update

[lovingdaughter1990]

hello everyone,

My dad had his biopsy finally on Friday Dec 23. 
He has an appointment with a radiation oncologist Jan 3 then a follow up appointment with lung specialist on Jan 9. It feels like we are just waiting and waiting and nothing is happening in regards to any treatment. 

my heart is breaking more and more for my dad as he seems to be declining as we are sitting around waiting for something to happen. He is on pain meds for his pain in his back and has now lost his voice. He has started to eat less and less and is now only eating a liquid diet (boost, smoothies and soups)

does anyone have any suggestions on what i should do?? does he need to be in hospital? i just dont know anymore. 

i know this isnt about me but my mental health is declining with him and i just dont know what to do.

the doctors dont seems to think he is ill enough to be rushed into treatment or hospitalized… and the worst part is we dont even have an oncologist we can call to update with new symptoms or ask about any concerns.

im just so heartbroken and frustrated at this point.

 

hope everyone had a good Christmas and happy new year!

[Tom Galli]

Oh my, I feel so badly about your father and his treatment delay. You are Canadian, and I’ve read about responsiveness issues with your National Health Service. Might it be time to engage your elected parliamentarian to expedite your father’s treatment?

No one in pain should be delayed treatment!

Stay the course.

Tom

 

[LilyMir]

This is so miserable, I am so sorry you are going through this. The Holidays are not helping with delays I am sure. Few things to try:

- Did you followup with your dad's family doctor? If he doesn't have one, call BCCA and ask for a GP there, they have such service for those who are not under care elsewhere.

- There is a Patient and Family Counselling group at BCCA (counsellors, social work, psychiatry, and psychologists). They can be reached through the main line (604-877-6000) and asking for the Patient and Family Counselling.

- Maybe 811 Nurse Line to ask if you suspect your dad has immediate need for care? I personally avoid going to hospitals unless urgent since so many people there are sick and infectious so best not to get another infection. However, if there is an urgent need, there is no choice.

- There is Inspire Health, they have good support services including mental health: https://inspirehealth.ca.

- I heard from people about this private ($) service (I have not used it but heard of other using it so may be something to look into if lack of care continues): https://www.blueguide.ca/site/cancer-management-services.

- For urgent mental health needs if you feel you need to see someone urgently, there is the Access and Assessment Centre at VGH (803 West 12th Avenue, Level 1 East Entrance):
604-675-3700 between 7:30 a.m. – 10 p.m.
Walk-ins are welcome at 7:30 a.m. – 9:30 p.m.
Hours: 7 days/week/holidays
Walk-ins: 7:30 a.m. to 9:30 p.m.
Phone lines: 7:30 a.m. to 10:00 p.m.
Open 365 days/year
Phone: 604-675-3700
 

BTW, how come you have no oncologist? Do you have a respirologist? Who did the biopsy? It takes a while for results, especially if they have ordered biomarker testing (insist they do). However you should be able to get access to some on call doctor (either respitologist or oncologist).

 

Canada/provinces are purposefully crashing its healthcare system to privatize it. We are in no man's zone right now. You need to be proactive and assertive in order to get good care. Wishing your dad the best of outcomes.

 

 

[LilyMir]

Forgot to add, please try your best to remain calm (I know easier said than done), it will help your dad manage his own fears too. This time between cancer suspicion and full diagnosis is brutal but do not lose hope. There is a lot your dad will be offered as treatment once he is properly diagnosed. I am not sure how much you guys already know about the stage and extent but even late stage has many effective treatment options. Try to reassure him while simultaneously demanding better and more prompt care from our crumbling healthcare system.

[lovingdaughter1990]

Hi LilyMir,

thank you for all the mental health and other recommendations i will be looking into those!! as for an oncologist he has an appointment on Jan 3 with a radiation oncologist but as for a medical oncologist we dont have one yet as we are waiting for biopsy results?? We have a lung specialist already who preformed the biopsy and he had an appointment on Jan 9. 

I just feel like everything is taking forever and im scared he wont make it to treatment. but thats probably just my anxiety.

 

 

[Judy M2]

LilyMir has given some really good information.

I also lost my voice, which is what let to my eventual diagnosis, after being misdiagnosed for 4 months. In fact, the American comedian Kathy Griffin also lost her voice as a result of her lung cancer. My left vocal cord was permanently paralyzed by the tumor in my lower left lung. Speaking was such an exhausting effort. While I waited for chemo and radiation treatments to begin, my ENT performed a procedure to add bulk to my paralyzed vocal cord. If this is not a possibility for your dad at some point, a voice amplifier might be a good option. I got one on Amazon and used it while my voice recovered. 

Can your dad's pulmonologist or GP give a referral to a medical oncologist? I don't know if it works that way in Canada, but you'll need to see one as soon as the biopsy results and biomarker testing come back. 

[lovingdaughter1990]

Hi Judy!

Yes, he had his biopsy on Friday so that is mostly what we have been waiting for. our GP said after biopsy is when the oncologist will come in and they will make a treatment plan. 

Its just so hard to watch him seemingly decline in front of my eyes and i feel so helpless at times. but i have been advocating and calling to get his scans and biopsy etc.. pushed to an earlier date then they originally had been.

he doesnt want to eat much and i dont know if this is just a mixture of pain meds, anxiety/ depression and the cancer its self as i read lung cancer can cause decreased appetite. Just so heartbreaking but we are getting there….

if you have any advice or suggestions on how to get hid calories up and his strength up that would be greatly appreciated.

i will be calling tomorrow to see if we can get a nutritionist through the BC Cancer agency as well

[Judy M2]

The cancer itself can cause weight loss, it's called cachexia. I had lost a good 25 pounds before I was finally diagnosed. Calorie-dense foods are usually recommended to try to maintain weight. Things like peanut butter, nuts, trail mix, granola, hard-boiled eggs, milkshakes and cheese. I remember eating a lot of Trader Joe's frozen macaroni and cheese and ice cream. There are also prescription medications that can stimulate appetite. 

I know how difficult it is to stand by feeling helpless, and the stress takes a lot out of you. It's cold comfort to know that you're doing as much as you can right now.