This is the story of the loss of my dear friend and business partner to glioblastoma (a type of brain tumour) in 2016. I recently met someone who raises funds for those supporting a family member with this devastating diagnosis. Both of this woman’s parents were diagnosed with glioblastoma within two weeks of each other and both died within the year. After having received much support from her community, including complete strangers, she started an organization that raises funds and provides support groups to those affected by this type of cancer. Reading her story made me realize that I have never really told mine. Perhaps I haven’t because it was too painful, but it’s time.
It was a routine Monday morning in February of 2015 and I was at home when the phone rang. It was my business partner’s husband. He told me that Gail was in the hospital. The two of them had been off on a cross-country ski adventure on the weekend so my first thought was that she had broken a leg. When I asked him what happened he started crying. The floor dropped out from under me. This woman was not only my business partner (we had a physiotherapy practice together), she was a dear friend and one of the kindest people I had ever met.
“You’re really scaring me now. What’s going on?” I asked. In a strangled voice he told me that over the weekend she had started losing her balance and then when they returned home on Sunday she started slurring her speech. They went to the hospital where she had a CT scan that showed two masses on her brain. She was to have an MRI to confirm, but they were pretty sure the diagnosis was glioblastoma – one of the nastiest, deadliest, most aggressive types of brain tumour you can have. A colleague of mine lost her husband to this disease and she refers to it as the mother fucker of cancers.
I asked to speak to her. She got on the phone and in true Gail style was thinking only of her clients. She asked me to cancel her appointments for a couple of days and proceeded to rhyme off all of their names. Back then we used paper agendas and hers was at home so it’s a good thing she remembered who she had on her schedule. I asked her what she wanted me to tell them. She said, “Just tell them I have a cold. We don’t really know what we’re dealing with yet.”
I hung up shaken to the core, then had to hurry myself out the door to work to get the phone numbers and start making some calls. Those who know me well know that I suck a lying. I am so bad that I can’t even keep a surprise party a secret. It’s written all over my face when I’m trying to hide something, so making those calls was very difficult. I managed somehow.
Then I had to bumble through my day when my mind was clearly elsewhere. I also had to deal with my clients asking where Gail was that day. I tried with limited success to lie to them too.
That evening I had to call Gail’s husband and arrange to go to their house to pick up her agenda and her laptop. I needed access to her schedule and her contact list to deal with her clients. I ran over there and he left the stuff in the garage as he had gone back to the hospital.
The next morning Gail called me early. I had just arrived at work. She was having trouble finding her words which freaked me right out. She told me that she had had her MRI and that she had just been told that it was most certainly a glioblastoma and it was too deep for surgical treatment. She was to have a biopsy later that day but it was pretty much a formality. The doctor had said that she had about three months to live if she didn’t have chemotherapy and radiation, and 12 to 18 months if she did.
She asked me to call the rest of her clients. I asked her what she wanted me to tell them. She said, “Tell them the truth. I won’t be back.”
Suddenly I couldn’t speak. We sat in silence together on the phone for a while both with tears pouring down our faces. Then she tentatively said my name. “Yes?” I answered.
“I love you,” she said. I told her I loved her too then hung up and started to dissolve in a puddle of despair. The thing is, I had a client arriving in ten minutes. I tried to pull myself together and get on with my day but when the door opened I knew I couldn’t do it.
I went out to see my adolescent client and her dad and tried to explain the situation while remaining professional but I just couldn’t hold back the tears. I think I freaked them right out and they were probably happy to get the hell out of there.
I went back in the office and proceeded to call all of my clients to cancel them, having to tell the story to each and every one of them, and then deal with each of their shocked and saddened reactions. Once that was done I called my then partner and asked her to come and help me call the rest of Gail’s clients to explain the situation. It’s like I knew that I had to just plough through the whole list right then and there before the whole thing really sunk in.
She came and I went through Gail’s agenda. I knew almost all of her clients so between that and having access to her records I could pretty much figure out which of the clients I should speak to myself and which ones could deal with a call from someone they didn’t know. Technically I broke some confidentiality rules of my professional governing body by giving an unauthorized person access to this information but in that moment it was all I could do to survive.
We started making calls. When you treat people with neurological issues such as strokes and brain injuries, you have a long-term relationship with these folks. Some of these clients Gail had been seeing for many years. Every single one of them was devastated and I had to absorb all of that. I had to answer all of their questions and soothe all of their pain, even while mine was threatening to overwhelm me.
We were almost done and down to the letter Z in her contact list when it happened. My partner was making the last call and I was finished so I could hear what was being said. This particular client had only been in once or twice so I figured it was one I didn’t have to handle myself. Then suddenly I heard the client’s voiced raised through the phone. “What? Oh my god! We’ll have to come back right away and help!”
Oh shit. I grabbed the phone and then found out that this client was a longtime friend of Gail’s. They were on vacation out of town and a perfect stranger had just hit her with this news. I felt terrible. Thankfully she was very understanding but it was just horrible for all of us.
By the time we finished I was absolutely done in. I looked at the clock. I wanted to get to the hospital to see Gail before she went in for her biopsy. We were cutting it close. We ran out the door and sped to the hospital.
When we arrived we went up to the neurology ward where I found Gail’s sister pacing the hall talking on the phone, and Gail’s bed empty. Dammit we’d missed her. When her sister got off the phone she told us she had already gone into the operating room and she took us to the waiting room where the rest of her family was. Her son and youngest daughter were there and to see them was to break your heart. We waited in silence literally leaning on one other for support. After a while we left the family to their privacy and went home.
Over the next few days I had to go to work to treat clients (no work no pay when you are self-employed), continue to tell the story over and over, spread the word of what had happened to our colleagues, and try to think about who was going to take over some of Gail’s clients as I couldn’t manage them all on my own. I also had to keep track of our cash flow as we had literally overnight lost almost half of our business income. I had to have conversations with her husband about how we were going to cover the clinic expenses at a time when it was probably the last thing he wanted to think about. Fortunately we had a small reserve in the business but keeping track of it all was a lot to handle.
Later that week when Gail got out of the hospital I went to see her. She was completely unable to speak and hadn’t been able to since coming out of the operating room. You could see from her face that she understood everything she heard and that she knew exactly what she wanted to say but she couldn’t get it out. The doctor thought it would improve and that it was likely due to swelling from the biopsy.
It never did. She lost her ability to communicate verbally and never got it back. The last meaningful words she ever said to me were “I love you”. And I am so grateful for that.
To put all of this in perspective, when Gail had left the clinic the day before her cross-country ski trip she was perfectly fine. She skipped off out the door with a cheerful goodbye. There were no symptoms and no hint of anything wrong. And here she was less than a week later with a fatal diagnosis and completely unable to communicate.
That’s how fast this fucker can grow. That’s how quickly life can change. The irony is that Gail and I had treated many people with various difficult conditions involving loss of mobility, pain, and cognitive issues. Amongst all of that we both thought that the worst thing would be to lose your ability to communicate, and here she was facing the thing she dreaded most.
For that first week I had held myself together for the most part, as I had no choice. I had pressing issues to deal with and clients to take care of. I also had two children who were very young at the time and who needed me. I took care of everything until I fell apart.
The following Monday morning as I was getting ready to go to work everything came crashing down. One of the kids did something, I got upset, and the dam broke. All of the emotion came out and I found myself shaking uncontrollably and absolutely wracked with gut-wrenching sobs. In an instant I became feverish and my immune system crumped on me.
I now had to cancel all of my clients and explain everything yet again. I just couldn’t do it myself. So I called a retired colleague and asked her to call my clients for me. To her credit she hesitated only a second or two in confusion and then picked up a pen and took down the information. I technically breached confidentiality for the second time in a week but my colleague joked that I had just hired her as a receptionist and I could pay her later. All covered.
I spent the next week in a haze of illness and devastation. I lay there feeling the pressure of being a mother, being a business owner, earning income, and trying to figure out how to carry on, none of which I had a clue how to do right then.
When I got back to work I was so overwhelmed. I had to go through all of Gail’s charts to see who needed what and figure out how I was going to accommodate them. I had to coordinate handing over their care to other therapists, sometimes in another practice. I fielded call after call, each time bracing myself to answer all of the inevitable questions. I had to clean up the last of the bookkeeping from Gail’s treatments.
It was then that I realized there were small telltale signs that something was off. She had made mistakes in some bookkeeping entries and had started chart entries and never finished them. There were small mistakes here and there but truly only in the two weeks previous to her diagnosis. Later the oncologist would tell us that the tumour may only have been growing for those two weeks prior. Two weeks. That’s all it took for a perfectly healthy person to become someone who had balance issues and could no longer communicate verbally. This realization also shook me pretty badly.
Fortunately we both had taken out overhead insurance when we started our business together. This covered Gail’s half of the expenses but it required lots of documentation, which I had to provide to her husband in order for him to put in the claim. I cleaned up the bookkeeping, made entries in every chart regarding why care had been temporarily suspended, and I treated clients all day every day.
At the end of the day I went home to two small children and all the demands that come with a young family. I was so busy that I only could visit Gail every few weeks. I would pop over sometimes after work. You might think those visits would be awkward given the fact that she couldn’t speak but they weren’t. Gail was one of the kindest most compassionate people I have ever met. When she lost her ability to speak it was like she realized that the only way for her to communicate was to exude these qualities. And exude them she did. It’s like you could feel the love pouring out of her towards you.
When I would update her with what was going on she responded with an amazing range of facial expressions and sounds that told you not only was she taking it all in, but that she cared. At times she would try to respond but couldn’t. I think most of us would have gotten very frustrated and angry in a situation like this, but Gail would just shrug, smile, and give you a look that said, “Shit happens.”
A few months went by before she began to lose her mobility. It had been a while since I’d been able to go and visit. I had invited some friends over for a barbeque and Gail and her husband came. I was in the backyard with the kids when my partner came around the corner of the house with a very uncomfortable look on her face.
“Gail’s here,” she said. “I think you better come and help.”
I headed around the house and was confronted with Gail’s husband all but holding her up while she tried to move her legs in some semblance of a walking motion. He even had to use his foot to move one of hers forward. I am a physiotherapist who works with people with neurological issues and I was shocked. When did this happen?
The friend in me was crushed, but the physiotherapist in me realized her level of care had just been upped a serious notch. She also clearly needed a wheelchair, but these can be touchy subjects to bring up. She was even having trouble eating on her own. Oh boy.
I managed to speak privately to her husband and he said that he would be getting a wheelchair. I urged him to get an assessment of their home for safety and mobility issues. I wondered how the heck she was bathing but I was walking a fine line between friend and therapist. I had expertise to offer but didn’t want to overstep my bounds.
The next while would prove to be quite a tightrope act walking that line. On one visit I watched her husband help her up the stairs for the night. I could barely look. He got her up there but by gods it was precarious and could easily have turned into a disaster. I am in no way judging what was going on. There was little choice at the time. It was not realistic for him to spend tens of thousands of dollars to put in a lift on the stairs for what we knew was not going to be a long-term need. It’s just that as a physiotherapist I pretty much couldn’t watch, even while I had to accept that that was their reality and there was nothing I could do to change it.
In August Gail attended her older daughter’s wedding. The pictures from that event are beautiful and they bring tears to my eyes whenever I see them. Gail radiated the joy of being able to be present to see her daughter get married. I am so glad she was able to do that.
In the meantime at work I was facing some difficult decisions. The overhead insurance coverage lasted one year so it bought me some time to think. By the time I felt like the whirlwind had started spinning a bit more slowly six months of that was gone. I knew the clinic space we had was too large and expensive for me to pay for by myself so I needed to decide how to handle it.
At first I thought I might be able to do it if I found a massage therapist to rent out some space so I rolled the dice and spent some money on a small renovation to the clinic. When it became apparent that that wasn’t going to work I came to the inevitable conclusion that I was going to have to cut my losses, break the lease, and move the business to a smaller space. Gail’s husband and I had to sit down together and figure out where the money was going to come from to pay the enormous fee to get out of the lease. I hated bothering him during this time, but due to his business background he knew it had to be done.
My next task was to find a new commercial space. Suffice to say that finding the right space for your business is difficult enough, let alone when you are under financial pressure, a time crunch, and an emotional wreck. I had to be out of the old space on a set date and I had to find a new space, get a lease signed, and get the place fitted up on a very tight timeline.
At about the end of January of 2016 Gail started to lose her ability to use her legs at all. I hadn’t been to visit for a few weeks, but one day I went and her husband asked me to help him get her on the commode chair. It was then that I realized that he was essentially lifting her and she was not really able to help with her legs at all. He lifted her while I dealt with her clothes and wiping her up. How the heck he was managing that on his own was beyond me.
Out on that tightrope again I went. I had to gently broach the topic of getting some help in and maybe getting a bed to put in the living room. He told me he had reached out to homecare and that they were to get back to him. While we were chatting the phone rang. It was the homecare intake person. I listened while he answered her questions and it became readily apparent that he was seriously downplaying the situation. I had an urge to grab the phone and tell them he needed urgent help but it was not my place to do so. I just had to trust that when they came to the home to do an assessment that they would figure out all of that. Gail’s husband was a remarkable caregiver and I had to respect how he was handling things while giving him time to process it all.
In the next few weeks things went downhill pretty quickly. At that exact time my daughter, who was four at the time, became seriously ill. She ended up in the hospital with a potentially life-threatening illness. There I was by her hospital bed when I got a text message from Gail’s husband.
“Gail’s not doing well. You had better come,” it said. I told him where I was and what was going on to which he very appropriately replied, “Oh for fuck sakes, no! My heart is breaking.” Yeah, mine too but I can’t show it right now.
We had a two year old at home so my partner had to be there and someone needed to be with my daughter at the hospital. How the hell was I supposed to go see Gail? We had to mobilize some help from extended family in order to free me up but we managed. When I got there Gail was very groggy and in and out of consciousness. We were clearly nearing the end.
My daughter ended up getting out of the hospital a couple of days later so I was able to spend more time at Gail’s house. A consultation had been arranged with a palliative care doctor who came to the house while I was there. Gail’s husband asked me to stay during the conversation. The doctor was wonderfully kind and compassionate. She explained the different ways things could be handled and assured us that Gail could be kept comfortable no matter where she died.
When she left, Gail’s husband said that he wanted to keep her at home and not move her anywhere. “Um, are you sure you want to do that? Not everyone can handle living in the space where their wife took her last breath,” I said.
“I’m fine with it. I want to keep her here at home,” he replied. I admired his courage and his tremendous love for her so much in that moment.
I don’t really remember how I bumbled through that week at work but I guess I managed somehow. That weekend was the family day holiday. I spent a good part of it with Gail and her family as it became apparent that these would be our last days with her. I will be forever grateful for the space they afforded me at her side at that time. Gail died in her living room peacefully, surrounded by love, in the early morning hours on family day, February 15, 2016.
As her family made funeral arrangements I had tons of phone calls to make. I notified her longtime clients and large numbers of our colleagues, again absorbing all of their pain and pushing mine down in order to get through the task. When it came time for the hours of visitation I realized that I was going to have to be there for all of it, as I knew that a lot of Gail’s clients and colleagues would be coming and that her family would not know any of them.
I arrived early for the first visitation and the family was in the salon with the coffin. I turned around to leave them some privacy when her husband invited me in. I told him that this time before guests arrived should be for family. He looked at me with a slightly confused look on his face and said gently, “You are family dear.” I’ll never forget that. With all that he was going through he pulled me in and gave me a space at the table.
Over two days, many hours, and many visitors I hovered nearby waiting to greet a client or colleague and introduce them to Gail’s family. I didn’t want anyone to feel awkward or have to introduce themselves under these circumstances. Finally as the last hour of visitation neared the end Gail’s son-in-law came over to me. He looked at my exhausted face and suddenly said, “I just realized why you have been here for the whole thing and haven’t missed a minute. You’re the only one here who would recognize her clients and colleagues.” I nodded my gratitude to him for his kind words. I knew if I tried to speak I would break down and it wasn’t the time for that.
The funeral service was so well attended it ended up standing room only in the small chapel at the funeral home. I knew one of Gail’s clients who was in a wheelchair was coming and I wanted to make sure she didn’t get stuck at the back where she couldn’t see anything. I waited for her and made sure she was seated in a good spot. At the last second I scooted into a seat behind the family and next to Gail’s best friend.
The service was beautiful. Her children spoke and somehow her younger daughter managed to sing. I have absolutely no idea how she handled that. I held my shit together until it was time to leave the chapel. The family left from the front row first, then it was our turn. The dam broke again. I tried to get up to leave and my knees buckled under me. I sobbed uncontrollably, completely incapable of getting to my feet. I had been holding myself together with an iron fist in order to do what I had to do and my tank was empty. Gail’s best friend squeezed my shoulder as she went by.
By the time I was able to stand up everyone had left and moved to the reception room. I Bambi-legged my way down the hall and collapsed on the nearest couch. A dear colleague came and put her arm around me. She said with her tongue-in-cheek British humour, “Well you held it together pretty well there kiddo, but you blew it at the end,” and we laughed through our tears.
I didn’t really have time for the dust to settle on the funeral before I had to push forward. Our year of overhead insurance was up and I was now footing all the bills myself until I could move the business. I definitely did not have the luxury of time.
The next few months passed in a complete blur, but somehow I managed to find the perfect spot, negotiate a lease, find a contractor, hire an architect (plans have to be drawn up by an architect to get a building permit), design a floor plan, and coordinate the selling off some of the equipment and furniture that wouldn’t fit in the new space. I tweaked floor plans, picked door handles and paint colours, coordinated getting phone lines and internet, and answered a thousand questions.
I even physically moved everything all by myself with the exception of the big items for which I rented a truck and asked two friends for help. There were stumbling blocks galore and I was grieving but by some miracle I did it. I opened the doors of my new sole proprietorship on June 1st 2016, having only missed a day or two of client care. This date fittingly was Gail’s birthday and the 8th anniversary of our business. I know she was smiling on me that day.
I look back on that time now and I still can’t believe I got through it all pretty much single handedly. I actually have little memory of some periods of time in there. It was all just too overwhelming. It would have helped a lot if I had had someone to talk to who was having a similar experience but mine was so unique that would have been pretty much impossible. Hey, anyone out there just lost their business partner to a glioblastoma and had to run everything on their own and then move? Not likely.
What I did have were very understanding clients, good friends, a partner who held the fort in my physical and emotional absence, and amazing colleagues who stepped in to help with no questions asked. Gail’s husband was one of the most remarkable caregivers I have ever seen, and he always kept me in the loop no matter how difficult things were for him. I have a lot of admiration for him.
I miss Gail and think of her often. I can still see her beautiful smile and hear her cheerful voice. She was so very kind and compassionate and she touched so many people’s lives. She handled her situation with a grace that most of us can only dream of. There was never any bitterness or anger, just pure love. I am a better person for having known her and I try every day to carry the love she epitomized forward in the world. If I can manage even a fraction of that then I’ll be happy.
Note: If you would like to support the organization I mentioned in the first paragraph, here is the link to where donations can be made.