My battle from stroke to cancer
February 07, 2018
By Bob Carey-Grieve
I don’t know why I woke up, but I jolted awake as if after a nightmare. It was about 5am on November 24, 2016. My right arm felt heavy and I assumed I’d been sleeping on it. I tried to wake it up but it continued to feel heavy and just flopped around all over the place. I was feeling a bit distressed so I thought I’d get out of bed, but when I tried I fell flat on my face. My right leg was as useless as my arm.
I got up and then fell over again. Despite this, and perhaps a bit oddly, I thought I’d still head into work. I managed to limp to the shower but when I was trying to get dressed, I realised I was still experiencing issues with my right arm and leg. I called out to Bec, my wife, who said I didn’t look right and I should take the day off work.
I ended up staying home and made a GP appointment for 4pm that day. In the lead up, my right leg was still not right and I didn’t think I could drive. I sent a text message to Bec asking for a lift and that’s when she became alarmed – my text message was complete garbage. It didn’t make any sense. I remember having trouble spelling even simple four-letter words as I was writing it, which I found very frustrating. I just couldn’t find the letters. I could sound out the words, but I just couldn’t arrange the letters in the right order.
We saw the GP who said I should go to the hospital emergency department. As my wife drove to the hospital, I phoned the kindergarten to let them know that our friend Fiona would be picking up our youngest son, Huey, that afternoon. When the teacher asked me to spell Fiona’s name, I just couldn’t do it. I tried every combination of the letters but it was exasperating. That’s when I started to get frightened.
I stayed in hospital that night, but there was a delay in having a CT (computerised tomography) scan as the doctor had filled in the CT request form but gone home without signing it. I was sat in a wheelchair and left all alone in a deserted corridor for a couple of hours. It was freezing, my gown hadn’t even been tied at the back. I’d never felt so abandoned, so alone and scared. Eventually I had the scan and was taken to the Acute Stroke Unit for the night, but it wasn’t until the next morning I was told, quite casually, that I had suffered a stroke.
The sensation in my arm and leg had returned by about midday. At that point, I was told if I could swallow a glass of water, I was good to go home. Some student doctors were brought round to see me. They practised asking me to drink and I practiced swallowing for each of them. I passed the test, over and over again, until they ran out of baby doctors and let me go. I wasn’t in the hospital for even 24 hours. I was discharged so quickly they forgot to take the cannula (tube to administer medication) out my arm.
I have to say, I found this rush quite difficult. There was no support. A pat on the back and off you go. We often talk about that and think that if my stroke had been more severe, I might have been given more information or support afterwards. I shouldn’t complain. I am incredibly lucky that my stroke was a milder one, but still, no-one could tell me why I’d had a stroke at 42 years of age without having any major health issues in the past. The doctors told me they can’t explain about 60 percent of strokes in younger people. Cross your fingers and hope not to die.
This left me in a in a constant state of anxiety after my stroke. I didn’t know what to do or how to avoid having another stroke. Any tic I felt on my face, head or neck worried me. I was squeezing my hands a lot to see if they felt like my arm had felt that day. If you don’t know what you’re looking out for, everything becomes potential stroke – pins and needles, a patch of dry skin, a blocked sinus, goosebumps. For a while, even some sensations of touch felt alien. The leg of sunglasses on my ear, the washing instructions label on a t-shirt. I’m an Artist by trade, but a fertile imagination becomes a curse in these circumstances. It took a while before I began to master these feelings and relax into my body.
Physically, I’ve been OK since the stroke, but I was greatly affected emotionally. After having a stroke you are more at risk of having another one. This was hard to live with. I’m pretty sure my emotional centres were scrambled too. For a couple of weeks, I would cry for no reason and wouldn’t be able to stop. I didn’t sleep well for months afterwards. I was incredibly stressed and this meant that others around me were stressed too.
The first time I saw my boys, Casper (now 10) and Huey (now 6), after the stroke, I burst into tears. We haven’t told Huey too much about why Dad has to see so many doctors, but Casper understands more. He’s been a tower of strength, despite his fears about his dad getting sick again. Sometimes he just gives me hug out of the blue, and it’s the best medicine.
I’ve never focused on fitness or done any team sports, but I took up running during my recovery. I thought it would help to focus on my health and I was soon able to run five kilometres on a regular basis. I set up a home gym in my garage and I work out for 40 minutes every morning. While it wasn’t an aim, I have lost 15 kilos in the last year. This has helped me feel a lot better and given me an outlet to work out my anxiety.
I have also made it a priority to try to find out why I had a stroke. After I was discharged, I had every type of scan, probe and test imaginable. My arms are like pin cushions. But, frustratingly, after six months there were still no answers. The doctors suggested I might want to speak to a cardiologist as well. They didn’t hold out much hope I would get any answers, but it would close another avenue of enquiry.
The cardiologist immediately told me that a long-haul flight I’d taken five weeks prior to the stroke caused a Deep Vein Thrombosis and the clot passed through a four millimetre hole in my heart. The clot travelled to my brain, split in two and I suffered two strokes at the same time. The Cardio said the hole in my heart was big enough to warrant it being closed, so I had surgery two months later.
Following surgery, I was prescribed strong blood thinners for three months. The type of thinner I was on can lead to some issues if an internal bleed is experienced. Unfortunately, towards the end of the three months, that’s exactly what happened. I had an internal bleed in my colon which was misdiagnosed as haemorrhoids, but after I blacked out at home and was taken to the hospital by ambulance, I was given a massive transfusion – three bags of blood and two bags of plasma. The doctors told me I was officially the sickest person in the hospital – not an accolade anyone really wants!
I was kept in for four days so I could be stabilised and have my blood pressure return to normal. I was told to have a colonoscopy to try to find out the reason for the bleed. This is when I received more big news. Unfortunately, the doctors found a tumour. It’s been suggested that the tumour was making my blood extra clotty, and contributed to the stroke. If that’s true, then we’ve come full circle. The cancer was the root of the stroke, the long haul flight had exacerbated it, and the hole in my heart facilitated it.
In January 2018, just a year after my stroke, I had keyhole surgery to remove about 20 centimetres of my bowel. It was a fair chunk, but I made a quick recovery and was back home in four days.
But it wasn’t over. After more tests, the doctors found I had cancer in one of my lymph nodes. I now have two months of chemotherapy ahead of me.
This has been a huge shock for all of us. At each point, you hope it is all done with and that this chapter of my life is finally closed. But now I have a new challenge. In the last 15 months, I’ve gone from perfect health to practically needing a hospital loyalty card! I just have to keep moving forward, I don’t have a choice. Take a deep breath, settle yourself and step onto the plate. Breathe.
Okay, I’m ready.
I don’t know why I woke up, but I jolted awake as if after a nightmare. It was about 5am on November 24, 2016. My right arm felt heavy and I assumed I’d been sleeping on it. I tried to wake it up but it continued to feel heavy and just flopped around all over the place. I was feeling a bit distressed so I thought I’d get out of bed, but when I tried I fell flat on my face. My right leg was as useless as my arm.
I got up and then fell over again. Despite this, and perhaps a bit oddly, I thought I’d still head into work. I managed to limp to the shower but when I was trying to get dressed, I realised I was still experiencing issues with my right arm and leg. I called out to Bec, my wife, who said I didn’t look right and I should take the day off work.
I ended up staying home and made a GP appointment for 4pm that day. In the lead up, my right leg was still not right and I didn’t think I could drive. I sent a text message to Bec asking for a lift and that’s when she became alarmed – my text message was complete garbage. It didn’t make any sense. I remember having trouble spelling even simple four-letter words as I was writing it, which I found very frustrating. I just couldn’t find the letters. I could sound out the words, but I just couldn’t arrange the letters in the right order.
We saw the GP who said I should go to the hospital emergency department. As my wife drove to the hospital, I phoned the kindergarten to let them know that our friend Fiona would be picking up our youngest son, Huey, that afternoon. When the teacher asked me to spell Fiona’s name, I just couldn’t do it. I tried every combination of the letters but it was exasperating. That’s when I started to get frightened.
I stayed in hospital that night, but there was a delay in having a CT (computerised tomography) scan as the doctor had filled in the CT request form but gone home without signing it. I was sat in a wheelchair and left all alone in a deserted corridor for a couple of hours. It was freezing, my gown hadn’t even been tied at the back. I’d never felt so abandoned, so alone and scared. Eventually I had the scan and was taken to the Acute Stroke Unit for the night, but it wasn’t until the next morning I was told, quite casually, that I had suffered a stroke.
The sensation in my arm and leg had returned by about midday. At that point, I was told if I could swallow a glass of water, I was good to go home. Some student doctors were brought round to see me. They practised asking me to drink and I practiced swallowing for each of them. I passed the test, over and over again, until they ran out of baby doctors and let me go. I wasn’t in the hospital for even 24 hours. I was discharged so quickly they forgot to take the cannula (tube to administer medication) out my arm.
I have to say, I found this rush quite difficult. There was no support. A pat on the back and off you go. We often talk about that and think that if my stroke had been more severe, I might have been given more information or support afterwards. I shouldn’t complain. I am incredibly lucky that my stroke was a milder one, but still, no-one could tell me why I’d had a stroke at 42 years of age without having any major health issues in the past. The doctors told me they can’t explain about 60 percent of strokes in younger people. Cross your fingers and hope not to die.
This left me in a in a constant state of anxiety after my stroke. I didn’t know what to do or how to avoid having another stroke. Any tic I felt on my face, head or neck worried me. I was squeezing my hands a lot to see if they felt like my arm had felt that day. If you don’t know what you’re looking out for, everything becomes potential stroke – pins and needles, a patch of dry skin, a blocked sinus, goosebumps. For a while, even some sensations of touch felt alien. The leg of sunglasses on my ear, the washing instructions label on a t-shirt. I’m an Artist by trade, but a fertile imagination becomes a curse in these circumstances. It took a while before I began to master these feelings and relax into my body.
Physically, I’ve been OK since the stroke, but I was greatly affected emotionally. After having a stroke you are more at risk of having another one. This was hard to live with. I’m pretty sure my emotional centres were scrambled too. For a couple of weeks, I would cry for no reason and wouldn’t be able to stop. I didn’t sleep well for months afterwards. I was incredibly stressed and this meant that others around me were stressed too.
The first time I saw my boys, Casper (now 10) and Huey (now 6), after the stroke, I burst into tears. We haven’t told Huey too much about why Dad has to see so many doctors, but Casper understands more. He’s been a tower of strength, despite his fears about his dad getting sick again. Sometimes he just gives me hug out of the blue, and it’s the best medicine.
I’ve never focused on fitness or done any team sports, but I took up running during my recovery. I thought it would help to focus on my health and I was soon able to run five kilometres on a regular basis. I set up a home gym in my garage and I work out for 40 minutes every morning. While it wasn’t an aim, I have lost 15 kilos in the last year. This has helped me feel a lot better and given me an outlet to work out my anxiety.
I have also made it a priority to try to find out why I had a stroke. After I was discharged, I had every type of scan, probe and test imaginable. My arms are like pin cushions. But, frustratingly, after six months there were still no answers. The doctors suggested I might want to speak to a cardiologist as well. They didn’t hold out much hope I would get any answers, but it would close another avenue of enquiry.
The cardiologist immediately told me that a long-haul flight I’d taken five weeks prior to the stroke caused a Deep Vein Thrombosis and the clot passed through a four millimetre hole in my heart. The clot travelled to my brain, split in two and I suffered two strokes at the same time. The Cardio said the hole in my heart was big enough to warrant it being closed, so I had surgery two months later.
Following surgery, I was prescribed strong blood thinners for three months. The type of thinner I was on can lead to some issues if an internal bleed is experienced. Unfortunately, towards the end of the three months, that’s exactly what happened. I had an internal bleed in my colon which was misdiagnosed as haemorrhoids, but after I blacked out at home and was taken to the hospital by ambulance, I was given a massive transfusion – three bags of blood and two bags of plasma. The doctors told me I was officially the sickest person in the hospital – not an accolade anyone really wants!
I was kept in for four days so I could be stabilised and have my blood pressure return to normal. I was told to have a colonoscopy to try to find out the reason for the bleed. This is when I received more big news. Unfortunately, the doctors found a tumour. It’s been suggested that the tumour was making my blood extra clotty, and contributed to the stroke. If that’s true, then we’ve come full circle. The cancer was the root of the stroke, the long haul flight had exacerbated it, and the hole in my heart facilitated it.
In January 2018, just a year after my stroke, I had keyhole surgery to remove about 20 centimetres of my bowel. It was a fair chunk, but I made a quick recovery and was back home in four days.
But it wasn’t over. After more tests, the doctors found I had cancer in one of my lymph nodes. I now have two months of chemotherapy ahead of me.
This has been a huge shock for all of us. At each point, you hope it is all done with and that this chapter of my life is finally closed. But now I have a new challenge. In the last 15 months, I’ve gone from perfect health to practically needing a hospital loyalty card! I just have to keep moving forward, I don’t have a choice. Take a deep breath, settle yourself and step onto the plate. Breathe.
Okay, I’m ready.