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Day 68. Spouses.

4/30/2015

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When we are choosing a partner for life we never consider the bad times. We are so wrapped up in the excitement of all the wonderful things we are doing together and the planning for a wedding that most times the sickness, in in sickness and in health is never considered. Who knows maybe none of us would marry if we had to think about that in depth on our wedding day.

We never know what is around the corner when we marry.

The love that we receive outweighs any potential hardship in the future. Yet we truly do not know what those decisions will entail.

Statistics show that marriages with a chronically ill partner end in divorce somewhere in the vicinity of 75% of the time. That number is more accurate when the woman in the marriage is the person who becomes ill or is in pain.

A Seattle oncologist Dr. Marc Chamberlain, started to see an alarming pattern while treating his patients with brain tumours. His male patients, typically received support from their wives, while a number of his female patients were there without their husbands, and ended up separated or divorced soon after diagnosis.

He decided to do a formal study, working with four other physicians. They studied 515 patients who received diagnoses of brain tumors or Multiple Sclerosis from 2001-2006. The women were seven times as likely to become separated or divorced as the men, according to the study, published in the journal Cancer (November, 2009). Divorce was most common about six months after diagnosis, and people who were married longer seemed to fare better, overall.

That's something I noticed myself while recovering in Lyndhurst rehab centre. I was there for three months after a previous surgery and during my daily physiotherapy treatments, I saw few husbands, yet most men had their wives by their sides. I asked Sylvia, my physiotherapist if this was common. She said it was very common. Most wives either were not working or took an extended leave while their partners were in rehab, while most woman went it alone. I had a sensible mix of both. Barry had to be in North Bay for a part of the week to care for the girls while they were in school. We came to a great compromise. He took them out of school Fridays and every Thursday night they drove to Toronto. We spent Friday, Saturday and Sunday morning together. It was difficult to be alone during the week, I readily admit, but it was the right decision.

I didn't give in to the loneliness I used it as a motivator to get myself out of there sooner.

As far as our marriage being threatened by my illness I would say it was not. We had some very tough times, but the focusing those though times was never on the marriage, it was on the illness. We tried very hard to work together and communicate was was going to work for each of us.

I had wanted Barry and the children near me while I recovered. At that time we had no idea how long it was going to take. He arranged for the girls to attend school in a school right next to the rehab centre. Barry had found an apartment he could rent by the month nearby and his employer had an office in Toronto he could work from. It seems like a good idea to me. I was broken, lonely and desperate to have my family nearby. We had a difficult discussion. But they didn't want to do that. It was too much of an upheaval for all of them. I see that clearly today, but on that day, I fell apart. I was as vulnerable as I had every been, and I just wanted the comfort of having them there to hug daily. Barry made the right decision and I have never held that against him, although I'm sure I didn't make it easy for him with all my tears that day. He did the best he could with the compromise we came up with. It had to have been very difficult for him, and I know it certainly was for me.

I have a great husband. He's a wonderful father and a terrific friend. He laughs at all of my stupid jokes and makes me laugh every single day. We choose laughter over tears and anger every day. Don't dwell on what you cannot change, and do the best with what you have been given. That's kind of our motto. We know well that every couple has a challenge, my health has been ours.

I know our love is strong, but it just doesn't happen, it has to be nourished. We have fun together every chance we get. He asks me every day how I'm doing, I'm honest, but then we move on quickly. It's nice to know he cares enough to still ask after all these years, but it can't be our focus every day all day long. Boring!

He has a life. He plays in a band, plays squash and goes to the gym, has a love affair with his bike which he cycles to work daily three seasons of the year, and is free to make plans without me. The making plans without me part is an option he doesn't initiate often, thankfully. Most importantly I don't expect him to give up what I can no longer do. We compromise today as we had in those early days at Lyndhurst. We've become experts.

Having a supportive spouse means having somebody you can be truly vulnerable with, and somebody who will be your truth. It's a fine balance between doing something for you, and helping you do something for yourself.

I want a partnership, a husband and a friend, therefore he cannot be my caregiver one hundred percent of the time. During times of acute illness or surgery obviously things change. There's a shift, but as soon as possible it is important to get the equilibrium back, and be husband and wife again. No marriage can survive a patient/caregiver relationship forever.

I think above everything else that makes it work is to remember to be kind, and loving to the person who is not sick. Recognize that their lives have changed too, and remember to not only be grateful for them but to say thank you.

So thank you Barry, you are the best husband I could have ever asked for, thanks for making me laugh every day. We have many adventures ahead of us and places left to see in the world, and we dream and plan for those things daily.

I'll leave you with the words of a hero of mine.

Once you choose hope anything's possible. - Christopher Reeves
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Day 67. Lyndhurst.

4/29/2015

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Yesterday, while in Toronto we took the time to go back to Lyndhurst Rehab Centre to look around. It's part of my preparations for what may come. I had been having yearly visits there for a full check up, up until about four years ago so I have been back.

This was Barry's idea, and a good one. We wanted to go there and see how it all felt for me to be there again.

As we walked up to the entrance, the feeling of dread was soon replaced with gratitude. That is one of the feelings I had daily while I was recovering there years ago. You don't have to look to far in that place to see somebody worse off than yourself. I swear it is what kept me going the last time.

As we entered I noticed there was more of a buzz to the place than there was 13 years ago. There were people everywhere, coming and going. I remember it being far more quiet.

The other difference that was obvious was the number of people who were walking with supportive devices. When I was there I remember being one of three inpatients who wasn't in a wheelchair full time. When I arrived I required a wheelchair, and after a few weeks of hard work and a great physiotherapist I was walking with a walker. Studies have shown that more people who have incomplete injuries are getting help quicker and therefore able to walk again. The fact remains if the injury is complete walking is far less likely.

One of my biggest struggles was wheeling a manual wheel chair. I had just had a surgery in the thoracic spine. I had a nine inch raw scar between my shoulder blades, so every time I pushed those wheels forward, I was pulling on those muscles around the scar. It was tough. I was wheeled around when family was there, but when they weren't I was on my own. I had to wheel down a long hallway to the dining room for meals and daily for physiotherapy. I seriously remember one day partway down the hallway deciding how hungry I was. Was it worth it? Many times by the time I got to Physio, I needed a break before we started.

They actively practiced tough love there. It is necessary I know because some people would do nothing to help themselves. I always thought those of us who had had surgery should be given a break, but it worked, I'm walking today!

So what can possibly be worse than a manual wheelchair to a newbie?

They weren't sure if I would be in a chair long term or not and with the difficulty of the manual chair, I was fitted for an electric chair. This was quite a process. You are measured from head to toe. Each piece of the chair is chosen specifically for you, there are decisions about height, softness of the seat, weight of the chair and on and on. Finally all parts assembled, they go away and build it for you.

I'm not sure who was more excited when a couple of days later my chair arrived. Barry and the girls were visiting and we all gathered in the gym to tweak the last few things and I was sent on my way. It was a beauty, brand spanking new, and fit me like a glove.

I wheeled around the gym to get the feel for it and right away I noticed two things. Number one - there was absolutely no pain in operating this chair as opposed to the manual chair. Number two however became a problem... I was a bit heavy on the handle. A speed demon.

I realized I couldn't speed around the disabled people in the hallways, dodging bodies and other wheelchairs. As much as I tried to slow down I just couldn't seem to get it.

Barry and the girls encouraged me to try it out in the hallways, as they thought it would give me a better feeling of how to manoeuvre my new set of wheels. Boy were they wrong. With a wall on each side, I had something to hit as I bounced from one side to the other. The girls were squealing with delight as Mom made a demolition derby out of the rehab centre. Barry, being his ever patient self, was helping guide me along the way. I couldn't help but notice the look of concern in his eyes.

Every evening I had to transfer to my bed and a nurse or attendant would plug my chair in just outside my door. I'm sure when it was plugged in for the night there were many sighs of relief throughout the rehab centre.

I'm not sure how long I had that chair before I finally said "I can't do it." Never an easy thing for me to admit defeat but I was so concerned about the safety of the residents and their visiting family that I had to give in and give up! Besides I reasoned, I'm not going to need a chair, I'm going to walk. They all nodded tentatively each time I told someone that, but I believed in my heart I would. I had too, I really sucked at manoeuvring a wheelchair.

As I walked around the centre yesterday, I noticed the positives about it. It is a beautiful setting nestled amongst clusters of large trees, the grounds are beautiful. The centre is vibrant and clean. I know for sure the staff are second to none.

If I do need rehab, I will go back there feeling much better about the place, but I sure hope for everyone's sake I don't need a wheelchair!!
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Day 66. Pre-admit at Toronto Western.

4/28/2015

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My day started out just fine. Barry and I had a quick coffee and then headed to the hospital where we had some breakfast. I was feeling the effects of yesterday's four hour drive and all the activity. My pain level was pretty high. Toast and coffee was all I could manage. That, as it turns out was a mistake.

It was an extremely day long without any breaks for food.

The first stop is an administrative one where you take a number and wait. I'm not sure if it was the lack of sleep and low sugar combined with a little PTSD, but tears came as soon as I walked into that room. I was sitting there without control as they dripped down each side of my face. I hadn't felt like this for awhile so it had really taken me and Barry off guard. I kept waiting for it to stop but it seemed to be picking up steam. I was texting as a distraction with my sister Mary and the woman from my pain meditation group. Somebody reminded me to meditate. I got my headphones out and did just that. There's a five minute first aid meditation exactly for times like this. Don't get me wrong, tears are okay, but I had to have my wits about me today to talk with everyone as you will see, it is quite a process. I felt much better after the meditation and with Barry by my side, and my girls texting along the way.

Once seen - they check all dates, time, insurance coverage and that all of the paper work is filled out. Take a seat, somebody will come and get you for your next step.

We waited once again, then a pharmacist met with me to go over all medications that will be using and to make sure I stop Celebrex a week before the surgery. Take a seat she said, somebody will come and get you for your next step. There was starting to be a theme about this day already.

By now it is close to lunch time and after waiting for a while Barry suggested he go and grab us a sandwich. He wasn't gone long when a nurse called me into a office to go over procedure, take blood pressure, swabs were done to be sure I wasn't carrying some contagious virus. After a long meeting she said, you guessed it... We took a seat.

We were soon lead off for blood work and an EKG, sandwich in hand, Barry followed along. Once told to sit in the waiting room we devoured the sandwich and drink, just as the technician came to get me. Eight vials of blood later, I was lead to EKG. By now, I was exhausted and in pain and I looked it.

I was then sent to get a CT Scan. It was a long process, there were a lot of people and though I had an appointment for 2:15pm it was three before I got in. It too a while for them to get all the shots they wanted too. After lying on that hard scanner and the long day I could hardly walk. Thankfully they were very kind and helped me along. I headed back to Pre admit, where this time they were waiting for us.

We were brought to meet a doctor called an anesthesiologist, who will put me to sleep. It was a lengthy meeting as we had to go over concerns from other surgeries and solutions for them not happen again. He went through my complete medical history. I was asked so many questions some of which I had to guess. My memory is not the best and I was exhausted at this point. We thought that was our last stop and just when we thought we we free to go he said I required a set of X-rays.

Off to x-Ray for a chest x-Ray and an x-Ray of the lumber spine. I was done. I was seriously done.

I went out to meet Barry, and we both just sat there for a minute. We had planned to drive home after the pre-admit. I felt near tears out of pure exhaustion and he was not feeling the best either.

Our dear dog sitter and friend, Kate had offered to stay another night, so we could technically stay. 

We were torn, we have a lot of expenses coming up but today we had to let that go.

We headed to the hotel checked in I got in bed and did not get out for twelve hours.

I know it would have been a hard day for me physically because it is a lot in one day for someone who had pain limitations, but the emotional side of it comes from a trauma years ago. That response was not that surprising in retrospect and one I will be ready for the day of my surgery if it comes.

It's done. I can put that out of my mind for now and enjoy the month of May.
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Day 65. Lemonade out of Lemons. 

4/27/2015

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This is one of those situations where you make lemonade from the lemons you have been dealt. I have to be in Toronto for my pre-surgical admit appointments all day today. We decided to make it a good experience by celebrating Meghan's birthday while we are here. Monday is a full day of doctor’s appointments and bloodwork, CT scans etc. and we have to be there in the morning until late afternoon. So we drove down on Sunday to have some fun.

There's nothing that makes me feel the special kind of happiness like when Barry and I spend time with the girls as a family. We love new experiences and in keeping with our ‘doing things instead of having things lifestyle’, we celebrated Meg's 20th birthday yesterday. We met at the hotel and headed to a wonderful authentic Italian restaurant for dinner, complete with Tiramisu as a birthday cake with a candle. Once we had sufficiently embarrassed Meg by singing Happy Birthday, we headed out to visit the new Aquarium in Toronto. What an amazing evening we had there.

Knowing it would be an impossible feat for me without a wheelchair I agreed to it, and we chose Sunday evening to attend, as there would be less kids to navigate that thing around. I have Jerri to thank for pushing me up those rolling inclines and keeping me in the chair doing the fast declines. Her legs hurt a little today from all that pushing uphill. I guess I'm a good work out. Nice to be able to use "me" and "work out" in the same sentence again!

What we were all so surprised with was the unbelievable amount of knowledge our budding Marine Biologist has. Meg was able to explain everything to us, even the staff commented on how knowledgeable she was. So that's what she's learning, so cool.

It was a fantastic experience having sharks swim above your head and right beside you. I knew I would enjoy it, but it was far better than I even expected.

Having been out on the town, it was time to head back to the hotel. We watched the last of the hockey game and headed down to the hot tub, to soak these weary muscles and bones.

In true Clout fashion, the night was not complete without a rousing game of something. We went back to the room where Jerri’s boyfriend joined us for a game of Fishbowl. It's a combination of charades, and several other games. It was great fun. We learned that these sisters have some weird telepathy and they can't lose. Lots of laughs and a wonderful family day.

Even though I was exhausted after all of that, it was still a rough night of sleeping. Lots of pain, but once again I wouldn't trade that day for anything.

That was some pretty good lemonade yesterday, now I have to go and deal with those lemons.
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Day 64. Maple Syrup Festival.

4/26/2015

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There's nothing more alluring than a baby goat, live music and maple syrup. 

Today I woke up in pretty rough shape. I had nerve pain, and back pain, but we also had a plan. We were going to the Powassan Maple Syrup festival. We had already modified our day because of me by skipping the pancake breakfast to eat at home, but I was worried I might have to bow out and stay home. I really wanted to go.

Barry's band was playing and I knew from last year that there would be baby goats and hundreds of venders. I also knew there was seating. I took some medication, used my cream for nerve pain and had a hot shower then sat with the heating pad as the others prepared breakfast. That's a hard thing for me to do. I hate to sit while others work, but I was desperate to go so I allowed it all to happen. 
I was still a little rough but we ventured off to Powassan. I had my sister Mary with me who has Fibromyalgia so I felt like I might be able to keep up with her. I'm so glad I pushed myself. What a great day. Some things are just worth it, this was one of them.

The day was a nice spring day and the sun was shining. We strolled around and tasted the wonderful things made with pure maple syrup. There was a lumber jack show, a dog show and live music all day long; but nothing more enjoyable as holding a two week old goat. They are so adorable. We saw them last year and they were the high light and they didn't disappoint this year. 

We got to listen to The Blackbirds play and enjoyed every minute. It was great to get out of the house and enjoy the variety of experiences the festival offered.

A visit from Mary and Sam and having Meghan at home was just what we needed. We had just gotten the news that the surgery was delayed so it was such good timing to have company and a unique experience. 

We are on track again, and s new count down begins. I can do this and stay positive. I can do this.
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Day 63. Some Days Dogs Don't Pull. 

4/26/2015

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I had a co-worker many years ago when I was teaching at a life skills program. His name was Ralph and he was a bit of a character.. Needless to say we got along well. I was having a bit of a day. The fire alarm went off during our morning meditation, and we had to file all the students out of the building. Not a great start to our Monday morning routine,which was already hard enough with the group of students we had. Having overcome that, we were in his classroom chatting at lunchtime when we heard an explosion type sound coming. From the student's lunch room. Worried for the student's safety we ran to see what had happened. We were afraid of what we might find. We ran into the lunch room to find them laughing and rolling on the floor. There were bits of white and yellow all over them and the walls and the furniture. Nobody could stop laughing long enough to tell us what it was or what happened. Obviously relieved we sat to let our beating hearts catch up with this curious scene we walked into.

Apparently, our North American students we always a little disgusted with the daily habit of our student from Tunisia of eating a raw egg at lunch. Wanting to "fit in" he put it in the microwave to "cook it." Oh boy, it cooked alright. He didn't really know how to use the microwave and put it in for an extended period of time and eventually the door blew open and cooked bits of egg came flying out everywhere. All we could do was laugh. All of us sat there and laughed for a long time. It was a great teachable moment later on in the week about accepting others and their practices without judgement but in the moment in time, we enjoyed the hilarity of the situation.
We spent quite a while cleaning the room together and there was no way I could continue with the serious, emotional topic we had planned to cover that afternoon. 

When the room was put back together, and Ralph and I were walking out to the main office, I commented on what a day it had been. First the fire alarm and the the lunch room fiasco and I had such a deep topic chosen to cover that day, I explained. Ralph laughed and slung his ran around my shoulder and stopped to look at me. "Maureen he said. Some days your dogs just won't pull." 
I have never forgotten that saying, it stuck with me. Those days when you know your plan will not work out, you will not accomplish your goals, yet we try to fight it. I now picture the sled dogs at a complete stop and the occupants sitting waiting for them to pull. Now I like to get myself of the sled and wait for another day to take that ride.

My dear friend Ralph had since passed on, but that little bit of wisdom has always stayed with me. Thanks Ralph.

Yesterday was the first time in 62 days I have not written my blog. I had a lot going on and with my limitations......let's just say my dogs didn't pull!
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Day 62.  Finding the Silver Lining. 

4/24/2015

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Dealing with disappointment is one of life's many challenges. They are there daily in small ways and throughout our lives they are sprinkled throughout in ways that are frustrating, hurtful and in some cases it can even be disillusioning. For whatever reason they are there and we must deal with them. Sometimes it is a much sought after position; a trip that gets cancelled or in my case yesterday, it was a change in date for my surgery.

My surgery date got changed from May 13th until May 27th.

With just an apologetic phone call it was done. Unforeseen circumstances was the reason, and it was difficult to find a date as close to the original date as they had. I felt stunned. I know in the great scheme of things two weeks does not make a huge difference but it certainly is when each day the pain is worse and fighting off the worry demons gets harder and harder.

All that said, it is one of those things in life I have absolutely zero control over. I thanked her and hung up. Meg and I just looked at each other in disbelief. All the organizing and preplanning will have to be looked at again. Barry has put in for holidays and a one weeks 'work from home allowance', booked a room near the hospital, and his work around the date.

I had to let it go and let it go fast. There was nothing I could do to change it. Without much time to dwell on the negative, I saw a silver lining. Although it means I cannot go to my brother's wedding for sure now, as there will not be enough recovery time - I can go to Rachel's wedding.

Margie and I have been friends for over twenty years and have been there for each other through everything. We are like sisters, her daughter Rachel is like a niece to me and her wedding is May 16th. I can go to the wedding. I quickly called Margie. Her response was priceless. She was silent. She said she couldn't breathe for a second, she was so excited!

Acceptance makes life easier; fighting reality makes it harder. Finding a silver lining is a bonus in every situation. So the next time you are faced with a disappointment, look hard for the silver lining.
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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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