WFH with Cancer — Week 4
Round 1 of 4 was coming to and end, and the past 4 weeks had flown by. I was into the routine now of Thursday morning early starts, Luas into the hospital, bloods, BP/Temp/Weight/Pulse taken, and then a wait to see the doctor or nurse, finishing with the injection.
I met with the doctor today over concerns for the rash, and it was decided that the septrin was to be stopped. There was a lower dose version that was a single tablet to be taken daily rather than the Monday/Wednesday/Friday morning and evening tablet I was on, but I was told to get the tablet from the chemist, but not to start taking it for this round yet while they monitored me over the weekend. Septrin, like most drugs, hangs around your system for sometime even after you've stopped taking it, so if I had a bad rash over the weekend I was told to call the hospital, and I might well be admitted to monitor should things get rough.
As this was the end of the 1st round, I was given a new prescription of drugs, with the main difference being that the Allopurinol was being stopped too as It was only needed at the start of treatment. I was still looking at 4 daily tablets, and 20 additional on the Thursday.
Also, my 1st round of Revlimid was coming to an end. I had a 21 day prescription with a 7 days break before starting again, so the night before my hospital visit I finished taking that.
The good news from the day was my Paraprotein level had dropped from 23 on day 1, down to 16 today. That was a huge change and showed that the treatment was working. This was the positivity I needed. While we talked about not focusing on the numbers, we needed this bit of insight into what was happening inside.
Today was also only an injection, so once I had that it was off home (via the chemist) and then to relax for the afternoon. Now, my Thursday afternoons are back to back conference calls, and I was tired today, so I logged onto them and lay on the bed listening in to the calls. While I mention this to you all, I know your probably going, well you said before to have a proper work place and don't work from bed, but look, I have cancer….. Yes I am pulling the cancer card
Thursday evening I got a new side effect. My right ankle swelled up. I ended up raising it on the end of the sofa for an hour and it went down, but it ended up being a once off, so would just need to keep and eye on that one.
Friday morning, I could not get out of bed. I was really tired for some reason. Usually on a Friday I still have the steroid going though me so I get up early (6am or latest 7am), but at 9am I was still in bed. The rash was also back on my stomach and by Sunday I had a headache and needed paracetamol.
The rash never really developed into much more than just a bit of redness on the stomach and the back, so it was looking like Septrin was at fault here, but on Wednesday I noticed that my upper leg muscles on my right leg were starting to hurt. They were stiff and sore, and while I was doing some walking, they just felt like I had bashed them against something.
So that was how the 28 days finished, the end of Round 1 was upon us. I had completed the full course of medication, and had a new set of medication starting the next morning, and was a quarter of the way though my treatment plan. The past 4 weeks had actually flown past really quickly.
So, observations from the past 4 weeks was all based on me, and the Garmin smart watch I wear constantly, and the oddities that were noticed. For example, my heart rate increased over the past few weeks. Since starting the steroid there was a definite increase in my daily heart rate. My weight was also going up and down for no apparent reason, yet my diet had not changed much over the 4 weeks. Water retention was a definite issue. But drinking a lot of fluids over the course of a day would do that to you. My mood changed quickly too. I would be hyper and happy one day, irritable the next. Tiredness was a huge factor, restlessness too. Concentration was difficult at times, but I learnt that when I started to loose my concentration I needed to get some rest. But what really got to me was exercise. From going from running 5km 3 days a week, and walking daily, to struggling to walk really hit hard. We all need to get out into the air, exercise, spend time with the outdoors, but being so weak that its a struggle to even do that does things to a person. I know its going to get harder over time, and that I will have to watch my interactions over the next few months, but for someone who loved getting out for walks and runs, its mentally challenging when your body just does not want to do what your mind does.
From a work perspective, productivity has not changed. My responsibilities have altered however to focus on me, then work. My boss is behind me on that one. We need to focus on ourselves, for without us the job just wont get done. Again, I don't know how long that will last, but for the moment, its a strategy that is working for me, and I am not going to change that. We are moving towards the return to school, and discussions on returning to offices too, but as a remote worker, more than any other time, I need to embrace the working from home lifestyle more and more. I will not return to the office this side of next summer, as it would be too dangerous for me as my immune system gets weaker and weaker. My work know, and are accommodating of this. They have gone though this before for others no doubt, and support every aspect of it. Without the support of family, friends, and work, this would be a lot harder a conversation to have. For those that are living with what I am going though and don't have the ability to work from home, I applaud you for continuing to work and hope that your employers are being supportive and understanding when you need them to be.
