I’m trying very hard to be as positive as my husband

[KimEMcT]

Hello!

I’ll apologize now for the long-winded post…

My husband (51 tomorrow!) went to the ER in November 2020 for a kidney stone, CT scan showed a large mass in his bladder.  The stone required surgery as it was too large to pass. The urologist called me after the surgery and I will never forget the words…”I just removed a very large cancerous tumour from your husbands’ bladder’.  It took 3 very long, stressful weeks (over Christmas) to get the pathology report indicating high grade cancer.  He was scheduled the following day for a ‘scrape’ (and instructed to get a Covid test prior…as if that wasn’t stressful enough!) to confirm invasion.  Another 3 week wait (over New Year’s) to thankfully hear that it was non-invasive.  The post-op report indicated the doctors concern of muscle-invasion based on the size of the tumour.  3 weeks later, he started on the 6 weeks of BCG treatment.  He coped very well with treatment. He had NO symptoms of bladder cancer whatsoever prior to the kidney stone and does not fit into any of the high-risk categories.  Needless to say, that kidney stone may have very well saved his life!

His scope, scheduled for April 25th was cancelled because…well, we live in Ontario. (Don’t get me started on that…I’ll go on for hours!).  Thankfully, his doc was able to reschedule at another hospital and he had the scope today.  Not the news we were hoping for as now we wait again for another TURBT and I’m assuming, another wait for pathology.  I should also add that my husband just lost his father in September 2019 to prostate cancer so a diagnosis like this has got me reeling.

Throughout all of this, hubby has been very stoic, upbeat and positive (one of the many reasons why I love him so much).  Although he wouldn’t admit it, there are times when he goes very quiet and I can’t help thinking that he’s understandably scared but won’t talk about it out of fear of scaring us, and it worries me   On the drive home today, he said that if he has to do this for the rest of his life, then so be it.  I’ll handle it when the time comes and not before. In other words, I won’t worry until I have something to worry about.  What is frustrating me, is that this is my typical mantra! I would argue that this is something to worry about!! I assure you, I am usually a very positive and upbeat person as well

However,  I am really struggling with all of this (on top of ‘everything Covid).  I do my very best to match his positive attitude and outlook but I can’t seem to stop my mind from going to a dark place.  If the last 6 months is any indication of what the next few years will look like…scope, wait, remove, wait, treat (rinse and repeat), I think the stress will kill me. (a little over dramatic there, but hopefully you get my point 🙂 )

I’d love to hear from other caregivers and/or survivors with coping strategies, especially during the ‘wait’ periods. If anyone can also share ways in which they felt most supported by their caregivers, that would be greatly appreciated.

UPDATE….as I’m typing this, hubby registered himself on the forum! (Yay!)

Thank you for listening, I’m so grateful for this platform.

Kim

 

[Edwin Castle]

Good morning Kim.

We have just gone through what you and hubby are going through. I was diagnosed November of 2019 and have recently had a clear scope, so yes I am in an optimistic mood. I also believe that Ontario is one of the best places for treatment. Except right now with this covid lockdown.

Now you two are younger than most of us on this site and I can understand the fear and anxiety that you are going through. I can assure you that we have all been there and yes the waiting is the hardest part.

It seems to me that your husbands has settled into what I think of as the new normal. As I am sure you know Bladder Cancer has a nasty habit of coming back and even the best case scenario will have him being checked every 3 to 4 months for a few years and less often after that when he is getting clear scopes.

When I first found out about the cancer I also freaked out and figured I was going to  die. Then I did my research and realized that was not likely to happen, at least not any time soon. Also my Nurse wife told me this will not kill you. ( She said she is not that lucky.) She was kidding I think.

Again as you already know, most men don’t like to show there fear and anxiety, and above all do not want to upset the family by going on about there health problems. This is to be expected, but keep in mind he is thinking about it and has come to accept that he is in it for the long hall.

You are in this together and I can guarantee that your support means more to him that he could ever express. As you read more posts and gather more information you will find that one of the most important things for you both to do is to live your life as you have always done.

You will find both inspiring and scary stories on this site from all over Canada but mostly you will find relevant information.

I do hope that he can have a better result from his upcoming Turbt  and he can get and remain cancer free. But like your hubby said. If I have to do this for the rest of my life, so be it. The new normal.

Stay safe Ted.

 

[SJay]

Hi Kim

I think I’m a bit like your husband. When I got the bad news, I didn’t feel afraid and could accept that things were now different. I felt more concerned and wanted to figure out how best to deal with the situation. I didn’t think it was immediately life threatening as it was non-muscle-invasive and treatable. If it got out of hand, bladder removal was a backstop. Eventually, the bladder did come out and I am now five years clear and all is going well.

The thing that would bother me most is when others projected their fears onto me. Asking me how I was doing with a concerned look on their face and some hand-wringing thrown in was not my favourite thing, nor was someone saying “let me do that for you.” Keeping things as close to normal as possible while being supportive and openly talking about what was going on were helpful. For example, I drove myself to BCG treatments because that was “normal.” If my wife was fearful about a delayed BCG treatment it wasn’t helpful. If she was irritated because it was delayed for non-medical reasons, that was ok. Support to keep strong is the goal.

Hope all goes well for you.
Cheers
Stephen

[Nightingale]

Hello KimEMcT,

SJay’s suggestions are spot on!  BTW, survival from non-invasive BC is quite good.  I myself am an 11 year survivor.

The one question I have for both you and your hubby is this; and it’s an educational type question.  You state in your post that he did not experience any of the typical symptoms of BC and that if it were not for the kidney stone, he would never have found the BC.  Did your hubby find himself urinating frequently?  I remember that in my case I realized after the fact that the urge to urinate could have been a sign, but I ignored it until I peed blood after running a 5 k race; which, was accompanied by a tremendous urge to pee.

Keep safe and thank you for sharing your situation in the Forum.  It helps all of us learn from each other.

My best,

 

 

[marysue]

Hi KimEMcT:

I can’t add much more to what has already been said, but would like to suggest that if you are finding the mental stress too overwhelming and many people do especially now with COVID, reach out to your doctor and see if you can have access to a psychologist/psychiatrist that specializes in helping cancer patients and their families.  We have such a service here in Calgary at the Tom Baker Cancer Centre and I have been told that it is worth while to go for a consult.  I should have done this on my journey but the services were not available at that time.  All the best.  ((((HUGS))))

[Author]

Posts