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. 

Reflections, Regrets and Resolutions... Hello 2019!

Here is to a BETTER year!

It seems as one year ends and another begins, that we, as humans in the western hemisphere, take stock of the outgoing and assess what we would like to accomplish with the incoming year. Really it is only 365 days, it can start at anytime, but it often provides us with a reason to set goals and hope for the next 365 days, you have to start sometime right?

I took my love and I took it down
Climbed a mountain then I turned around
And I saw my reflection in the snow covered hills
Well the landslide brought me down - Stevie Nicks, Landslide 

As you may know, the past 365 days in our house, have been kind of tough. There have been some days with hope and excitement, but they have been few and far between. One year ago, I had to put aside my hopes and dreams that were pre-set in my mind and adjust them to the reality of learning how to cope for myself and be an aide to my ill husband. I am fortunate that I had the opportunity to do so. Has it been easy? Nope! Would I do it again? Yes!

Our wedding 7/7/7

9 years ago, we celebrated the New Year with dear friends and family in our rental house in Nanaimo, BC. A short time later we made the journey to New Brunswick and Nova Scotia to search for a new home for our little family. It was exciting and an adventure, but it was never easy. At that time we had been trying to buy a home in the Nanaimo area and although we were approved by the bank, etc, we just kept getting roadblocks in our way. We saw that as a sign we needed to adjust our expectations. We needed to find a place to live, raise my young girls and be able to get by comfortably with what we had as income. This year, we celebrated New Year's alone - but with hope...

The idea was I would "retire" at age 44 from the traditional work force and become a stay at home mom. I was happy to do this and to set up our country house, see them off on the bus in the morning, be there when my kids came home from school, and spend the days with my husband, animals, etc. I am grateful to have had that opportunity. Of course, life is fluid and things never quite go according to plan. I spent time working for others house cleaning, helping care for an elderly woman, becoming a part of the local farmers market, starting an arts festival, helping Len with his monthly periodical "The Messenger", creating websites, having a little shop in my house, serving in my community, starting a 4H club for the local kids, teaching local "chef" classes to children and trying to immerse myself in my new world, and of course parenting....

A year ago, I stopped pretty much everything. The kids were gone, some sooner than expected. I regret this. I miss my children. One has moved back to Vancouver Island and the other, is gone from home early, now living in Woodstock. I am grateful that we all have contact and good relationships. I regret many things and I see that I did not parent as well as I thought at times. I made mistakes. Every parent must feel that to some extent. I guess all we can do is admit them, try to learn from them and apologize when we can - while allowing our children to remain accountable for their own actions.

Well, I've been afraid of changin'
'Cause I built my life around you
But time makes you bolder
Children get older
I'm getting older too - Stevie Nicks - Landslide

I feel judged by those around me for some choices, experiences and consequences. That hurts me, deep in my soul and simply formulating those thoughts out loud make my chest feel heavy and my eyes tear up, I feel a choking in my throat and push the tears and grief back. Saying this is not meant to hurt anyone, it is simply me, how I feel, the emotions that burden me. When going to my small town and running into people, I imagine they are thinking, what did you do wrong? How come you gave up? Don't you care? That is the last thing in the world that is true, I care too much, I hurt too deeply, but I tell myself I am good at pushing it all down, deep inside. I believe in the long run, it will be ok. My children will be ok. I know they know I love them and as much as I have failed at, I did my best.

journal memory 

This past year, caring for my husband, helping him through his surgeries, cancer treatments, innumerable medical appointments, daily care, dispensing his medication and taking care of his every need, even before he realized he needed it. I do not regret being there and I am so grateful that I was able to be by his side. I honestly feel sad for so many people who go through this alone and I think they are so brave for making it and not giving up. I know there were days we both felt done. I now realize I let myself go, I didn't not take care of me and that my friends, is where we come to the infamous word - Resolutions!

Simple Abundance - journaling

I try not to set resolutions as they are so easily broken as they days of winter draw on and we get further into the new year. I do like to call them goals, and that is what I have set for myself. 14 years ago, when I was in some of the darkest days of my life, a dear friend gave me a book called "Simple Abundance" by Sarah Ban Breathnach  At the time I needed something to remind me that I had things to be grateful for and although I did not follow it as long as I should have, it definitely helped me appreciate being alive and the simple joys in my children's days. It has warmed my heart to re-read the thoughts I had at the time and also made me laugh. I chose to write down, by hand, not computer, in a journal, 5 items of gratitude each day. Some days it was knowing my children could laugh again, other days I was grateful for drugs, alcohol and medication - hey, whatever it took at that point to get me through! I also wrote several times about my gratitude for counseling, for all of us.

Every day, your own true path leads you to a happier, more fulfilling and contented way of life-the state of grace known as...  SIMPLE ABUNDANCE. Sarah Ban Breathnach

As I read through my journal, and prepared to start it again, I found a card from my oldest daughter who was 10 at the time. Her words touched me deeply, she always did have a space in her heart to worry about her mama, and to try to take care of me and in her young words  - you can see how she continued to try to make me happy. Such a burden I must have put on her! I am ever so grateful for her though and you can see I always loved daisy's as she drew one on my card!

Sweet card full of love

I tend to compartmentalize my life and put things into "boxes" and not think about what I don't need to. In doing that, I forgot the pure joy my little one gave me as she smiled, as she learned to walk again and as she pushed through her rehabilitation and the strength she had. She has always followed her own drummer and while I don't always understand her "band" she is very strong willed and she will get through life on her own terms. 

some days you take what you can get
"grateful for drugs, medication and alcohol"

I have begun working through the book again, it is a 365 day plan, next to it I have started my journal  and I can see my journey, even with the many years gap that I have taken. I have my yoga/meditation studio in my room and self-care is my resolution for 2019. However, that plays out - yoga, meditation, journaling, long baths, listening to peaceful music and songs of joy and inspiration, experimenting with new crafts and techniques and the universe willing - my trip across the country in the hippie hangout!

My peaceful place

Len and I (aka Trip 'n Daisy) have a few more hurdles to work through, but his strength is building. He has more good days than bad days now. His next surgery is at the end of January with about a week in hospital and then healing... I continue to be by his side, grateful for the love, support and donations that have allowed me to do this. Looking back on my journal 14 years ago, I see how my community of friends and family pulled me through then and reflecting on this past year, how you have all done it again. Yes, I need people and I am so grateful for them!

My hope for 2019 is to spend a year healing and caring for both of us, building our strength and continuing the courageous fight to get through this life! I am so excited to see all of our family and especially our grandchildren - being far from them is definitely a regret - we shall reunite with the "old" and meet the new... I am sure they will think we are weird... and we are... And of course... I shall pay it forward...

Reflections are good, Regrets are human and Resolutions are fluid...

Peace and love,

Daisy 

Embrace its gentle lessons, savor its sublime common sense, dare to live its passionate truth, and share its extraordinary and exhilarating gift with every woman you encounter: the authentic self is the Soul made visible. Simple Abundance

This year shall be filled with "Simple Abundance"

From Fear and Grief to Healing...

It takes two Baby and I
will always be by your
side - even on cold days!

As many of you may know from Trip's recent blog update - when we met with the surgeon on November 28th we had the best news we could hope for - Trip is CANCER FREE and the doctor is able to reverse his ileostomy and allow his body to once again, work as nature intended it to. We couldn't wish for more or be happier! I think we were both in shock - we hadn't had high expectations based on how he had been feeling and all of the testing he had undergone... but we were ecstatic!

I  think it takes some time to get your mind around good news - not that you are displeased, certainly the opposite, but when you are dealing with day to day crisis' and watching your loved one in severe pain, it is surreal to suddenly be told - all is well - just let your body heal. I think reality started to hit by the time he individually called each of his six children, his brother, sister, ex wife and mother in law... By then - it began to sink in and feel real.

We both rode a wave of euphoria for a few days, close to a week and then I knew he was beginning to see the future once again... How did I know? Well, he began to discuss some world events, financial insecurity and ... well, his pessimism began to creep in ... I think when one is facing life and death, or believes that they are, that there is some personal reckoning with their life, history, past and loved ones future. In some ways it is frightening... many tears, depression and a general feeling of loss. On the other hand there is less worry about the things we feel we can't change as well as some regrets and acceptance of one's role in the world around us and lives of our loved ones.

Quiet days, listening, waiting...

For my part, since I can only speak for what I watched Trip go through... My days were absorbed in watching each moment for signs of how could I help? Listening to each sound - for pain, grief, and trying to keep him pulling forward. There was a period of time that was so intense, I didn't think we would make it. Days where he barely moved, or spoke or ate... Mornings when I was afraid to walk downstairs because I didn't know if he would still "be here." So many discussions about how to deal with the end of life decisions and what to do "after." I think that October and November - were my low points. I didn't expect that, since chemotherapy had ended and it seemed all should be "well." But it wasn't.

Why do I mention this now? I think to acknowledge how far we have come. How much he has gone through and the strength and courage we both had to draw from. So many people were so supportive and encouraging and that truly pulled me through when I didn't know where to go next. Now, what I am going to say may sound ungrateful and I don't mean for it to, but the purpose of my blogging these days is to identify with caregivers and how we feel, so forgive me if this does not come through as intended...

So many people said "I knew he would be ok" and yes, theoretically I knew it to, so please don't see me as being fatalistic - but while yes, in theory - all systems were a go - in reality it was not so. I think at one point we both lost hope - we were defeated and exhausted. I was thinking about how to move forward, what would my future hold and he was - not so much giving up, but done. While, the words  "you just have to be positive" may be true, when you have gone through more than a year of watching your soul mate fight and be in pain, you wonder when is it ok to stop. There were definitely moments of great despair and hopelessness...

Not able to paint yet, but making
jewelry helps pass his days...

Now, I can voice these things since there has been a complete 180 in his healing. He is back to eating and enjoying it most days, he is gaining strength and energy. His body is building up its resistance and preparing for what we hope is his final surgery and we accept that this will all take time. There is still some pain, but it's lessening. The loss of feeling (neuropathy) in his hands and feet is difficult and we must be careful of the heat and cold and general well being of those appendages. I know we will get there. I no longer wake up in fear of how the day may greet me. I wake up,rested, sleeping in and knowing I have to go down and get the stove fired up again and his mush on the table to start the day. I look forward to discussions, playing backgammon and sipping our morning coffee together. We spend our days, side by side, working on small projects and not overdoing it - but creating items for our upcoming trip.

I am grateful, I am not complaining, I am recognizing that it has not been easy, that caregivers have moments of difficulty and need to draw on their own tenacity to move ahead. I am beyond grateful for the excellent care we have received from so many in the healthcare system; I am annoyed with some of the frustrations - but overall realize that his healing has been a bit of an anomaly and he hasn't always responded as expected. And, while it is not perfect, I will always be grateful for our Canadian healthcare system.

I am so appreciative of those who have helped us get to this point - emotionally, spiritually and financially - I had no idea how tough it would be and know that more needs to be in place to help people with the day to day needs. I can't even express my gratitude for the people who have assisted us so that I can be here to care for him. We have been fortunate, many aren't. The travel, day to day needs, ostomy supplies, medications, etc, can wipe out many families. We are ok and that is an amazing feeling!

Celebratory lunch - after we got
the GOOD news! His hair is
coming back beautifully!

I watch the phone daily, waiting for the call for Trip's final surgery - which is not looking like it will be before Christmas. It will be soon, he will heal and we shall rejoice! Trip 'n Daisy are happy hippies!

We now enter the Christmas season and my gift is the present. Nothing else matters but today - knowing we are here, still in love and grateful for the moments we have together - and excitement about our future - whatever it may hold! My hope is to be able to visit all of our family this next year, meet our newest grandchildren and see those we have not seen in years. If I can wish you anything this season of love and giving - it is to wish you "enough." 

Peace and love,

Daisy 

Hello? Is anybody out there?

Candlelit dinner on a stormy night

If is now late October 2018, this blog has been running for about 8 and a half years now and has morphed from our journey from British Columbia to New Brunswick, from working mom to stay at home mom to homesteading and now to caregiving for my husband. What a trip it's been! Who knew when I started writing this that we would be here today and that all the miles between would feel like a lifetime ago! 

Tree damage,
not too bad overall!

I guess life is like that though. I find I am a bit like my dad that way, we get excited about new projects and ventures and about every 5 years or so need a new adventure. My dad left his "safe" job in his early 40's to become an entrepreneur and I left my "safe" life in my mid '40's to start over as well. We both left our comfort zones and we both left our families and friends to begin again. Now I am in the next stage of life, caregiver to my spouse.

As my life changes so does this blog. The purpose of my blog now is to reach out to other caregivers and identify challenges and stresses that we may come up against as we provide daily care to people we love; as we offer them a quality of life that we would want and as we maneuver through the healthcare system. Secondary to this writing is to update you on how my Trip is making out and doing as he fights daily to heal and recover from his cancer battle. Mostly, it is to know that whether you are the caregiver or the "patient", we are not alone, we need help and support but we just keep getting up each day and doing it again because we want to, we need to and it is what we know our loved one would do for us. 

Cooking dinner while he sleeps
Power out for about 12 hours

The past few weeks have been long, they have been healing and they have been frustrating. We have had trips to the emergency room, he has had CT scans and is scheduled for an MRI. We have gone through power outages - at the hospital as he was about to have his CT and longer ones at home 12+ hours during our first winter storm. We have had to rebook appointments and thus wait longer for information. No problem, just take it in stride and be prepared.

It has been hard to watch him in pain and struggle with the frustration that no one can seem to isolate the problem or offer a solution. Living on morphine is NOT a solution! Pain causes weakness, and makes it hard to eat or drink and get strong. Pain and drugs make for lots of sleeping at which times I wonder, do I wake him or let him sleep? I have to wake him, to eat and drink and eliminate waste from his ileostomy bag. I make calls and ask for help, just to wait... I feel as though I can't do anything because what if  a doctor calls? What if an agency calls? What if I need to take him to the hospital? So, the phone is attached to my side. I stay in the house so that I don't lose the signal and I am quiet... I don't play music or watch shows because I need to hear if he is ok, how is his breathing? Is he moaning in  pain? This is our life. 

Let's clarify, these are NOT complaints, I am not asking for or expecting any consolation, I am just voicing how it is, the day to day, the emotions, the exhaustion, the reality. Part of my coping is to share and write it down. Some of the hard things to cope with are, I don't want to leave him alone, but I can't get any help, we are too far away from town. Some days it feels unnecessary to think home care would be required because he is up, feeling good, able to stay awake for long periods of time and even do "walking laps" around the house. Other days it is all he can do to make it from the bed to the bathroom and how can I possibly leave him alone? Last Monday a good friend spent the afternoon with him, which reduced my anxiety greatly as I hurried to town and back.

Doing some dryer repairs

Not bad but still not working
On to step two today

I can get support for home care, but I can't get any service. Living in our rural area is beautiful and amazing but not when you need help. No home care will come, no plumbers show up, no one wants to drive out here to do work. The last month I have spent hours calling, asking, needing, but nothing. So, I do it alone. Again, this is just life. I figure it out.  I will winterize the trailer myself. I will pull down the damaged trees from the storm. I have learned how to clean out and repair my dryer (I hope!) and I make accommodations and try to meet challenges head on, maybe not always with a smile but I am grateful for my friends at YouTube and Google who are assisting me as I go forward. As well as the Facebook world who answer my call when I ask for advice.

What to do without power?
Rug making by the fire!

I am sure we will get through it all but if already feels like it will be a long winter. I am not complaining, I am sharing. What do I need? What do caregivers need? A hello, a how are you, a chat. I find it hard to do that because I have nothing else to talk about. The days run into each other and I often have no idea what day it is. How do I determine the calendar of events? Simply that - Monday is extramural nurse day and me to the hospital with his bloodwork; the other days are determined by medical appointments and phone calls and the search for help as needed. Minutes, hours, days, all blend into each other so I keep my journal close to ensure I don't forget anything.

Before the major snow hit

So, if you speak with a caregiver, just say hi, ask them how they are and listen - if they say fine - they probably are that day or they don't want to get emotional - if they say not much is up, they might mean - tell me about you and your life because I really do want to hear about something else. Many people say "I didn't think I should call or stop in." Why not? At the most I will say "Thank you or it's not a good time." Or maybe we can have a cup of tea, even if he is sleeping, or maybe he will be up and ready to talk for a few minutes. Don't ignore caregivers, they need you, talk to them. Tell them about you - What are your kids up to? What adventure are you on? What is next for you? It really is nice to think about something else for awhile and just live vicariously through you. Tell me something funny, make me laugh. Let me feel your joy for just a few minutes. 

Don't forget about me. I am still here. 

Peace and love, Daisy

A time to heal, A time to mourn, A time to love...

Celebrating the END of chemo!
8 pounds ago... 

Friday, October 5th, was the last day of chemo, the end of 8 cycles of treatment, the bottle was removed and my handsome gonged the cymbal and celebrated to the tune of "Gonna Fly Now"  - the theme from the Rocky movies. He woke up that morning, felt like a fighter and was ready for this part of his journey to end. It didn't end. The past week he has been at his lowest and sickest ever and I wondered if he would still be with me when I got up in the morning. His fight was gone, he was exhausted and slept, almost all day. Out of 24 hours, he was perhaps awake for 3 of them, long enough to void, eat and fall right back to sleep again. It was so scary and I thought this was it.

I know that finishing this long treatment was not an automatic "you are better now" resolution, however, I didn't expect it to be like this. My poor husband was weak, battered and had no fight left. He may have "danced" to the Rocky theme music a week ago but the after effects, physical, psychological and emotional wore him down. Now, if you know him, you know he can have a bit of a "fatalistic" or "pessimistic" attitude, but this was not that. This was worse, this wasn't a thinking man spouting off his beliefs, this was nothing... zero... zip... and scared the hell out of me. 

I couldn't leave him alone. I couldn't wake him up. I couldn't get him to speak to me. I couldn't get him to eat more than soup or oatmeal and very little of that. I read the books about "after chemo" and "what to expect" and that the fatigue was normal, but this did not feel like fatigue. This felt like nothing. That is such a poor description but he didn't care about anything. The little emotion he had was tears running down his cheeks; remembering his parents deaths and focusing on that; and apathy with the world around us, including me.

We are both looking tired and weathered,
 but still here!

It is now Saturday, a week later, he is still here. Last Wednesday I had my doubts. We had to go to the surgeon to meet and discuss the action plan and what is next, and that was demoralizing for him. We both walked away unsure about the future. We also discovered that between Friday and Wednesday he had lost another 8 pounds. That terrified me. I proceeded to spend several days crying, worrying and trying to figure out how to cope, how to help him and what to do next. I realize I can't leave him even for a few hours when he is in that state and have to put a plan in place for that. 

Thursday, he sat up for a bit longer and actually asked for food. I would have done anything he wanted at that moment. Friday, started strong and by mid day he was done again, worn out, in bed, pain starting and little appetite. I have been reading a lot about life after chemo. It is not an automatic improvement. Everyone is different. Doctors say that there will be a slight improvement and increased energy over about an 8 week period. From what I read, for some people this can take a year. I am here. Whatever he needs, I will do my best. Some days are harder than others. My energy is low for doing much except for him, I have endless energy for his care.

We often wonder how people who are single or alone cope. I can't even imagine how one would get by without someone to drive them, care for them, prepare their food, take care of all the day to day stresses, bills, laundry, cleaning, etc. We are both so grateful that I have been able to just be here for him. Listen for when he wakes. Assess his pain and discomfort and track his pills and medications. The journey is not over. The bell rang but the gong show is not over.

I keep the wood stove going, the house warm and I listen to the hum of the fridge, the freezer click on and off; I grab the phone so it doesn't ring more than once and disturb him; I intervene at the door if someone arrives; I attempt to predict his wants and needs and ensure that he is "watered and fed."  I shield him from financial, political, social and environmental issues that may over excite him or even more frightening, hold no interest to him. This is the life of a caregiver. Any of you reading this who have been caregivers, know what I mean. It is not special for me, but it is our experience at this time and for as long as I am required I will ensure that I am available - willing and able.

Signs of encouragement at URVH

Day by day, moment by moment. This is life. Would he have chosen chemo again? I doubt it. Does he think he did the right thing? Some days yes, some days no. However, we make the choices with the information we have. The research done, we look at the statistics and standard of care. We use pharmaceutical and holistic methods and we go forward. I see meme's and comments and judgements and I don't know what I would do if I was in his situation. I do know however, that we each do our best and what we feel is right and we need to respect those choices. Would we do it again? Maybe not. He has been a warrior and he has worked hard... 

One day, we'll ride again...

However, this is life now and I am so grateful that I still have my handsome, because he still is and always will be. I am so thankful for that foot rub 13 years ago that made me see my friend in a different light and opened my eyes so that I could see his love. I am here for the long haul and we may not travel; we may not get to fulfill some of our dreams, but my dream is to be with my love and that dream has been fulfilled. 

Peace and love,

Daisy

Just breathe . . .

Just breathe . . . be in the moment . . . let the rest go . . . 

It is easier said than done... It has taken me about ten days to realize that I have been building up to an anxiety  breakdown. Is that a thing? I am not sure... However, it has caught up with me. That shaky feeling, difficulty catching my shallow breath, headaches, dizziness, heart palpitations, disrupted sleep patterns, tension, clenching my teeth, irritability, finding others actions pushing my buttons and the inability to concentrate! It is driving me crazy! 

I am not completely sure what is going on, I suppose there are a variety of factors, none of which is to blame, but together they are making me a bit of a wreck. Some of have control over, others I don't, yet I feel a bit lost, and that dear reader, is where you come in! I am hoping that by expressing my feelings, putting it "down on paper" so to speak, it will help release some of my panic.

I managed to lose about 15 pounds over the summer, in part the heat always reduces my appetite, but in the past week I feel a hollow spot in my stomach. I eat properly but it still feels empty. I have turned to popcorn - the corn and oil are organic but the butter and sea salt are not doing my body any favours! My limbs feel heavy and everything is an effort. I suppose in part some of this is the change in the weather but I worry about how I am reacting. I hate hearing the phone ring, I dread having to talk to anyone and it is  stressful to know I have calls to return and just can't make myself do it.

So these are some of my anxiety related issues:

Trip 'n Daisy
In the Hippie Hangout

Chemo started again this week and although we are excited that Len/Trip has built up his strength and gained weight - I am anxious about his every movement, feeling, emotion, eating and sleeping. I watch him closely, hopefully I am not irritating to him. I struggle to entice him to eat - which he has been doing well but now that we are through this cycle of chemo (two to go) I watch his strength ebb and his spirit wane. He was eating very well and had gained weight but when we weighed him Friday he had lost 1.5 pounds... Now that doesn't sound like a big deal, but it was two days into chemo and he had been eating - so it tells us that his body is working hard to assimilate the drugs and it is taking a lot of his energy. We are counting the days until it is over! He tells me today he is feeling ok and slept pretty well, of course he has not got out of bed yet, so we shall see! My job - keep him healthy, fed, watered and rested!

The amazing surgeon we had work with Len had passed his file to another doctor. His original surgeon had recommended a CAT scan in September, then a colonoscopy and then surgery by October sometime. This week it was a bit of a struggle to get things on track again and I am glad that I pursued and pressed for some answers, but we are disappointed to know that he will not even see the new surgeon (who is also highly recommended) until the first week of November. Now we are stressed about whether the "window of opportunity" for a reversal of his ileostomy will be possible. There seems to be conflicting opinions on that... I guess this adds to our anxiety and stress... My job - follow up, be persistent and don't let him fall into the cracks in the system!

I am not near either of my children at the moment, at least not in their day to day lives and I am watching them both struggle, that hurts. It always causes anxiety to worry about your kids, no matter how old they are. I know my mom struggles with worrying about me and I am 52 so I guess it is not unusual for me to be anxious for my girls. They are both strong, stronger than they believe but I know they are going through troubled times and that makes me anxious. I worry all the time. I struggle to be civil to people who think I "do too much for my kids" or think that "they should be able to do everything themselves". Am I a "helicopter parent?" I don't really think so - I am pretty sure I am not a "lawnmower" parent - but at the same time, if we can help them navigate some of life's challenges, why shouldn't we? I do try to show them the way and have tried to get them to do things for themselves, but I realize sometimes I help because I know their anxiety is high. I guess in this respect I will always have trouble because my kids have basically had one parent, me. I feel complete responsibility for what I have done/or not for them and I know - they also have anxiety issues - which are definitely related to my parenting. I am aware that they are now both responsible for their choices, but, it is never easy as a parent to see them go through turbulent times. So, anxiety for me? Yep! My job - offer support, help them find solutions and listen when needed.

Trip's books available on Etsy

I feel a sense of sadness as I close up my shop, put things away and start to prepare for a long cold winter. I love September and I think autumn is nature's way of allowing us to slough off the old, hibernate and recharge for spring. Yet, I feel a tightness in my chest and notice I am working through many deep heavy sighs and have a choppy breath. How come? I don't really know, I guess it is just life, everything combined. I know I am not unique. We all have our struggles and worries and challenges so what can we do? I am planning ahead and have hobbies to keep me busy over the winter, but when my depression and anxiety strikes, it is all I can do to sweep the floor and keep the kitchen clean and laundry done. Last night the temperature dropped to 2C and it is cold in here this morning, so time to get the wood in the porch and a light the stove - our primary source of heat. My job - set achievable goals each day and don't overwhelm myself.

Daisy needs some daisies!
Time to talk to my herbalist!

Just breathe . . . long, slow, deep breaths. Try to release the energy that is building up and bouncing around my body. Find useful things to do, organize, clean, meditate. I have a million ideas in my head of things I need/should do and a billion reasons NOT to do them. Oh well, it will all come together right?

As I lay in bed last night, I did feel better for writing this, releasing my thoughts and fears and I lay there practicing relaxation techniques taught to me many years ago by a therapist. I lay on my back, palms up, slow breathing, and I feel and wiggle each part of my body, piece by piece and relax that muscle until my whole body is complete. I used to do this with my girls as well and have them visualize a beach or pleasant place and help remove themselves from the stress that had taken over their bodies. It works, I rested well, albeit a bit cool!

Now, if you read this and thought, but SARAH/Daisy - I thought you were on your hemp/CBD oil and were coping better?! I was, I am. I was on the oil that worked and pending getting it again I am on a different brand and I can say it is NOT working as well, which disappoints me, and also makes me realize that I have found something helpful in my life.

Daisy circa 1968/9

If you knew me as a child or teenager, you will know that I was always shy, timid, and cried easily. We didn't call it anxiety back then, but it was. Mine was so crushing that I would cry before I would speak to people and I would fail a class before I had to present in front of my classmates. I almost lost my first government job because of anxiety and my fear of asking for help. I outgrew this - mostly. I still have set backs and I am simply having a set back. So, now what to do? Just take the moments, plan little tasks and remember to B R E A T H E slowly and deeply . . . 

If you read this far, then, thanks for listening and hey guess what? Writing this last night, did help me, perhaps journaling, writing, blogging or putting notes on paper will help you too.  If you have anxiety issues - you are NOT alone! 

 Peace and love, Daisy

PS: Check out our Etsy Shop as we will be adding items to it in the next day or so! 

Autumn and Angels...

Giving thanks - it was a good day! #tripndaisy777

This week had several hot and humid days that marked the end of summer. Yesterday it was much cooler and last night or early this morning I woke up at 5:30AM cold and unable to get back to sleep. I added another blanket to my bed, then a little later I put on my flannel pj's but the cold had seeped into my bones and sleep was gone. As I prepared to write this blog, I checked the weather network and now I know why I was so cold... the temperature was 4C at 5AM! Brr!!! They are calling for a long cold winter so I guess it is almost September, goodbye August! 

Autumn is my favourite time of year. I love the feel of the sun but relish the crispness in the air. The leaves turning and crunching under my feet make me feel alive. Len has 3 more chemo treatments, starting this week again and I am going to enjoy the long drives down country roads surrounded by trees on our way to the hospital. Some people journey to the Maritimes for the fall foliage, I simply go to town. I try to find the joy in the moments and be grateful for what I have. Our world has changed dramatically since this time last year we were headed to Newfoundland.

This summer has been unusual, I have been less busy than normal and feel like I have so much time on my hands. With the time I have you would think I had accomplished more, yet I feel as though I have been very lazy. I realize that I can't get too involved in much though because then my attention wanders for too long from Len and I forget to ensure he is keeping his intake up for food, drink, meds, etc. So, I am giving myself a pass on laziness and hope that it does not become a habit.

#spreadthelove #hippiehangout

Fortunately the last few weeks of my completely focusing on him and putting all else aside, is working! This week we checked his weight and he is up 9 pounds from August 16th when he was down to a frightening 131 pounds. He is now a "fit" 140 again and I hope to increase that a little more by next week when he starts chemo again. His blood work all came back as normal as well, so this break has done him a world of good! I am happy to report that his energy is up as and he has been able to walk more "laps" around the house, and paint more hearts of gratitude for the hippie hangout! Many of the hearts have been purchased at $5 each towards our journey but there have been some people we wanted to recognize for their support and they have been added as well!

A "short" story to end my update... Each Monday the nurse comes to the house and flushes Len's PICC line, takes his blood, checks his blood pressure, which has been a concern and then I drive his blood up to the hospital, do errands, see my daughter and head home again. This week Len was feeling pretty good and he thought he might come with me. I wasn't sure he was quite there yet and so I encouraged him to stay home and rest a bit more before travelling to/from town. Let me tell you, that was the right decision!

The weather on Monday was lovely, warm but not too hot, a nice breeze and clear skies. I drove up to the hospital, deposited his samples and headed back to the parking lot. I was feeling good and looking forward to having a coffee with my daughter in Woodstock. I put the key in the ignition and attempted to start my truck. Nothing. The lights came on, so I didn't think it was the battery but all I heard was one small click and the motor was silent. I waited, tried again, and again, and again. After about 5 minutes I reached for my cell phone and CAA card to get some help. My bright spirits were fading but still pretty positive.

Wind blown hair and
Parking Lot Sun Tans
 Peace, Daisy

CAA told me it would be 30-45 minutes for the tow truck to arrive and give me a boost. I was pretty sure the issue was deeper than that, but hopeful, so I put the windows down, relaxed and enjoyed the day. As I sat in the truck waiting I was relieved that Len had stayed home. I thought about calling him to let him know what was happening but then realized he did not need any extra stress or worry and perhaps all would be well and resolved quickly. After about an hour I had a call from the tow truck company that they had been up river and it would be a few more minutes for them to arrive. 

When the tow truck pulled up, it was Campbell's Towing and Automotive out of Woodstock, who happened to be my mechanic, and where I bought my vehicle and my go to tow guy. I laughed and said, "Me again!" I also suggested a loyalty card - 9 tows and get the 10th free since I seemed to be a frequent customer. He attempted to boost my battery but as I thought, that was not the problem. He predicted it was the starter. Since he already had a car on his flat deck I had to wait for him to take it to Woodstock and return for me. That was another hour. 

An aside from this story but related ... When we bought the truck we got the power train warranty for two years the caveat is - the warranty is only valid IF you maintain regular oil changes - every 10,000km or 6 months, whichever comes first. I KNEW this and I was diligent about it and worked to ensure that I kept up with it because I knew we could NOT afford the repair bills that may be associated with the upkeep of the vehicle. Having said that, we spent six weeks in Saint John during January and February; the winter was hard and long; Len was very sick... Do you get where this is going? 

This Toad Is Getting Towed

I MISSED the oil change and when I finally realized it... it was too late. I was sick with grief over it, my anxiety was rapid and painful - knowing I had caused us extra stress and financial hardship! I felt the depression and guilt suck me up and could only HOPE that we had no vehicle breakdowns. Of course this is unlikely and we did... In May I had to take the truck in for an oil change... finally.. and  I wept in the office at Campbell's as I was sick with self-reproach; of course there was MORE wrong than just an oil change... I cried in Len's hospital room knowing we were entering a rabbit hole and I couldn't see a way out. That repair was expensive but wouldn't have fallen into the coverage anyway, but it was a warning to me... More was to come.

So now my truck was in the shop, they once again gave me a loaner vehicle, which they are so good about, and it looked like it would be about a week to get it back since this was Monday and they couldn't even look at it until Saturday and it was going to be a long weekend... Imagine my surprise when I got a call around noon on Wednesday to advise me my truck was fixed and ready to go! I hadn't shared my transgression with Len because I was hoping it would never be an issue. My angst waiting to hear about the repairs kept me awake at night, again. The call from the shop office blew my socks off!

Now, in addition to the repair there was a noise that needed fixing and I was due for another oil change, so this was added to the full repair. I counted my money to see where I was at and hoped this would not wipe me out. Then the voice of an angel spoke in my ear, "Sarah, your truck is ready." First, I was not expecting it for a week, but what happened next... restored my faith in humanity. "The starter repair was $700 but you only have to pay $150. I got your coverage back." I didn't know what to say, I started to cry, I asked, "How???" She answered, "Well, it took a long time and a few supervisors but I explained your situation, what happened and that you were within you mileage and they reinstated your policy." I AM SO GRATEFUL! What would have been close to $1,000 all together was $343!!! 

Angels do exist! People do care and go out of their way. My heart swelled and my eyes filled and my throat choked with emotion but, the universe, the people in my world, they gave me hope and another chance. Yes, some days are hard, but it has been a good week! Len is healing and ready for more treatments and we KNOW we have got this! My community is kind and giving and my angel worked and advocated on my behalf.

Thank you everyone for your continued love, support, kind words and friendship! The leaves are turning colour and although that signals the end of summer, to me, it signifies the beginning of Len's healing and our continued life and love together. The shop closes up following this weekend and it will be time to get the wood in... Winter is coming!

PS: Did I mention I LOVE Campbell's Automotive and Towing? 

Peace and love,

Daisy

If you are interested in knowing more about Trip 'n Daisy - our alter egos you can find us on Instagram, Facebook, our Website or view our items for sale on Etsy!