Happy? Holidays

"Psychology says - tears can represent sadness and pain, it also says tears can often be a sign of joy, while a smile can simply represent pain kept hidden." Unknown

Holidays are tricky. They come with a lot of landmines, well, at least for me they do.

I do enjoy them, I love to try and surprise my kids with something they never thought they would get. Sophie still believes in Santa, which is so sweet. We spent endless amounts of time discussing how he would get into our new place, because we don't have a chimney. Or, what about the houses that left the fire on? Santa could get burned! We ended up deciding that Santa has been doing this for a lot of years, like a lot of years, since he was around when I was a kid ;)....he knows best.

A very large landmine for me, one that I could not avoid was that I did not have Sophie with me on Christmas Day. We all missed Sophie on that day. She has such a wonderful, busy spirit that just makes you laugh and smile. I missed her terribly.

Everyone I am sure have people they miss at Christmas. Family who don't come home, loved ones staying with their own families, it wasn't just me missing someone.

There is another category to missing someone tho....and that's missing someone who is no longer here. That special loved one who passed. Whether it's the first Christmas or the 8th Christmas, trust me, you miss them all the same. It's no secret I am talking about my dad.

This year he was celebrated by all of us, thanks to our mom. We each received a copy of the book he was working on before he passed away. It's called "Growing Pains" and it's about the "Development of Children's Mental Health Services in Saskatchewan". 

 After my dad passed away, my mom and a few of my dad's friends all helped to finish the book, then my mom got it published. Soon it will be available on Amazon. My oldest daughter designed the cover, its exactly as my dad would have wanted it.

I only smiled thru Christmas this year...because, damn...I knew, under that Christmas tree that there wouldn't be a gift that would relieve the ache and worry in my heart, and the pain in my pelvis...

xox


Big thanks go to...

Lisa P for the "going for the gold purse"
Cards from friends all over
Best Wishes from all of you....

Thank you!

Week 5...

I was pretty silent this week. I needed to get thru it and I needed to...hmmm 'focus' is the wrong word, more, I needed to not freak out that something would happen.

It seemed every week, I had a wrench thrown, not in my plans but at my head.  

I like my head, and I like my hair and I stubbornly did not want to wear a helmet this week. 

Sooo....that's my story and I am sticking to it!

I thought I would wrap up these last 5 weeks with things I learnt along the way. I truly am a different person, I had to dig deep to find strength and I surprised myself.

Here goes.....

* be your own patient advocate, listen to yourself, talk to your Dr and be persistent. When you wait in the Dr's office, because we've all waited....its other patients, being their own advocate

* don't be afraid to talk about health issues, be aware of what could harm you

* cancer is a scary disease, it's not a death sentence, trust the Dr's who are there to help....in my case, they have all been above and beyond fantastic

* if you don't like someone elses bad habit, remind with love why it bothers you, not guilt....guilt tripping should be illegal

* never miss an opportunity to say Thank you

* never miss an opportunity to say I love you

* forgive others, more importantly forgive yourself

* toxic friends don't need to be in your life, they take up to much space, in your head and more in your heart....are they worth it?

* Secrets...this is a big one for me...I am adopted and have the best mom and dad in the world. My birthmother married my birthfather and had two more children, these children, and my birthfather want nothing to do with me. I've been heavily encouraged to keep this a secret, not by my family, no ....know what? their loss...completely

* grab a sense of humour

* smile more

* hug often

* I'm going to be here next Christmas

Thank you, all of you, who read my blog, left a comment or sent me a note. Each one I read 100 times, each one I was thankful for.

I started this feeling very alone, but quickly felt everyones presence. I did not feel alone afterwards, it wasn't just me anymore, and I am grateful.

From the bottom of my heart, please accept my heartfelt thanks.

Enjoy the holidays, we are back on treatments to pummel more panda, the beginning of January!

xox

 

 

 

My letter to hospice....

Remember the other day?  I told you I wrote a letter to Hospice after my father passed away.  I said I would share it.

I grew immensly after I wrote this, as a person learning to grieve, as a writer, but also as a person who had found her strength.  Although it still took a long while for me to grow, I am incredibly proud of this letter, it has taken a long time to be able to say this.

This letter was published (with some edits of course) in our paper, along with a picture of me holding a flower from his garden.  It was the Hospice's Fundraisor for that year, and they did well.  Most people remarking on a story about 'real people'.

I hope you like my letter.



January 15, 2008

Sarah Thomson
Victoria, BC V9A 3B2

Victoria Hospice and Palliative Care Foundation
1510 Fort Street
Victoria, BC V8S 5J2


Dear friends at hospice:

Please accept my donation in memory of my father, Dr. Terry Russell; he passed away on February 17, 2007 in hospice.

My father was a kind and gentle man; he is survived by his loving wife, 3 children and 5 grandchildren, he was diagnosed with prostate cancer in September of 2004.  His battle was ruthless, painful and heartbreaking.  He was given a short time of reprieve, but not long enough.

My father had surgery in December 2006, he was supposed to be well afterwards, but he wasn’t and it looked like the cancer had won.  He went home early in January, where we thought that we could re-group and perhaps find someway to cure him.  What probably was obvious to others wasn’t to us, we couldn’t lose him this way, and we still wanted him to get better.

When my parents told us that they were going to register with hospice, I resented the idea.  I thought that meant that we were giving up on the fight to save my father.  My thoughts were that hospice was a place where people go to die and at the time, that was an un-bearable contemplation.  I had heard of others that had wonderful things to say about hospice, that it was a caring environment, that there was support there.  I quite honestly couldn’t picture that, how could that be a good place to go?  I pictured in my mind a loud and invasive place.  I thought people would be lined up in the halls screaming and crying, isn’t this what people do when they are faced with losing someone they love and can’t control it?

What I know now is that my father knew he was not going to beat this disease and I like to think that he knew that we, his family, would be taken care of.  My father was supported by the hospice care teams while at home, and then again when he opted to go to hospice five days before he died.

Throughout this past year I have been in debt to your volunteers and your caring counsellors.  I was fortunate enough to have Jacqueline as my counsellor in the early times after my father’s death.  She was a saving grace for me, and the time that was offered to me and subsequently to my siblings and my mother, was, and still is invaluable.

I now can say that my father’s death was peaceful, we were able to be with him in a kind and caring environment. We were given opportunity to say our goodbyes, sit quietly in one of the private rooms on the floor to gather ourselves, or just sit and be with him.

I will give back more to hospice one day, I can’t imagine myself not being a part of such a kind and wonderful place. What I have learned from your volunteers, staff and my father is that hospice is a peaceful place, where real things happen to real people, and whatever happens we are honoured as individuals who will grieve in many different ways, and that grief is a not a terrible thing, it just needs some time and understanding.

Please accept my most sincere gratitude on making what was such a difficult time, become a peaceful one.


Yours sincerely,

Week 4...

Well I made it no secret that week 4 sucked the big one.

Chemo was off the charts pukey this week, and that seemed to set the tone for the week.  I could not catch up to it, to get ahead of it.  That's the trick, get ahead and stay ahead of becoming nauseous.  Just this weekend, I finally was able to sleep well enough where I wasn't being woken up by nausea.

I have about 5 different anti-nausea pills because of the type of chemo they have me on.  They all have a job to do, but the one that works has a side effect that is or can be disturbing.  It makes me tremble, so any part of me, my hands or head or whole body for that matter can be trembling and I won't notice it.  By disturbing I mean, if I don't warn others, they may not know why and can be afraid to ask.  It is normal, and will go away...it's just another side affect.

Thank you to everyone who got where I was going with "for real".  Please, for me and for you...make that phone call.

I also complained about "things' happening.  It's all about life goes on.  I am going to have things happen to me, my kids, good things, great things all the time.  Bring it.  I can and will do this, there has been a lot of poor timing around these parts for a while, whatever, maybe I need to wear a watch.

I have ONE more chemo session, and FIVE more radiation sessions, and then I am done until the New Year. 

Yeaaaaaa Buddddy!

I just need to get thru tomorrow and then the rest of the week should be ok.

Thanks go to...

Wendy for driving and being the best company I could ask for, thank you
Mom, for your care, patience, driving and help here, thank you...oh and patience :)
Lee, chilling me out, cuz you can and do...always
Lisa P, for the daily chuckles
Tegan, for lunch and great visit
Geeta, for the great visit
Facebook, for allowing friends from afar to be able to reach out and touch me, share my story and share their words

(if I forget anyone...I will remember, I promise!!)

How do I look today?

....finally, some good news.

My "nodes" are much smaller.  This makes my Radiation Oncologist happy, so it makes us all happy!

For real....

I believe I have said this before, I have taken the diagnosis of having "the panda"way better than the diagnosis of the chronic illness that is rheumatoid arthritis and its' ridiculous effects its has had on my life so far.

Let me explain....

I was most likely sick with RA long before I knew I had it.  I wasn't in touch with my health, I was stressed, it was most likely around the time my father fell ill, which was also around the time we were blessed with the surprise of a lifetime, me being pregnant after 10 years of being pretty sure we were done with babies.  Jesse and Hayley were almost 10, they were starting to stay at friends houses on the weekends for sleepovers, we were almost starting to have some cash.  Paying $1000/a month for twins in daycare was a tough haul.  Regardless, we welcomed Sophie Grace after an even more difficult pregnancy with a singleton, then with twins.

I know I was depressed to some degree, but it did get worse.  As my father got sicker the tougher things got.  Things used to be easy for me, then, the smallest things either set me off into moods that no one could stand or I was so overwhelmed at how hard the task at hand was. I cancelled everything, I withdrew. The loss of my father devastated me, naturally.  I was so lost.  No one knew what to do with me, and I know I had people walking on eggshells around me for a long time.  I couldn't snap out of it.  Word on the street was that I couldn't handle the grief, that I had "lost it".

Looking back, I did do ok.  I donated some money to Hospice, where my father had passed away.  I sent a letter along with it.  I received an email back from the foundation thanking me for my donation, but they were also wondering if they could use my letter, or parts of it as part of their fundraising campaign for that year.  I was shocked, and nervous, overwhelmed, and proud cuz it was for for my dad.  So I said sure.  A week later, I got a phone call, would I consider a photo shoot?  The letter was "real", they wanted to show the "real" person behind it.  I balked at that.  I'm way too hard on myself, I had to be majorly talked into that.  At the end of the day, I couldn't not do it, it was for my dad.  We did do the photo shoot, no I won't share the picture or letter today, but I will.  I have a point I have to make before I start to lose some of you to sleep or boredom :)

So much of my struggles around that time, were people, including myself writing me off due to grief.  Part of that is true, but I believe now that I was in the beginnings of RA, possibly in the middle and already due to my pain, I was numb to whatever else was going on.  I've said this before, with RA and Fibro, you never know what the hell is going to hurt....with the panda, I know where it is, I know what it is doing to me and I know what I want to do to it.

Here is my reality.....sit down...maybe grab a drink..

* I have Cancer, Rheumatoid Arthritis, Fibromyalgia and Eurythromyalgia

* As much as I try and stay positive, I have my down times.  I've cried more often in the last two months, then I have in the last 5 years

* I have had close friends choose to no longer be in my life because of their disbelief in my first diagnosis.

* My children are very easily angered with me, they do not want me to be sick which is understandable.  They more then often do not want to help with chores that I used to do, they would rather see me do them, which would mean I would not be sick.  There is a lot of tears and angry words shared because of this, and it's heartbreaking.  This is not an easy reality to divulge. For them or for me.

* I still have people in my life who are cruel.  I don't understand the cruelty.  The good thing is that I am finding it easier to not care as much, at first, Ive never been so crushed.

* Life is moving very quickly, it doesn't stop.  Those cheesey sayings....they are true.

* The way people love you, can change...whether you have cancer or not.  This hurts and brings a tear to my eye every time I think about it.

* Just because I would never do something to someone else, doesn't mean they won't do it to me....

* Life can be cruel, all of the above are happenings, moments, some feel longer then others, some feel like eternity.....but, the one thing that helps me stay positive is that I am finally starting to learn from these moments, and I can make things better.

* Will I be here next Christmas?


Here's what I need you to do.....for you, not me....but if you do it for me, you will make me proud.

My friends, mothers, young women, women.

Now, men, the ones who love these women, please encourage this with love, not guilt.

Before the end of December encourage everyone you know to make that dreaded phone call, get the stupid pap test over with.  Yes, its 5 minutes....but let me tell you what is worse...

* I have been "bleeding" since April
* I now have a machine that is literally burning the insides of my uterus
* I am nauseous everyday, my nausea power hour is between 11:00 pm - 4:30 am
* The panda cells have wrapped themselves around my "pee tube", I get up at night to go to the washroom between 6-10 times a night, that is on top of the nausea where I don't want to move
* When I lay in the radiation room, I am alone, nude from the waist down.  People can see me from camera's outside the room, they watch me so I don't move
* I am not even done my treatment plan of 5 weeks of radiation and they are already planning more treatment, this is just the beginning
* In the new year, I will have someone put radiation directly into the panda tumour, this is a 5 -6 hour procedure
* The nurses, to the radiation therapists ask you very private questions, and you find yourself talking about what used to be private, it never will be for me again.
* Start getting used to not being private about it, talk about making the appointment, it will nudge someone else to do it....and so on.
* Pick up the phone and make the appointment.
* Its cuz I love you.

I would be a fraud if there wasn't some fun in this post...

Christmas means to me "Love, Actually" season.  It means I can get away with loving Hugh Grant dancing to the Pointer Sisters, thinking its hilarious there is a lobster in a Christmas play and saying "just in cases" and having people not know what I am talking about.....love that one.

xo

Week 3...

It didn't start off with the bang that I had hoped for.  There was no bang.....just blah

My friend Wendy drove me to my appointment on Monday, it's chemo day so I will want to always have a ride on that day,  just in case.

I was very tired, croaky voice, and in a"lets just get this over with kid of mood".  Not that I could move fast to hurry up for anything, but you get the gist.  Since last weeks chemo cocktail went without a hitch, I was expecting the same.

But no....never a dull moment.  Every Friday I meet with a nurse for a download.  We go over how I am feeling, does anything hurt more so than usual, how are my feelings, do I want a Big Mac? (jk)....stuff like that.  I must have been playing with my earring or ear, my left ear bugs me sometimes.  I think at times I do have some hearing issues in it, nothing serious, but I do especially get hearing full on loss when the kids are fighting...I mean, doesn't that happen to everyone?

Anyways, the nurse made a note of it, and apparently the type of chemo cocktail they are giving me does actually have the ability to do some nerve damage and make you deaf.  Oh boy.  It was finally figured out that just one dose wouldn't have done it, we decided my ear was itchy (well...it was), and I will take the chemo cocktail today and go for a hearing test on Thursday.  Done, now lets do this!

All of a sudden everyone was looking at me, "umm hi?"...."Sarah are you swaying"?  "Sarah are you ok?"  Sarah can you lay down for a minute?"

I had forgotten how tired I was, it was exhausting just standing there.  Everyone talking, the lights, the questions....I think I almost passed out.  Good thing I was in a hospital!  ..ya...they didn't find that funny either.

So before I could sleep, I had to let them put in my iv to start the drip.  I wanted someone to assure me that I wasn't going to pee my pants.

I woke up two hours later, wow I gotta visit that place more often..(not).  I was done..but I had to go pee first,

Then I was sent down to Radiation.  All the ladies have gotten to know me, I really like them all.  "So I hear you slept thru chemo, good for you"..."Hey...I'm not done yet", I was still tired I was going to try for a few more zzzzz's.  Much harder to do since you are basically balancing on the monkey bars in there.

Ten minutes later...."I can't believe you slept in there you brat!".  I kind of felt like patting myself on my back, however, one of the technicians noticed I had been crying.  I was fine, just so taken aback by how tired I was.

The rest of the week was good.  I am sure the whole world found out that our little town of Victoria got some snow, we had our sunshine too.

This weekend,  I was to catch up on sleep and concentrate on eating things with protein in them.  Ive gotten some good recipes from on the web, but always looking for more.


Thank yous


Kaelee who made me some beautiful handmade earrings which I love
Jan P for the beautiful cards
Barb Rosa for the beautiful cards
Liz for taking Sophie to the Santa Parade and for an afterschool playdate
For the one who used to keep me safe and strong
Wendy and Mom for meals and rides




Word for the week is: Fatigue
 It feels as though you are walking thru cheese......


xox s

 

....a day in the life

wake up - did I even sleep? feels like no...

secretly wish today is the day that someone surprises me at the door....i won't be alone any longer

take my morning meds...new meds for chemo and nausea, old meds for RA and Fibro, and others....then have to put something in my stomach...very.last.thing.i.want.to.do.

i found dark cherry greek yoghurt helps

check my alarm, it must be wrong..shit, it's not.  I check my appts, 3 on the books today...do I shower?  no time, hair up and go...

racing to get dressed....do a kid count 1..2..3...they are all where they should be.  I love them.  Call my mom, put her on speaker phone..hi mom, yes I am fine, no I am not actually, I didn't sleep well, yes I feel pukey....hope you have a good day, I love you...

i am stubborn, i am driving myself today. i want to do as much as i can.  i worry about gas $.

i used to live less then a 10 minute drive from the cancer clinic, now depending on traffic it is anywhere between 25 and a 45 minute drive....who knew?  certainly not i.

got to my appointments today...first with my nutritionist. i continue to lose weight.  to me this is a good thing, to them, it is not.  I need to keep my protein levels up, so that they will continue to let me have my chemo.  I need the chemo to help the radiation break down the panda....

i was so tired....i cried when I was in the radiation room...they clerks are trained to notice everything, they had to ask...i am ok, tired.  Yes they said..."this will be  difficult, this will be hard, this will be over soon"...

i cried all the way home.....

soon...i take all my night time meds, and hope for sleep

then it starts all over, the worry, the guessing, but I am full of love...i couldn't ask for better