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Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Sep 29, 2020 10:38 am

Hello everyone. I have been having bowel symptoms (constipation and bleeding) and my colonoscopy was delayed several months due to Covid. Finally had it last Thursday September 24. When I woke the surgeon told me I had rectal cancer and that she had sent a biopsy for staging and typing, She also sent me immediately for a CT scan in the same hospital to look for spread, Initially I took the news fairly well thinking I would hit the ground running on this journey. The surgeon's office called yesterday to schedule my follow-up and it isn't until October 23 - a whole month away! They did say they might try to move the appointment up if they received the pathology report sooner. I've disappeared down the rabbit hole of fear and helplessness. I have fatigue and an occasional cough so my mind already has gone to places I don't want to be. Is this kind of wait for pathology normal? if not, what can I do? Thank you all for welcoming me into this caring community!

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Brighty on Sep 29, 2020 11:58 am

Saharabee‍ .. welcome.  I just lost the post I wrote to you so I'll try and remember what  I typed.  Welcome!!!!!Pathology  reports can take several weeks.. so it's not unusual... but I would keep calling  to see if the results can be sped up a bit.   Fear and waiting  can be terrifying.  Do you have a support  system?  Do you have any hobbies you may be able to distract  yourself with while you wait? I would like to introduce  you to a wonderful  lady  who will be able to offer you support.  Whitelilies‍ has experience with this type of cancer  and she will be able to guide you through with any of your questions.   We are here to support you through.  You are not alone.   
Help is out there. All you have to do is reach out.

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Whitelilies on Sep 29, 2020 2:25 pm

Saharabee‍ Hello
Brighty‍ thank you for the tag.
Welcome to our caring site, where we ALL "understand".....in one way, or another.
I will share my journey, in brief, to give HOPE....and answer, first your concerns.
Path Report......it DOES take time....covid issues are everywhere....staffing shortages, volumes of patients in need....we simply must wait.....you can place a polite call to "inquire" about results, soon.....why not.
Next appt Oct 23rd; Not Bad In My Opinion! Less than a month!  Once again....covid issues....lots of folks need a surgeon, lots of folks need the O.R......bookings/free time are hard to come by.  Use this time, (from now to Oct 23rd) to write down your questions.....Please do NOT over-google.....it may be outdated and not giving info that you may seek, for YOUR situation.  Yes, waiting is hard!  (I TOO  am waiting now for CT scan results)
You are in the 'system'.....major hospitals have a patient navigator ( A Nurse)....whose main role is to answer questions/concerns from patients......my hospital (in Toronto) has a navigator for Breast, and a navigator for Colon.   She is on my Speed Dial !
To "re gain" some control, you can call/email your surgeon's office, and say you will come to a follow-up appt from ANY cancellation they may have....ie earlier than Oct 23rd.....it may speed things up.  Again, CT scan results do take time.  You MIGHT be told to get an MRI/don't be surprised......one for Colon....PERHAPS one for Liver.....they check things out all around...this is "common".....do not be alarmed.

I had my FIRST colonoscopy at 56......I woke up....and GI Dr. was "hovering"....I simply thought That Is What They Do Best; Hover !
She blurted it out.....You have cancer! I almost fell to the cold, tiled floorway.....my blue trendy gown almost fell off my caboose !  I was passing "wind" like there is NO tomorrow !! The scope took a HIKE and found it...... (She could not even wait for my husband to arrive....)
I waited TEN WEEKS to see my Surgical Oncologist.
My path = Radiation.....2 surgeries......Now Time To Heal.

Things will soon fall in to place....treatment plan will soon be created for YOU! Your needs are specific for YOU.
My tumour was 3cm, and very "downtown"......NO sunshine available ! (please chuckle !!)

THERE IS LOTS OF HOPE.......Please keep posting.....let us all know how you are doing.....what steps are next.
Please ask, here, any question you may have....as NOTHING makes me blush.
(I too had, bleeding.....bloating.......it simply did not go away......off to my dr I went......and......the rest is history)

Warmly
Whitelilies

Lillian 

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Sep 29, 2020 4:24 pm

Oh my goodness, Brightly and Whitelillies! Thank you for your kind responses. You have given me the first sense of calm since yesterday morning. I now no longer feel like my situation is absolutely dire. And Whitelillies, you made me laugh so much reading your reply. I will try to answer some of your questions.

First of all, I live out in the country and the colonoscopy and CT scan were done at a small town hospital. But I will eventually be seeing an oncology team and receive treatment in Ottawa, which is an issue in itself. It will mean long drives in winter weather and my husband and I are getting on in age (70s) and don’t do well with night or winter driving. But we will deal with that when it comes.

Our only daughter lives in BC with her husband and family and she is immune compromised herself so asking her to come and help is out of the question. But I have 2 dear friends who are going to tag team as my support team and attend appointments and take notes. One is a recent cancer survivor herself so is very knowledgeable.

I fractured my C7 vertebrae 7 years ago and live with chronic nerve pain as a result. Many of the things I love to do cannot be tolerated without taking one or two T1s daily. I can’t do that any longer as they make the constipation unbearable. Any recommendations on pain meds that don’t make our bowel issues worse? It’s already a nasty job trying to get a morning poop.

Thank you for the kind welcome. Your words have saved my sanity today! My gratitude and admiration is immense.

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Whitelilies on Sep 30, 2020 8:40 am

Saharabee‍ 
Soon.....this will all be "behind" you.

Laugh all Day.....

Lillian

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Wendy Tea on Sep 30, 2020 9:50 am

Saharabee‍  I am sorry to learn of your diagnosis.  When I had questions and problems,  I contacted my medical team for solutions.  Don't be shy making a phone call to find the best way to relieve your symptoms whether it is diet, over the counter relief, drinking more water,  exercising more, or a prescription.  Best wishes. 
Healing takes time and opportunity. Wendy Tea

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Sep 30, 2020 9:52 am

Whitelilies, You "crack" me up! 

Linda

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Sep 30, 2020 10:14 am

Thank you Wendy Tea. I am experimenting with my diet and OTC constipation remedies including fibre supplements. Also avoiding as many activities as I can that trigger nerve pain to avoid taking anything with codeine. My GP of 40 years retired recently and my new GP is in a clinic that will absolutely NOT allow their doctors to make patient phone calls unless it is in a booked teleconference appointment which will take at least 3 weeks. It's a very uncaring environment. I'm actually looking forward to having a cancer team. I will try phoning the surgeon's office for help. The staff there is at least kind and supportive. There have been some very helpful posts on this site on constipation and I'm following up on their suggestions. Seems like my whole day revolves around poop or the lack thereof, LOL.

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Wendy Tea on Sep 30, 2020 10:58 am

Saharabee‍  Are you able to get a diet or list of recommended foods from your surgeon?  I personally like the Mayo Clinic website which recommends fruit, vegetables,  whole grain foods and avoid red meat,  sugars, processed foods while staying hydrated.  Are you able to go for walks?  Take care.
Healing takes time and opportunity. Wendy Tea

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Whitelilies on Sep 30, 2020 12:48 pm

Saharabee‍ Hello Linda
I must add "crack" to my "arse"nal of laughter.
Re-Constipation.....try prunes, drink lots of water, and perhaps call Dr ofc to ask their recommendations too.
Eat smaller meals, to avoid feeling "so full".....gentle walk in park with Fall Leaves and Colours.....are beautiful to see and may help move things along.
Perhaps an ExLax Choc square?

Regards
Lillian

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Sep 30, 2020 1:47 pm

Thanks Lillian and Wendy Tea. Those are all great suggestions. I am forcing myself to walk daily though it triggers nerve pain but a short lie down generally takes care of that and it has such positive benefits emotionally. I have prunes on my grocery list though I detest them. My brother and I were compelled to eat them daily as children, so this may be a real "bummer".

Gratefully,
Linda

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by ashcon on Sep 30, 2020 3:17 pm

Saharabee
I swear by "Smooth Move" tea. You can find it in most major grocery stores, either in their regular tea aisle, or in the health food section.  The secret is to allow it steep for the recommended time (15-20 mins). Works like a charm! 
---- "Nothing ever becomes real till it is experienced." ----

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Sep 30, 2020 5:45 pm

Thank you so much ashcon. Adding it to my shopping list immediately. The constipation makes me feel absolutely toxic and bloated. Really hard to maintain a positive outlook. What a wonderful forum this is!

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Kuching on Oct 1, 2020 8:07 am

Saharabee‍ , I’m not sure if someone has already suggested this, but Restoralax was my husband’s saviour when he was constipated from taking morphine.  It’s available in any pharmacy, it’s a tasteless powder, you can put it in water or any drink, hot or cold, and it’s a lot gentler than Exlax.  It just softens things up, rather than acting like an enema.  He just took one a day and was good to go, so to speak.

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Oct 1, 2020 10:58 am

Thank you Kuching! I have added Restoralax to my ever growing list! I really appreciate the tip.

Linda

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Oct 1, 2020 5:34 pm

Scary but good news. The surgeon who did the colonoscopy called today. They have the biopsy and CT results. My follow up appointment has been moved up from October 23 to next Tuesday, October 6. I just might be able to make it until then without having a heart attack from the panic!

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by ashcon on Oct 1, 2020 5:52 pm

Saharabee‍   Good news that they have called you back with an earlier appointment, Some people would get panicked when hearing that the appt was moved up, but don't read too much into it. Sometimes it's just a question of scheduling and juggling appts around,  My brother-in-law had his follow up appt for post bowel resection scans recently moved up from end of this October to early next week.   
(Is it possible they are catching up in these days of covid???)

Don't forget to ask for copies of those scan and test results. Or maybe they are available through your centre's patient portal!

Do anything special to keep your mind and body distracted this weekend?
 
---- "Nothing ever becomes real till it is experienced." ----

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Boby1511 on Oct 2, 2020 12:41 am

Saharabee‍ 

Hi there. You type so friendly, wonderful attitude. I can hear the smile in your words. You sound blessed with wonderful support people.

Constipation! I suffer greatly! On daily restrolax (sometimes twice daily), orange pill morning (docusate), brown pill night (sennosides), lactulose.
Fibre supplements are not a good idea for me as I have an ostomy. Tip: these can all be prescribed and covered by insurance.

I have found white grape juice helps! (I have no sugar issues). I buy the welch's, drink at least one a day. (Sadly not covered by insurance, although should be!).

Sending you hugs. 

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Boby1511 on Oct 2, 2020 12:53 am

Saharabee‍ 

oh and Gum! I know not everyone can tolerate the chewing.
When I first got the ostomy they told me gum would help kick start the bowels.
I did find it helps/helped. Something about the swallowing I think. I can't remember.
It was in their pamphlet at the hospital (ostomy care). 
My onco doc insists I run all drugs by him, including the restrolax, which I thought was rather harmless.
Was just listing so you know you are not alone in the bowel issues! 
 

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Oct 2, 2020 2:46 pm

Really good suggestion on the gum, Boby1511! I must try that. Right this minute. I am getting to the point where I am afraid to eat.

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Lianne_Moderato on Oct 14, 2020 3:08 pm

Saharabee‍ 

How did your October 6th appointment go?


Lianne

Re: Is This Delay Normal - New, beyond overwhelmed and don't know what to do.

Posted by Saharabee on Oct 14, 2020 4:46 pm

Lianne, it went fairly well. The tumor is large but slow growing. The surgeon who did the colonoscopy doesn't think it has gone past the mucosa. It's been a whirlwind of tests since then. I am meeting with a specialist in Internal Medicine next week at the request of a colorectal surgeon whom I assume will be doing my surgery. Unclear as to why but I will find out. Not sure at this point if there will be radiation first to try and shrink the tumor. But things are moving along and I am grateful.

After I posted here I went into complete meltdown mode. Panic attacks that eventually consumed my entire days and nights. It actually felt like the abject fear might kill me. I finally talked to my GP and she prescribed meds for the panic and it was a godsend! Just drained all the nasty fight or flight adrenaline from my body and allowed me to function until I made it to the follow up appointment. Now that things are happening, I don't need the meds anymore, but I am so grateful to my GP.