to review the basics that help us cope. We also have some additional supportive information available here: Coping with changes | Canadian Cancer Society
great discussion @Lacey_Moderator
in my experience, emotional health was never a consideration by any caregiver I encountered in the ‘system’, or quite frankly, by myself during my cancer diagnosis and treatments. as I am a #covidcancer patient, I was just happy that my health providers were in the same room with me….ha ha ha….never once was my mental health addressed.
a recent biopsy & ongoing health issues make me realize, (over a year past tx), that my mental health needs some attention also.
thanks to the support I get from these forums I have registered for an online mental health study that I am hopeful will give me some tools to cope with some of my anxiety.
it is such a comfort to know that my feelings are not unique in any way; and to have the support of my cancer connection pals is GOLD.
cancer is a tough gig.
@Lacey_Moderator emotional health,mental health and physical health all goes together. It's all part of overal health. Every part affects each other . As a caregiver my emotional health did suffer a lot and a result my physical health suffered. I didn't eat properly, cried a lot ,lost a ton of weight and was constantly stressed and worried. I sought out therapy from the oncology social worker as well as a group therapy. My mom yelled at his family on my behalf step up and help out. I wasn't good at asking for help. But once I got help and his family got involved things got a lot easier. I also sought out grief councelling after he passed. When I fell back into a depression again recently I got help again. I'm now getting CBT for my anxiety. Whenever I feel that sadness coming I will reach out again before the dark hole engulfs me. I'll never be ashamed to keep getting therapy and reaching out whenever i need it. Mental and emotional well being is crucial for overall well being. Never neglect it , nip it in the bud as soon as you feel it's taking over. Don't let it!!!!!
@supersu @Brighty Such awesome info and support from everyone ! Just WOW ! PLEASE don't let mental health be a stigma. It's real and potentially as dangerous as the situation you're dealing with. I've been there and it's not fun. I've taken CBT and it's a very good course. You have to do the “ work ” for it to have a good positive effect but it helps immensely . If you suffer, we all suffer PLEASE reach out to us, we actually do care and want to help. No question or concern is invalid. Message me if you just need and ear,, rant or whatever.
@Lacey_Moderator this is a large part of cancer and important to discuss.
I started a downturn in mental health in March 2017 when my younger sister/best friend was diagnosed with Breast cancer in her right breast. It was stage 3. The sadness with every treatment, every test was exhausting for her but for all of her family too. Chemo made her sick each time, radiation hurt, the DIEP surgery she had was so painful, she had a year of fevers, night sweats, and a deep sadness. She had 3 teen daughters and they were traumatized with the unfolding of this disease. She was told in the summer of 2018 that she was cancer free. we all sighed in relief. Then a few weeks later a devastating blow, the cancer was back in liver this time. She only had a few weeks to have some happiness before the return of cancer. The entire family’s mental health was stomped on, from my parents, to her children, to me, but especially her. Hopes of life, hopes of a future, hopes of time vanished. She passed away in palliative care at a hospital with her 3 daughters on cots around her bed, my dad sleeping in the chair and my mom and I were the ones awake at 2:34 AM holding her hands when she passed. It is strange how I had always thought my mom would be the one who would be most crushed when she passed. Instead, she was our rock, as all of us crumbled around her.
The cancer experience didn’t not stop with my sister’s death. Two months later my uncle passed from lung cancer. Then 6 months after my sister passed I was diagnosed with breast cancer(same right side like my sister). Saying cancer is an emotional roller coaster is so true. Just when you think things are finally bouncing back, cancer jumps back into your life.
My cancer diagnosis brought a feeling of despair. My worries about going through the same situation as my sister made me and my family scared. It only took about 2 ½ weeks before I had bilateral mastectomy (DIEP), not much time to dwell on decisions. This was most likely a good thing for my mental health, I had no time to think on it, just react, rush around, get blood work done, buy abdominal binders and triangle pillows. I guess distraction is my strategy for keeping my sadness at bay.
Since the surgery (Sept 16, 2019) my mental health has been continually getting worse. After all the treatments and hospital visits for a huge infection, I felt abandoned from my cancer team when I was passed off to my family doctor. I was still in pain, I had nodules on my lungs, and I was so scared to let my guard down for fear of cancer returning. Especially when you hear the words “margins were unclear” after the surgery. Not a day goes by that I don't get really worried about cancer. Currently, I am on a waiting list for surgery - full hysterectomy - to deal with a mass in my uterus and the fibroid and the ovarian cysts that give me daily pain. Mentally I am worried all the time. I have made a good friend from this CancerCare website and she helps me to see things in a positive light. Since distraction helps me emotionally I have taught myself to knit, crochet and my latest project is sewing. These things help to relax me and they keep my hands busy. Other ways to deal with mental health is connecting with others who have experienced cancer as well. It is good to see that you are not the only one dealing with cancer. It is also helpful to have a place to ask questions. This website is a life saver for calming me down when I have pressing questions.
Overall, grief, worries, depression, anxiety are ever present but I can lean on others to help me through.
Such an important discussion that i feel needs as much attention as our physical health. When i was diagnosed with cancer- the focus was on treatments , symptoms, symptom management and really only 1 question was asked - How is your anxiety? I was too anxious to respond! I didn’t know how to rate my anxiety!
I would like to see mental health discussed from the very beginning of a diagnosis. I’m afraid there seems to be stigma around talking about mental health -like the term “palliative” as @Dave58 mentioned. At the same time we are given info about symptom management, we should be given tools to help with anxiety, depression - what to look for, who to call….
@Julie44 , @Lacey_Moderator has some great suggestions. Also your family doctor, cancer centre, local community perhaps - have access to social workers that can be very helpful for someone to talk to. Reaching out for help is a sign we are taking care of ourselves. Cancer impacts both - physical and mental health.
It was hard for me to reach out and say that i needed help. My family tried, but I also didn’t want them to carry this worry. My doctor was amazing - i had a referral for counselling and i am on medications. I realized sometimes in being strong, I also had to be vulnerable.
Thank you for this great post and to those who have contributed.
@Kims1961 In part you mentioned you didn't want to burden your family with your situation. Family, burdened or not actually WANT to be right in there with you. Sure you may see hurt on their faces or hear it in their voices but let them go through it with you. They need an outlet too. Their resilient, just sit down and have an open discussion with them. You just may be surprised 😊
@Ten_minutes Hi. I'm so very sorry you're going through all of this and no doubt have been hit extremely hard by cancer. Always get clear answers that make sense to YOU. You may even have to juggle your cancer team around to find a good fit. It's ok because it's YOUR team. Worry is natural and I would say don't until there's something to worry about but that impossible. That's where a GOOD councilor or even Psychiatrist come in. I've have both and find them to be an amazing part of my life and journey through cancer. We're always here for you !!!
@Lacey_Moderator Thank for starting this discussion. None of the doctors discussed my mental health during my cancer treatments. Everyone was upbeat and hopeful and I am so greatful to the medical professionals who cared for me during my active treatments. About four months after radiation all my feelings came flooding in like a tidal wave. Now that I wasn’t busy with appointments and not travelling to the hospital everyday, I felt sad, depressed, lonely, and I realized that I was grieving. I was finally feeling all the emotions of how cancer had affected me and will continue to affect me in the future. Because of the Covid pandemic, hospital run support groups and wellness programs have been temporarily suspended or moved to virtual supports. I felt so very isolated, and I still do. I knew that I needed to reach out to the social worker at my hospital for help. I also reached out to my family doctor for help. Even though my appointments were on the telephone, reaching out for support and making a plan on how to improve my mood was so helpful.
I want to add that I was the first person in my virtual cancer support group to admit that I was having mental health problems and was feeling depressed. Once I said that several others said that they too had reached out to social workers and therapists to address their mental health. There is still stigma out there so I want to encourage everyone to talk about mental health. Our mental health is as important as our physical health and shouldn’t be taken for granted. Thank you to this wonderful community for supporting me since my diagnosis.
@Lacey_Moderator what a great discussion and what fantastic responses from people. It really does highlight how everyone's journey and circumstances are unique and yet we still benefit from shared experiences. This community really is amazing.
When I was first diagnosed with breast cancer following my screening mammogram, all I wanted to do was retreat. I didn't want to tell too many people and just needed to get myself treated and move on with my life. I didn't want to be seen as a cancer patient, but rather a person who happened to have cancer. At this point, I was not offered counselling services and to be honest, I am not sure I would have taken them up on it even if it was. I am generally a “glass is half full” kind of person and was grateful that my cancer was found early and was very treatable and I did have a few people that I trusted.
Fast forward four months when I was also diagnosed with early stage ovarian cancer (this was another primary cancer). I had surgery which was followed by chemo. At this point I was offered counselling services. I guess they figure if you get hit twice in such a short period time, your mental health might suffer. Again, with my glass half full attitude, I was ready to tackle whatever needed to be done. I did decline counselling at that time, because I had excellent support from my family and some really good friends and they were very in tune with my mental health.
When I got out of fight mode this was when I was worried about the potential for some mental health issues. I was afraid this was the point when all of what had happened to me in the course of 11 months would come crashing down on me. I decided to set up an appointment with the Social Worker before this happened to discuss strategies to prevent this from happening or to help me should it occur. I did do this and she really was extremely helpful and the door was open if I needed to see her again.
While I was going through chemo, my former co-workers had organized a card group. Every two or three days, I would get a different card in the mail. Some were inspirational and some were funny. I looked forward to the mail every day. The cards were on display in our family room and on my tough days I would look at the “wall of support” and felt I could carry on. My husband, bless him, saw there was one week when no cards had arrived so he slipped one into the mail from him. I am very fortunate to have had great network of support in both my care team, and my personal team.
I recognize that everyone's support may look different but please do what you need to do to help you cope with this disease. There is no shame in seeking counselling to help you through this.
@JustJan Hi Jan, I fully understand how you felt getting the cards. I have a VERY close friend in the states that sends me random photos he's taken where ever he happens to go. I look forward to these so much. LOL a couple were accidentally sent of when he replaced the water pump in his well. I enjoyed those too. They give me a sense of freedom and I'm always looking forward to getting the next “ installment ” .
thank you so much for your support and kind words in response to my post.
I agree with you 100% - there should be NO STIGMA attached to mental health concerns….and in my case I think my health care team was just so focused on getting thru the pandemic with me AND themselves alive at the end of it all, that honestly they didn't have the emotional capacity to add on ONE MORE THING…..ha ha ha
I have heard that cancer treatment is very different throughout the pandemic--and as a health care worker myself, I know just how strained the system is. a system run by ordinary humans who themselves are stressed to the max…..ugh….COVID is changing us all.
I am totally cool.
I am more surprised than anything that I have any thoughts/feelings about my mental health. I was pretty sure that I had gotten thru this crazy process unscathed, but have actually come to realize that ‘cancer’ is now part of my DNA, and I have fallout that I am dealing with on both physical and emotional levels.
I do have a great family doc who checks in on me frequently…..as I have become a professional patient!! if I ever thought things were going sideways, she would the first person I reached out to.
this whole cancer gig is a hard one!
I would like to mirror your super generous offer back at 'cha---you are going thru some heavy stuff, and tho we are in different ‘clubs’ I am always available, (thanks broken foot), (for the next 4 weeks anyhow), for conversation & someone to shoot the breeze with.
I have said many times this community got me thru #covidcancer; and I am delighted to continue to make cancer connections as I move thru my story. thanks again for being a pal.
But mental health is an ongoing process, and as I still experience pain and continuing side effects, my feelings of being isolated by COVID and abandoned by the medical profession threaten to overwhelm me again. As a result, I signed on for the same study that was mentioned by supersu and for the next 8 weeks will renew my focus on my mental well-being. I’m calling it my refresher course. I agree with Birch15 that our mental health is as important as our physical health and should always be part of any cancer treatment discussion. But it seems that there is still much the medical world needs to do for this be the norm.
it is beautiful here in alberta, I hope it is the same for you wherever you are!
thanks for the shout out re: the study…..I have already worked thru module 1 and am looking forward to the rest of the course.
@S2020 was the one to share that information; thank you again S for that. this illustrates exactly why these forums are so special…..at least two of us have benefitted directly and tangibly from your post. YEAH….. the connection is real.
have a great weekend littlebeth…..
#cancerconnectioniscommunity #peersupport #mentalhealthishealth
It is beautiful here, too, in the Niagara Region in southern Ontario. Great way to start a long weekend and good for the spirit. I have learned so much from these forums and participated in a number of activities that were first suggested here. The support is unending and so appreciated.
Thanks @S2020 for suggesting the CanCope study.
Enjoy the sunshine!
Emotional health is a very important area for discussion. Thank you @Lacey_Moderator for mentioning it.
I was mentally numb dealing with oral/ throat pain and the inability to swallow during my bout of tongue cancer in 2018. Fortunately, I was refered to a ‘food’ counsellor, who specialized in eating challenges, via The Cancer Centre in Victoria, which has the most talented group of empathetic staff and Patient Navigators.
I also learned that my depression is a common recovery side effect after head and neck radiation, of which I had 36 rounds of the ‘zapper’. What a relief to learn I was actually recovering ‘normally’.
But, my greatest mental challenge was accepting help from caregivers, friends, communicating and learning from this gift of the CancerConnection site, BUT feeling so wimpy for being unable to tough out the fight by myself. I am always an independent gal, so I had to learn how to ask for and accept loving caregiving. It actually allowed me to form stronger bonds and communicate far better with everyone. It was a very positive outcome from this Cancer Beast.
Thank you both for your posts and for mentioning the CanCope study. I would very much like to be part of this if it’s beneficial to improving my mental health and can teach me ways to cope better. Can you elaborate on what you think about the study and has it helped you both in tangible ways?
thanks for the inquiry---I cannot answer any of your questions! ha ha
I just started….it is a study based in Australia I think
so far I have had a 10 minute conversation with the intake person and worked through a unit on healthy lifestyle.
will it help to improve my mental health - I'm not sure!
but so far it is a very convenient, (virtual), way to dip my toes into the mental health care water. I had been dismissed from the cancer centre where I was treated at my 6 month check-up, and I work full time so this seems like a good place for me to start.
The CanCope study is designed for cancer patients who have completed treatment and is offered through Monash University in Melbourne, Australia. There are two streams - Mind and Lifestyle. If you decide to participate you will be randomly assigned to one of those streams. When you complete that one, however, you will also be offered the other so you won’t miss out.
I was assigned to the ”Mind” program which helps you build better coping skills to deal with the difficult emotions you face when you finish treatment. I have only been doing it a few days but I am finding it quite insightful already. “Lifestyle” focuses on eating, exercise, relaxation and sleep.
The study is free and each stream has 4 modules lasting 8 weeks with daily “homework” that you can choose to complete.
You can get more information and join, if you wish, at www.CanCope.weebly.com
Hope this helps!
Thank you so much for the information on CanCope. I’m glad that you’re finding it insightful. It sounds like a wonderful program that I would be interested in participating in. I am currently dealing with the difficult emotions after active cancer treatment that the program addresses and I think it would be very helpful for me.
great recap littlebeth!
I am in the lifestyle stream….and as I joked to the research assistant; I could probably write the modules myself. 😂
diet, exercise, relax & sleep – I actually know what is recommended--my issues are I throw all sensible behaviour out the window when I am stressed out--hello #pizzagintherapy.
we shall see if these modules somehow entice me to actually cope more sensibly!
I am really looking forward to accessing the mind modules - as I think that is truly the support I will benefit from most---any which way, I am so happy for the information and feel so privileged that I have the means to access.
birch15 - I hope you can hop on and get involved in the study. I hear ya re: emotions after treatment. I was caught completely by surprise that I actually had some…..a lifetime of putting on a ‘good face’ to the world def caught up with me here!!
have a great weekend you two!
Im two days away from my first chemo treatment. And honestly inside i'm not ok. I have cried and got emotional support from family. But they don't know what to say and im sick of hearing ‘im strong’ I hate it actually. I just got a call from the BC CANCER that I have counselling Oct 21…. what do you do in meantime?
Ive made it this far by “being strong” and I will continue to keep trying to be strong. So I don't know what to expect, all the appointments, the mental prep doesn't prepare you for anything. Its all a distraction. And BAM you start chemo. And all I keep thinking about are my kids, who will see me go through this. They don't deserve this, I don't deserve this 😓 So I will say at least I have this forum, for these kinds of days. Thank you all for sharing your stories. Your all warriors in my books, I will be brave too, I have to……
I hope you are feeling a bit better this morning.
it's a lot. thank you for naming that part of your story. your post will help others to realize that it is OK to not be OK.
this community helped me through my roughest days when I was isolated, scared, and lonely through my breast cancer treatments last summer in the thick of COVID.
I am glad that you have found us so that we can help you too.
you are right, no one deserves cancer. but your family wants to be there with you - let them support you, as you would support them if the tables were turned.
enjoy today. and look forward to tomorrow: a great day to kick your cancers butt!
This is such a helpful conversation - thank you to everyone for sharing. My husband is just finishing round 4 of 8 - GIACAPOX for colon cancer - and it's rocking our world. As he says, it's taken all the joy out of his life except for his family (me and our two kiddos) and his friends. Luckily he has us, but the days feel dark when so much is riding on our shoulders. Mental health support is absent from his chemo treatments in BC, and there isn't much they can do for the side effects from his regime. I've sought some out on my own, and on our own dime. We do try to focus on the moments of good, the sun when it shines, some laughs and games with the kids, Ted Lasso (comedy show), it all helps. A good cry is really useful. I've also recently discovered the podcast Everything Happens with Kate Bowler and highly recommend it and her.
I'm going to suggest the CanCope study to him.
Take care everyone.
Thanks for this great discussion. It's so helpful to read everyone's responses. Sorry I'm so late to reply.
I'm just over a year post treatment and I'm doing ok most days. I find the things that help me cope are talking with friends, being with my family, going outside for walks and being in nature. I have always been one to stop and smell the roses, but now it's even more meaningful. After treatment, I was so intent on ‘getting back to normal’ whatever that is. I know that I'm not my old self, but that is ok. I feel like a new me. I'm slowly learning what that is.
Sometimes the fear of recurrence comes back when I have an appointment or have unusual aches and pains. I know things will always be different with my health, but I still try to stay as active as I can. I think it helps me. I get tired more easily than I used to, so we plan for rest breaks when we are hiking or doing outdoor activities. My husband and kids are so supportive and understanding when I say that I need to take a break or go to bed early. I don't like it. Sometimes I try to push through to show them that I'm ok, but I'm learning that they are happy to stop and take a break if it means I am ok.
I'm getting better at coping with the fear of recurrence. I think it will always be there, but I can take a breath and take one day at a time, one appointment at a time. I still find that waiting for results is hard. Time seems to stand still then.
My question to everyone is: Do you tell new people about your cancer journey? How do you tell them? How do you approach it in a work situation (with taking time off for appointments)?
I struggle with this. With most new people I feel like it doesn't matter. They don't really need to know unless it comes up in conversation somehow. At work, my coworkers know because they supported me through my cancer journey. But what if I start a new job? Would you share that with new coworkers?
Thanks for listening. :)