The following posting was accidentally deleted. I have reposted it, as we could retrieve the information.

Simone (CVH Discussion Forum Moderator)

Handling emotional roller coaster?
Started by cpenjm
On 23 Aug 2018, 2:25 PM 

"How do people handle the crazy ups and downs of advanced cancer? My husband is 35 and has advanced metastatic melanoma. He's almost died a couple times then made amazing comebacks. Just a week ago it was like he didn't have cancer at all -- we went for a great bike ride. Then this weekend his pain came back significantly (he has bone mets in his spine) and two days ago he had his first grand mal seizure (he had whole brain radiation and a craniotomy about 6 months ago).

I thought cancer would be a constant decline. But instead things get really bad, then better, then really bad again, then better. It's exhausting. We don't have any other family members in the province and I keep thinking "This is not what I thought my 20s would be like..." and despairing over what I thought life WOULD be like -- we were going to get engaged this summer, we'd get married next summer, we wanted 2 kids, he was starting to look for work for when he finished his post-doc ... Instead I am caring for my husband (we had a shotgun wedding earlier this summer) and constantly worrying what next thing will go wrong and how I will handle it (brain mets? lungs? spine? paralysis? seizures? can't breathe?). 

So how do you deal with the huge swings in emotion and circumstances??"

RESPONSE FROM ANOTHER DISCUSSION FORUM USER:

I thought I would connect with you in hopes of validating your experience and trying to somehow explain how we normalize this insanely abnormal experience.

Details;

Katie - diagnosed at 26 with breast cancer with no family history. Many surgeries and treatments led to 4 years of remission then nine days before our wedding (put together in three months because my father-in-law was diagnosed with stage 4 lung cancer and died eight weeks before our wedding) we found out I was terminal at 31 years old.

I've been together with my husband for 12 years and married for three.

Cancer is now through my entire skeleton (bones), liver, lungs and cranium. I have 2 fractures in my pelvis, a compression fracture in my spine, I have a numb face from nerve damage/pain and walk with a cane/a walker.

Cancer also robbed us of having kids.

Needless to say, I get it.

I was lucky to be stable for 2.5 years with a clinical trial from the onset of my mets diagnosis however this summer has been jammed packed with progression, scans, pain, treatment and stress.

When I have 'good' days which means I get some sleep (kind of a rare occassion), my pain is 'low', I don't have endless appointments, I don't feel death is imminent, and I don't have the urge to share every ounce of fear with my husband - we try to do normal things like go for a walk, go grocery shopping, talk about fantasy land in which I can work, we could have children, we get to travel as much as we'd like, etc. Those days normalize things a little - they are few and far between but we appreciate them. We have learned that we are constantly in the process of mourning the life we thought we would lead. It is an ongoing struggle.

We find it helpful to have something to look forward to - a reward of sorts (although I do recognize the impossibility of planning for the future when it is so unpredictable). We like to travel so even a weekend getaway will get us through a month of garbage news (I mean, within reason).

Gratitude - if someone said to me 'you need to be grateful whilst dealing with cancer for the last eight years, three of which have been terminal', I think I would have raged. However, I started a 100 Days of Gratitude Youtube project that ended on my seven year cancerversary in March and it kind of changed everything. I learned that being upset, sad, mournful, full of grief/fear and anxiety aren't mutually exclusive from being grateful - they can coexist.

Connect with other youngins - check out Young Adult Cancer Canada. I can guarantee it's not all 'and how does that make you feel?'.

Find a therapist - a good one. Ask at your hospital for one who focuses in oncology/palliative. Talking to a third party can be a game changer. Often they can be funded, too.

As mentioned before, find a way to mourn/grieve the life you thought you would live. Trying to live/create a life that isn't possible leads to resentment, frustration and further pain. Acceptance can often be a hurdle.

So importantly, take care of yourself - I transcribed a conversation I had with my husband re: your post. Here's our chat...

Me: 'How do you deal with the rollercoaster, the swings in emotion, the constant blows of cancer?'

Him: 'It's the opposite of how you feel it should be. I feel as though I should be spending as much time with you as I possibly can while I can but you have to take care of yourself in order to take care of your spouse. Find an activity you enjoy doing, a hobby you used to do that is entirely separate from cancer and that allows you to put your energy and focus into it for an hour, a day, once a month. For me, that's golf.'

Me: 'How do you give yourself permission to do that?'

'It took somebody telling me - asking me the question, 'what do you do for you and only you' and I had no answer. It's kind of like quality over quantity - it's so much better to be there and be present rather than going through the motions but having so much caregiver fatigue that emotionally you are exhausted because you don't take care of yourself.'

Reach out as you need me. 
Xo
Katie