Tag Archives: cancer

I had a plan**

I had a plan. **

You know, best laid and all that.

Life got in the way and all that.

I want to say something but I do not want it to sound whiny or pouty or feeling sorry for myself and all that.

I think it may be unresolved anger. Or maybe it is very well resolved anger. How do you know if it is unresolved? Maybe by the number of **** used in words like da*n or is it d*mn. Nuts I can’t even curse properly in print.

In six days I have an appointment to see my oncologist. The plan was to tell him that even though I still have two years of drug therapy left I simply must stop taking the pills.

I am certainly much better off than many people I know but I am angry at ‘the attitude’. So you had cancer, radiation and medication and the follow up tests say it is all gone. Mine would be a success story. Except.

The complications and side effects at this moment are just too much.

Most are just annoying, but I have discovered that annoyances that are constant are debilitating and depressing.

I have a number of friends that went through, and are continuing to go through the same diagnosis, treatment and consequences, all within a short time of myself. For some the stage of cancer was worse and some not as bad, but basically we survived the surgery, radiation, chemotherapy and had positive results. So it looks like we survived.

But no one said the cure was worse than the disease. Well I guess it really isn’t but it sure feels that way. Would I have agreed to treatment if I had known what it meant?

October 7, 2013 surgery for breast cancer.

December 2013 to January 2014 radiation. Fair skinned – and I burned like a toasted marshmallow in spite of ointments and creams, and the radiation broke down one of the incision sites. That was fun.

Then a start on Arimidex, a drug to prevent the production of estrogen (since my tumors were estrogen producing) – to be taken for 5 years.

Now my doctor would say, ‘I explained all the possible side effects to you before I ordered the drug.’

Yes, yes you did.

But when you are sitting there in a state of shock over your diagnosis everything else that is said is just back noise. Your mind just can’t grasp it. And really, until you actually experience it you can’t possibly know, or guess, or imagine. It is all just a bunch of words.

I was pretty good until April 2016. Hot flashes that had been gone post-menopausal for ten years came back with a vengeance. But I am woman. Hah! This is no more than a very uncomfortable annoyance. Not to mention embarrassing when speaking with someone in public and the hair at the back of my head drips water down my back.

I had three friends that went through all this a few years back and had NO side effects so I did not expect any either.

I am really angry about my cholesterol which has always been remarkably good. BUT stop estrogen production and that bad cholesterol goes sky high. ‘I will change my diet and exercise rather than take drugs.’

‘Chris it won’t change anything. Right now you have a one in three chance of having a stroke.’ So now I have a lifetime commitment to a Statin.

One friend who went through surgery and treatment four months before me started experiencing a lot of joint pain, and she would ask if I had any. Me? Not I.

But four months makes a difference. By April 2016 when the doc asked if I had any joint pain I said, No. at least no more than usual except my right wrist was painful, but I put that down to excessive Knitting or typing.

By August 2016 hand and joint pain was what I would call excessive with limited use of my hands. Pain in my hands and arms would wake me at night. I would wake up crying.

I got splints and called my oncologist who said to immediately stop the Arimidex and start taking Tamoxifen. But before he ordered it he said he wanted me to fully understand possible side effects and decide if I would continue. All I wanted was for the pain to stop. So I agreed.

Truthfully the pain remains in my hands but is less that before. I can knit and type without crying.

Then the other joints decided to join the party. But at least they are polite and let one flare-up finish before another starts. Most recently my right knee flared which lasted days, and I literally moaned and groaned with every step. Finally last Monday was a Normal Pain Day! Yea! But in the early morning hours on Tuesday I was awakened with fierce left hip pain. Now today, two days later it is just normal pain.

Some days I limp along, and some I can just go about my business, and some I have to go to bed for a couple of hours in the afternoon until the worst of whatever flare up passes. And it does pass. But I am angry. This ‘successful’ treatment is interfering with my quality of life. At my age anytime spent in bed or immobile due to pain is a major interference. I don’t want to spend a single second not ‘living.

I can handle pain. I can’t remember what it was like to have no pain. But these flare ups are above and beyond. I won’t take heavy drugs because that just fogs and messes up your mind. I know, I know, you say, the ‘quitcherbitchin’

It all comes down to quality of life.

Oh and more news. A friend who went through the same thing at about the same time has just been told she has lung cancer related to her radiation therapy. Oh I remember being told at the time, ‘Now radiation kills good cells as well as bad so there is a chance you could develop lung cancer.’

You hear the words, but they are only words.

So here it is a few days from my appointment. I decide to check with the Cancer Society and Support Groups. I want to know how reasonable my request to come off Tamoxifen 2 years early is. (One dear friend has been told she must be on it for TEN years, not five, and she is experiencing everything I am.

Anyway, apparently coming off the pill increases my chances of the cancer returning. The dreaded hot flashes in fact may not go away but may actually get worse. The joint pain in some cases gets worse with withdrawal. Oh and some report abdominal bloating. Sigh…..

D*mned if you do, D*mned if you don’t.

If I knew then what I know now would I…..?

I will say if you now anyone who makes a decision not to receive treatment, please just give support and love. There are consequences to every decision.

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Friday Toppers 12/366

Above is a photo of my last two hats and one pair of mittens.  I made them for my grandsons, both of whom love them. (I wasn’t sure but yes they loved them.)

Before I start my next project I thought I would use the rest of my blue yarn and make a few more hats.  Generally I do these kind of things in the summer to have them ready to donate to charity in the fall.  For some reason I feel the need to make more so will continue on.  Following my feelings always pays off.

I saw Auntie this morning and we talked about what it was like sailing across the ocean on a liner.  I am not much for boats so am in awe of those folk who traverse the water to reach a destination.    Her mind comes and goes, wandering off now and then, so conversation is patient and interesting.  She did talk about the joys of having a wonderful partner for over thirty years but the pain of the big goodbye.

It is hard to believe it is finally the middle of the month.  The first week seemed to drag on endlessly until the second week found it’s roller skates and sped up.

I finished a few books; Clive Cussler’s Ghost Ship, Sue Grafton’s Undertow ( a reread), an Agatha Christie Hercule Poirot short story.  Books and stories are my comfort blanket.  Lost a dear friend of the family this past week, my age, so have a funeral to attend Monday morning.

It is important I think to find joy and humor is each day.  It is there.

OH almost forgot! Judith at growingyoungereachday and Donna at Scatter Kindness and I are starting a fiction writing course on Monday.  The course is from Future Learn at https://www.futurelearn.com/courses/start-writing-fiction/

The course is  FREE! Check it out and hopefully join us!

Have a good weekend all!

WAAAAAAA WAAAAAAA 9/366

I need just a moment to shout out a primal scream.*MEN OR LADIES IN DANGER  of BEING BORED OR GROSSED OUT CAN SKIP THIS ONE.

so being a conscientious sort I have been checking out proper diets. Then I decide to search for answers in what can cause sudden cholesterol elevations in a relatively healthy female who had cancer, surgery, radiation a year before and who has been taking a daily dose ofcArimidex.

WELL it seems the Arimidex I am supposed TO TAKE  for the next 5 Years can cause high cholesterol.

Now it makes sense why she said dietary changes would Not Help.

I did not sign up for this.   I agreed to highly recommended surgery, radiation and medications for 5 years. Now it seems the effect of the cure could in fact kill me. Or force me to take statins. GRRRRRR

I see my doc in 6 weeks.

do I decline anymore cancer meds. I guess I will have to check and see what the rate of cancer reoccurrence if get off them. Then will my cholesterol automatically return to normal or is the damage permanent?

Were  I given to profanity we all might have learned some new words. ADVICE PLEASE!

Five Days and It Feels Like a Year 5/366

I just thinking the other day – I wonder how long it will continue to feel like a new year.  You know, when your first morning thought is not, -Wow it’s a new year.  There is a certain deliciousness in the feeling.  Sort of how you feel when you get a brand new car.  A sense of awe.

But life intrudes, you know, with life things.  What is that saying? “Life gets in the way.”  Yeah I think that is it.

Conditions change, people get sick and get well. Some things you expect as you age.  As your friends age.  And sometimes the threat is to  younger people.

I was just saying not too long ago to a dear friend, Judith, that someone should write a book about cancer.  About something that never seems to be addressed.  I mean people discuss, write, argue about ‘fighting’, about “surviving’.  But there is one word that describes cancer perfectly.  Waiting.  Eternally waiting.  That’s what it all becomes about. The Sword of Damocles.  Hanging there.  Always.  Just try and live a normal life while you wait.  Hah.

No, it’s not me.  The Big C and I did our dance over a year ago and so far so good.  But it is someone.  And the thing is that for the next forever there is THE WAIT.

Wait – something may be wrong

Wait – we have to do some more tests

Wait – we have to do some MORE tests just to be sure

Wait – you have cancer

Wait- we have to do this bit of surgery to see how bad it could be.

Wait – we have to do more surgery

Wait – we have to do more tests

Wait- we have to do this treatment, that treatment

Wait – we have to do more tests

WAIT WAIT WAIT

Your life and everyone who loves you waits.  No promises.  No conclusions.  Just wait. Suspended Animation.

LIMBO.  Rod Serling’s Twilight Zone.  Imagine if you will.  That’s how he started each of his shows.  Imagine if you will…..

Or don’t imagine.  Just try not imagining. HAH

Well enough of my grumping for now.  I saw our Auntie Fran this morning as I do most days.  She was telling me that she was seventeen when she went into Nurses Training.  So that would have been 1951.  She said training lasted for four years and most of it was working on the units.  It was pretty much the same when I trained in 1966 and I still think it is a superior way to learn.  But for her it was six days a week, twelve hours a day when on the units.

To appreciate our love story you have to understand the two people involved.  I already told you Uncle Jack was a charmer.  Aunt Fran was the exact opposite.  Down to earth.  Her early years were spent during the second world war.  Her father gone into service, rationing and hardship for everyone not just for her.   Her father returned I think about 1945.  She was eleven when the war ended.  Hardly a year later when she was twelve her mother died.

Her parents and probably their parents were Salvation Army so they grew up with a solid foundation of faith.  Frances Alice never thought of herself as a dreamer.  There was too much harsh reality.

She told me a story that when she was about six she and her mother were walking along in town, and her mother was holding her hand.  The town was most upset because a young child had been abducted from the town, and I do not know if she was ever found.

Anyway Fran told me her mother said, “You should be happy you are not pretty. Because that means no one will ever steal you.”

Isn’t funny the things we remember from our childhood?  Fran told me this story because I had told her a few years ago that when I first met her I thought she was so beautiful.  She offered this information so that I would know she was not beautiful.  She was not even pretty.  I am sure her mother loved her and I think that she could not have known those words would stay with her young daughter forever.

You might think there would be a danger that if a smooth talking gent happened along and called her beautiful that she would succumb to his charms.  But don’t forget our lady was made of strong moral fiber.

More tomorrow my friends.

 

Oh by the way , the stamp about was issued by the Australian government in honour of nurses in 1955 the year Frannie graduated.

 

Observations from Both Sides

I refuse to join any club that would have me as a member. – Groucho Marx

Types of clubs vary in design, purpose, function, and level of formality.  The earliest ones are informal and naturally occur when two or more children engage in routine play.  I suppose some psych type person out there will say the earliest club is the one formed between a mother and or father and a newborn.

Some clubs of youth include Boy Scouts, Girl Guides and various other themes and are ‘joined’ by the participating person.  In school there are clubs to join or not depending on your wish or desire.

There are other clubs no one wants to join but we find membership when circumstances outside our control force us into them.  Stepping into membership is a foreign experience and it takes a bit of time and consideration to figure it out.  It isn’t just an alien environment.  In many ways it is like an alternate universe (not the least like that proposed in theory by science, but similar enough to warrant the title, Alternate.

A normal life as you have come to know it exists as it always has, but now you are included in another normal, another life, and the awareness of its existence moves you to the core until you are able to define the duality of your personal existence.

I remember a line from a very old western I watched as a child.  I hated most westerns in those days except for Annie Oakley but when you have two brothers and one television either westerns or hockey night in Canada won out.  As I remember it a family is travelling across some dusty plain in a covered wagon when another wagon approaches.  Two hardened frontier women are introduced to a newcomer who is quite lovely and one woman bitterly remarks to the other something about, ‘Her skin may be all soft now but just give her a little time in the elements and she won’t be so lovely.’

The line took me by surprise first because of the sincerity of the bitterness and secondly the understanding that yes the elements and hardships would naturally have turned women into something other than they started out when settling in the new world.

Now you may exactly how do clubs and western settlers come together?

On one of my first of many visits to my neighborhood cancer center I was fresh faced, well as fresh as you can be at sixty-seven, feeling pretty good and healthy in spite of diagnosis, surgery and dealing with some unpleasant physical changes.  See that is the thing; many of us when we are first faced with The News still feel pretty good.  So when we begin our long line of appointments with surgeons, medical oncologists, radiation oncologists and all that accompany them we still have a spring in our step, an optimism I guess you would say.

My first appointment in Clinic G, as I was given instruction and information I found myself replying, ‘Thanks so much.’ In a pretty cheerful voice, and the first time it happened a number of heads rose up and seemed startled at what I had just said, and the feeling of surprise at the reaction immediately brought to mind that very line from the movie.

‘Her skin may be all soft now but just give her a little time in the elements and she won’t be so lovely.’

The point I am trying to make has nothing to do with skin really but more about being on the inside and knowing what is about to happen.

I was sitting in that very same waiting room a few weeks later head down like everyone else, not quite so peppy when I heard a young woman, probably thirty, speak out in a clear cheerful voice, ‘Great, thanks so much.’  And our heads flew up in surprise and in a flash of time our heads went back down and I thought. ‘a little time in the elements.’

Stepping through the doors to ‘my hospital’ on a daily basis for radiation I see how quiet the environment is.  Not depressed or even sad but quiet and I think filled with expectation and hope.  I say expectation because that is what the whole club runs on.  Not necessarily good or bad expectation but an understanding that there will be change.

It’s not a club I want to belong to.  In the beginning I thought I could ride it out because I felt good in spite of all.  Now weeks into radiation that has left my breast with burns on top of scars, and nearly constant discomfort I still wouldn’t give up my membership because in a way, despite a ten inch square radiation burn, fatigue at times, all of which I am pretty sure will pass, I have met the bravest of the brave, patient and family, enduring, surviving one way or another for as long as possible and still able when we meet daily in our allotted alcove to laugh about some silly thing we came across.  We see the wife, exhausted by her husband’s care, the husband or friend boosting and lifting his dear one.  We hear the good news and cheer; we hear the bad news and comfort.  There is an underlying support of love in our club.

Our membership is worldwide and every individual is different.  Even the same cancers are different in each individual.

I hate my club.  I love my club.  I give thanks that this is my club for what I am learning, have learned far outweighs the nicety of being that young girl with the fresh skin, so cute and so untested by the elements.