Relief at the diagnosis

[GliderGuider]

Last edited Thu Apr 13, 2017, 04:46 PM - Edit history (1)

My 64 year old wife has just (10 days ago) been diagnosed with ovarian cancer. She hasn't been staged yet, but from the ultrasound, a Ca125 of 870 and the obvious (in retrospect) symptoms that have been building for over a year, it's probably advanced stage 3.

Complicating the picture are her other ailments - severe fibromyalgia; a raft of allergies and sensitivities of all types including to drugs; diabetes; 150 lb overweight; a bad thyroid and two bum knees. Aside from our love, her quality of life has been crap for the last five years, and she has often expressed a desire to be done with it. We've both done a metric boatload of inner work over the years (non-dualist stuff) and neither of us is at all uncomfortable with the thought of death.

She has decided, with my complete support and understanding, to refuse all treatment except palliative care at home, and maybe some fluid drainage if required. Her decision was made easier because given her other conditions she's not a candidate for surgery, and chemo would probably kill her outright. Neither of us expects the process to take long. So it goes.

We're basically urban hermits - we have no children, no close families, and both of us live the bulk of our social lives on line - so there is very little personal support to call on. Luckily we're in Canada, so the safety nets for this kind of thing are said to be quite good, both medically for her and psychologically for me. We'll be finding out soon, I guess. But as far as personal caregiving goes, I'm it. It's a burden I take on with open, loving eyes.

What's most remarkable to me so far is the relief, joy and clarity that the diagnosis has brought to her life. The burden of responsibility for making the decision to leave has been lifted from her shoulders. Fate has taken matters out of her hands, and she is delighted by that lightening of her load. Her clarity comes from knowing that there is a definite, imminent outcome - release - in contrast to the laborious, pointless slog that her life was just a couple of short weeks ago. She is finding closure.

For me, this has sharpened everything to an exceedingly fine point. This is where the rubber meets the road - where we discover who we really are and what love really means. It has also become utterly obvious what things matter and what things don't. I used to doubt my ability to be an adult, even at 66 years of age. Not any more.

We've known each other since 1972, but lost contact from the early 80s until 2010. Neither of us can figure out why we didn't connect romantically way back then, because when we did re-connect it was like an explosion of homecoming joy, or a key going into a well-oiled lock. We call our love an example of "twin flames" - one soul that is split between two bodies. So for both of us it feels like she's simply "going home from school" a bit ahead of me.

This is my fifth marriage. I think I married so often because I was always looking for her. At the same time, I was learning what I would need to know in order to do this. This is the first time in my life I have truly loved, and been loved. To have had seven years of it is a blessing beyond measure. I pray that I will be equal to what is now being asked in return.

I don't think I'm asking for any advice here, I'm just glad to have found a place where I can talk about it. I give my deepest thanks to everyone who reads this.

[safeinOhio]

1. Best of luck

my heart goes out to both of you.

[PoindexterOglethorpe]

2. Thank you for posting this.

My sister died recently, and while her health issues were quite different from your wife's, she did have a number of them. She had long had DNR orders, and the most recent hospitalizations she had a wrist band that had AND, for A Natural Death. She was only 70, far too young, but she was ready to go.

The closest thing to advice I'm going to offer is that if caring for her becomes too much, do get help. Home nurse, hospital, nursing home, hospice, whatever makes the most sense.

I will also add that in the past two months of her life my sister had four separate hospital admissions, and the staff at that hospital were entirely wonderful. It was the fourth one, that didn't initially seem too serious that turned out to be the final one. After two days she took an extreme turn for the worst and it was over rather quickly.

To me, it's a good thing to know the end is near, as it is for your wife. You clearly feel the same way.

[Lint Head]

3. She is courageous and so are you. Peace

[True Dough]

4. Warm wishes, GliderGuider

My sympathies on the diagnosis. I absolutely respect each person's choice as to how their lives should end.

Which province do you reside in? Hopefully palliative care is not stretched to the limits where you are. Have you looked into a local hospice organization where you live? Having a volunteer stop by once or twice a week would give you an opportunity to get out and stretch your legs or collect your thoughts. This could be a long haul not only for your wife, but for you as well. As much as you share love, it will be demanding on you to be providing increasing care over the weeks and months ahead. You should consider your own well-being too, so that your support for your wife is optimal.

Will she be on morphine? Be aware of the common constipation issues associated with long-term use. I mention this not a deterrent, just something to be prepared for. There will be a great deal of powdered fiber drinks and enemas to counter the constipating effects of the morphine.

I wish you great strength, but remember to allow yourself to feel a range of emotions and not to consider yourself "weak" or a "letdown" if you are having trouble coping during stretches. Be gentle, not only with your wife, but with yourself.

[Frances]

5. My thoughts are with you

My husband died of cancer last July nearly two years after the first signs of the disease. Dying was a challenge for him and for me as his caregiver.
I don't know if Canada has Hospice. It's very helpful in the U.S. during the dying process. A person is eligible for this service if the expected life expectancy is 6 months or less.
The caregiver has full responsibility for the dying person and must be present when Hospice people come to the house. But Hospice will send out equipment like a hospital bed, a bedside tray and toilet, and a walker for the duration. It will also send out an aide to bathe the dying person (while the caregiver is present) two or three times a week. Hospice provides a nurse visit once a week to check the dying person's vitals just so everyone knows what's going on. The nurse orders Rx that are related to the dying process like pain and anxiety meds.
The thing I found most helpful after my husband died was a drop in grief support group. It is very comforting to me to be with people who have gone through this experience. There was also a caregivers support group.

[n2doc]

6. I hope you find some joy in her remaining time

Even little things. Sunsets, pretty mornings, short trips if she is able.

I read this lately and was struck by what small kindnesses can mean.

http://whatwouldjackdo.org/2017/04/12/nursing-kindness-and-compassion-respect-no-boundaries-and-obey-no-rules/

[progressoid]

7. ...

[CountAllVotes]

8. Aside from our love

You have a great gift in life and that is love. Cherish it while you are still together.

I am without words but as a person that suffers much with a multitude of problems, I am very glad to know that you are there for one another.

Till death do us part eh?

Be proud for being who you are -- a loving and caring husband.

It is not over yet. Perhaps it won't be over any time soon.

However, when it is time to go, you go I am convinced!

Take care of yourself as you are bearing a lot of burdens.

[lunasun]

9. Spend what little time you have together in peace now knowing the diagnosis

Hope you are allowed hospice care at home in your situation . My cousin with many health issues also decided no intervention with much stress relief and was able to leave in peace . I have known many that just want to go in peace . Please post if you can
Take care

[GliderGuider]

10. Wow. I'm a little overwhelmed. Thank you all.

Yes, we're looking into home hospice support.
Yes, we'll be finding joy and pleasure in the time we have (I don't think we've made love for the last time yet! )
Yes, I'll be getting respite support.
Yes, I'll be looking for support groups, and my work will provide a one-on-one psychologist for me to unload to.

We're just getting into the process, and we'll be finding things out as we go along.
Thank you all for your support and understanding. It means more than I can say.

[auntAgonist]

41. Your amazing love ...

My thoughts are with you. I am glad too that you are in Canada. My parents had wonderful care for my Mum when she was in her final days.
May I ask what part of Canada you're in?

kesha

[GliderGuider]

42. I'm in Ottawa, where Canadian tax dollars come to die...

[auntAgonist]

43. Isn't that the truth :) My family is all in Ontario too. K-W Cambridge / Woodstock area.

[GliderGuider]

44. I grew up in London.

[ms liberty]

11. K&R. Blessings and Peace to you, and to your wife.

[babylonsister]

12. I'm glad she's finding comfort in her decision; your love

shines through and you are both lucky to have each other.

[GliderGuider]

13. I integrated this with the OP. it belonged there.

Last edited Thu Apr 13, 2017, 04:10 PM - Edit history (1)

[chia]

14. My thoughts are with you and your wife

I'm so glad that your wife has relief, joy and clarity - she's obtaining closure, which is balm for that very human need to remove uncertainty and ambiguity. You've described it for her in such a beautifully articulate way. I am moved by your love for her, and wish you both all peace, and all the strength you need as you walk down this unfamiliar path together. We're strangers, but please know that I'm with you in spirit.

[brer cat]

15. My heart goes out to you both, GliderGuider.

It is a very hard decision, but it appears you have together chosen a path that gives you peace.

One good thing about DU is that the porch light is always on. Please stop by any time to rant, chat, or just ask for a hug.

[Amaryllis]

16. THank you for posting such a heartfelt message. I hope you continue to come here for support and

that you can sense the loving thoughts coming your way.

[joanbarnes]

17. Profound food for thought, I wish you both peaceful passage.

[onecaliberal]

18. I wish the two of you peace and love...

[retrowire]

19. I value your enlightening perspective so much.

Strength be with you and love carry you both.

[Granny M]

20. Wishing you both peace

as you walk this journey together.

[Moostache]

21. Build the memories to last the rest of your journey while she remains in it with you.

I wish you nothing but support, warm memories and the strength to carry on her memory when the time comes. You sound remarkably centered and strong and I hope that stays the case for you both through whatever lies ahead.

[grantcart]

22. This is where the rubber meets the road

Your wife married a super highway.

[TNNurse]

23. My friend and coworker was diagnosed with Mesothelioma at 45.

She was already terminal and not offered treatment. She was the mother of two teenage daughters (and was married to a really awful person). I was out of town when she was diagnosed, my husband called me to say "you need to get your head around this before you get home and see her". I did not know what to expect, she was not a physically affectionate person, not a hugger. I entered her room and she reached out for a hug. Within just a few days of diagnosis, she was at peace. She was calm and collected and genuinely at peace. She sought affection from all who came to see her, it was startling but helpful to us.

I hope that this is the level of peace you describe for your wife and for yourself. Keep her comfortable, accept what is ahead for both of you and do not forget to take care of yourself.

I was a nurse for a long time. I have watched many people who had to accept their immediate future and found peace for themselves and those who love them. It is a great gift for all

[ananda]

24. Thoughts for a good, peaceful journey.

..

[gademocrat7]

25. Peace to you, GliderGuider and your wife.

Take care.

[Fast Walker 52]

26. Best wishes and keep us updated

[planetc]

27. You are about to meet some of the nicest people in the world, through Hospice.

The people who do this work are among the best on the planet. They know what happens "when the rubber meets the road,' and they know what to do next, and what the options are. This is true of the people who helped my sister a couple of years ago -- they were an enormous relief to me. They ease the burden. Modern medicine is miraculous in some ways, but some doctors don't know when to give up. Hospice nurses do know, and they'll be there with you.

[wryter2000]

28. Love to both of you

I hope you have some wonderful time together and her passing is peaceful.

[applegrove]

29. May you keep on finding the peace you need. Love is all

[procon]

30. There are no words worth saying, but human to human, I wish you both

peace and joy and thank you kindly for sharing your beautiful, heartfelt love story.

[barbtries]

31. big hugs

she's lucky to have you. don't forget to take care of you.

i can't help crying but i am happy you have each other and hope for the least possible suffering for you both.

[oldcynic]

32. It is the hardest and best thing you can do.

Difficult as it is to believe, there will be comfort afterwards in that you did your best for love. If you feel anger, wish it were over, beyond exhaustion or any other emotions you think shouldn't be felt, don't waste time on guilt. Those feelings are normal and you are there, which is a gift that wipes out bad memories. You both show tremendous courage and clarity.

[DownriverDem]

33. Sending positive thoughts your way

We lost my brother to cancer last December. He didn't want to go through the radiation & chemo, but he did it for his family. Sadly, it didn't help him at all. So I support your wife's decision totally.

[Silver Gaia]

34. May peace be with you both and love light the path you walk together.

[AwakeAtLast]

35. You are providing a truly inspiring roadmap

For the rest of us when it is our turn. Thank you, dear friend.

[Skittles]

36. someone is always here on DU for you, GliderGuider

and for her too....she sounds like a lovely lady

keep talking to us; we can help

may I ask, could you tell us what those "symptoms in retrospect" were. My mum died of cancer that originated in her ovaries, but her only symptom was fluid retention.

[GliderGuider]

37. Mild vaginal bleeding, mainly.

She also showed some abdominal swelling, but we ascribed both symptoms to changes in the cantaloupe-sized fibroid she's had for 35 years.

We haven't even seen the oncologist yet (appt on Tuesday), and she is already showing advanced symptoms - shortness of breath and stomach compression due to rapid fluid buildup in her peritoneal cavity, known as ascites. I didn't expect that for another month or two. This is going to be (insert deeply negative word here.)

[GliderGuider]

38. That's why they call ovarian cancer the silent killer.

Symptoms only become worrisome when it's too late.

1. It can be treated effectively if it's detected early.
2. It's almost impossible to detect early.
3. So it goes.

[Skittles]

39. my mum, when she passed

she looked like she was sleeping - she wasn't gaunt - except for the abdominal swelling (from the fluid), she didn't have much pain, and she ate as normal until she lapsed into a coma (she died two days later, in hospice)

can your wife be treated for the fluid retention? I know that very much make my mum more comfortable

[GliderGuider]

40. I think they can treat her with needle and suction drainage.

I hope so, anyway.

[GliderGuider]

45. A month later...

The gynecological oncologist read her tea leaves (interpreted her CT scan) last Tuesday. He confirmed Stage 3 with metastases in the omentum and lymph nodes. He asked her again about treatment, as he had on our first visit. When she again refused, he was very respectful and passed us over to the palliative care folks with no pushback at all. He told us six months was a reasonable estimate, so she gets the summer.

She's had two sessions of paracentesis (abdominal fluid drainage) since I first wrote here a month ago. That's a huge relief because she builds up an enormous amount of fluid that puts serious pressure on her organs. Three weeks ago they drained 5 liters, and yesterday they drained over 7 liters - 17 pounds of fluid. It's like getting pregnant to full term every two weeks.

We had the first visit today with the home nurse and the palliative care coordinator. It was a long, intense and fruitful session, that left us both feeling relieved at the amount of assistance available. Our main concern at this point is to connect with a good pain management physician, and it looks like that's going to happen. There will also be counseling available for both of us, separately and together. That's a huge relief for me, because I'm beginning to understand just how alone a sole caregiver (especially one with no close real-life friends) can feel in this situation.

They also mentioned hospice, but she is adamant about dying at home, so live-in hospice won't be needed. I'm in complete agreement. There are day programs available for her, which is nice, but problematic because she is a night owl. I work days, she's an artist who normally keeps a 2:00 pm to 6:00 am schedule. That will change as time goes on, of course.

One of the reasons she wants to remain at home is because the privacy will give her more options at the end. Hypothetically speaking, of course... I am hypothetically in complete alignment with her hypothetical wishes, and I fully support whatever decision she makes. She has complete autonomy in all regards.

One of the issues I'll be facing is depression. Fortunately I started on Wellbutrin just after the American election (no coincidence) and it has turned my mood right around. So between that and the counseling I won't be left dangling over the black abyss without any support.

Here we go...

[moonscape]

46. Your story is filled with so much love, respect and courage that

it takes my breath away.

Thank you for including us here in your journey.