Wednesday, January 16, 2019

Thank you for the music... all good things come to an end...


Happy to be home!
For those of you who have been diligent and followed my journey and stories and long winded essays, you will know I have revived this blog several times over the past 9 years as life has offered new challenges or circumstances that I thought may be of interest to others. I want to thank those who have afforded me the opportunity of sharing pieces of my life that I hoped would be of interest or knowledge or experiences that I believed others may benefit from hearing or also be going through. Based on my past few blogs, and the readership, I think the time for this has once again come to an end, a time to take a break and leave you be....

The past year and a half has been a time that we could have lived without, but since it was a big part of our life journey, I am so grateful to so many for their support. Knowing that I could vent, or grieve or ask for help - verbally and written - has truly allowed me to get through so of the hardest parts.

We were in Saint John, NB at the Cancer Clinic again this week to see the oncologists and get Trip all checked out. It is a journey and it is never smooth - I always allow 4-5 hours to make the 3 hour drive since my road is crooked - literally AND figuratively - and SOMETHING always happens to delay us. This week was no different... All of the delays and stresses really wear on my handsome and he is never in great shape by the time we arrive to our final destination. 

As we FINALLY arrived and got settled into the packed waiting room at the cancer clinic and tried to find a place to sit and wait, a gentleman I had never seen spoke to me. He had watched me lead Trip in, find him a space to sit, (it was -30C out when we started our day and by the time we arrived it had "warmed up" to -8C) the waiting room has large windows and lots of sun and it was beating down in the crowded room. I found a spot, out of the sun, settled him in, grabbed our medicine bag, scarves, hats, gloves and heavy coats and I found a spot to sit. 

Waiting...at the hospital
The man next to me, older than me, younger than Trip - was sitting next to his wife - he turned to me and with warmth in his eyes he said "You take really good care of him don't you?" I was a bit surprised that he had noticed us, but I turned to him and said "Yes, I certainly try to, although some days are harder than others." He smiled and said, "Are you tired?" I responded, "Ya, I think I am..." and I sighed, then I said, "But, I guess if  I am tired, after about a year and a half of this, I can only imagine how tired he must be." He just smiled and he made me feel like I was doing a good job. This short but kind interaction was what I needed.

The past two hours had been hard, stressful and Trip was in pain and irritable. We hadn't spoken - not from anger but I knew he wasn't up to it. I didn't play music or make any extraneous noise, I tried to avoid bumps on the highway and attempted to make his journey as smooth as possible. BUT, yes, it is exhausting to constantly manage and try to predict each moment and watch for every response to  create some ease in his life. This man saw that and I am grateful to him because I was a bit anxious and wired at that moment, so thank you - mysterious stranger - you showed me some support when I really needed it.

Our appointment was good, the doctors updated their charts, did more blood tests, examined him and weighed him. I am happy to report he is up to 150 pounds! That is so exciting! We have follow up and continuing care booked to monitor him but that is it. He goes in for surgery to reverse his ostomy at the end of January and then just recovery. It has been hard on him and I think all the doctors agree that it has been rougher for him than most patients, but he will get better, eventually.

During our "adventure" we have met so many people that we are grateful for. Specifically a few that have stood out are the original surgeon and rising super star - Dr. Gregory Knapp in Woodstock, NB - he personally gave Trip the strength and confidence to believe in the hope for recovery. Dr. Robert Thompson, Saint John, NB - who has reached out several times by phone just to see how he was doing, and who always has a quirky little smile for us - I think he thinks "we're cute" - but he remembers us and he cares. Ms. Erin Boone, medical admin support extraordinaire for Dr. Knapp - she has truly been a light of sunshine and support and I am grateful to have become friends with her. There have been innumerable people who have guided us and offered kindness - I don't mean to leave anyone out, but... I am going to say it takes a special sort of person to work in this area of medicine! 

"Mani/Pedi" well foot care... 
We also met a lovely young woman in Saint John - from Senior Soles Mobile Foot Care, Danielle and she has come to the hotels where we have stayed to provide foot care to Trip as well as conversation. She is becoming an RN and she is not only going to save soles, but souls. We have very much enjoyed getting to know her.

Of course as we attempted to leave Tuesday morning from our hotel we once again had delays. The truck wouldn't start, CAA arrived, twice, and we were finally on our way. Neither day, Monday nor Tuesday were anything major but they were extra money and time and stress and that all wears on my guy. It is amazing how little things can throw you off. For the most part I try not to overstress about them, just let them roll off my back like a duck, but, the anxiety related to them is really tough as you wait wondering and that - anxiety is an emotion new to Trip I think... It was very nice to arrive home to a warm house that my good friend prepared for me, thank you Andrea!

"Patiently" waiting for CAA
So, back to me and stopping the blog... I have so much to say but I think that I have probably said enough, there is  a time to be quiet and this is probably it, so my journal will get to continue to listen to me and I shall spare the rest of you. What has got me through ? Our children - they have all been great listeners and each offered their own support in their own way ... AND ...  You, the kindness of others, my community ... and singing... Am I good? No, but does it help me relax, reduce stress and pull myself out of the darkness? Yes. So as the great band "ABBA" says - Thank you for the music... Thank you for your support.... 

So I say

Thank you for the music, the songs I'm singing
Thanks for all the joy they're bringing
Who can live without it, I ask in all honesty
What would life be?
Without a song or a dance what are we?
So I say thank you for the music
For giving it to me
feeling hopeful
My last blog speaks to how I am coping and my self care, but...
Remember to sing, even when it hurts, 
Remember to dance, even when you don't feel like it...
AND... you may find me randomly singing and dancing in hotel rooms,
Or, grocery store aisles or parking lots... just because...
and you will MOST certainly hear me singing, somewhere, if you are listening!

Peace and Love,
Daisy 

PS: If you want to know more, feel free to go back and read the past blogs listed on this site. 

5 comments:

Sonja Forrester said...

Music and singing (even in a hospital bed) has gotten me through some very very difficult times. It can be very healing to your spirit and your soul. My anthem during a particularly challenging time was "Desiderata" and "You Raise Me Up". and nearing release from the hospital, I sang Micheal Buble's hit "Home". I am sure nurses thought I was weird, but it helped so much. I totally understand bursting into song at any given time and if I witness you singing in the strangest places, not only will I applaud you, but perhaps I will join in! I will miss reading your blog, and when the time is right, maybe you will start again. I have never met Len, but I feel I know him thanks to all you have shared with all of us. Love you both so much. Take care and "peace out". Hugs

Unknown said...

May your tummy never rumble
May your horse never stumble
May your heart never ache
May your cinch never break
Keep on keeping on

Sarah Sherman said...

Thank you so much for your ongoing support and understanding and more than 20 years of friendship ❤️

Sarah Sherman said...

Haha thank you ��

Lor said...

So good to hear that Len is doing so well, Sarah. An exhausting journey for you both. You always find the joy and if you can't find it in the moment, you create it. That is a special kind of talent, my girl. And I admire how you express it - singing, dancing or through writing. You are both often in my thoughts. All the best, always. xo