You know it is not a good day when twang arm is suddenly promoted to being the good arm.
You know it is not a good day when you can see that you are at risk of committing one of the serious sins of a chemo patient – running a temperature.
You know it is not a good day when nearly 10 days after chemo you still feel really rotten and are giving up on ever feeling fit and well again.
Wednesday was not a good day. Wednesday marked the start of the lost days………..
I have to remember that I have managed to get through 5 months of chemo and avoid fever or serious complications. Although there were a couple of occasions when my temperature rose a little, and threatened to approach the 38° trigger for a brief while, it was no more than a flirtation and I had not become febrile. Chemotherapy compromises the immune system so the body has little or no resistance for any infection and it can be extremely dangerous, quickly. Scary stuff!
On Wednesday, the day started fairly innocuously although there was something not quite right even from when I got up. I still felt generally unwell, blaming it on post chemo bleugh, which does tend to last a bit longer each time, and even wobbly and a bit weepy. My temperature had been a little higher than normal the evening before, but well below the trigger. It was still a bit raised in the morning so I knew I should keep an eye on it. As the day progressed, it did too. By lunchtime it was well in the 37s and not really reducing. The difficulty was this kind of half way house – it was not at the level to react rapidly, but it was also not normal.
I had a lie down and willed it to go down. When I checked it later it was stubbornly sticking around 37.8° and not really reducing. I also know that it tends to increase rather than decrease as the day wears on. However, I didn’t want to be a total hypochondriac and phone the Dr with a nearly temperature! So I decided to call the surgery and just share my dilemma – should I keep an eye on it or should I make an appointment? The Dr’s PA took the details and said she would call me back once she had spoken to the Dr. That felt better.
Five minutes later the phone rang – could I come at 3 pm? Yes of course, I could. Although I did not realise until I had put the phone down that it was already after 2.45 pm so I had better get moving quickly (especially when you consider I had been lounging in house clothes and did not want to turn up at the clinic like that!)
When I saw the Dr I explained that I didn’t want to overreact but nor did I want to run any risks. She was very clear. A chemo patient with a bit of a fever is a red flag and has to be dealt with proactively and cautiously. She said that we should start by doing a blood count (oh no – please no needles…..it’s not time yet!) and a chest x ray since my fever was still below 38°. Then she took my temperature and the story quickly changed. Between my phone call and arriving in the clinic my temperature had jumped to 38.6° – clearly febrile and warning bells now clanging loudly. Gently she said to me “We need to get you to Bangkok and to the oncology team there”. I have the excuse of being already wobbly and also frightened of this new and unknown situation – but I am still not proud of my reaction. My face crumpled, petted lower lip trembled, my eyes filled with tears and a strange two year old’s voice come out of my mouth wailing “oh no, please…….”
There were a few things behind my reaction. Partly fear and vulnerability of what was wrong. However, there were some practical and logistical troubles which took greater prominence than they should – I knew we did not have the right papers in our hands for hubby J to enter Thailand so I would in all likelihood be heading alone. Not knowing what was wrong and how serious it was would be difficult for J if he was held back until he could travel. I knew also that if I left that night we could well be away for many weeks (as we move to radiation) and the thought of rushing out of the door with only enough time to stuff a few essentials in a bag and no time to talk with anyone was really difficult. The rational side of course knew that these elements were not important and that rapid treatment was the vital thing, but emotional and rational sides often do not cooperate.
There were no glaringly obvious signs of what might be causing the fever, – yes I had a bit of a scratchy throat (I always did after chemo), mouth was a bit tender and same (same) although I had noticed that I had a little discomfort on inhaling deeply, though not as much as a cough.
The first thing the Dr did was to phone the hospital in Bangkok and our wonderful liaison manager. Can you believe that within 15 minutes Dr W2 (who was not even on duty in the hospital) had been tracked down and was on the line to speak with the Dr here? Even in my pathetic state I was impressed! There was a rapid exchange of information and within a few minutes, the Drs had set out the next step. I had to go straight to the lab and get a CBC – Complete Blood Count. If the neutrophils were below the minimum I was on my way to Bangkok. If they were acceptable the two Drs would agree a diagnostic and treatment path based on the pathology.
I winced and gave my right arm yet again for the blood test, and with some difficulty blood was eventually found and drawn for the count. My veins are becoming increasingly difficult to access because Twang Arm is exempt from blood tests, injections and Blood Pressure checking. Great, except that right arm is now in a state of perma-bruising (like perma frost – it never goes away ) and marking from the regular needle sticking. We waited for the results and J and I guessed what the neutrophils count would be. It had to be between 1.5 and 6.6, so J put his money on a modest 1.8. I held out for a more convincing high count and declared 2.7 as my guess. After a while I was called to the desk where I was requested on the phone. The Lab had phoned the results directly to the Dr and she wanted to speak to me.
Our guesses were way out. My neutrophil count was a surprising 14.76!! Now that seemed like good news on the face of it. However the Dr quickly explained to me. This shows the very clear presence of a bacterial infection. We were to head straight back to the clinic and review the way forward based on this pathology. The sun was already low in the sky and my stomach knotted with the uncertainty of a possible flight to Bangkok and the unknown, within a few hours.
With the pathology report, the two Drs consulted again and after a little discussion and clarification a path was agreed. Good news – start treating right now in Yangon, with follow up X ray and other tests in the morning to try and find out the type of infection. Bad news – intravenous antibiotics where there was seriously limited access to the veins.
The Dr and I both knew that a difficult and unpleasant time was imminent. She had already checked my veins and been highly unimpressed! She had a good look at the arm and tried to work some of the veins into prominence – at least enough for needle access. We did talk about the port, but the difficulty was that she was not familiar with its working and also I remember that the port seems to use a special needle. Neither of us felt it a good idea to risk ruining the port even although the alternative was not so attractive. She also spent a bit of time looking at my legs. Once the arm access is compromised there is no choice but to find other access. As if it is not bad enough having an arm which has lots of marks along the veins, I could end up with marks on my legs too! Wonderful!
The Dr identified a couple of possible entry points and encouraged the veins to come up. She also very thoughtfully prepared a paediatric cannula, keenly aware of how sensitive my poor chemo skin is. She talked me through was happening and we got to that horrible point (literally) when I heard the rip of sterile packing which indicated the needle about to meet my skin. The first vein didn’t work. It had looked fairly promising and had not been used too often, but it was quickly clear that it was not going to cooperate. So starting again, locating the next best one (or the second least worst one?) and having to finally settle on one which would be the last choice. If that didn’t work – eugh – leg time!!! The Dr was reluctant to try this one, as it is in an awkward site (near the elbow) and immobilises the whole arm. Vein beggars can’t be choosers though! A few minutes later, we were at the same point and the needle was again sliding in - oooouuuuuccccccchhhhhhhhh! Gold! It reached the vein and Dr started to prepare for the first antibiotic infusion. (There had been no point in having this ready as we knew access could take a good bit of time).
When she started to infuse the antibiotic, she spoke scary words – there is some resistance………… it seems that the vein had quickly clotted and the point sealed. I started producing saline from my eyes and wondered where I could hide my legs. Not to be beaten, she worked on the vein and flushed the cannula to see if it would clear. Finally it did clear and the antibiotic started to go in. It needs to go in by a “slow push”, and gently the first dose was all despatched into the blood stream.
Given the difficulties in access it was clearly the best thing to leave the cannula in, even though it would be uncomfortable and immobilise the arm. We also knew that we were lucky that the cannula had worked once – the chances of it working for the full 4 doses were pretty slim, especially given that it had closed up so quickly.
Finally, clutching a prescription for the oral antibiotics we were able to leave, with my arm bound, protecting the IV line. I had to return in the morning for the next infusion and we were all hoping and praying for the line to work again.
It had been nearly 4 hours since I had left home that afternoon and so much had changed. And with my right arm being rendered immobile and unusable – Twang Arm suddenly became the good arm! It introduced me to the very interesting activity, which should be an Olympic event (not a triathlon event!) – Twang Arm Tooth Brushing. This combines the challenge of brushing with the left hand with the added factor the arm being Twang! Put it this way, the activity is not complete until all traces of toothpaste have been removed from the face.
And so to bed.
And that was Wednesday, the first of the lost days.