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Another update
Dave58
172 Posts

I went in at the local hospital this morning for blood work and have an appointment to see an oncologist there next Tuesday. They only do chemo treatments there. Then on Thursday of the same week I head to Kewlona to see an oncologist there, where they do radiation. I believe these are consultation meetings to plan on which, or both treatments I'll receive. I'll let ya'll know more when I know.

14 Replies
elle29
669 Posts

That must be painful @Dave58 but safe journées . Really safe ! I live on the Island & go to my local hospital Satelite 📡 Canceer Clinic & see GPOs .I still have my Primary Oncologist . But gone away until Feb 2022 miss him . But they work it all out between other physicians . Hoping your confident about your choices and ask to think about other questions to be answered later again . They usually allow this being professional . But if u need questions: @Runner Girl has a list in general to apply to all cancers .

I at first had 2 Oncos also , from what they called the Cancer Agency in Victoria down the Malahat narrowing the edge and rock face, and the Cocahalla.Editout cocahalla . Ask for place cancer patients can sleepover in case ✅

And finding it strange was I to choose which path to decide on Medical or Radiation Oncologist too , post surgery ? I thought feeling un equipped still and not ever seeing them either . Until the Medical Oncologist waited for the right time, to see moi . I ther for told the radiologist I was following the Med Onco treatment plan being the least striaessful , which suited me fine . I think perhaps the Radiation Oncologist was hoping I would choose both . But the Med OnIocologist suited me fine in his treatment plan I grabbed quickly to start , being 5 months .
It turned out he was following me all along the Rad Onco told me . And by his professionalism , his care and delivery I felt in excellent confident hands even though I was saddened by years left he gave me to live , changing that to more !! 🤗🙋‍♂️ 🙆‍♂️👨🏻‍💼🚱

Now 8 mths of oral treatment pills ♾I need prayers for Low Neutrophils 0.6 and. Macrocytosis Fatigue reoccurring so I can complete my stage 4 treatment and become NED not backslide bc they hav e to with hold treatment until those 2 cell levels return 📌 .
…So you stand strong 💪🏻 and confident with your wife and Jesus , Father God beside you two , to get through the best choice u can make . Because if others told you , that u can change your mind ! Prayers for He has never left your side our great physician Yaweh Rapha ! Amen And go in singing Psalms and praises ! In Gospel Hour music !

qqq

Dave58
172 Posts

@elle29 Wow ! What an uplifting reply…thanks ! Yes, this week will begin the treatment journey and I'm so ready to begin. I have a list of questions Sailor refereed me to all printed out ready to take with me. I truly appreciate your sound advice !

Prayer is very important to me as never before. It allows me to talk with God which always brings comfort. God has instilled so much peace in my life that I can't even begin to describe. I always allow for God's will to direct me in every aspect of my life. I know that through Him I'll make the right treatment decision.

MommyT
130 Posts
Dave58‍ I thought I would chime in regarding your treatments. I live in the Okanagan, about 45 minutes away from Kelowna. My treatment was 30 rounds of radiation and 3 chemo in each of the first and third weeks. At the advice of a friend, I opted to stay at the Cancer Lodge in Kelowna ... the best decision ever! My chemo days were 4 or 5 hours sometimes, and with the fatigue from the radiation I'm not sure I could have handled the traveling. The Lodge was great - I could have had my husband stay with me, but we have a dog and a garden, so he opted to drop me off the first of the week and pick me up at the end of the week.
Good luck on your treatment plan. The doctors are amazing in Kelowna. From what I understand, they have a "round table" and discuss each patient once a week to come up with the best plan.
Your faith will see you through as well!
Dave58
172 Posts

@MommyT Thanks for the sound advice ! We are actually considering doing this. Right now we don't know where my chemo will take place, either here in Vernon or in Kelowna. We see both oncologist this week and we'll know by Thursday. What knocked us off our feet was getting a call from a end of life caregiver last evening. After hello, she just stated “ I'm with the end of life program”. It really took us back. We try to come to terms with one thing and get slammed by another. I know they do more than end of life but the way she began the conversation was just rude.

MommyT
130 Posts

@Dave58 Have they set you up with a counsellor? There is a lot to deal with, and talking it through will help! Do let me know if you need some phone numbers for different departments in the Cancer Clinic or the Cancer Lodge. With Covid, they did not give any hand outs and I had to ask for a lot of the information! Very difficult to get phone calls like that! So sorry to hear.

JustJan
1033 Posts

@Dave58 I will be thinking about you as your start your treatment this week.

Brighty
7488 Posts

I'm also thinking of you @Dave58 .keep us updated how you're doing.

@Dave58

Thinking about you as a few BC Lung Cancer patients gathered this morning by zoom. Let me know if you would want in on that. We meet next on Tuesday September 21 so you may be into treatment by then.

Gah, I do as much as I can to promote palliative folks and then they do something like that. I'm going to be generous and point out that they are often tired and burnt out because there are far too few of them. I will also point out that I have been bugging my oncologist to connect me with them and he won't. Doesn't think I'm “ready.” Little does he know that the conversation that he and I just had was prompted by a palliative specialist.

Managing serious illness is more than just treating the illness itself. And that is the business of palliative care. I well remember the whirl of those first few weeks after my diagnosis. Being handed all the “end of life" stuff and being referred to a social worker. And I really didn't feel much like I was dying. I did get my legal affairs in order and I had some difficult conversations with my kids about what I wanted the end to look like. But then I put it behind me.

Choosing to live each day one at a time. Making a difference where I can. Doing what the doctors ordered (mostly.) Finding ways to enjoy life.

I hope that you get things sorted out.

Angus

Dave58
172 Posts

@WestCoastSailor Hi Angus, always good to hear from you ! I hope you get hooked up with the palliative people you're looking for.

We're just not at that point yet. I just met with my chemo oncologist yesterday and this Friday with my radiation oncologist, and need time to process everything. I have way to much fishing yet to do and I'm making plans for next spring as well.

The first thing I tell the oncologist is that I don't want a time line on life expectancy. It's nothing to do with denial of the cancer or how deadly it can be but I want to live each day without that dark cloud looming over me and my wife. I have my will in order as I have for years and will be going over it with my wife so there will be no “ grey ” areas for her to navigate. I've also typed up a document on what I would like to be done upon my death as again I want to take as much burden off my wife as possible. If I've missed anything I know others that are either going through this or have gone through it will give me sound advise. Stay tough my Friend, I'm always here if you need !

Cynthia Mac
3338 Posts
Dave58‍ I just read your post about what your “EOL” caregiver said, and I LITERALLY smacked my hand to my forehead!

Two things: first, I’d say they need to change the name of the program, and second, I’d say they need to ramp up their staff’s “people skills.”

Oh, yes, I popped in to congratulate you on having got your affairs in order. I tend to encourage people to do that, too. My Mom was a big proponent of being prepared in that manner, and it made my life a lot easier when it came time to settle my parents’ affairs after they passed.

An avid crafter, I’ve put notes in my various “craft cupboards” with who to contact to deal with the contents to try and make it easier for my estate trustee. You might want to do the same for your fishing gear, but in the meantime, I wish you many days of good fishing. Catch a pickerel for me!
Dave58
172 Posts

@Cynthia Mac Hi and thanks for the feedback. Not long before I was diagnosed we went and had the power of attorney given to each other to include end of life decisions. Anything special I want left to anyone I have made ready with notes on how to handle it. For some I'll make a video and put it on a thumb drive to accompany the item. I hope the videos don't creep anyone out but it's only to a super close friend and my Brother.

@Dave58 - I wanted to wish you well as you start your treatment. I am sorry about the method in which the palliative person approached you. While I think there are end of life conversations and plans any of us need to have at some point, regardless of cancer status, there is definitely better ways to go about it.

Look forward to more updates.

Lianne

MommyT
130 Posts

@Dave58 Great idea to get everything in order … even if you weren't diagnosed with cancer. I worked in a law firm with an estate lawyer, and it was a nightmare when people don't cross their t's and dot their i's!

From what I've read, they've come leaps and bounds with lung cancer and even if they tell you that you only have a certain length of time to live, they could be way wrong! My friend's dad had lung cancer about 40 years ago, and he lived for 25 years afterwards!

Take good care! Great attitude is the key I think.

Never give up on HOPE because MIRACLES happen every day!

elle29
669 Posts

Yes my GPO was harsh and rude like u mention of a EOL calling u . My lawyer in another province wrote my will bc my mother a professional in that once long ago , still young insisted we all have ours done ✅ legally .Inmade it very simple divide it all between whoever of your kids equally lève them to figure it out amongst them like,possessions as family members . And he also wrote he will not release or make any changes without my say to sign . Then put your hard copy in a bank security box .

Anyways your confidentiality was violated by some one . One thing to say verbally to doctors and staff is repeat “ do not do anything unless I say so. “ I did that to the surgeons and rest “ do not let me die “

As bc it can be so easily misunderstood seeing , supporting a friend noticing that her bedside doc very quietly said this unclearly ” to mean something else she did not interpret being unwell distress anxious ! “ So I claridied this with her as also a Christian who fought in God for her family sons . And then whose family long distanced came and changed her wishes put her in life support to die ! O touched her legs but I told them this was not what she wanted . They invited me into a social workers meeting with them .
For myself here after seeing the Onco , I was referred to go at my hospital to be seen by a GPO . And who was blunt saying your going to die not apologizing even when I said I wanted survival plan . Total opposite from my Oncologist who said “ we want u to live longer .” Written on his assessment report . And so my cancer is reducing 8 mths into treatment .
‘Now though it’s just really hard being fatigued alone . Emphasizing , telling my young family when first diagnosed , I do not want to be alone with this , in hospital cancer surgery , as I was before . But during COVID onslaught they were not allowed to stay .

NB You don’t have to go around and label everything , your not moving , keep it simple , one legal will , one split, to those u love, for everything . Can be done quick even by a notary until you recover to deal with .

It’s just a whirlwind now if u need time to think clear . Not pressured rushed , is under duress , that law will support you . And for Gods sake do not be doing this just before a procedure add your notes too get them to copy or if u have cell phone or wife take a picture of paper U signed . You can always make write changes on . My mother had her credentials in business and accounting law helping many in counsel that other professionals wanted advice . Some she socialized with just heed . Yield.

He says , to pray to guide the hands of those in authority .

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