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!

Daisy...

My Daisy Charm - Travelling Companion

Daisy - For some reason I seem to identify with the flower - daisy. I LOVE them! I adore Gerbera's - had them all over my wedding to Trip and all colours and sizes! I have multiple table cloths covered in daisies. I have a pot of them in my yard. I love the variety of roadside daisies and I NEVER cut them in my yard, I just let them grow in the grass until they are done! This simple flower makes me happy and we all need to find our happy place. 

Because I feel connected to them on some subliminal level, I decided to look up different definitions and symbolism and this is what I found - do you think it works for me? I really do!

Daisy is a feminine given name, commonly thought to be derived from the name of the flower. The flower name comes from the Old English word dægeseage, meaning "day's eye".[1] The name Daisy is therefore ultimately derived from this source. - wikipedia

Daisies symbolize innocence and purity. ... In Norse mythology, the daisy is Freya's sacred flower. Freya is the goddess of love, beauty, and fertility, and as such the daisy came by symbolize childbirth, motherhood, and new beginnings. Daisies are sometimes given to congratulate new mothers. - ftd.com

Astrological Meaning of Daisies. In the realm of color meanings, the common daisy reveals its symbolic messages with the colors white and yellow. Yellow is symbolic of vitality, radiance, alacrity (quick wit), communication and creativity. White underscores the daisy's meaning of purity, innocence, cleansing. - what's your sign.com

English dæġes ēaġe (“daisy”, literally “day's eye”) due to the flowers closing their blossoms during night. - wikitionary

My annual Goldenrod Tea harvest

What do you think? I think much of this resonates with me, my soul and how I feel. Particularly the last one at the moment, because this blossom needs her sleep and is definitely ready to close at night! I am telling you about the Daisy because if you follow me, you know this is my self chosen hippie name and it makes me happy and feel good! So, when I received a beautiful gift in the mail last week, sent to me from a remote part of Vancouver Island from an old friend who is very dear to me, it brought me joy. It made my spirit light and feel happiness for a few minutes on a day that had been very tough. The adorable figurine arrived by Canada Post in a plain box , wrapped in paper with a beautiful card telling me I was loved. Thank you my dear friend! This gorgeous piece will travel with me in the hippie hangout as I rediscover who I am and hopefully find cleansing of my mind, replenish my vitality and communicate my creativity. The past week was busy and I didn't get to thank you...  

If you have been reading this blog - you know Trip had a rough week. He was very despondent and not sure what to do next and how to go on and that frightened me. I was working on an event (that turned out amazing by the way!) that took me and my attention away from him. This was following the arts festival and company/family visiting and while it was and is all awesome - it was hard for both of us. He needs me and counts on me to be there for him and that is where I want to be, so, I am officially declining further events/bookings/work until we get him back to the healing side and out of treatment. The coffee shop has two more weekends and will remain open until the ice cream sells out but I won't be leaving him much for a while.

Peace & Quiet

I guess for me one of the hardest things was trying to figure out what to do and how to make things work better. I have had fabulous support and help over the past few weeks and that was crucial but it wasn't quite the same. I spent much of last week navigating the medical system, doctors, nurses, receptionists, etc. Everyone has done their best but sometimes things just either get lost or miscommunicated. By Friday I learned the doctor wanted to meet with him prior to proceeding and I waited all day for the Monday appointment time. The phone was in my pocket and never rang.

Watching him get weaker and frustrated and trying to cope wore me down. I was up early Monday and had to call the cancer clinic as soon as it opened at 8AM and I learned that no one called me because no one was there. A slip up on their end and we rectified it immediately but that sort of thing causes anxiety and tension and in someone who is slipping into depression, any extra pressure is too much.

Fortunately we were able to meet with the doctor via a system called Tele-Health - similar to Skype but much more secure I assume. She was good, took more time with us, listened to his concerns and our mutual frustrations as we stressed his need to feel better. I advocated for him and he was strong in his opinions and feelings which I believe were listened to. You don't always feel that way, but I did yesterday. 

Trip testing this years apples

It turned out his white blood cell count is low, his potassium is low and that with his weight loss was to much for him to take treatment this week. Therefore he has been scheduled to start again on September 5th - this will mean he has almost 5 weeks between treatments to build up his strength and complete his last 3 sessions of chemotherapy. I could see his relief immediately. He just needed some time, to have someone understand his situation and allow him a break. We both walked out feeling calmer and stronger I think.

Right now we are resting. Having quiet time together. Setting boundaries and accepting that I am just going to be with him and stop trying to do too much. The house will slowly get into order as I reduce what I do - again. His health will improve as we focus on his meals, calories, healing foods and napping. I will feel better as I take time to just take care of me - I thought I was - but probably not. It is all a journey, one we maneuver together and when we come out the other side our love will have carried us through. It has been a strange summer - less socializing, virtually no lake time, no garden or pots of veggies growing, no canning and although the apple tree is groaning with fruit, we won't be able to pick much of it. I will do up some apples for us and I picked some of my annual goldenrod tea to dry today... but that's it!

http://sarahsherman.myctfocbd.com

I am so grateful for what we have, the people around us, the family in our lives and our children and grandchildren. My mom is amazing and I love her very much. I know sometimes I sound frustrated or short with her and I don't mean to, but I am thinking it is an unconditional love, mother/daughter thing. Yesterday Len/Trip said to me, "I need to talk to your mom." I said, "really?" because I usually do that. He said, "Yes, she is my 'last' mother. I need to let her know I am going to be ok and how you are." I thought that was so sweet... 

Maybe my mom is a Daisy too...

Peace and love,

Daisy

Personal Care Vs. Care Giving

ER - URVH - August 14,2018

The past few weeks have been busy. We host an annual arts festival on our property and while I thought we should forgo it this year, my husband thought we should proceed. He always enjoys the festival, fun and artisans who grace our place. He knew this year he would probably not be able to participate much, if at all. He did encourage me to continue, and I had mixed feelings. On the one hand, it is a lot of work and I would be on my own do it. On the other hand it is a great time, wonderful positive energy and if the weather cooperates, satisfied artisans and hundreds of people attending.

We decided to proceed. I am grateful and regretful. Mixed feelings are normal. I am happy that it went off without much of a hitch, we had a fabulous turn out of people and it was fun for me, for the first time to sit out front as a vendor. I am regretful because I think it was really hard on Trip/Len. He had a hard time resting due to the flurry of activity for days before and on the day of. I was not able to be as attentive as I normally would and unable to really watch and guide his intake of food/drink.

Brother Larry building the "Rustic Outhouse"

His brother/sister-in-law arrived a few days before and they were here to help, and help they did! They absolutely supported me in getting things done and offered assistance, love and help with Len. The festival occurred on a weekend between chemo treatments and all seemed to go well. We were overwhelmed by the love and friendship offered to us by the vendors/artisans/friends we have made. In some ways it lifted my soul and filled my heart, in other ways I felt I let Len down. These are my feelings. They are how I am expressing myself and others may disagree or condemn me, but what I feel is that I failed in some way.

Post festival and the satisfactory high that always accompanies a successful event, was the realization that he was floundering and falling. His symptoms were poor, he wasn't resting, his output with his ostomy was negative, he was having trouble getting food in and he was dehydrated. I know he was happy we held the festival but my perspective was I had not done my job well. I was missing the signs and not putting my attention where it belonged. His bloodwork came back poorly and due to his levels of toxicity he was unable to take his treatment this week. He needs time to heal before proceeding - this is upsetting for him but it is not really unexpected, I think it happens to most people at some point during the process.

Trip 'n Daisy Hippie Art - Golden Unicorn Arts Festival

I know that other caregivers reading this understand what I mean. You KNOW in your head that sometimes you have to do things that are just for YOU and that is some of how we cope with caring for an ill loved one. Having said that, you ALSO realize the guilt that accompanies that when you see your loved one is failing. It is a dilemma that we all face. You want to respect their wishes and just be about YOU for a few minutes but then you see how that has affected your loved one, or how they tried to hide how they were feeling to allow you space and you just crumble inside.

I am so appreciative of Len's family being here, they have helped physically, mentally and even gave me a break from some of the driving that I have to do. THANK YOU SO MUCH! I have one more commitment to complete - fortunately Larry & Lylia will be here to help with Len and then I think I have to stop everything until he gets better... that is hard to do but important and I am struggling with this decision but know it is right. 

We spent yesterday in the ER at our local hospital - because he was dehydrated, continued diarrhea which is serious when you are undergoing chemo and have an ostomy as well as we discovered he was suffering from an infection that was missed. On top of this he has lost more weight, 8 pounds in about 10 days. He isn't sleeping well and it is hard to take sleep aids when you are concerned about exploding pouches of poop. (Those of you with ostomies will completely understand that!) 

We now reevaluate, what next? How does he go on? He doesn't want to. The emotions and exhaustion are wearing him down and how do I as a caregiver keep him built up? What do I do or say that will fix it? I liken it somewhat to caring for a toddler - not in a dementia type of way - but in the way that when you have a toddler they spend the day going through a range of emotional reactions, they want something to eat but then don't touch it, they need a nap but won't take it and they poop a lot! They also need constant love and reassurance.

I know he will get through this, he has to. I know right now he doesn't care if he doesn't and that is so hard to cope with. My tears are so close to the surface. I watch him in pain or discomfort and I can't take it away. So what do I do? I wallow for a bit, I cry a little and then I "put on my big girl panties and deal with it!" 

Peace, Daisy Loves Trip 

My life as a caregiver

I am sitting in my chair this overcast Thursday morning, feeling the humidity begin to build and watching the sky start to clear. It's going to be a hot and humid day! Perfect for ice cream! What am I going to do? I have lots on my list but need to remain focused.

Every day there is a reason to smile

Today is Thursday "week one" which means it is the day after Len's 5th session of chemotherapy. Every other Wednesday we go to the hospital, he gets set up, on meds, IV, etc, then begins his chemo session. While he is being treated I run back to town to do as many errands as I can, grab groceries, etc. He is at the hospital from about 9AM to 1PM - then hooked onto a "baby bottle" filled with chemo drugs that are slowly absorbed into his body over the next 40-45 hours or so. Usually by midday Friday   we go back to the hospital to have the chemo removed, his PICC line redressed and head home again.

Initially we thought the chemo days would be the worst, but in fact, they are his best days. Between the chemo drugs, the steroids and the cocktails of prescription concoctions going through him, he is most alert, bright, chatty and motivated for those 2-3 days. He tends not to sleep as much during this time though. I joke with him that I have to "crack the whip" since he is only good about 6 days a month - anything he wants to get done, gets done those days. I am JOKING! (I don't crack the whip but I do nag!) We supplement his regime with CBD oil and THC concentrate to help him heal, rest, nausea, etc. The combination seems to help, I had reduced his CBD oil for a couple of days since we were getting low, but he noticed the difference, so back on it!

This week has been a long one. As a caregiver, I was a bit worn out. As we cope with hot humid summer days, 28-32C and high humidity, 4 trips to town, truck in the shop for a quick repair, out of the house between 7-8AM three mornings in a row and hours in town, it caught up with me. We have helped cope with Len's stress and fatigue by having the extra mural nurse attend the house on the Mondays and I drive the blood work up to the hospital, but this week he had a "telehealth" (Skype) call with the doctor, so he had to go. Monday was a rough day on him. It was all he could do to get to the hospital and back again and he was exhausted. (Keep in mind, even doing it fast, this was a 3 hour trip.)

When he has a hard time, he is in pain, discomfort, hasn't slept well, can't eat much, loses weight and has a too long trip to town, well, it makes life hard for him and it hurts to see him in pain and for me to be unable to help him. As you can imagine with all that going on the person can get short, tense, terse and a bit "grumpy." That is when it gets hard for me. The days I feel like nothing I am doing is right. No, he never says that and he doesn't blame me, but as a caregiver, spouse, the person closest to him, I DO feel responsible and the tears are close to the surface, sometimes I just go to another room, have a short cry, wash my face and start again.

I think that most caregivers do feel that responsibility. If you are anything like me, you try to predict each possible scenario, how to deal with it, keep meds and non pharmaceuticals on time, prepare meals that will hopefully entice the patient/loved one, meet their physical needs/limitations and keep them healthy, etc., balancing it all can be tough. Anyone who knows me, knows that I have spent the last 8 years of my life, learning more about food, preparation, presentation, creativity, healthy sustainable food, etc... So to be at a loss on what to and how to prepare meals, is more than challenging for me. At this point, I feel almost like I am dealing with a toddler when trying to entice him to eat. (No offense, he is not rude like a toddler but... his palate, interest and diet are not dissimilar.) 

For the first time in years I have some prepared foods on hand - soups, pastas, etc. I need to be able to make something QUICK when he needs it. If I have been to town all day it is hard to make a meal for when he needs it since I can never be sure when I will be home. I do prepare our own foods and left overs but what he liked one day may disagree with him the next. Between the nausea from chemo and the gastronomical issues with his stoma/ostomy - it can be touch and go. For a man who has never been sick, had a headache or hangover, who could eat anything you put in front of him, drank beer not water and loved his fruit and veggies - this is not easy. 

As a caregiver I just plug away, push on and keep trying. Some days I nail it! Everything on time (I am finding timers quite helpful so I don't get distracted.) Finding something he likes for a couple of days - this week it is ground beef in spaghetti with sauce and licorice for snacking... Some days I feel the weight of the world on my shoulders and just worn out. Suffice it to say I am not getting the "other" things done that I should. I am learning to accept that. 

He has been through so much, hospitalized for C. Difficile at Christmas, 5 weeks of Chemo/Radiation in January/February, major surgery in May, and now 4 months of Chemo every other week to be followed by another surgery - who wouldn't be exhausted? At least we are on the countdown, only 3 more chemo sessions after this!

I am very fortunate that for all my husband is going through that he is a kind and gentle man. I can only imagine the challenge it would be to cope if he was not. I have watched people I know care for their loved ones who were not as loving or patient during their illness. I witnessed how being ill can take someone who is a bit grumpy/angry to start with become a person who is cantankerous and miserable. I am grateful that is not our situation.

I do not begrudge in anyway being here for my husband. I couldn't imagine being anywhere else. I love him dearly and even on tough days he is good to me. If he has had a hard day, he apologizes, he doesn't want me to feel he was angry with me, but more with himself, his limitations and disease. He tells me daily he loves me and is so grateful to have me here by his side, he thanks me profusely and brings tears of love to my eyes. That makes it all ok.

I know that today, will likely be a day filled with energy and excitement for him. He has great ideas and thoughts and has to get them down. By Saturday this will begin to wane and by Sunday he will be in the rough days. As mentioned we are surprised how the "chemo" days are the "good" days. The support of the people around me, the contact through the web, the phone calls from my loved ones, they all carry me through. I especially enjoy the silly little SnapChat photos from my grandson - these all make me feel good. I get energized by working on our 7th Annual Golden Unicorn Arts Festival and creating Trip 'n Daisy crafts. Together we shall persevere and get through this! TOGETHER! 

Today is an "at home day" and it is time for me to get things rolling. Yesterday when we came home we were both excited, happy and overwhelmed with the beautiful gifts in the mail from Pawthorn Studio's Etsy shop - our happy hippie selves will truly enjoy the brightly coloured beanies! Check them out if you like happy things! 

Thanks for listening as I try to express my thoughts...

Peace and Love, Daisy aka Sarah

PS: How do you like the new blog look? I decided the rustic theme was no longer working for me and bright, light and airy was much more fun and inspiring! Your thoughts on that? 

3 years equals what feels like a lifetime...

Hellooo... are you still out there? It's been a long time since I popped in to say HI!

Trip calls Daisy "The Mandala Queen" hmmmm I have fun!

I have had so much on my mind lately and so many thoughts whirling through my head... I have written some "longish" Facebook posts but that doesn't really encapture what is happening in my heart. I have been considering coming back to my blog, it has been awhile ... actually almost 3 years! That surprised me, but then... it didn't... The past three years have been an emotional roller coaster and although I have been on Facebook, I realize I have withdrawn a lot from the rest of the world.

So much has happened and my life has changed exponentially - I don't think I am who I was even 3 years ago... My world has turned upside down and my emotions have definitely got the better of me - frequently. When you view another person's world on social media it can appear much better than it is, or much worse... I am guilty of that, probably over dramatizing some events that really weren't so bad and over exposing some events for being better than they actually were. I am trying to find and define the "new me," the who I "want to be."

I decided I need to express my thoughts, more fully again. Feel free to read on or to determine at this point you have had enough. I will completely understand! I relate to feeling that some people overshare and if you think that, it won't hurt my feelings if you quietly drift into the background and ignore my rambling... I am also frequently surprised at how many connect with my words and who may be going through something similar... For you, please stay with me and let's figure out where we are together!

I realize that none of us ever really knows all that someone else is going through and when they appear to be doing fabulous they may really be barely holding it together inside. In reverse there may be those who always complain but really have a pretty good life, even though they have had some rough times and those are always under the surface, life is trying to help them heal, they simply have to let it. I think my personal mantra is... Let it go... Try not to let others pull you down.

I guess we each, have to decide on our own how we deal with things. Who are we today? How are we going to cope? Are we going to accept that life can be awful but try to find the good? Or are we going to allow ourselves to wallow in self pity and personally destruct? If you know me at all you know that platitudes and simple phrases made when someone does not know what else to say - shut me down. I guess it is a flaw, I don't know. I would rather someone say - I am so sorry, that is awful, I truly believe things will improve and wish you the best... Or even "I have no words, but I am here for you." Over someone not knowing what to say and saying some simplistic "the sun'll come out tomorrow" type of platitude. I do realize they are trying to help, but often it doesn't feel that way and I seriously feel myself cringe.

Anyway, I digress! This first blog back into the forum of sharing is more general. There are things I want to say but they involve others and I need their approval to discuss. There are other things that simply affect me and I shall blather uncontrollably as need be. Again, stop reading at anytime!

My personal growth and life learning lessons - I suffer from PTSD - Post Traumatic Stress Disorder/Disease. Generally I cope pretty well and I have moved on enough that I can usually manage my symptoms. At other times, I find it completely debilitating. I am unable to move more than required to survive. I let things go around me. I breathe heavily and dramatically and probably sound like a crazy woman. I find food either something to simply survive or as a means of trying to fill an empty void which leaves me feeling even worse. I don't want to see people or talk to them and avoid the phone - communicate in messaging or emails. I either feel exhausted or can't sleep. I am emotional and withdrawn. Weeks can go by in an instant and I miss deadlines. The least provocation can trigger memories and pain that I had believed were gone. Often I put on a brave face to hide my crazy. 

This is something that will probably always be my albatross. It will pull me down when life gets rough and when things go smoothly it will make me wonder what my problem was. I love deeply. I hurt even deeper. When I feel a loss it is with every fibre of my being and each breath makes me grieve the emptiness. I want so much to accomplish certain tasks and get excited but the energy to complete them evades me. My anxiety is palpable and I dread simple tasks such as opening the mail; answering the phone; avoiding all conflict. Depression, I guess it is, but I just feel worn out. The ability to achieve my goals is out of my depth.

For example, when I was 30 I lost a dear friend and my heart was broken. I cried every day for a year, I started to cry in the shower so no one heard me and hoping the warm water would clear my ravaged face. My guilt, my pain, was so deep that I couldn't even speak the friends name... 20 plus years later we reconnected but I still wear that grief. More recently I was doing some web work for another friend and we worked cohesively for months getting through it. Then one day, I realized that weeks had gone by and I hadn't fulfilled my part of the bargain. There were changes to be made and I could not even open the email. I started to wake up panicking during the night, in a sweat, worried, afraid I had failed her too. Finally one day I wrote her an email to explain my fears and how I had literally LOST time. We are fine, but it took me a long time to address it and to ask her forgiveness, she said I didn't need it, we would get back to it. I once again slept through the night. These are small examples of how much I hold in and how it stops me from living. PTSD? I think so.  

I have once again put measures into place to help me get through but some days are tough and others flow beautifully. Since I have basically given up working to care for my soulmate I have started to be creative in other ways, simple ways but they are calming and help me relax. 

I am working on myself in my own way. I am trying to concentrate on how to make the world around me a better place. I want to be kinder, more empathetic, to everyone, not just people I like. (I think that is easy, but it is much tougher to be kind to someone who pushes your buttons.) I avoid gossip and hate seeing mean people on social media. I am always amazed at how someone can be so cutting, cruel and try to diminish another person. I just don't get it. I am not referring to political posts but to personal posts with someone you know. Clearly when people are mean on Facebook, etc. they are NOT your friend! I honestly don't see the purpose, yes you can think things in your head, but we do have a filter for a reason and we don't always have to express our thoughts, particularly if they are unkind. I, like most other people, read posts and think, SERIOUSLY? Why is this person sharing this? MAYBE they have nowhere else to go at that moment. MAYBE they feel alone, lost and rather than kicking them when they are down, do what Mom used to say "If you have NOTHING nice to say, don't say ANYTHING at all."

I am going to write again and share thoughts and you feel free to read them or not, agree or not, but let's agree not to be mean, ok? Because I truly believe, KINDNESS MATTERS!

Peace, Sarah aka Daisy