Humanity in Cancer Treatment
This is Mum during a hospital admission for PJP (fungal pneumonia) - a few months into chemotherapy for Hodgkin Lymphoma.
Mum had been experiencing some pain and breathlessness before chemo and told the doctor on the chemo ward when she arrived. The doctor ordered a chest X-ray and gave Mum the ‘all clear’ for chemotherapy that day despite Mum voicing her concerns.
Within a few days, Mum was brought into the emergency department barely able to breathe, feeling like she was suffocating. Her haematologist at the time, was absent during treatment to say the least. He didn't visit, and passed on orders through his registrar. Mum was diagnosed with PJP, a very serious and life-threatening fungal pneumonia and on top of this, her immune system had just been blasted with chemotherapy.
Mum, who had severe asthma as a child, asked the doctors for steroids as it felt similar to an asthma attack. She was gasping, unable to put more than two words together, but was told that the hospital policy required her arterial blood gases (the oxygen level in her blood) to be one number lower than hers currently was, to receive it. ONE NUMBER. Absolute madness. One young doctor had the audacity to say ‘she’s just got herself a little bit worked up’ as he causally strode out of the room, leaving Mum gasping for breath. Mum endured this terrifying ordeal for another 24 hours - feeling like she was going to die, unable to breathe - until she again, gasping for air, begged one of the registrars to take her blood and check again. He did, and this time (as her blood was adequately oxygen-starved to meet hospital protocol) agreed to administer steroids.
Within 3 hours, Mum could breathe and by the end of the day, she was sitting up in bed, able to talk. She was given strong IV antibiotics and very slowly over the following weeks and months got better, however, her lungs were scarred and never fully recovered. A part of her spirit never did either.
Mum would weep whenever she recalled this experience, and it was one of the many reasons she decided to write her book, Life Interrupted. Humanity in cancer treatment. Sadly, so often lacking and yet so crucial. She realised that she could either live or die based on the care she received by her team, and their willingness to respect, listen to and advocate for her when she was too unwell to do so herself.
If the registrar on the chemo ward had listened to Mum that morning, instead of dismissing her concerns based on a chest X-ray, further investigations could have been done to assess her for PJP which is very common in immunocompromised patients and also known to be difficult to see on X-ray in the early stages. At the very least, chemo could have been delayed a week to see which direction her health went, rather than wiping out her immune system.
Secondly - Mum was allowed to suffer and endure this frightening ordeal for much longer than she needed to because hospital policy was given priority over basic common sense and human compassion for someone who knew their own body and knew that steroids would help them. We would have been better off self-discharging and giving Mum the steroids she had in her drawer at home. When going home is a safer place to be than in hospital when you are that ill, there is something seriously wrong.
If one doctor or nurse, (particularly in the cancer world) reads Mum’s story and takes a moment to self-reflect and go to work the next day with a conscious decision to lead with compassion, Mum’s story can at least make a difference for someone else’s journey and that would be everything she could have hoped for.
Mum’s words to those in the medical profession are more powerful than any I can offer:
‘I encourage you, at every registrar rotation, to let your colleagues know that they have the ability to sustain the spirit of those patients whose bodies are broken by cancer. Not via platitudes and condescension, but through honest, respectful listening to what each autonomous being needs in order to feel of value, to feel safe and to determine their own very unique path along-side their care team. You hold the power of great change.’