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Help!!! I'm a Wreck - Again!

Help!!! I'm a Wreck - Again!

Posted by Saharabee on Jan 9, 2021 6:14 pm

Hi everyone! I had finally come to terms with having LAR and taking my chances with LAR syndrome and hoping for the best. My surgery is scheduled for this coming Thursday. My pre-op meetings are on Tuesday, all by phone. Yesterday I went for a colonoscopy to get tattooed for surgery. Met my surgeon who seems very nice. He took one look and didn't tattoo. Says the tumour is too close to the anal verge to bother. By the time he leaves a good margin, he thinks there will not be enough rectum left for an anastomosis high enough to prevent major LAR syndrome. He says he is going to call early in the week to discuss. I am reasonably certain he is going to recommend a permanent colostomy right from the get go. I didn't want LARS, but I wasn't expecting this! I don't have enough time to change lanes and adjust emotionally. I now have 3 different recommendations from 3 different surgeons in the same colorectal unit, FFS! I have whiplash from changing gears. I don't want to cancel surgery because this has already been delayed too long, but I am panicked and very distraught. Come on my CC family, talk me off the ledge one more time. I can't stop crying long enough to get a breath. 

Re: Help!!! I'm a Wreck - Again!

Posted by Lacey_Moderator on Jan 10, 2021 12:00 pm

Hi Saharabee‍ 

I'm glad you reached out!

Changes so close to surgery are very unsettling. I'm sorry to hear the news. The one thing that came to mind is I'm glad you are finding this out now and not after surgery. It doesn't make it easier I know. But waking up and hearing the news might have been more distressing. I hope you get the opportunity to talk this through with your doctor and get the support you need to wrap your head around this huge change. I'm sorry this has been such an emotional rollercoaster. 

I hope you can chat with  Boby1511‍, IamJay‍, Whitelilies‍ who have experience with colostomy. There is a lot of information and support out there, you're not alone.

Please let us know how the call goes Tuesday. Tears are understandable, be gentle with yourself.

Lacey

Re: Help!!! I'm a Wreck - Again!

Posted by JWG on Jan 10, 2021 12:12 pm

Saharabee‍ 
Gods, how this is difficult. In my case, I didn't know until the morning of the surgery - literally minutes before they were about to put me under - which way it was going to go. btw, I have spoken to someone who has a permanent colostomy who been able to irrigate, and as a result does not use an appliance, but uses a stoma cap instead. I have spoken to him and he seems confident with the procedure - he gives himself a gravity based enema - although I am not sure exactly how it works or if it will work for everyone. I add this incase it helps your frayed nerves.
 

Re: Help!!! I'm a Wreck - Again!

Posted by cancertakesflight on Jan 10, 2021 12:45 pm

Saharabee‍ I'm sorry to hear you are going through this. I don't think doctors truly appreciate just how much of an emotional element there is to cancer. I also don't understand that having a clear plan has a calming effect compared to the chaos of the unknown.

As you said, it's hard to switch gears, but there is a reason that we use the term rollercoaster. There's nothing fair about it. It's just there and, like a real rollercoaster you can't get off part way through.

Please take the time to take thise deep breaths. You can't think clearly until you find a bit of calm even if that seems impossible. Find a distraction. Maybe go for a walk. Until you are in a better state this is not the time to make decisions.

Breathe. In. Out. In. Out. 

We are here for you. You are not alone. We are your strength when it may feel like it's slipping and that is totally ok. You have to adjust and that is the reason for tears.

Virtual hugs and feelings of warmth and friendship are coming your way.

We are with you.

cancertakesflight 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Help!!! I'm a Wreck - Again!

Posted by Kims1961 on Jan 10, 2021 1:35 pm

Saharabee‍  We are here lowering the ledge, so you don't have a leap off but rather a small step.

Although my journey was with breast cancer, the emotional roller coaster, can be similar. Particularly as i'm one who likes to understand the plan and follow through - last minute - potentially life changing decisions - were very hard for me. I came to understand that medical decisions can be fluid - the human body is so complex - and often what they think they are looking at, can be different when they "get in there". 

Changing my mindset wasn't easy.  Shifting to a new plan or information, created a number of powerful emotions. Anger, sadness, fear - probably really was all about not having control of this journey. I had to give myself a "pass", realize it is hard to shift gears but we can do hard things.  You are doing hard things now .

Do you have any activities that bring you joy and can distract you - until the appt?  cancertakesflight‍ gave great advice about breathing - something so simple can really help.  Yoga, meditation, a walk in the outdoors, cleaning , cooking - anything that you can do that keeps your mind and body busy .

I'm glad you posted and i see some very helpful responses.  You are not alone on that ledge.  Kim




 
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Help!!! I'm a Wreck - Again!

Posted by Saharabee on Jan 10, 2021 1:36 pm

Oh my goodness! What a blessed gift this web site is. I am so glad I reached out here instead of simply stewing in my own depair. Whitelilies‍ and Boby1511‍  were able to talk me back from the edge and look at the positives instead of the scaries. A good sleep did the rest. I face the day with gratitude that I have options and the renewed ability to cope with the results of my choices. On balance, this appears to be a slam dunk. Time for an education in ostomy supplies! I am so grateful to my new surgeon for putting this out there now. So much better than regret later for what I wasn't told.

Lacey_Moderator‍ Thank you for the calming words. The one huge bonus in all of this is that the new surgeon seems to be concerned with me as a whole person, not simply a surgically technical problem to be solved. Very comforting. I will certainly keep everyone posted on my talk with him and the pre-op team this week.

JWG‍ How terribly distressing for you. I can't even imagine! I am grateful for your intriguing words on managing a colostomy! Lots of fun stuff to learn as I move forward, LOL.

cancertakesflight‍ How appropriate your roller coaster analogy is! No getting off mid-ride indeed! I have often felt like just another widget on an assembly line during this journey so far, so it is refreshing to deal with a doctor who seems to be seeing me as more than just a rectum with an adenocarcinoma. A real person who wants to live the best life possible going forward. The emotional toll of a cancer diagnosis is huge.

Thanks to you all, I am ready to rock and roll! Let's do this!

Love to all.

Linda

Re: Help!!! I'm a Wreck - Again!

Posted by Whitelilies on Jan 10, 2021 1:43 pm

Saharabee‍ Hi Linda.....all your emotions are coming up....this is natural....I too would have "sore neck" from turning and facing 3 different doctors.....same unit?? oh my gosh.....
There are Pros and Cons, to everything....truly .....
There are pros to bag......some cons as well.
The real concern Linda; is to get the cancer OUT !! Be Gone.....that is the focus, for surgeon.
You can focus, after, on healing etc, and we are ALL here for you.
I do recall reading....that  if tumour  is above 5cm from anal verge, is "better" at QOL for healing and moving on.....(once removed)
If tumour, is below 5 cm from anal verge, even upon removal, it will be a difficult healing and more.  The closer to anus, the less "control".
Step by step now Linda.....let surgery occur.
This is a GOOD thing......people are being cancelled left right n centre.
Let Thursday happen.
Let Dr (I hope you trust him-her) do their role.....get it out.....with CLEAR margins......I will throw you a virtual party !!

If it is Colostomy bag....so be it....there are PRO to this.....you can horseback ride !  you can stand in line at bank !  you can wear a tight tshirt !  you can laugh !  you can call me to laugh more ! you can rock climb!  you can be a pest to Ostomy Nurse !!  
Plethora of Choices!
Please laugh now.......levity is needed.
I know before any surgery, our minds "go there"....to the yucky zone....I hear ya!
Please know, that when I had surgery as well....they did say "temporary bag"....I did NOT hear a word.......I did NOT believe them.....what ifs???what if during surgery things change? So, there are no guarantees.....MAYBE Dr will be able to pull 2 ends together?  Maybe Anastomosis?  One can still hope.
On the call Tuesday....please write down your questions.......
When will you know Dr "what" surgery will be done?
Is it by Laporoscope?
Is it APR surgery?
Is it LAR surgery?
Which Dr makes final decision?  which of the 3?  Or....just your Dr, on his own accord.
Ask Dr "why"....get explanation you are OK with.

Please know, that we are here for you !!

VIrtual Hugs
Lillian

ps what happened to the "Panty Party"?
pss Old Navy sent me an email / honest/ there is a Cardigan Sale !!! 25 % off.....go Linda.......

Re: Help!!! I'm a Wreck - Again!

Posted by Brighty on Jan 10, 2021 2:09 pm

Saharabee‍  so glad you feel better today and you connected with some awsome members  here.    I'm going to also tag Haemish‍  who can talk about his experience  too.   It makes me smile how supportive this site is and smile even wider to see how much better you are today.     You rock and roll!!!!! You can do this and we are here to support you.
Help is out there. All you have to do is reach out.

Re: Help!!! I'm a Wreck - Again!

Posted by Saharabee on Jan 10, 2021 2:12 pm

Kims1961‍ and Whitelilies‍ 

Hugs and Kisses to you both for your kindness. This site enabled me to sleep last night instead of doing frenzied online research. Badly needed sleep. So restorative. A lovely walk in the snow with my beloved goldendoodle Maggie this morning with plenty of deep breathing. Bacon followed by a couple of Godiva chocolates and I feel great. Always keeping a wary eye open for our pair of resident coyotes though. 

Whitelilies‍ My MRI stated that the tumour was 7.5 cm from the anal verge but the new guy says it's closer than that. He wants 5 cm margins (good by me to be conservative with that) so not much wiggle room. I have a great new cardigan with pockets and some ultra large panties so I am good. If they have mercy and remove some of my saddlebag belly fat I might think about the tight Tshirt, LOL.

Now just hoping nobody throws a new wrinkle at me this week. I am ready to do this!

Hugs!

Linda

Re: Help!!! I'm a Wreck - Again!

Posted by WestCoastSailor on Jan 10, 2021 2:51 pm

Saharabee‍ 

Wow. That's a rollercoaster all right. I have no experience with your particular challenges.

In one of my early meetings with my medical oncologist, I asked who was in charge. My GP had already told me they were the generals and he was just the private so I knew it wasn't him. But I had a breast surgeon, a radiation oncologist and a medical oncologist all dealing with my cancer. His answer was very revealing and gave me a great deal of comfort. "We have worked together on many patients and we have never had a major disagreement."

We later added an endocrinologist to the mix and have had no challenges there either. I discovered that my case was unusual enough that it went to the "Tumour board" on a regular basis and there was always consensus on how to move forward. I did find on occasion that I needed to be the courier of information to make sure that everybody knew what everybody else was doing.

I do like to think that oncologist put the pants on one leg at time just like the rest of us. While they often display arrogance remember that they work for you and you can ask all the questions you need to to be comfortable.

Good luck as you sort this out.

Angua
My story: http://journey.anguspratt.ca

Re: Help!!! I'm a Wreck - Again!

Posted by law on Jan 10, 2021 3:08 pm

Hi Saharabee‍ ,
O My-----you are courageous with a Capital C  !!!!!
It took all my wimpy bravery to read your posts and the responses from the amazing people on this web site.
By adding my little bit, I would only be "gilding the lily", parroting all that you and the replies have stated in posts.
SO.......................I certainly understand your whiplash with at least 3  surgeons' suggestions.... thank goodness you had the wisdom to do research BEFORE any surgery was performed!
Please keep us posted as to the result of your Tuesday phone conversation and also know that you have many ears and hearts open here for you.
law

Re: Help!!! I'm a Wreck - Again!

Posted by Whitelilies on Jan 10, 2021 5:00 pm

Saharabee‍ Hi Linda...I am SO happy, that you feel better and stronger and ready! For Action !
7.5 cm from verge is great....but...we/non doctors dont know the "other stuff" they need to contend with....the medical mumbo jumbo....
Put your trust in Surgeon....ask for FREE liposuction......and know that ALL patients are "instant beauties" dawning the Blue Hospital Trendy Gown, flowing, feminine, bows and at times a FREE show in the posterior zone.  Ya cant loose Jan 14th.
We are all here.....to lift spirits....
Soon; more tips......ya I know you are eager for them....perhaps sitting on the edge of your lazyboy chair.....but, you gotta wait.....as i will not "overwhelm"...I will be "patient"....some super cool tips, coming your way soon..........save the date !! what date??? dunno.
Please laugh all day today.

Linda: We have roaming coyotes too!!!  Am terrified to walk...my only joy.....so; now I drive....and then walk !!

Hugs
Lillian  

Re: Help!!! I'm a Wreck - Again!

Posted by Saharabee on Jan 10, 2021 8:14 pm

Brighty‍ , WestCoastSailor‍  and law‍ ,

Thank you for your warm words. I can't express how much it means to me. Last night I was a shaking shambles of a woman. Tonight I am crawling into bed feeling blessed beyond imagining and warm and safe in the care and concern of this wonderful community. It's certainly a truth that every cloud has a silver lining. Without cancer I would never, never have experienced the incredible support and love found here. Whitelilies‍ paraphrased it best when she said it takes a village to help a cancer patient through the process of diagnosis and treatment. She couldn't be more right!
 

Re: Help!!! I'm a Wreck - Again!

Posted by Sammie59 on Jan 11, 2021 11:37 am

Hi Saharabee, 

First, ugh. I feel for you with all the back and forth and last minute stress. My hubby had a whirlwind diagnosis, and was in surgery immediately and told then and there that his colostomy would be permanent. It was a lot to take in, but at least it was clear. The intention was to remove the tumor after and do a Ken Butt surgery, but a lot of other things got in the way and well, that's another story. 

I just want to tell you that as daunting as the thought of the colostomy/bag/new pooping apparatus may be, it's a manageable thing. Paul has really bad neuropathy in his hands and can't manage his ostomy himself, so I've become the house expert. Please, please feel free to reach out for any hints, help, or even just hand holding. 

Sam

Re: Help!!! I'm a Wreck - Again!

Posted by Saharabee on Jan 12, 2021 11:08 pm

Thank you Sammie59‍ !

Everyone. This has been a week of incredible stress and frustration and today was no different. Still no call from surgeon. I rebroke my molar last night and had to try and get another dentist appointment for today as tomorrow is the dreaded bowel prep day. The pre-op calls went ahead as scheduled with the framework being the wrong surgery. The nurse was unhappy at not having been told of the change of plans. Apparently I need a session with a stoma nurse to mark my abdomen for stoma placement. Apparently I also need blood work prior to surgery. She insisted that I travel into Ottawa today for the blood draw. How was that going to be possible? I already had to squeeze in an emergency dental appointment. A 3 hour trip to Ottawa simply could not be done! Luckily the anesthiologist said that the blood work could be done Thursday morning prior to surgery. He is my new best friend. 

After rebreaking the tooth, I had succumbed to panic. Barely hanging on to my frayed nerves by a thread. I didn't think I could manage any longer. I put a call into my GP for pharmaceutical assistance. A prescription for panic management meds. Only to find the office closed due to staff exposure to Covid! No one answering phones. No way to leave a message. I called the pharmacy who could do nothing without doctor approval. Good Lord, how many more things could go so badly wrong on this journey? As it turns out, a sweet pharmacist was able to track down the doctor and resolve that issue. Had my dentist appointment at 6 PM. Nothing could be done with the tooth until after surgery, so another hour wasted. Meeting with the surgeon tomorrow morning. Hope there are no new surprises in store. I am fried. Hugs to all!

Linda

Re: Help!!! I'm a Wreck - Again!

Posted by Cynthia Mac on Jan 14, 2021 9:17 am

Hi, Saharabee‍ , Just popping by to see how your meeting with the surgeon went.

I also want to agree with Sammie59‍ about the colostomy bag. I have no experience personally, but a distant relative of mine (very distant) served as mayor of a mid-sized city after her colostomy surgery. Now, I’m not suggesting that you need to run for public office, merely point out that it is possible to do lots of things after that surgery.

 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Help!!! I'm a Wreck - Again!

Posted by TravelBugMick on Jan 14, 2021 5:36 pm

Hope all went well Saharabee‍ with surgery. Keeping the fingers crossed for you. I think I am escaping the need for an ostomy but if I do end up getting one I want racing stripes or flames painted on it.... 👍
 

Re: Help!!! I'm a Wreck - Again!

Posted by Whitelilies on Jan 15, 2021 11:02 am

Saharabee‍ Hi Linda....am thinking of you........and hope all went well on Thursday.....
Now, it is time to ***heal***
Rest, read, heal, breathe out.....your body will be strong, once again.....soon they will want you walking a bit.....(covid ?) walk in your room?.....soon you will get delicious hospital food !! (OR you can try uber eats...ask them to toss a yummy lunch order, at your window-sill??? just a thought......)

Healing thoughts for you,
Whitelilies
 

Re: Help!!! I'm a Wreck - Again!

Posted by Sammie59 on Jan 15, 2021 1:11 pm

Saharabee‍ , just popping by to check in. Hope you feel well enough to update soon.

Sam :)