Friday, 16 April 2021

Still Standing

Hello, friends.

Thank you for your kind comments and for continuing to check in here.

I also want you to know that I read many of your blog posts and am thankful for both the distraction and the chance to keep up with your lives.

I want to tell you more about my husband's illness and death, and how things have been since then. There is a purpose to this beyond bringing you up to date. You will see what it is by the end of the post.

For a few weeks after my husband's death, I ran on adrenaline. I had deadlines at work, I had bills to pay, and I had a lot of paperwork to do. The paperwork was overwhelming and I was fortunate to have my brother's help in prioritizing it and making a plan to get it done. Everything that seemed like it should be straightforward, wasn't. Everything that seemed like it should happen quickly, didn't. It was exhausting thinking about it and then it was exhausting making the phone calls and writing the emails and mailing forms and documents away. Finally, it was exhausting not knowing how long it would take to hear if problems had been resolved.

After that initial frenzy of work and paperwork came a lull. Suddenly it felt like all the energy had been sucked out of me. I continued to work because the concentration my job requires gave me some daily mental relief from the sadness and grief. Many days I felt like I could barely take the steps it required to get out the door. And when I left work to come home, I wouldn't get more than a few steps out that door before reality, and the accompanying pain, came into full focus again. I felt broken, and I wondered if I would ever feel any different. Even with the support of my family, friends, and neighbours, it felt like I couldn't get rid of the massive boulder that seemed to sit on my chest. I was never far from tears, and I was lousy company. The scenes from the past year, and especially that last month, played over and over in my head when I had time to think and nothing to distract me. The grief over how he suffered and died was as bad as the grief over losing him.

Cancer is a horrible disease. Esophageal cancer may be one of the worse forms. I don't know - I haven't had much experience with other ones. What I do know is that my husband wasted away from a robust person to a skeleton in a matter of months. His last month was horrifying beyond anything I had expected. With the help of the local palliative care team, I was able to look after him at home. It was what he and I both wanted, and I am thankful I could do that for him, because there was nothing else I could do.

He went through so much pain before he was even diagnosed. He didn't get the pain treatment he needed until he was admitted to the palliative care program three months before his death. For the last month, I was shown how to give him injections of powerful medications through a subcutaneous line, but as quickly as his dosages were increased his pain and breathlessness increased too. It felt like we were always chasing the symptoms and rarely catching up. For his last couple of weeks he required medications every sixty to ninety minutes, day and night. Fortunately, palliative care also provided some respite time for me to sleep. They also tried to assure me that I was doing as much for him at home as would have been done if he had gone into the palliative care unit in the hospital. But that didn't help his suffering or my desperation and guilt.

If you're not familiar with esophageal cancer, you may be wondering why it wasn't caught sooner. The problem is that it doesn't produce clear symptoms until it reaches an advanced stage.

Fatigue is an early symptom, but there are so many causes of fatigue. My husband had bloodwork done a year before his other symptoms started, because he had been feeling so tired. But nothing was found.

Indeed, even after his swallowing issues began, he was sent for more bloodwork and again nothing was found. Finally a CT scan was ordered, which took six weeks to happen, despite several followups and pleas by us. By then he could only tolerate liquids and had lost a lot of weight. He had a stent put in his esophagus to help him swallow, and started chemo, the mildest course available because he was so frail. Neither surgery nor radiation were options because of the advanced stage of the disease.

We were told by the chemo doctor that finding the cancer six weeks or six months or even six years earlier wouldn't have made a difference. I wonder about that that last part, and eventually I may ask my doctor if that's true or if the chemo doctor got carried away with his sixes. However, the fact that my husband was fatigued for so long prior to developing other symptoms leads me to believe that finding the cancer even two years earlier would probably not have changed the outcome. And I have spoken with folks who knew other people with the same kind of cancer. Even those whose cancer was found early enough that they could have surgery or radiation never went back to being healthy; instead, their treatment seemed to only prolong their discomfort and pain.

My husband was a long-time smoker, and we were told that's what caused his esophageal cancer. He had tried to quit a number of times, and succeeded a number of times. But he always went back to it as a way of dealing with stress. Some people would say, or at least think, that he deserved what happened. But I can tell you this: as much as I hated everything about the smoking, nobody deserves the kind of death he had.   

Smoking is just one of the risk factors for esophageal cancer. Obesity and long-term heartburn are the others. Smokers are often ostracized these days, but how many folks with obesity and heartburn do you know? Quite a few, I bet. You know one, at least - me. My heartburn is well-controlled but I've been taking strong medication for thirty years.And I tend to be a stress eater, which is no better than stress smoking.

The reason I have explained all of this is to try to encourage people to listen to their bodies and to be aware of the risk factors. My husband would have needed to really push his doctor to investigate his fatigue further when the initial blood tests came back negative, but that wasn't him. Many people are like him - unwilling to make a fuss or question the medical results. He was also a very stoic person. People, do not be stoic. If you feel something is wrong, keep pushing to find out what it could be. You know your body best; after all, you have lived in it your entire life.

This has been a long post. If you are still reading, thank you.

I hope to be back soon. Until then, take care of yourselves.

 

 

 

Monday, 11 January 2021

To Let You Know

My husband passed away just after midnight, January 7.

You have all been so supportive through his illness, and I wanted to let you know.

There is so much I could say, especially about the last six weeks, but the words seem to be stuck inside me.

Maybe later I will be able to get them out.

For now, please know I am okay ... sort of. I have already grieved so much in the last nine months.

I have plenty of support from family, friends and neighbours.

I can still hardly believe he is gone forever. 

He was a good and kind and smart and funny man. I miss him so.

 

 







 

 

Saturday, 12 December 2020

Health Update 4

Hello, my bloggy friends.

Holidays are a hard time of year to be sick, or to have a loved one be sick.

When I go to the stores to pick up medications or to get other things my husband needs, it is hard to see the Christmas lights and hear the music.

We have spent many happy Christmas seasons while other families we didn't know have been suffering. We didn't truly understand the black cloud that hovers over a family in pain. Now we are that family, and now I understand. 

I don't begrudge anybody else their happy season, especially in this difficult year of the plague.

I am just so sad, people.

It's not about missing Christmas.

It's that my husband has deteriorated so much in such a short time. I am afraid he is losing the fight. His chemo is shrinking some of the tumours, but he has developed other serious health issues.

I'm sorry to be so vague, but I want to respect my husband's privacy as much as possible.

*****

If you feel like sharing, would you let me know in the comments how each of you is doing? 

I really want to hear it, whether it's good or bad.

I could use some good stories, but I'm here to listen if you have the other kind, too.

And here is a picture for you.


 Take care, my friends.

 


Friday, 20 November 2020

2020

If you recall, I recently listed some links that brighten up my days.

Today I just have to re-link to bluebird of bitterness.

If anything describes 2020, it's her post today!

Wednesday, 4 November 2020

How To Stay Humble

Hello, friends.

It's the day after US voting day, with final results still to be determined, and I know that many people around the world are biting their nails in solidarity with our American friends.

So I thought a diversion - even a small one - might be welcome.

Last Saturday it was that time of the year - the time when we set our clocks back an hour so that we can finally catch up on the hour of sleep we lost last spring when we set them ahead.

Hold that thought for a minute.

It's been awhile since I've mentioned my mom, but you may remember that she is ninety years old now and having increasing problems with her memory. 

Hold that thought, too. 

My mom has resisted getting a flu shot for many years now. She always says she should get one, but when I offer to take her she backs out. But this year, with covid-19 on the go, she finally agreed to let me make an appointment for her and even agreed to let me drive her there.

Now we have three thoughts lined up. Here's how they connect.

On Monday, I called my mom a few hours prior to her appointment, to remind her of the scheduled time. I also asked if she had managed to get her clocks turned back on the weekend.

No, she said. Did the time change?

Yes, I said. Yes it did. What time is on your clock right now, Mom?

It's ... let's see ... um ... it's one o'clock ... she said.

Okay then, I said (reading our kitchen clock); your clocks are still on the old time, Mom. It's actually 12 noon right now. So I'll pick you up in an hour and a half for your appointment, and if you want help setting any of your clocks I can do that too.

After a few more repetitions of what time it was and when I'd be picking her up, we ended our call.

Her flu shot went very smoothly, and I took her home and set all her clocks by my watch. Feeling like I had done my good deed for the day, I said good-bye and drove off to do some errands.

... And realized, to my horror, that I hadn't actually changed my watch to the proper time. (I don't wear it around the house, and I hadn't gone out since the time change.)

I did my errands while I contemplated the nature of memory, and good intentions, and bad follow-through, and then I returned to my mom's house where I had to admit my stupidity and set all her clocks - which she had originally set to the proper time and I had "fixed" - to the correct time.

Talk about humble pie. I was stuffed with it. Whew. Couldn't manage another bite. Because it's not all that tasty.

The only good thing is that she won't remember it by the next time I talk to her.

But I will.

Sigh.

We now return you to your regular programming. Good luck with those election results, America.

In case you're still not ready for that, here are some animals in sweaters. Enjoy.

 


 

 
 

 


 


 


 


 



 Have a good day, people :)

Saturday, 17 October 2020

Health Update 3, and Other Things

Hello, people.

I wanted to let you know we're still okay, here in the house of the Procrastinating Donkey.

Although there has been a lot of trial and error with my husband's medication in the time since I last posted, his pain and other symptoms are now better managed, and he is also taking a steroid that increases his energy and appetite.

He has completed his first chemo cycle with no significant side effects, which is good, and has begun the second cycle. We are also concentrating on feeding him as many calories as he can take in. He has lost so much weight, and we want to turn that around if possible.

We won't know until mid-December if the chemo is working or not. Until then we are grateful for every day that he is feeling more comfortable. 

Thank you all again for your positive thoughts, good wishes, kind comments and very appreciated emails. I have thought of you all many times but haven't had much time to read or write. The days just seem to slip away like water through my fingers.

*****

The "other things" in today's post title are some of the websites and blogs where I find respite from the heaviness of life. You might enjoy them too. Some of them will deliver their goodness to you on a regular basis if you sign up for email notifications.

For the links that go to Twitter accounts, don't worry if you do not have a Twitter account yourself. You can view these Twitter feeds whether you have an account or not.

Enjoy.

bluebird of bitterness

We Rate Dogs

Thoughts of Dog 

Mutts

Whoa City (formerly Whoa Interesting)

deAdder Canada (Canadian political cartoons by Michael deAdder)

deAdder (international political cartoons by Michael deAdder)

Akki

Savage Chickens 

 

 *****

And some funnies.

 

 


 


 


 

 


 

 


So tiny :)


  Take care, friends, and I hope to return soon.


Thursday, 10 September 2020

Health Update 2 - Some Good News

I'm happy to be able to report some good news about my husband's health.

First, he is home from the hospital after having his esophageal stent put in place, and it is working as it should. He is still in the process of switching over from liquids to soft foods, and will have to stay on soft foods as long as he has the stent. But it allows him a wider variety of nutrition and has reduced his nausea.

Second, and probably even more important on the good news front, is that he had a bone scan while in hospital for the stent, and it has showed no cancer in his back or any of his bones. That is a great relief. His fairly severe back pain is being addressed with proper pain medication, and, while his doctor must now begin the process of finding out what's causing the pain, he is comfortable for now.

It is amazing how much energy and brainpower it takes to deal with constant pain and/or nausea. My husband was sleeping or resting almost all the time over the last several months. Now he is able to be awake almost the whole day, and the times he does nod off are more because he is losing sleep when he wakes up to take pain medication a couple of times a night, and then sit upright for awhile to avoid reflux in his throat.

I only wish -- and wish it fervently -- that everyone who has chronic pain could find relief from it, because it so negatively affects quality of life.

For now, we are trying to get rested up for the next steps in my husband's treatment. And we're trying to make our days as normal as possible. Because if we let the days slip away in unhappiness and worry, we'll lose out on the good that's actually remaining to us.

Thank you, my wonderful friends, for your continued good wishes and listening ears. 

I hope to be able to write about some other topics in the near future. It feels like I'll be able to do that again soon.

Some kitten pictures would not go amiss, would they? Enjoy.