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Introduction and loosing hope everyday

Introduction and loosing hope everyday

Posted by TayTaythor on Dec 14, 2020 11:53 pm

Hello, 
my father last year was diagnosed with colon rectal cancer. For whatever reason they could not stage his cancer and said it was to complex to stage as they didn’t know. In his CT and MRI they said they found some spots on his lungs but they weren’t worried and they were super small, PHEW it didn’t spread. 

in September he has his full rectum removed and he did amazing! His recovery was extremely flawless I was absolutely shocked! The doctor shook his hand and said congrats your cancer free! 

Three months later he has a scan that they are now concerned about the spots on his lungs and he needs to come in. They said the spots are now 6 mm and they still couldn’t give us any answers. A surgeon said he can remove the top half of his lungs so biopsy them but my dad was like uh no. They also said there was a spot on his liver they knew about the whole time but didn’t want to upset us more. 

he is starting chemo again this Friday to see if the lung spots go away. The original nodule
on his liver was diagnosed as a cyst and now they are not sure. I am a funeral director and I see these things everyday. I’m not sure why but the first time I heard about the cancer I felt so much hope and this time I’m planning his funeral in my head. I am trying to hard to remain hopeful but in my head it has spread and there is no hope. My dad seems to be in good spirits but we are getting the run around and no one seems to know what is going on. I am stressed beyond belief and dealing with grieving families everyday has been a nightmare. I apologize for my bad grammar as I am typing this while crying. 

I am asking for advice on how to stay hopeful? I feel like I have no one to talk to in regards to this as I am the one telling everyone to be hopeful and I can’t practice what I preach. 

thank you all for reading and I hope nothing but healing and good health to all 

Love Taylor 

Re: Introduction and loosing hope everyday

Posted by Brighty on Dec 15, 2020 8:23 am

TayTaythor‍ welcome!!! Sorry..I'm having issues with my phone this morning.   I wanted to let you know you are not alone.  Many people  will come forward and share their  stories of hope and success.  I'm wondering  if you have thought about receiving a second opinion for your father's situation?  Do you have a support system?  Hobbies?  A loving pet?   You may want to also try doing a gratitude  journal.  Write one thing in the journal  a day  what you are grateful  for.....it will uplift  your spirits a bit.     Theres always hope...treatments have come a long way in the last few years......focus on what you know  to be true today....dont jump too far ahead of yourself..I know that's hard to do.   One day and at time...one step at a time and we are here to support you every step.   You will hear from others soon.  
Help is out there. All you have to do is reach out.

Re: Introduction and loosing hope everyday

Posted by TayTaythor on Dec 15, 2020 10:24 am

A gratitude journal is such an amazing idea. The issue is my dads case went to an entire board or doctors like ten of them so there is about seven doctors who he sees. The older ones are usually the ones that are like You are toast and the younger ones are more optimistic. Thank you for the kind words of hope that has made my morning a a lot better. You are an angel and I appreciate you taking the time to reply 

Re: Introduction and loosing hope everyday

Posted by ashcon on Dec 15, 2020 6:14 pm

TayTaythor‍ 

Taylor, I am not a caregiver myself (I went through advanced breast cancer), but I can certainly appreciate your fear and worry over your father.  And your added stress of seeing more death and grieving now, at this time, in your line of work!  Tears are merited!

It sounds like your father's case went to a "Multidisciplinary Team" (aka "Tumour Board") for consultation amongst several peer oncology specialists.  (My case went before one as well).   The good news, is that this is kinda like a free second opinion!  
I'm sorry it sounds like there is divided opinion between the older doctors and the younger ones. Doctors are people too, despite standards of care.  Whose opinion or thoughts make the most sense to you and your dad?

"Hope" is such a funny thing when it comes to cancer.  In my opinion, the best oncologists don't offer promises of a "cure" or ask you to hope for a cure.  They can offer the best treatments available and say "We're taking a curative approach".  Or they can pull out their myriad of treatment options (it sounds like your dad is still receiving all the front line options, which is good) and say, "we're taking the approach to control the cancer to prevent further spread. which could still mean a long and active life. 

As non-doctor types, we can say, "We're taking each day, each test, each appointment, each treatment as it occurs. And we're filling the time and spaces in between with joy and connection, gratitude and love, and honest, loving conversations."
You don't want to look back on these days and remember them as being filled with stress and sadness. That would be a great disservice to your father, especially if things take a turn for the worse.

If your dad seems to be in good spirits, enjoy that with him.  Yes, make sure he's getting all the medical things attended to (sounds like some advocacy work on your part may be needed right now!). 
If the "what if's" become a reality later, neither you nor your dad will be facing it alone. 

Cynthia Mac‍  (who‍ cared for her father) and CCC888‍ (whose father had colon cancer) may be able to jump in here as well.

Is your father getting infusions for his chemo? Or is it oral chemo? 
---- "Nothing ever becomes real till it is experienced." ----

Re: Introduction and loosing hope everyday

Posted by Whitelilies on Dec 15, 2020 9:32 pm

TayTaythor‍ Hello....There is always hope!
Your dad is cared for.  Enjoy every day, every opportunity with him.
Your work is stressful, and especially these days, with covid.....your tears are founded!  I would need kleenex hourly.
My dad was diagnosed at 88, with Colon Cancer.  They found 2 tumours actually during an eventful visit to the ER
He was diagnosed after me.  They found 1 tumour for me.
So......I do understand, all sides.

Please take a moment to look at:
CCRAN.org
This site has lots of helpful info, tips, and more.

We are here for you.
Regards
Whitelilies

Lillian

Re: Introduction and loosing hope everyday

Posted by gladup on Dec 16, 2020 9:05 am

Welcome TayTaythor‍ ..Understand your feelings at such a time. It's especially hard when there are different opinions to sort through!  I have stage 4 lung cancer so I know the ups and downs of some hope, then disappointment with each scan . But there are so many new treatments and options even when the cancer can't be cured but can be controlled. And a good support system helps; this forum is part of that..One day at a time dear! 

Re: Introduction and loosing hope everyday

Posted by Mammabear on Dec 16, 2020 10:37 am

I am not a care giver but I do think their job is harder than the patient's. 
This group has taught me that HOPE is NOT finite. 
Each new scan, each new treatment plan - gives more hope, more time.
The ups and downs of cancer treatment are emotionally draining.
You will likely lose your father sooner than you wanted to. But no one gets out alive.
Every day above ground is a good day. 
Every day the cancer patient puts one foot in front of the other and we need our care givers to do that too. 
Come here and vent, cry, express your despair.
We will prop you back up so you can be positive and hopeful with your father.
When you hear your brain going down that rabbit hole, pull the e-brake.
​​​​​​​You can do this.... for him
 

Re: Introduction and loosing hope everyday

Posted by Drscrs on Dec 16, 2020 7:40 pm

TayTaythor

Don't lose hope, ever!!!

I went through a similar situation myself.  I had surgery in July 2015 for colon/rectal cancer.  Then followed chemo for 6 months and radiation treatments.  Every three months I had to have more tests to see if the cancer had come back.  These tests were blood work and a CT Scan.   I was doing very good - for awhile.  Blood work and a CT Scan in February 2017, was a different outcome.  Tests showed that I had 2 spots in my lower left lung and another in my upper right lung.  Surgery was my only option.  I really didn't want more surgery.  I had suffered enough from my surgery in July 2015, some problems remain to this day, and will for the rest of my life.  But I had surgery, using a VATS procedure.  The surgery went great - no problems.  Then another 6 months of chemo, no radiation this time.  My surgery for the lung cancer was in September 2017, and I have been cancer free since.  My last check up was done September 2020.  I now do my check up every 6 months instead of every 3 months. 

I was 63 when I first started this journey.  I have other medical problems - with my heart and lungs, so things have been rough.  HOPE was the main part of my recovery.  A lot of days were difficult but I continued to HOPE that things would get better, and they did.  I found a positive attitude necessary to help get through bad days.  It was  difficult, but I had to try and focus on the good days.  Have a great support team to help you.  I am in the Province of Newfoundland and Labrador and we have a great support system for cancer patients and their caregivers.  When I started this journey, I felt that I didn't have the stamina and "guts" to do this.  You will find that you are stronger than you think you are. 

This is a great site for help, and just venting. Help is always here - just ask!!

Take care of yourself, Taylor,
Wayne

 

Re: Introduction and loosing hope everyday

Posted by TayTaythor on Dec 17, 2020 12:53 am

I just wanted to say from the bottom of my heart, you are all truly amazing, unique, strong warriors and I feel absolutely surrounded in love right now. I have tried to reach out to other cancer support groups and have not had this experience. I can’t even begin to thank everyone who took time out of their insane days to reply to me. There are no words. I am re inspired for life. You can’t escape reality and of course we are all going to die, that’s life! And you would think that someone who is completely desensitized from my industry would know that, but of course it takes time to learn. I am wishing everyone here more smiles, laughter, less pain, and less worries for the New Year. The world needs more people like you, don’t ever stop being the light😘


Love Taylor 

Re: Introduction and loosing hope everyday

Posted by Cynthia Mac on Dec 17, 2020 9:53 am

TayTaythor‍ , I’m glad you found us, too.

I’m sorry you’ve been getting such conflicting reports about your dad’s condition. That certainly doesn’t help any of you. I’ve never heard of doctors admitting down the road that they knew something looked suspicious but didn’t want to say. 

My Dad’s primary cancer was lung cancer, and when I learned it was metastasized to his liver, my first reaction, too, was “Oh no — this is it.” That’s really hard for a child to wrap their head around - doesn’t matter if they’re 20 or 60. Just like you, I was able to hold hope and bolster him through his first rounds of chemo, but it was a lot harder to do after I knew the cancer had spread — EVEN THOUGH I knew that treatments have come along way, and that there’s so much more they can do today for metastatic cancer patients. 

There’s a saying “hope for the best but prepare for the worst,” but the thing is, I don’t really know how we can truly prepare for the loss of a parent. My mother passed away suddenly - she felt ill for about a week before, but we didn’t know how seriously ill she was until the day we took her to hospital. I coped with her passing so easily, but that wasn’t the case with my dad, so I’m at a loss try and give you any advice in the “prepare for the worst” department other than to say  it’s ok for you to have a fall like that when you get bad news. 

I believe that Drscrs‍ Is right - we ARE stronger than we think we are. Some days, we just need a little (lot of?) convincing.

If there’s any help I can offer you in the caregiving/ coping with a parent’s cancer department, know I’m here for you.‍ 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Introduction and loosing hope everyday

Posted by Lianne_Moderator on Dec 21, 2020 4:39 pm

TayTaythor‍ 

I am so glad you reached out and have connected with some of our fabulous members.

How is today feeling for you?

Thinking of you
Lianne

Re: Introduction and loosing hope everyday

Posted by bee1234 on Jan 11, 2021 2:15 am

Hi

As a caregiver myself for my sister, No its not easy at all, in fact I can say its been a really hard job, its more than just physical, its emotional and mental. Our job is the most challenging and no, it doesn't get easier at all, in fact the closer of the relationship between both of you, the harder it is. Working with strangers is easier, because you don't have the history, closeness or know each other personally in a close way. 
What you are experiencing is normal, and yes its not a job we wanted, but your dad is so lucky to have you step up and take this on, support is everything and you can do this! together the journey could be eye opening and even some moments are amazing. 
Make today the best day, every moment is its own, as tomorrow is never promised.

The people here are towers of strength, amazing people that even though they don't view themselves as wonderful pillars of strength, they are. 

Take care

Re: Introduction and loosing hope everyday

Posted by D1955 on Jan 12, 2021 10:42 am

TayTaythor‍ ,
Welcome , 
I wish I had found rhis group back when my dad's cancer was found. That was a day in 2007 I will never forget.
I was at the Cancer Center in the morning with my father and Stepmom to meet with his doctor and stayed around to meet with my husband's oncologist in the after noon.
The root of my father's cancer was never determined.  It remained of unknown  origin. It was a very large tumor radiating from his spine in between his ribs. Radiation was immediately done to slow the growth and he got an amazing doctor that helped to control the pain. 
needless to say I was in a blur over the next 5 months until he passed.
I can look back on the times I spent with him and smile. 
There are alot of great suggestions here for you. This group of caring people have helped me so much as I continue the fight against my husbands cancer. 
Never give up. Love and live each day.
Cry and laugh as you can.
Hug and hold your dad.
we are all hear with an ear and a virtual hug.
Bless each day we have.
Dee

Re: Introduction and loosing hope everyday

Posted by law on Jan 13, 2021 2:13 pm

Welcome, TayTaythor‍ 
How lovely to read your posts--- and I know how stressful, hopeless, and anxiety provoking a cancer diagnosis is.
You are among a huge group of empathetic folks here who have had too much experience with cancer, with caregiving, with fear, with the inablity to 'fix' situations..... life is marvelous yet has bumps in the road along the way.
Keep us posted as to your Journal and reflections along your journeys.
law