A Day and a Diagnosis
Can you imagine one typical day for a pre diagnosis oncology patient?
In reality I don’t think such a day exists. From my perspective the only guarantee is that no matter how organised and straightforward the day may appear in the morning unpredictable things will happen!
Monday was especially challenging, beginning at
0:00 am, Geoff wanted to talk to me every few minutes and seemed convinced that he would no longer be dwelling on Earth by sunrise. I was so thankful for the support of our sons and daughters who took turns in the night to help with reassuring ‘Dad’. My FitBit showed that he had less than 2 hours sleep that night. No wonder we began the day feeling tired!
6 AM Obs and Meds: Geoff’s medication schedule had reached the astounding level of 11 different medications administered in 20 doses at various points in the day. Each medication was supposed to help with some symptom or other. Aware that every dose has side effects plus an element of toxicity and realising that no time had been allowed for adjustment to each individual medication, a worthwhile strategy seemed to be to eliminate all non-essential drugs.
The nurse checks blood pressure, heart rate, temperature, blood oxygen levels and sometimes breathing rate and blood glucose. This morning a heart rate over 140, uncomfortably high blood pressure and a raised temperature did not make a good start to the day.Before we know it the doctors have decided to do an ECG (electrocardiogram) to check the heart rate and rhythm.
7:30 AM Shower (assisted)
8 AM Meds: Slow-release pain management; steroids to reduce inflammation due to the cancer particularly in the nervous system; a prophylactic to protect the stomach lining from being destroyed by the steroids and an anti-clotting injection in the abdomen. (“no thank you” to 3 other meds)
One of the nurses encourages Geoff to be more independent with getting in and out of bed and moving around so he sits up at the window for breakfast but opening his eyes is an effort due to the diplopia (double vision). Afterwards he puts his head down until our son comes in to cheer ‘Dad’ up. I am relieved to see signs of peace and contentment.
9:30 AM Routine blood samples are taken to track in case of any changes
10:00 AM Obs - vital signs are still too high.
10:30 AM The oncology professor visits to check on Geoff's condition over the weekend. He is concerned about the double vision symptom caused by cancer in the skull or meningeal lining of the brain. An examination reveals the problem to be muscular. The medical interpretation of the radiographer's report indicates no pressure on the brain stem. Although there are many unknowns, the overall pattern of Geoff’s vital signs suggests he is not in immediate danger.
Geoff’s parents arrive from Sydney. Geoff is overjoyed to see them and the visit really helps to lift his spirits.To comply with renewed application of stringent visitor guidelines, I arrange a wheelchair and we all go for a long walk outside. Although it was cold we very much enjoyed the fresh air and it was a lovely time together.
After returning to our room, I had to leave Geoff in the wheelchair looking out the window for about 10 minutes. When I return he’s unsure of where he is - this intermittent confusion is worrying - another question for the next time we see the doctor. I ask them so many questions that they probably dread seeing Geoff but I figure the best way to support him is to be as informed as possible.
12:45 PM Meds: Paracetamol
1:30 PM Doctor visits - they think dehydration is causing the high heart rate and want to put Geoff on a saline drip. Full bloods are ordered to be sure no infection is involved.
1:45 PM Pathology nurse comes and Geoff has to cope with yet another needle.
2 PM Obs continue to be of concern
2:15 PM To keep life interesting, the wardman finds a new route to the Cancer Centre through what feels like the catacombs of the hospital. They are all so careful to minimise and warn of bumps and jolts. We have definitely gained a new appreciation for the tremendous support workers here.
2:35 PM On time as usual, the radiation nurses take Geoff for his treatment. Sometimes it’s only 10-15 minutes, so I have some time out to update the family and reply to a few messages.
2:50 PM Geoff is returned in his bed and we enjoy some digitally captured memories.
3:40 PM I’m a bit anxious about getting back to the ward before the specialist doctors finish for the day as there may be some news from pathology. Eventually the wardsman comes and we make it back in time!
4 PM Pathology has returned an incomplete diagnosis: the primary is non-small cell lung cancer (NSCLC) - a 'nasty' cancer, evident by the extent of the spread. The oncology professor explains that there are 3 types of this cancer that are treatable with specific targeted drug therapy for each type but there's a possibility that it is a different type in which case Geoff is too sick for chemo. None of the types are curative and a prognosis cannot be given until later in the week when the specific type is known. Of greatest concern is that the symptoms involving the brain may worsen.
4:30 PM Our social worker drops by to check how we are going.
While Geoff is resting, I’m sending a detailed update to the family about the current diagnosis.
5:30 PM Cannula insertion for the IV fluids. It’s rather traumatic because Geoff is not at all keen on needles and a trainee nurse wants to put the cannula in but messes it up. The head nurse does a quick job and the drip is soon working.
6PM Dinner: cutting up food continues to be an effort but feeding himself is fine now.
6:30 PM Obs and paracetamol. Thankfully, Geoff’s heart rate is under 120 so the IV fluids are having a rapid effect!
8 PM Slow release pain medication.
Preparing for the night. A test run of getting to the bathroom and back unassisted with the drip stand in tow. Success!
8:30 PM Geoff goes to sleep so contentedly tonight. No sleeping tablet or anti-anxiety sedative needed.
I’m too tired to write anything for the blog but I'll be disturbed again at
10 PM when the nurse comes for obs and
11 PM when the drip is removed. So I do some research on lung cancer and targeted therapies.
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