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end of the road

Started by Kirstie

13 Oct 2015, 4:35 PM

After 16 months of treatment, oncology unceremoniously told Gord that there was nothing more to be done for him. In all previous c.f. scans, his tumours were classified as stable. He had been having pain in his side and had gone to emergency. After I had left one evening, his oncologist came to see him and gave him the news. He was alone, in the middle of an observation ward. I was furious in the manner he was told. They couldn't have waited until I was there to support him?

He is already in palliative care, but is suffering from severe anxiety and depression. I just found our that one of the drugs that he is being giving has this as a side effect. I think they are giving him an astronomical dose - has anyone heard of a does of 64mg a day?

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Reply by Kirstie

13 Oct 2015, 4:37 PM

Sorry, forgot drug name, dexamethasone, a steroid drug.

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Reply by KathCull_admin

13 Oct 2015, 5:51 PM

Kirstie
It is good to hear from you again but I am sorry it is with such devastating news - and that he had to hear it while he was alone.

Regarding the dexamethasone - I wonder if you might find it helpful to send a question to Ask a Professional - they might have answers that would be helpful for you.

I am sure that other members will understand and support you.

Are you still working full time? How are the kids?

Katherine

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Reply by Carlyn

13 Oct 2015, 6:14 PM

Hi Kirstie,

I'm fairly new here myself but wanted to welcome you to the site and say hello. Your experience resonates with what my Mom experienced.

It's very upsetting to not be there when your loved one is given that news. I remember feeling the same as you. I'm glad you shared it. Getting that feeling of frustration out helps a lot. There's guilt too I know but this isn't your fault. If it helps, eventually, I realized the doctors are so busy and in and out all the time, it was impossible for me to be there for every moment and take care of everything else too. But definitely vent because it IS an awful feeling and experience to have.

About Gord's anxiety... have they prescribed any anxiety relieving medications? Those helped my Mom a lot but my experience was 8 years ago and I'm not sure how they handle this today. So much changes fast with advances in care in recent years. My Mom was also on dexamethasone but if memory serves it was for her appetite, to help her eat. She had anxiety already so she was on lowest dose of an anxiety med to help and it did work for her.

Katherine's link to asking the professionals is great! You need some solid answers and discussion too I think with a qualified medical person. But keep posting here too. Gord needs your support but you need support also and it's hard to remember that. This site is excellent for that so please don't hesitate.

If you feel comfortable, calling up Gord's doctor, even the nurse in charge, and asking them and trying to get ideas and discussion on this is worth trying too. I remember doing that. I felt guilty stopping them and pushing for attention but my Mom needed me to ease her fears and I needed answers to do that for her and be believable. Medications do interact and cause other symptoms. The priority is Gord's comfort and relief from suffering and for you to feel you're informed well so you feel good with decisions. Consulting professionals seems crucial right now.

I'm thinking of you and Gord. Vent here. It does help to get your feelings out. You need support to. We're here. Lots of fantastic people here.

((Hug))
Carlyn

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Reply by NatR

13 Oct 2015, 10:37 PM

Hello Kirstie,
glad that Katherine and Carlyn are sending you support. I haven't been regular lately myself. But I can affirm that Virtual Hospice has real support and advice for members.

venting is very important when you feel so alone when trying to support a loved one, and try to juggle daily life as well.

write when you feel like it, as that gets it out of your head and eases the thoughts that drive us all crazy

despite the anonymous nature of our posts, the stories are real and from the heart.

hang in there and send updates when you can
best wishes,
NatR 👍🏻😀

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Reply by JennJilks

14 Oct 2015, 12:38 AM

"They couldn't have waited until I was there to support him? "
I'm not defending, but when I think of all our oncologist does for us...
They have office hours, and rounds, and the fact that you saw him at all without an appointment is good.
Anxiety and depression is not surprising. It could be the disease trajectory as well as the Rx.
What you need to be asking is whether the Rx is important for him more than quality of life.
I'm so sorry for all you are going through. We have decided against radiation for these reasons.
We want quality of life, not quantity.
All the best. Keep us posted.

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Reply by Kirstie

14 Oct 2015, 2:44 AM

He is taking remeron, nozinan and serax for the anxiety and depression. It has reduced him to basically a walking zombie. He is so drugged up. When I visit him (I am there 8-10 hours a day) he barely speaks to me. Just stares out the window. I find this so sad. It is bad enough that he doesn't have a whole lot of time, but to be so zonked that he can't even enjoy it. He is still mobile and the pain is under control, it's just the damn anxiety. If we can get it under control with him still being somewhat alert, I am taking him home. But t he way it is now, I would be terrified that he would hurt himself in the house. Gord has also explained that he is constantly thinking about suicide - and I would be afraid to leave him alone. Between working (7am to 1 pm) then running over to hospital, and now my husband having completely changed character, I am slowly cracking. I just want my sweet, smart-assed, loving husband back, at least for the time we have left. It is driving me crazy that he can't look me in the eye, and stiffens when I try and hug him. What a difference a month can make. And as for my anger with the oncologist - we had a meeting in his office 4 days prior because of the pain Gord was experiencing. He prescribed some meds - they didn't do the trick which is why we went to emergency. He already knew then that there was nothing more they would do, he should have told us then. It would have been a little more humane.

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Reply by Carlyn

14 Oct 2015, 8:31 PM

((Kirstie))

Your concerns are important and you need to get those addressed somehow I think.

Medical input on this seems crucial just now. It could alleviate your concerns and it's worth a try to ask.

If you can't reach his oncologist or prefer not to try that doctor just now, do you have a family doctor? Or is there a nurse you could speak with? Nurses are excellent too and sometimes come up with an end run idea that works beautifully; they're a great support too emotionally, help you process things mentally and emotionally, to understand what's happening and why.

I had similar situation with my parents at different times in their care for rare cancers. I asked anyone I could think of on the medical team - family doctor came through in a big way sometimes for things like anxiety and emotional support, advice, calming, etc.

Please try. You can do this and it's ok to go back to medical pros and keep asking questions. If you're still unsure, the link Katherine posted about to ask a professional on this site would be a great start maybe?

Let us know how things go regardless or if you need any help as to where to start with this. I'm wondering how you're doing and we want to help. I'm so sorry for what you're both going through. This is a very difficult time and it's normal to be upset.

Carlyn

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Reply by Nouce

18 Oct 2015, 5:37 PM

Kristie,

The meds issue is so frustrating and complicated. Pablo took dexamethasone briefly during chemo but the side efffects were so disastrous they immediately took him off of it.

I'm thankful that the doctor in the care facility where Pablo lives now has taken him off nearly all medications except as needed for comfort care. But comfort for anxiety matters. I agree with the others who suggest that a wider consultation would help.

I hold up te light that some people may surround you with care, as you sort your way through.

Nouce

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Reply by JennJilks

18 Oct 2015, 7:39 PM

Kristie,

I agree, you need more information.
He is taking remeron, nozinan and serax
Do you know the pharmacist who is filling the prescription, if it isn't in the hospital.
Otherwise, your regular pharmacist could talk to you about these, and any contraindications.
They are pretty good, in my experience.
JJ

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