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Family Member- Dealing with emotions from initial diagnosis

Family Member- Dealing with emotions from initial diagnosis

Posted by Sam22 on Jul 21, 2020 2:24 pm

Hi All,

Looking for support, as a family member was diagnosed with Breast Sarcoma, very recently. In fact, the type of sarcoma and treatment plan have not been communicated yet. Waiting until July 28th for this appointment with the Oncologist team. It's the waiting that's agonizing and thinking the worst case scenario. I'm trying to put my mind in a positive state but I'm feeling very anxious and alone in dealing with all this. I also feel selfish, I'm not even the one suffering but I am hurting through it all. 

How do caregivers/family members live in the moment and try not to think the worst? I want to be supportive but I'm having trouble containing my emotions. Also, would love to connect with people dealing with Sarcoma and learn about their experiences. 

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by karend on Jul 21, 2020 3:47 pm

Sam, I just sent you a long reply somewhere in this site!!! I am horribly untechnical and as I was logging out, it took me to this page.
I think it was with the Wendy Tea comments.  You will see in there that I had angiosarcoma. Yes, it is very rare.  I don't know if that
is the type of cancer your sister has.  Please try to read the long message I sent you in the other post.  I am sorry I am so clueless,
this site is very confusing for me and it's not the site's fault --it's me.   Kind regards, Karen

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Lianne_adminCCS on Jul 21, 2020 5:11 pm

karend‍ 

You were kind enough to post on Sam22‍ 's profile here: https://cancerconnection.ca/profile/14866

Sam22‍  kudos for reaching out here.. It is very difficult for family to see our loved ones get a diagnosis.
It is hard not to jump to worst case scenarios but it is very hard on our mental health to do so. While the waiting is so difficult, it is best to wait to see what the oncologist says, and what treatment plan is recommended. With that solid information, it really does make it a little easier to understand and take o the actualities.
In the meantime, best to be a listening ear for your sister. Offer specific  help - like get grocers, or watch her kids ( assuming you are in each other's bubble right now ). No doubt her head is spinning to and trying to absorb all this new information. Just being her sister is more than enough right now. If you feel you are not handling it well, there is counselling available. Especially right now with covid too, there is a lot of it being offered for free. Once your sister is in the cancer clinic,  there is patient and family counseling available too. I found it very helpful with my own diagnosis.

Keep us posted
Lianne

I am sure you will hear from others too.

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Elsie13 on Jul 21, 2020 5:12 pm

Hello Sam22‍ and karend‍ . Glad to see you posting in cancerconnection discussions. 
How can caregivers be supportive when dealing with all those emotions?  Perhaps CentralAB‍ , Brighty‍ and jorola‍ can give some answers to this.
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Sam22 on Jul 21, 2020 6:21 pm

karend‍ I read your post and responded!! Thank you so much, means a lot :)

Lianne_adminCCS‍ Appreciate your note. I think I will look into counselling, as it helps me to talk through things with others and address my fears. 

This is a great community and with wonderful support! 

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Brighty on Jul 21, 2020 8:47 pm

Hi Sam22‍ .   Thank you for tagging me Elsie13‍ .     I'm so sorry you are struggling  with all these emotions.     I just want to assure you that everything you are feeling  is normal and not selfish at all.    Anxiety. ... yes. .. I felt it in spades too.     Having someone you love facing the unknown  is terrifying.   Not yet having  a treatment  plan....   And then you feel guilt for feeling this way. ..  because  you aren't the one going  through  cancer. ...but cancer affects everyone.      You might feel guilty that you aren't doing enough ...you might even feel grief....grieving the life you had before..the person she was before.    Anger. ...why is this happening  to us? ?? These emotions  are very challenging and it mt takes a lot of time to come to terms with what is.    
for myself,  to live in the moment,  I had to do a lot of self talk,  talk to myself in my head a lot... he's here's here now... he he has wonderful  doctors. . He's in good hands....what ever happens I am strong... I can do this... we will deal with things as they come... etc etc etc.... Sometimes  I lived minute by minute.   I was ok one minute  and in tears the next.    And it's ok to cry.    
I found thst being distracted helped me.   I kept the other parts of my life as normal  as possible.    Went to work, did my groceries and all the mundane things thst make life seem normal.      I got support wherever I could. .. social workers. .family ...the site. ..just to talk out my emotions  with others helped.   Especially  others in the same situation  who truly understood.      I finally asked for help.   You must know your limitations. ..what you can and can't handle.     You can't possibly  do everything  yourself or go through  this yourself and stay sane.      You will feel better once a treatment plan is in place.   You will feel that something is being done for you family member.          Please let us know how the appointment on July 28th goes.  Help her  prepare some questions to ask and see if they will let you be part of the appointments.. by phone .    Just be there.. your support and just your company will mean everything to your family member.   You don't have to be alone.    Help is out there.  You took the first step by reaching out.     Keep us updated  how things are going.     

 
Help is out there. All you have to do is reach out.

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by CentralAB on Jul 22, 2020 12:52 am

Welcome Sam22‍ Thank you for coming here to share your story, and the agony of waiting. I remember well the waiting and not knowing time during my wife's cancer and treatment. It sounds like you will get a clearer picture on what to deal with on Tuesday next week, so thats just a week away. If there are symptoms that are unmanageable then it would be time to see the doctor before next week to get some symptomatic relief.

As a caregiver for 5 years with my wife, I spent the waiting times of not knowing, with things that I did know. If I saw that she needed something, I would do that for her, or if I couldn't do something, Id find someone who could.

I think the one thing I would highly recommend to any caregiver, is to simply do what it takes to keep yourself strong enough to help your ailing family member. For example, I was really bad sometimes for not eating enough when I got really involved with her care, and so I had to make a special point to eat one meal per day that was really healthy, and I really felt a lot better after doing that. The other essential in self-care for the caregiver is to find some respite help so that you are not spending 24/7 in the house and tending to your family member's needs. I was able to find a caregiver to come in for a few hours at a time to give me a break, and then I would enjoy a nice hike in the woods. I found that if I did not do that on a given week, then i would feel much more worn out

There are many aspects to being a caregiver, and dealing with all the waiting. I found it was usually best to use that waiting time for what you do know, and the other stuff can be acted upon whenever you get more information. Are there any specific things you are wrestling with for the personal care at this point? We would be glad to comment more, as you are able to tell us more. You are most welcome to reply any time, and ask more questions.

Sam22:
Hi All,

Looking for support, as a family member was diagnosed with Breast Sarcoma, very recently. In fact, the type of sarcoma and treatment plan have not been communicated yet. Waiting until July 28th for this appointment with the Oncologist team. It's the waiting that's agonizing and thinking the worst case scenario. I'm trying to put my mind in a positive state but I'm feeling very anxious and alone in dealing with all this. I also feel selfish, I'm not even the one suffering but I am hurting through it all. 

How do caregivers/family members live in the moment and try not to think the worst? I want to be supportive but I'm having trouble containing my emotions. Also, would love to connect with people dealing with Sarcoma and learn about their experiences. 

 
________________ "there is always a little Light"

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Sam22 on Jul 22, 2020 10:40 am

Thank you for your support and kindness CentralAB‍ and Brighty‍ I feel like I'm grieving already and it may seem silly but those are the motions I'm currently going through. Did either of you seek professional counselling?  It's hard not to think the worst case scenario. I wonder what will happen to my nieces and nephew.They have their dad of course but just the thought of them having a sick mother or not having her makes me ill. I'm currently not living with my sister but if and when she needs me, I'll be there of course as hard as it is. I also have elderly parents that don't know anything yet and they have their own health issues and anxiety so I don't know how they're going to cope. I worry about looking after them as well. I'm the youngest child in my family and I've always played that support role. My sister's husband will be with her at the appointment (if they're allowing it with Covid) or maybe by phone. I've prepared a list of questions so hopefully that will help.  I'm also finding it really hard to eat like I'm forcing myself too and it's affecting me physically. I'm trying to fix that. 

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by CentralAB on Jul 22, 2020 11:34 am

Hi Sam22‍ It is actually something that happens to caregivers or others when they see a loved one that is very sick. Anticipatory grief would be the official label or name to call it. It is normal to experience grief when we see a loved one suffering. As far as counselling goes, I myself did not get any, but many people do, I guess it depends on how you feel you are coping, and if you think you would benefit from help that way. I can relate to grieving well before my wife died. I think it likely helped prepare me for when it did happen. Try smaller, more frequent snacks of stuff you really like, rather than worrying about big, full meals for now to get your eating on track better. Thats what worked for me. Please keep us posted how things are going.
________________ "there is always a little Light"

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Brighty on Jul 22, 2020 1:10 pm

Sam22‍    I also experienced anticipatory grief  the moment  my fiance was diagnosed.     Nothing was ever  the same  again .   I totally  can relate to your feelings.    I completely  fell apart and yes... I sought councelling.     I cried all the time.     I went to my family doctor  who gave me a referral.   I got into a day program  which focused on coping with anxiety. . CBT ... changing the thought process.and things like that....I also got one on one with a social worker and physhiayrist  daily.   My social worker  gave me solid coping strategies.     As well I popped in to the oncology  social worker almost daily too.        She let me cry my eyes out... and squeed me in to see her whenever she could.      I also couldn't eat.   I was too upset.      I found that things that were easy to digest were best... I even ate baby food.     I was too upset to have large meals .  I relied a lot on comfort foods at the time.    I personally found councelling  benefical .   I don't think I would have been  able to cope otherwise.     Start with your family  doctor for referrals.     You are not alone....we will be here to guide you through.      
Help is out there. All you have to do is reach out.

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Sam22 on Jul 22, 2020 5:17 pm

I took your suggestions and tried eating smaller snacks through the day which is helping. I also feel tired all the time from anxiety and lack of eating so I'm going to try to start exercising a bit. I had a great exercise regime before all this so I should try to stick to some form of a routine. I've looked up some social workers and Psychiatrists and will try to start that soon. Although, it will likely be a weekly or biweekly meeting as they are quite costly. My work insurance may cover to some extent. Are there any good social work programs that you know of in Toronto? Assuming the hospital will also provide mental care to patients and families. Thanks again for your ongoing support. You guys have been wonderful and I will keep you updated. 
 

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by Brighty on Jul 22, 2020 6:47 pm

Sam22‍  I am in Toronto  too.  I went to Mackenzie health to the day program.  I didnt pay... it was totally covered by OHIP.    I spoke to one of the social workers today actually  and she said they are doing  sessions  by zoom now.  You need a referral from your family doctor  to get in.
Help is out there. All you have to do is reach out.

Re: Family Member- Dealing with emotions from initial diagnosis

Posted by jorola on Jul 23, 2020 6:27 am

hi Sam22‍ 
I am a caregiver too. I also was very overwhelmed by emotions and the situation when my husband was initially diagnosed with lung cancer. I felt very guilty because I was a mess and my husband was the strong one. I had lost several family members to lung cancer already so I could think nothing but the worst case scenario (my husband is now cancer free by the way). To make matters worse I already suffered from chronic depression although it had been well controlled and stable....at least up until that point.
What helped me was going to my psychiatrist and counseling for support . However just going out with friends for 'cancer free' nights were awesome breaks and just plain good old fun that I needed in my life. Do you have any close friends or family members you can do this with? I know it is hard with covid but skype dates can be fun too.
I see my psychiatrist through Alberta Mental Health so he does not cost me a dime. Not sure if Ontario has something similar. However I am going to give you the link to the Community Service Locator. Enter in your city or postal code and you may be able to find similar services near you. Use this link - https://csl.cancer.ca/en
I know you are scared for your family member but you will find the strength you need to so you can support them on their journey. Sounds like you are already taking some positive steps. Each step counts!  Being on here, sharing your story and asking for help are awesome first steps. Asking for help takes great strength. 
Please continue to let us know how you are doing and never hesitate to ask a question, ok?

 
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