My fight for survival following a brain stem stroke

15.02.11

I remember waking up at Norwich airport. It was around 8 pm, and I was lying on a stretcher being transferred to an ambulance. It was cold, dark and drizzly.

The following six days were spent in the ICU; as I had flown in from a foreign country, I was placed in isolation. My first memory was seeing my daughter Lila and my nephew David, a Roman Catholic Priest. He assured me he was not there in an official capacity. he is well known for his sense of humour. I do love him. Both had tears in their eyes. What I didn’t know till later was that Lila fainted upon seeing me. Bless her.

On another day, I opened my eyes to see my sisters, Susan and Margaret, standing at the foot of the bed. I tried ever so hard to tell them that I was OK, but only my eyelids would move. At that time, I firmly believed that people could understand what I was saying through my eyes. I would point with them, not realising they were not moving. I was very frustrated that people couldn't understand me. I now wonder what they must have felt.

I was still critical so I was kept sedated and had 24x7 one to one care for a few days, it was here that I was introduced to ice lollies, basically it was one of those sponge mouth wipes with an ice cube rammed on the end I had two primary nurses Steve and Margret caring for me they were perfect very gentle and looked after my every need including a regular bathe of ice around my lips it was heaven the strange thing about my condition was that I didn’t feel ill it must have been the drugs that I was on.

Once stabilised, I was transferred to the Acute Stroke Ward ‘Gunthorpe’ where I spent a further five months recovering in a side room on my own. This was good as I realised that to be placed in the central ward, there would be little rest.

As I was recovering medically, I had to endure further setbacks, such as the Norovirus and pneumonia at the same time. Again, whether I would make it was touch and go; I was unaware how serious it was.  What I do remember was that poor young Steve an HCA had to clean me quite regular and made no complaint when I was recovering from the virus we did have a laugh about it especially about the time I pooed on his hands as he cleaned me not nice I know but his attitude got me through some very embarrassing moments.

I  had to cope with the many indignities like bed baths, having my bum cleaned, wetting or pooing in bed, been hoisted in and out of bed where your nether ends are exposed gladly not to the world you name it I had to deal with it and the pain Oh the pain because of my paralysis I couldn’t keep my head and body from rolling to one side so if the pillows were not supporting me my head would drop to one side; the neck pain was horrendous at first I was unable to communicate this I couldn’t even press the bed alarm so I had to wait until a nurse to came in to check me. My family would straighten me up each evening, ready to settle me down for the night, but as I was not allowed to lie flat because of being fed via a tube up my nose, I would wake up with my head or body to one side and in pain.   My ankles and knee joints caused great pain as well. At one point, my right knee was aspirated, plus my body from head to toe was swollen.

One of the most distressing moments was the day Sarah and her children left for Australia. Sarah lay her head on the bed, took my hand, and placed it on her head. It was such an intimate moment, a moment that I will never forget. Then, to see my grandchildren looking in from outside and waving goodbye because of the Norovirus, they were not allowed in. I was heartbroken.

My faith played a vital part too, I spent many days, hours, minutes just lying there looking at the ceiling but I felt at peace most of the time as I could feel the presence of God beside me there were times that I felt so close I could feel his robes around me I then became aware that a miracle had happened when I had first had my stroke I always say that I beat the devil, the miracles didn’t stop there;  when I was told that I had a swelling in my throat (A camera was stuck up my nose and into my throat I can still hear the crackling sound as it went passed the base of my brain) which is a common feature  with a stroke and that I need to be prepared mentally to having the tracky in for the rest of my life meaning I won’t be able to swallow again and be fed by the tube that was put directly in my stomach (PEG) I thought “NO THIS WILL NOT HAPPEN” for the next eight weeks I prayed every waking minute along with my family and friends and the rest of the world  that God would take the swelling  away God showed us again the might of his power. The next time the medical staff stuck that camera up my nose, they were astonished that the swelling had gone. I wasn’t, as I knew that God would sort it out, and he did. I was then weaned off my tracky which took 8 weeks of letting the tracky cuff down and fitting a Passy-Muir speaking valve for some time each day starting with 5 minutes then onto 24 hrs this was very difficult at first as when the cuff was let down I would cough and splutter with the gunge going down my wind pipe. Still, I soon learned how to control it and not panic. Finally, after almost 5 months, I could talk. At first, it was one word, one breath, but as I grew stronger, my sentences became longer. However, I still have moments when I struggle to talk, especially when I am tired, and my voice becomes slurred.

There were times though when I felt l low, for instance, I would have dreams of me walking the hills or fishing or just carrying out normal daily activities then I would wake up I have to admit I did have fleeting moments where I wanted to give up and hoped that I wouldn’t wake up in the morning, but I did. I had several mood tests during my stay, and I am thankful that all I was suffering from was low moods, not depression, so I was given happy pills, which I am still on.

Many more setbacks slowed down my recovery, where God made his presence known in a very intimate way.

Physio was an essential part of my recovery the physio terrorists I nicknamed them, they would come and bend my arms and legs which hurt to but I kept thinking ‘no pain no gain, however everything was not rosy the physio sessions seemed to get less frequent I would observe the physio team walking other patients around the ward and I started to feel neglected especially when Dr Mclashing (Rehab consultant) observed my foot drop due to the shortening of my calf muscles,  Jeannie my wife made a complaint about the lack of physio, this for me was a very uncomfortable time as I thought the staff would take it out of me for complaining. A couple of days later, I was fitted with a splint. It looked like a ski boot without the boot part, just a frame, and my feet were forced into them to try and stretch the muscles. It didn’t work; they just caused sores across the top of both feet, so they encased both legs in plaster casts, and for weeks, I would lie in bed with these ruddy great casts, which didn’t work either, apart from making me sore.

One day, I was taken to the gym and sat on the side of the bed, where I had to be supported as I couldn’t sit on my own. I was told that they would try to stand me up. The only experience I had of standing up was on the tilt table,  a stand aid machine was placed it front of me and a belt was placed around my bum, after been instructed to pull on the handles when I could feel the belt pulling me up the machine was turned on I felt excruciating pain in the shoulders so they lowered me back onto the bed, I couldn’t stop crying as I thought that I would never walk again the staff didn’t help either I manage to ask the with the aid of my communication board “will I walk again” they didn’t answer.

Then there were the hiccups; this is often a result of a stroke. Again, I was warned that I may always suffer with them and given more medication. Sometimes, the hiccups would last all day and night. When that happened, my mood would hit rock bottom. One day, our good friends Angie and Theo visited me when the hiccups started, and my mood went downhill fast. Angie asked if they could pray for me I was feeling quite depressed and remember thinking “Pray won’t work it’s a load of rubbish” but I said yes and they did; nothing happened the hiccups carried on all night in the morning I was feeling right pissed off I even refused to be hoisted into my chair all I wanted was sleep. The PEG (A feeding tube directly into my stomach ) alarm went off, warning me that the food bag had run out, so I pressed my specially adapted alarm and informed the nurses. There was a bit of confusion then as my normal food stock had run out (I used to call it my banana milk shake) so they tried something else; guess what, the hiccups stopped and it never came back once again God showed me he was in charge and stepped in to prove that pray is not a “load of rubbish” from then on I stayed on the new food. PRAISE GOD.

Controlling one's emotions was very difficult in the early days and still is; a stroke plays havoc with the emotional sensors of the brain. One minute everything is OK, and then for no reason at all, one would be in floods of tears. There were times when Jeannie would visit me after having a bad day emotionally herself she would break down in front of me, pre stroke I would hug and comfort her, because of my spasticity I couldn’t what made it worse I also would break down too and become a quivering wreck unable to pull myself together; it was quite pathetic knowing I should be there for Jeannie but couldn’t she would be the one apologising for upsetting me this happened several times. I used to get weekly visits from the rehab team, they were assessing me for transfer to rehab, but because of my tracky, they couldn’t offer me a bed until it was removed. This went on for months; all I wanted to do was go home. However, deep down, I knew it would be impossible as I still couldn’t move or talk. Lois, the stroke nurse from rehab, was very good and honest about rehab and that it could last for months, and it could be after Christmas before I could get home; my heart sank at this news. It all depended on how I recovered personally. Again, each week, I would become an emotional wreck, unable to control what was happening to me.

After five months of enduring some of the most humiliating and painful procedures, I was deemed ready to be transferred to Caroline House at the Colman Rehab Centre. This was a very emotional occasion, having to say cheerio to staff that I had become very fond of. Still, it started a new and essential part of my recovery.