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When everyone else is holding all the cards…
Jody22002
39 Posts
Good Morning.

I am feeling frustration and anxiety today. Anger too.

Small recap:

I was supposed to have VATS on April 21st. On April 19th, I was told that the EBUS had also shown a lymph node on my left bronchial tube was cancerous which now made me stage 3. Surgery was postponed. The surgeon told me that his plan was to bring my case to the board that night with the plan of doing 30 days of radiation/chemo and then surgery. I can no longer have VATS and all the lymph nodes in my chest(which is a lot) must be removed. That meeting was cancelled. He was supposed to present my case a week later(this past Wednesday). I have heard nothing. He doesn’t call without having made an appointment so I don’t imagine I will hear today either. Phoning my Cancercare Nurse Navigator is of no use either because, although she was planning on listening in on the meeting, she has already told me she will not tell me the outcome.

DO THEY NOT REALIZE THERE ARE REAL PEOPLE WAITING?

Sorry for the yelling but man, it is starting to make me angry. It’s been almost three months. THREE MONTHS. Everyone told me to be patient because they needed to gather all the facts and do all the tests. They have. There has not even been a referral sent to Oncology yet. Regardless of the outcome of that meeting, we know I need oncology so WTF?

What am I supposed to do here?
8 Replies
Brighty
8442 Posts

@Jody22002 im so very sorry this is happening. Waiting is horrible. I remember when my fiance was waiting ,constantly for calls back . I literally stormed in there inPERSON and told them I'm not leaving until the doctor sees him. I harassed and harassed. I didnt care. Im usually a very passive person by nature but when it came to him and his health , I was a bulldozer with those doctors. Be a bulldozer if you need to. Who cares what they think. Your life is at stake!!!!

Jody22002
39 Posts

@Brighty

Either some powers that be read here or just putting my frustration out into the universe worked.

My treatment plan was approved And a referral was sent to an Oncologist. However, I asked how long until start of treatment and was told likely four weeks but that they are moving quickly on my case because of my age. One glitch in the plan. Our local Cancercare doesn’t do radiation on head and neck so I will likely need to travel. We can’t afford hotels so o don’t know how we will deal with that issue.

Brighty
8442 Posts

@Jody22002 great news!!!!!!! I believe there are cancer centers that you can stay at when you have to travel for treatment. The cancer info line can give you more information about one in your area. 1 888 939 3333. Let us know how things are going!

supersu
1108 Posts

@Jody22002

great news re: treatment plans---finally.
bad news re: travel.

@Brighty has given you wonderful resource in the Canadian Cancer Information Specialists number; and I would think the social work department at your hospital should be able to give you some information also….after all, you cannot be the only person who requires support with accommodations.

if we are putting stuff out to the universe - lets put that out there too!
dear universe: please provide some free & comfortable accommodations for @Jody22002.
and while we are at it let's add---
dear universe: please provide a team of kind & caring health care providers!!
can't hurt, #amiright.

have a great weekend
cheers
su

#treatmentplan #traveltotreatment #accommodationsupport #cancerisawaitinggame #asktheuniverse

Skye2
223 Posts

@Jody22002

so happy to hear you are finally getting some answers and treatment is forthcoming. If you have a patient support number - find out if you can get a social work referral to help with the travel expenses and arrangements. I know as an OR nurse, I have seen travel expense forms to be filled in by the surgeon on patients’ charts when they come from out of town.

Waiting is the hardest part of cancer. (Doesn’t matter whether it’s for tests, results, surgery, chemo, etc… it all saps our energy, causes anxiety and sleepless nights☹️).

Wishing you continued good news that things are falling into place for you.🤞❤️💪

Sue

Jody22002
39 Posts

@Brighty @supersu @Skye2

Thanks everyone. I am going to speak to the Social Worker and see what there is for options. I know there is some type of accommodation attached to the Cancercare building. My biggest issue is child care. I have a 23 year old with Down’s Syndrome. She can stay with her dad but it’s not ideal and it wouldn’t be her favourite. She has bathroom issues and some other issues that she would be too embarrassed to tell him about. I’m sure we will figure something out.

Thanks so much for the support.

Cynthia Mac
3876 Posts
supersu‍ - affirmations are just thoughts - beautiful, positive thoughts, and I agree with you: those kinds of thoughts can’t hurt. I look at it this way: when we are having positive thoughts, we push the negative ones out of our mind.

Much and all as it seems like we’re having 100 thoughts going through our head at one time, we can only be conscious of one at a time!

Jody22002‍ - also, while you’re investigating the costs of all this stuff, check with your tax accountant. We were told that if your treatment centre was more than 45 minutes away, you could write off hospital parking as part of the medical expenses. Dad’s surgery hospital was only 40 minutes away.

Our local hospital has a building built by one of the service clubs for people who are in treatment. A friend of mine’s husband stayed there when he was being treated at the hospital.
Skye2
223 Posts

@Jody22002 @Cynthia Mac

you don’t have to live any particular distance away to claim your medical parking. I spent almost $500.00 last year in parking for appointments and treatments, and it is all eligible to be claimed on income tax - I just had mine done, and claimed it all. We bought a lazyboy chair for my mastectomy- I asked my surgeon for a letter to justify it - claimed it as a medical expense. Save EVERY receipt related to medical care. I have a friend who saves every single receipt for everything from bandaids to Eno, antihistamines to Tylenol…anything you buy “medical” related - he’s been submitting them on his taxes for years.

Sue

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