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Diagnosis and palliative care 2 days later

Diagnosis and palliative care 2 days later

Posted by Kkfan on Jun 12, 2020 12:44 pm

I am so overwhelmed with my husband's diagnosis. Happening so fast

Re: Diagnosis and palliative care 2 days later

Posted by Brighty on Jun 12, 2020 1:46 pm

Kkfan‍  hi and welcome.    So sorry.. what type of diagoses did hubby get? 
Help is out there. All you have to do is reach out.

Re: Diagnosis and palliative care 2 days later

Posted by Kkfan on Jun 12, 2020 4:12 pm

Started with bronchitis, we thought. Lung cancer which has all ready spread to bones and other organs 

Re: Diagnosis and palliative care 2 days later

Posted by Runner Girl on Jun 12, 2020 4:20 pm

Kkfan‍ ,

I am so sorry to read of your husband's diagnosis.  

What sort of palliative care is he being given?  

Perhaps a few of our lung cancer folks can join the conversation WestCoastSailor‍ , Faye‍ , Cynthia Mac‍ 

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Diagnosis and palliative care 2 days later

Posted by Cynthia Mac on Jun 12, 2020 6:36 pm

Kkfan‍ , I'm caregiver to my dad who is in palliative treatment for lung cancer that has spread to his liver.  

A lot will happen very quickly, based on my experience. You've found a safe place to ask questions and vent your feelings. Ask away. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Diagnosis and palliative care 2 days later

Posted by WestCoastSailor on Jun 12, 2020 7:25 pm

Wow. Kkfan‍ That is fast. I still have to bug my doctor to talk about palliative care. But 18 months ago I went through fast with my late wife. Six weeks from diagnosis to death in hospice.

I know the feeling of the world being out of control. And I know how important the hard conversations are. And making memories. Just the telling people can be a challenge in itself.

I'm making  the assumption that palliative care is in place because they are not attempting any treatment. But know that in our case palliative care was a blessing. They made pain management possible and made our limited time together precious and important.

Are there any questions that we can help you with?

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

Re: Diagnosis and palliative care 2 days later

Posted by Lacey_adminCCS on Jun 12, 2020 7:33 pm

Kkfan

I'm sorry. Things must feel so overwhelming and scary right now. 

You have met some great folks here. We are here to walk beside you through this. 

Hugs, 
Lacey 

Re: Diagnosis and palliative care 2 days later

Posted by Faye on Jun 12, 2020 9:01 pm

Kkfan‍ 

I am so sorry for your husbands diagnosis.
I understand how overwhelming this will be for you both.
Please post here if you need support from those of us who have travelled the cancer diagnosis journey.

I am a lung cancer patient but fortunately to date it is non metastatic but do understand your fear.

Faye
 

Re: Diagnosis and palliative care 2 days later

Posted by Kkfan on Jun 12, 2020 9:44 pm

I have so much fear and anger, and with covid complicating everything, we both feel very alone. His care has been amazing, but such a roller coaster. We were told it was throughout his body and referred to palliative. Then, after a bone scan, his thoracic surgeon said no, not in his bones. We had such hope for 10 days. Lung biopsy was done and the radiologist called to say yes, it was in his bones. We crashed back to earth quickly. Palliative has told me what to say when I call the final ambulance. Just too quick, but we both understand that quality of life is important also. I spend a lot of time just being strong for him. I know I am needing to look after me, but it's hard 

Re: Diagnosis and palliative care 2 days later

Posted by Lianne_adminCCS on Jun 15, 2020 4:58 pm

Kkfan‍ 

I m so sorry to hear of your husband's diagnosis and how quickly things are moving along. I am glad you reached out to us. Many of us know all too well how this disease can change a family.

Please continue to reach out here as you need.  We will be here to support you as best we can.

Hugs
Lianne

Re: Diagnosis and palliative care 2 days later

Posted by Clover4 on Jun 16, 2020 9:26 am

Kkfan‍ 

So sorry for you as you receive and cope with the difficult news.

Sending you and your husband a warm and comforting hug right now :)

Talking about it here can really help 🌹

🍀

Re: Diagnosis and palliative care 2 days later

Posted by WestCoastSailor on Jun 16, 2020 12:36 pm

Kkfan‍ 

So common it has a name - we call it the Emotional Roller Coaster. There are some pretty steep drops and some tough curves in the cancer Coaster.

I found when looking after my wife, I wanted to do it all myself. I couldn't. I needed breaks. I had my own cancer treatment going on so I had to make space for that. I had to look after myself. Eating was a challenge for me. Who wants to make a meal when you have been in hospice for twelve hours with an hour drive on either end? Sleeping was a challenge. Thoughts charging through my head, all the things that need to be done. And exercising definitely took a stern talking to get myself going. Yet to be present for her I needed to do all these things. Self care isn't selfish. It is what allows us to process and truly help in this time.

I thought there was a publication for Caregivers but I guess not. But looking for it reminded me that there is a great  pdf on the CCS site called "Advanced Cancer" https://www.cancer.ca/~/media/cancer.ca/CW/publications/Advanced%20cancer/32043-1-NO.pdf There are some great suggestions and good processes to help with the challenges.

Have you had the "hard and difficult" discussions yet?

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

Re: Diagnosis and palliative care 2 days later

Posted by VioletFlower on Jun 16, 2020 9:50 pm

Oh, Kkfan‍  I can’t imagine how difficult this must be for you and your family. I’m sitting on pins and needles waiting to hear if my sons cancer has spread to his bones as he just started chemo. I try my best not to think that it has until I’m told it has.
Here is a general handbook on becoming a caregiver for your husband.
https://www.cancer.ca/en/cancer-information/living-with-cancer/caregiving/?region=on

My thoughts and hugs go out to you.

His Drs will put everything in place for you.

Re: Diagnosis and palliative care 2 days later

Posted by Kuching on Jun 17, 2020 8:23 am

Kkfan‍ , there is a small book called A Caregiver’s Guide that is available free from a lot of hospice and palliative care programs.  Your social worker should be able to get you one.  It covers everything from dealing with your emotional state to how to get a patient from a bed to a wheelchair.  Won’t solve your problems, but it might make life a little easier.  Hang in there, try not to get overwhelmed.  I know, easy to say, not so easy to do.  

Re: Diagnosis and palliative care 2 days later

Posted by Lacey_adminCCS on Jun 17, 2020 12:59 pm

Kkfan‍ 

I just wanted to let you know I am also thinking of you. I'm glad you have connected with all the great folks above. I'd also like to introduce you to Vox‍ and Miss Ing‍.

We also just released a webinar End of life and palliative care in the time of COVID-19 I hope you find it helpful. You can also view our webinar library here.

Hugs,
Lacey