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Feeling robbed of a honeymoon...

Feeling robbed of a honeymoon...

Posted by gem1007 on Mar 10, 2019 1:32 am

HI there,

Just here using this as an outlet to go over the rollercoaster of events
  • August 2018 (less than 2 months before our wedding) we found out that my fiancé had a tumour in his bladder
  • September 2018 - (less than a month before our wedding) he underwent surgery, TURBT to remove the tumour --> pathology: Muscle Invasive Bladder Cancer --> referral to specialist at Sunnybrook
  • October 2018
    • We had our wedding :)  Yes, the health situation added additional stress, however at least we had the wedding to focus on as a positive distraction. We were also still waiting for our referral appointment. Unfortunately, we were not able to go on a honeymoon as we were waiting to meet with the doctor to learn more about the situation. Not only were we not able to go on an actual honeymoon, I feel like we've been completely robbed of the honeymoon stage of our marriage. Don't get me wrong, most of the time we try to stay positive and optimistic, however I do have my moments where I think how different/happier we would be if we weren't going through this right now.
    • About a month after the initial referral we hear back from the specialists office for an appointment.
  • November 2018 - Explore options, surgery vs chemo vs radiation. Plan: Chemo Followed by Surgery
    • CT showed lymphnodes were enlarged --> oncologist recommends starting chemo ASAP
    • Sperm Banking - Due to chemo effects on sperm + the double whammy that the surgery will also require taking out his prostate gland out --> preservation of sperm so that we can still have children, [I always said I wanted to wait a year so that we could enjoy life just being married... but these types of situations can change your mind. We did try in the 1.5 window but were unsuccessful]
  • December - January 2019: Chemo Treatments Started, 2 days every 2 weeks, we were told because he was young he could handle an aggressive protocol
  • January 2019 - Post Chemo CT --> Despite chemo the tumour GREW!!! --> Surgery ASAP. [I had previously come to terms with the plan of chemo and surgery, that was when I thought this was the entire process. But since the tumour Grew, it is likely that surgery may not be the final step in the treatment]
  • February 2019 - Surgery to Remove the Bladder + Prostate
  • March 2019: Pathology: Urothelial Carcinoma, Plasmacytoid variant -- so we are told this is an extremely rare and aggressive form... and now we are waiting for a CT to determine what are the next steps... the waiting game once again...

Re: Feeling robbed of a honeymoon...

Posted by cancertakesflight on Mar 10, 2019 8:43 am

Welcome to the site gem1007‍. I am sorry to hear that you are on such an emotional rollercoaster. I can't imagine what the contrast is like the expectation of the happiest time of your life and the scariest and emotionally draining time of your life.  

The joy (and I use the term loosely) of this site is that there are lots of people who have been in your shoes or close to your shoes. Everyone is great. While I have not been in your shoes, I am tagging BrightyWesT‍ and ACH2015‍ because I believe they can help you. 

Keep us posted. We are there for you and care about what you and your husband are going through. 

cancertakesflight (Debbie)

Re: Feeling robbed of a honeymoon...

Posted by ACH2015 on Mar 10, 2019 10:08 am

gem1007‍ 

There's never a good time to get a cancer diagnosis, and as you have described - there are worse times. Sorry to hear it came along when your lives as a couple were just beginning.

Rare cancers can be more challenging, (I have one myself) , however from what I read your husband's oncology team did a wonderful job in diagnosing this Urothelial Carcinoma, Plasmacytoid variant cancer. Its not easy to diagnosis, and that is key in determining the treatment path.

You provided a very detailed chronology of events, and it looks like the medical team has acted quickly with the various treatment options and are keeping on top of your husbands case as treatments require changes and further discovery (March pathology report / diagnosis) is made. I say this as a patient that has no known primary origin to my cancer, and am faced with doctors chasing the cancer ghost through monitoring.

It is an extremely frustrating and scary place to be - in the waiting game again. Like my surgeon said to me. its important to know exactly what we are dealing with before we dive in. Case history review, multiple referrals and testing are vital in getting it right, and sometimes that takes longer than we think it should.

I can offer suggestions from my experience: Ask the oncologist or surgeon if your husband's case has been discussed at a tumor board. This is a form of 2nd opinion where a case is brought up with multiple specialists to seek the best possible course of treatment. Information provided will include where and who the best treatment options will come from. It may also lead to further referrals and tests to get it right with treatment options.

It's also important to ask if there are any clinical trials your husband could participate in. Clinical trials involve experimental therapies that have been moved from the lab into human trials. This is how first line treatments come to be. Clinical Trials can be offered at different times through out treatment, and require meeting criteria and giving consent for participation.

I hope the upcoming test results provide both you and your husband, and the medical team with the information needed to make the treatment decisions to move forward with.

Don't forget self care. As a caregiver you need to look after yourself. Sharing here and with friends and family are very important. Hospitals have social workers (and some have groups) to provide both you and your husband with outlets for counseling, resources and coping strategies.

These links Coping when you have cancer and If you are a caregiver are from the Canadian Cancer Society, and have good information and coping strategies for both you and your husband.

Keep well

ACH2015













 

Re: Feeling robbed of a honeymoon...

Posted by Kims1961 on Mar 10, 2019 1:04 pm

gem1007‍  Welcome to the site and if there was a "virtual hug" button i would send it to you ( if you like hugs).  Certainly not having your honeymoon is not just about missing out on the adventure itself but also symbolic of how cancer has changed your life plan for the moment.  It seems completely unfair that at this junction of your journey as a couple you are given this hurdle to manage. ACH2015‍  has given some excellent suggestions and tagged you to some really helpful people on this site.

First - thank you for posting your story.  Your story can also be connecting many others out there.  Cancer has "robbed" many of us of  experiences and added others.  Support groups have been really helpful for both the cancer patient and the caregiver.  Connecting here is great and also there is a community service locator to find support groups in your own community  http://www.cancer.ca/en/support-and-services/support-services/find-services-in-your-area/?region=on

Also know it is ok to just be angry at what cancer has taken. There is hope and we are here for you.

Kim
 

Re: Feeling robbed of a honeymoon...

Posted by WesT on Mar 10, 2019 1:30 pm

gem1007‍  Thanks for posting your (and your husband's) story.

As ACH2015‍ said there is no good time to get a cancer diagnosis and even worst as you are just about to start your lives together.

His medical team seems to be on top of things and the fact that you want to start a family and your husband did the sperm banking is good.  I am a prostate cancer survivor (one year this week) and with the surgery option I went through, ejeculation is no longer possible so have sperm stored was a good call. Hopefully when they removed the prostate they were able to leave one or both of the nerve bundles intact so you will be able to enjoy a normal and natural sex life at some point in the future.  If not, fear not as there are other options to move forward with that once it is all done with and he is ready.

The waiting game is definitely the hardest part.  It gives you time to think of all the bad things that may be in store but at the same time if gives you time to look at all of your options so you can educate yourself on best treatment path. His medical team will make recommendations as to the path he should take but it is his choice in the end so education is good.  Read as much as you can and compile a list of questions for the things you are unclear with.  The medical team may not go into depth with some of the potential side effects so if you are aware of a potential side effect you can ask specifics about it so you are not surprised if it becomes an issue at some point.

If you have a break in his treatment and he is physically up to it, take your honeymoon.  The distraction will be good.  Do something you both enjoy and enjoy it to the fullest!

Both of you are going to be dealing with a lot of emotions so don't be afraid to reach out for help whether it is here, a support group, professional or whatever.  As a caregiver don't neglect your own needs and mental health.  I will be challenging for both of you.

Please keep us informed of his progress and if you need advice or just someone to talk to, we are here!

Good luck in your shared journey!
Wes

Re: Feeling robbed of a honeymoon...

Posted by gem1007 on Mar 10, 2019 2:26 pm

Thank you all for your kind words and support. I can't believe I didn't know/sign up to this community sooner. Better late than never.

A couple other things I didn't include in my original post, reading through the pathology again
  • Primary Tumour PT4a
  • Regional Lymphnodes pN2
  • 5/38 lymphnodes that were removed during the surgery were positive for metastatic urothelial carcinoma. I know that it would be ideal if it were 0 lymphnodes affected, how good of a sign that only 5/38 were affected?
  • In addition to the bladder some of the margins removed were positive for urothelial carcinoma - the surgeon commented that he removed as much as he could
  • The oncologist also told us, that cancer in the lining is harder to read through scans - so this is quite worrisome
  • The above I find quite concerning, but I guess I should try not to think about it and until the next CT scan results -- any advice?
Does anybody have any advice on diet (Or is there a resource/link I should refer to). I remember trying to read about it in the earlier months of his diagnosis but I got overwhelmed and confused from alkaline to vegan to keto, to avoiding sugars. There seems to be no clear consensus.

Add on top of that, his bowels went through the ringer (from prior surgery and this surgery) he was off fluids and solid food for 2 weeks. Now that he is out of the hospital I believe they are still recovering, he is experiencing a lot of cramping perhaps trouble digesting food and he goes from one extreme of constipation to diarrhea. He also has lost a lot of weight, so we are trying to get him to gain it so he can continue to recover faster and has the energy he needs (he also has low energy). The nutritionist mentioned using Meal Replacement drinks (we are trying some of those out, but options are limited because my husband is lactose intolerant) -- however I also question these because of their ingredients and levels of sugar. Yes he needs calories but doesn't sugar also feed cancer?

cancertakesflight‍ - thanks for your kind response and linking me to other individuals :)

ACH2015‍ - Yes, I completely agree that it is best ot know what they are dealing with so that they can formulate the proper plan of attack. Unfortunately, it still doesn't make up for the angst that we feel while we wait in uncertainty. We've taken on a lets just live our life take things day by day as there isn't a lot we can do in the interim.

Thank you for the tip about the tumor board, I will ask at our next follow up appointment. Our oncologist also mentioned looking into trials, but I believe she is waiting for the next CT scan results to understand what exactly we are dealing with.

Sharing here is definitely a great outlet (I do talk with my husband, but I think sharing/talking here will also help me control or limit showing him my more vulnerable/emotional states). I will continue to read through the various links and resources as you are right, I need to take care of myself so that I can be there for him,

Kims1961 sending a "virtual hug" right back. Thanks for the reminder that it is okay to be angry. Even though we haven't gone on our honeymoon just yet we still talk about it sometimes and when things settle down we are likely going on a trip to Hawaii 😃

WesT - I'm happy to hear of your positive outcome. Belated Happy Anniversary 😃. And yes, the honeymoon, we still planning on doing one whenever it will be possible.


 

Re: Feeling robbed of a honeymoon...

Posted by Brighty on Mar 10, 2019 3:30 pm

gem1007‍  welcome! Im so truly sorry for what you are going through.     I can relate  because  I was in a similar  situation.    My fiance was diagnosed  with cancer before out wedding  too and it totally rocked our worlds.    You can read my story if you click on' community news'  and click on' meet brighty. '  you got some great advice from ACH2015‍  WesT‍  and Kims1961‍ .     Meal replacement  drinks are a good source of nutrition.     There's one called resource  which has a lot of calories.   You can also get a blender and make shakes and put whatever  you want in them.     You can add protien powder to them for calories.     Aly‍  can give u more tips on diets.      You can add calories to anything..  extra butter..  mayonase.... protien powder...... the most important  thing is for him to gain strength  and weight.     please don't forget self care for yourself.     Take good care of yourself too.  It is essential  to  survive.    Eat.. sleep... see friends. .. Treat yourself. . See funny movies..... ask for help is also key.    A support  system is essential  too.    Lean on people  and let people  help and be there for you.      Talk to a therapist if need be and do mundane  tasks.   Please feel free to private message  me whenever you want to if you want to adk any more questions.    We are all here for you.  

Re: Feeling robbed of a honeymoon...

Posted by BAMason on Mar 11, 2019 5:44 am

Welcome. I’m so sorry you and your husband are having to go through all of this. If you are at Sunnybrook Hospital, there is a wonderful support program for both of you at Wellspring, Westerkirk House. It’s located in the big house in Sunnybrooks parking area right in front of K Wing. They have peer support counselors ( I’m one of them), and programs, groups, nutrition courses, etc all designed to support both of you as you walk this road. Drop in. You don’t need an appointment. God’s speed to both of you. 

Re: Feeling robbed of a honeymoon...

Posted by LPPK on Mar 11, 2019 8:21 pm

gem1007‍   A honeymoon does not have to immediately follow a wedding.  In fact having a honeymoon at another time can be just as exciting. 
Our honeymoon was on our 10th anniversary, with our 3 children (4, 2, and 10 months)  at Disney World. 
 

Re: Feeling robbed of a honeymoon...

Posted by Kims1961 on Mar 11, 2019 9:36 pm

gem1007‍ Thank you for the update.  There is so much info. that gets conveyed at appts. from various medical professionals - it can be hard to remember what was said , who said what and if there is differing opinions.

I have breast cancer and during my treatments, I started to get ill from side effects.  I had trouble eating and got into a dark hole - loss quite a bit of weight quickly.  The problem was that I created a negative spiral, the more unwell i felt, the less i ate and drank and then the more unwell i became.  Then came the constipation etc etc.  So...in speaking with my medical team, the key was to get food - any food and water into my system.  I would highly recommend you get in touch with the dietician at the cancer centre, or oncologist or doctor - to inquire about your concern around sugar and cancer. They told me - it was better to get something down - worry about nutrition later once i had stabilized. 

So much easier said than done in regards to waiting for the next CT Scan.  When is the next scan?  Did the doctors give you an idea on what to look out for in the meantime?  

We are here for you!  Kim