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Hubby's cancer is still present 
Started by JennJilks
11 May 2014, 11:54 AM

I have just posted my latest story, XXI –Lessons learned, after myself going to emerg with chest pains and anxiety issues from being caregiver to my husband after prostate cancer surgery.
We went back to the urologist, and he still has PSA in his blood stream. The Bone scan, MRI, CT scans last fall, indicated it wasn't there, but this was prior to 2014 and surgery Jan. 28th.
After my son's wedding this week, we will be telling our children that the surgery did not entirely remove all of the cancer cells. Hubby still has some roaming PSA cells. We don't know where.
He goes back in 3 mos. to have his PSA retested.
With hormone therapy, he could live 5 - 10 more years, but they won't do anything until his PSA count goes to 5, currently it is 2 or 3, two different tests gave two numbers. The PSA should be zero after prostate removal.
In a way it is good to know how much time you have. It lets you plan and prepare. Each day is precious. 
I am sad. I am pregrieving. I am tired and tense. 
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Reply by NatR
12 May 2014, 3:40 AM

Dear Jenn,

thank you for sharing the update about your husband and the news that numbers and tests are not what they should be.

I can only  imagine how scared this makes you both, it's such a letdown and disappointment to say the least - and in fact a crushing blow after going through the surgery and all the upset your household has gone through.

i know that you have had more than your share with your ex husband also passing away during this difficult time.  It seems like good news should be what happens next - not another blow to your already stressed life.

Jenn you are an example of an informed and courageous caregiver, wife and mother.
you share uplifting posts, photographs and blog about health aging and caregiving- and now is a time for you to accept help and support from your family friends and extended online community here at the forum.

i understand you postponing the news til after the wedding coming up - and I know your heart, your husbands and your family will  need the "circling of the wagons" - the support and positive reinforcement lifting you up as you await the next tests.

it is hard to understand why a negative test is responded to with a wait and see if the numbers go up - before we do anything....attitude.  That just plain sucks!!

do keep updating as you go through the next weeks - and the one positive thing I can bring up is that Thank goodness winter has finally retreated!!!!  That in itself is a mood elevator!

i will be thinking of you both and sending you positive energy daily - as I am sure others on the forum will do as well;) 

you are not alone Jenn;)
sending a huge hug your way and hoping that your stress level goes down a bit.

write when you can;)
sincerely
NatR 

 
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Reply by KathCull_admin
12 May 2014, 4:52 AM

Dear Jenn
Florence Nightingale wrote, "Apprehension, uncertainty, waiting, expecation, fear of surprise, do a patient more harm than any exertion." I think we could put 'do a patient and family members' in there too.  

I hope the birds are signing for you in the morning.. Nature has a way of soothing our troubled hearts.

Take care
Katherine 

 

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Reply by JennJilks
12 May 2014, 4:01 PM

many thanks, Nat and Katherine. They are, as always, comforting words you write.
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Reply by Digger
18 May 2014, 3:00 PM

Jenn,


I read your post and watched the short video of your partner in the backyard. What to say?


Seeing him sitting there made me think how important ‘space’ is in healing. Space allows the part of you that is not the body or the mind to expand. Lasting healing, in my view, seems to come by way of relaxation, renewal, music and meditation – all things that create space.


The doctors refer to self-healing from cancer as ‘spontaneous remission’ – they don’t know what else to say. Perhaps this is an admission that creating space with drugs and surgery, while sometimes effective, is often temporary.


Maybe this is a call to create some space and allow the healing unfold.


Best to you both.


Dale

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Reply by JennJilks
23 May 2014, 12:48 AM

Thank you, all who responded. 
We managed to attend my son's wedding in Surrey, BC. It was a beautiful wedding. The reception was a bit more difficult.
It was a whirlwind trip, with everyone going wrong. Hubby's stomach was upset for days at a time, what with his stomach meds. We were surprised it wasn't even worse, and grateful for that. 
I managed to get a speeding ticket on the way to the rehearsal and it was an ugly cry.
It was a beautiful wedding. Hubby gave a wonderful speech, since both bride and groom were missing their late fathers. My son's father died only last February. There were many tears and then the bride's 'Uncle Jimmie' came to me to mourn his two daughters who died from cancer. I started crying.

My kids started crying since they had lost their father. Then my daughter snapped at me. The groom brought out the last bottle of beer his father had made. More tears. We went back to the hotel and I had a bath.

I was under stress and anxiety, and burned myself out walking about Stanley Park. He desperately wanted to visit his old haunts, he lived there for 10 years.
We were so grateful to arrive home. He is off his meds, peeing up a storm (which is bad), but his stomach is better. Sigh.
Next, another PSA test, July 24th. We try to relax and enjoy each day. 
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Reply by NatR
23 May 2014, 1:05 AM

Dear Jenn,

i could cry cry with you - such mixed feelings, so many losses for you and others  ~ and the wedding to boot!

you did a great job!
you are a wonderful mom, grandma and wife
your hubby must be so happy to be home - as you are also relieved to be home!

you smiled through it all, the pictures were beautiful and memories were made;)
rest now - well deserved:)
hugs, sending good thoughts
natR  
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Reply by JennJilks
27 Jun 2014, 2:11 PM

Well, procedure went well. Things look good on the plumbing part of things. I made a video of the cystocopic procedure! It's good to focus on this type of thing, for me. I also make copious notes.vim

The PSA of 0.46 doesn't worry our Dr. now. Once it hits 0.5 the next step is intermittent androgen therapy. Next appointment is Sept. 15th. I am so tired. Damn awful drivers out there, passing on curves, 4 x 4 trucks screaming around us; incident with fully deployed air bags, crap on the road, two cops, ambulances, on the way in on the highway. Deep breath!

Here is the update hubby sent his buddies, who are fretting needlessly. We remain focused in the present moment.


We have been off to the big city again.

Another cystoscopic treatment, to determine if there are issues, all looks good.

 

However my PSA  is up from 0.24 to 0.46

0 would be the expected, and anything over 0.2 is likely to be a spread of my cancer.

 

We will test again in Sept., At the 4 to 5 point , I would go on hormone treatment.

 

So really no change in the diagnosis nor prognosis.

.

I was in a store in Arnprior yesterday, where the owner has a box with blue bands for donations to help their neighbours with expenses in their trips to Ottawa to get treatment for Wayne. 

 

Wayne is 4 years old with brain cancer.

 

If I hadn't perspective on my situation, and I think that I had, this certainly reinforced it for me, and it should for you.

 

Everything else is great, all my post operative symptoms are gone.

 

Grandkids and Caitlin are coming Sunday and Monday. 

Yes, we focus. Read as much as we can, but trust the doctor, who is fabulous, as all said in his waiting room. Men sitting around in hospital gowns waiting for Dr. C to shove an endoscope up their urethra.
I helped a man, 88 yrs. old, who couldn't figure out the gowns. First one on with opening in back, next reversed. His butt cheeks open to the folks in the room!
 His next plan, to get as physically well as possible. He's gone back to the physiotherapist for the back exercises to improve that. Once he does, he can go back to the treadmill and walking that helps him keep more fit. He is watching his diet, off dairy, lost weight.
It's all good, but stressful nonetheless.
The 90 minute drive into the city, past accidents, ambulances, being passed by speeding drivers, hell bent on going faster, all make me upset. I'm trying to centre, too. 
I carry on with my client, who has ALS. He is a pet. It is a break, surprisingly.
 
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Reply by NatR
27 Jun 2014, 2:39 PM

To both of you,

sending my go my prayers and thoughts your way as you take each new day and concentrate on positivity, the world around you as well as the little world inside your lives.

uncertainty is definitely part of what you deal with each day - but I see you both doing it with strength and courage - concentrating on doing what you need to, yet seeing so many around you who need thoughts, support and perhaps a miracle.

jenn you and your hubby are so fortunate to have each other;) I can feel the love and support between you;)

sending you a virtual hug as you continue to care about each other, your families and your clients.
sincerely,
natR cheers!! 
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Reply by JennJilks
21 Jul 2014, 2:05 PM

Katherine very kindly asked about us. I do have an update. It's important to write and journal. Especially important to remain positive.
It's been a tough go. We are happily taking the summer off worrying about cancer. His next PSA test in mid-September. We will see what that brings.


We are keeping busy. We've had our granddaughters (age 4 & 6 1/2) for a week, while our kids camped and climbed in Gros Morne park. This has been excellent for me. Such joy wee ones bring.


Hubby's stomach issues are the worst part. Finally, he is going to a naturopath, and we will be checking for food intolerances. Dairy is a sure bet, but he's simply not been feeling well for a year. He's had an endoscopy and he doesn't have ulcers or anything.

 This is awful and worse than the cancer threat looming in the future. He has some prostate cancer cells remaining, and they are multiplying each day. You just deal with it on a live each day as if it is your last basis. This is why his stomach issues are so awful. 

In a week he has the blood test for food intolerance, then he's to do a cleansing with certain foods. I am shuddering, as he doesn't like quinoa, or other things like this. He doesn't like meat, either. The recipes and diet he's to follow intimidates me. 
 



 I'm choosing who and what and how I talk to very carefully, as staying positive is most important, as is living in the present. I have vowed to stay off that 'What If' train.
The good news is that the Monarch butterflies are back. Each day, look for those golden moments.Monarch on butterfly bush 
 
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