How would it feel to be unwell all of the time? Not something I had considered even though I care for unwell people all of the time. I felt that I was in good health until my recent bout of COVID. I am not used to feeling unwell and I have not liked it. Recovering from COVID I have felt exhausted and it has made a small voice inside me ask if I will recover or not? Will I feel better again? Can I go back to how I was before? Can I still do as much as I used to? Will I ever feel like myself again? My intellect knows I will recover soon. My emotions have not been so sure.
What would it feel like to have an incurable illness? To suffer from a condition that will not go away. Something you will be stuck with for the rest of your life. You will feel more and more unwell as time continues to flow on. How would it feel to be in such a situation? It will not go away, it will be something that becomes part of your life for the rest of your life. There is no escape from this situation for you. This is how you will be for the rest of your life.
No fix is possible, no change in the situation you are in. You are stuck in the prison of your own body. Things will never be the same again. You may not be able to do whatever you did in the past. How will this be for your mind? How can you handle this emotionally? What can you do to cope with this? How can you continue with your life? Nothing will ever be the same again. How can we do this? To be in such a vulnerable position will be a true test of resilience. A shock to the system. Let’s see what happens.
My little coronavirus rock band continue their tour of my body. They wrapped up their sold-out concert in my throat and the music was so loud my ears are still stinging. Today’s destination was my lumbar spine and they played their achy breaky music with gusto. No matter how often I stretched throughout the day the music of the band drowned out all other signals.
I have to be honest I am sick of all the merchandise the band brings along to each venue they play at. The congested stands of my nasal sinuses couldn’t stand the pressure any longer. The burning man set up in my throat yesterday is still smouldering and ready to reignite at a moment’s notice. The worn-out muscle fibres evidence that this band of players have worn out their welcome.
The uncertainty of each day of illness. Will I feel better when I wake up again? Will I be in less pain than yesterday? These are questions I am considering each day and are they similar to what my patients must ask themselves? I’ve only been unwell for a few days but my compassion for those who suffer from chronic illnesses is growing.
Maybe tomorrow the band will head down to my feet and then it will be my pleasure to kick them out of my body. There will be no request for an encore.
New day, new symptoms. The whole body aches and pains subsided today which was a relief. Just as I was lulled into a sense of lessening unwellness, something else arrived to knock that idea out. A sore throat the likes of which I had not experienced since I had my tonsils taken out as an adult came to say hello. I would describe it as swallowing rusty liquid razor wire. It was such a lovely greeting that with each swallow I was overwhelmed with emotions and tears came to my eyes. I threw all the medications I had at it, and then some, but nothing worked apart from lying down in the foetal position, but that didn’t bring any relief. Or was I lying down in the recovery position? Probably not as I do not feel recovered as of yet.
I was hungry and had to eat through each painful mouthful. The dry crusty parts of the bread were like sandpaper on my disease-ravaged throat. I winced and grimaced through each gulp of food. My appetite had returned but had to contend with the pain barrier. I persisted and after a few minutes, the pain started to abate. If the drugs don’t work make your own. As a response to the pain, my body produced endogenous opioids, bringing relief to my agonised throat. The second half of the meal was swallowed with relative ease.
Both of my Latissimus dorsi, those big wing-like muscles on the sides of our backs, were aching today as if I’d had a huge workout yesterday, which I hadn’t. My pectorals on the opposite side of the lats also felt similar. I had not done any heavy lifting at all but had done some coughing yesterday. Curious symptoms continue to be collected. What will happen tomorrow?
One of the cruellest consequences of COVID lockdowns was the restriction that we had to place on visitor numbers. We were generous in that we would allow each of our patients up to four named visitors, but this still fell short when it came to families with more than four members. We acted with humanity and compassion, thinking to ourselves how would we feel if it was us in their situation? But what do you do when someone has 15 children? It is difficult for a family to choose who gets to come in, and who has to stay out. Video chat technology allowed for virtual visits but they were no replacement for in-person visits.
Our patient was a man in his 50s who had six children, the two eldest lived out of town. The four younger children were keen to spend time with their Dad, and their Mum struggled to choose who would be the nominated ones for any given day. The family had always been close and the parents had home-schooled their children. They had always done things in their way. Having Dad critically unwell and away from home added to the overall disruption of their family life. Our team’s opinion was that our patient only had limited time left to live. Given the circumstances, we flexed our approach and allowed the four younger children to visit alongside their mother.
I went to medical school in the previous millennium. Back in the days when the standard dress code was to wear a shirt and tie. To tell the truth, it didn’t matter too much what you wore as it all had to be hidden underneath the doctor’s white coat that we would wear. I probably would’ve gotten away with wearing just a collar and tie underneath my white coat. I would’ve needed to have appropriate pant legs and footwear but probably could’ve gotten away with wearing pyjamas underneath the coat. Of course, this never happened as I was as sheep-like as everyone else and conformed to the standard dress code.
Once I graduated I became braver in terms of dress sense and I started wearing cartoon ties and otherwise quirky ties. I built my collection during my travels. I bought ties in places like Taiwan, Thailand and Kaitaia. Halfway through my first year of work, I went on a clowning trip in China led by Dr Patch Adams. This was followed by a reunion with my childhood friends in South Korea. On my return, I came to a decision. I decided to retire. All of my standard ties. I would only wear my cartoon ones from thence on. Over the next 21 years, I continued to wear Disney characters, Looney Tunes, Superman, Popeye, Fish, and many more.
I had been on call for the hospital when the little old Chinese man had first presented to hospital. They had discussed his situation, a large stomach cancer which kept on bleeding, and that his Hb level was only 41. My opinion was that he was dying from recurrent bleeding that could not be stopped. My advice was that the hospital team have a discussion with the patient and family about the fact that his bleeding would be a life-ending event, that further transfusions would not be able to keep up with the amount of bleeding that was happening.
Some of my advice was taken, but not everything. It was as if the hospital doctors had spoken to me in a second language, one that didn’t lead to mutual understanding. They did end up having a conversation with the patient and his daughter about no further transfusions, but this was after transfusing one more unit of blood. The hospital doctor could speak Mandarin with the patient and family. He told them that the last unit of blood was an, “especially strong unit of blood, and would give him an extra boost.” Following this final transfusion the patient was sent across to the hospice.
I gently knocked on the door and then poked my head around the corner. I paused briefly before walking in and saw him sitting there holding his wife’s hand. He bent down and talked gently into her ear. They had only been married for 62 years, and had been together as a couple much longer. She had looked after him well according to his daughter, he had always been treated like a king. In recent years Dementia had meant that he had needed more care than ever. His queen kept him in line but as her health deteriorated she could not keep up with him.
She had lived with her daughter, son-in-law and had practically raised their children. The grandchildren were emotionally close to her and had spent six to eight weeks with her over the Christmas break before heading back to their overseas-based lives. Since her cancer diagnosis seven months ago, she had been cared for by her youngest daughter. She had to keep a close eye on her husband, as he was a flight risk. At times he didn’t even recognise her as she had recently lost a lot of weight. He would ask, “Who is the nice old lady?” With a few prompts he could be reorientated to the love of his life.
He was never alone when he was young, his sister would always be with him. They started off their friendship in the womb but didn’t really see each other for the first time until they came out into the light. Ah, that’s what you look like, quite similar to me, but different. I’m the oldest out of us two, even if it is only five minutes between us. The eldest is entitled to greater respect. Their siblings suddenly had two more siblings to make up the family, a little boy and a little girl.
They went to the same schools all the way through primary, intermediate and high schools, and it was only in university that their paths diverged. Ending up in different careers and then meeting their partners, always maintaining the bond of their twin-ship even across thousands of miles of ocean. The next generation would also have multiple births, he and his wife had a set of twins but unfortunately their little youngest did not survive. One of their biggest tragedies, the death of a child, so against the natural order of life. Life had to move on, they had the rest of their children to bring up. Life was busy with work, family was always emphasised as being the most important.
Children grow up so fast, and theirs became useful additions to society, good people that he had guided to adulthood. He was proud of them all, and then the grandchildren arrived to make a good life even better. Lovely young kids that enjoyed hanging out with Grandpa and Grandma, also lovely that at the end of the day they could be given back to their parents. Grandparents are there to provide good fun, but not to be the unpaid caregivers was their policy. It had worked so far. Their overseas daughter video-called them, they hadn’t seen her in person due to the effects of Covid over the past two years. She couldn’t contain her smile, she glowed when they talked to her. “Mum, dad I’m pregnant, it’s going to be twins!” Continuing the family tradition into the next generation. Things were really good.
Covid 19 the gift that keeps on giving. Why does it have to be so generous? It has affected everyone and everything in the world, and the hospice is no different. We have had to impose visiting restrictions on our patients and their families in order to limit spread of the virus. Covid restrictions and quarantine requirements have led to some of the most upsetting situations that I have witnessed during my career.
When someone is dying, it is natural to want to be with them, to support them in their moment of need. They were there for you when you needed them the most, and you want to reciprocate if you can. Even before Covid it could be difficult to travel back home thousands of miles, trying your best to make it before your loved one dies. During Covid it has been that much worse.
My patient came in because of severe pain, a common reason for admission for many of my patients. His wife accompanied him, and they both looked exhausted. His pain had been poorly controlled over the weekend, and the nights had been especially long. The medications did not seem to work for long, they gave him a brief period of respite before the pain would come right back. It was almost cruel to be granted that small packet of relief, and then it would be roughly dragged out of his grasp again. This cycle repeated itself over what felt like a long two days. By Monday they needed help and he was admitted into hospice.