Another curveball

I wish my illness was predictable.

I’ve felt good for a few months now. Tired but getting on with life with few side effects. I’ve been working and generally been positive about the future and feeling “normal” again.

This started to take a downward turn about 10 days ago with the fatigue slowly becoming more evident. Like someone slowly turning Fatigue Volume up in a daily basis.

Today I’ve barely been out of bed. I had my blood test done this morning for treatment number 8 on Thursday but then spent most of the day sleeping.

I’ve been worried about this all over the weekend with times when I had no energy and just moving was a monumental effort.

The hospice nurse suggested speaking to my Oncology team and they believe this is just normal side effects and that it does come and go without rhyme or reason. They’ll get the results of my blood tests tomorrow.

I also spoke to my GP who already had the results of my bloods taken this morning and was able to confirm they were all normal so nothing else is going on.

He suggested I may have been a little hasty in my return to work and suggested a slower approach would have been better. I thought I had taken it slow but he mentioned taking months to get back to full time, not weeks.

He’s signed me off work for another week and told me to listen to my body. So that’s what I’ll do. I feel guilty just being so useless, so tired and a drain on everyone around me. I hate letting people down and that’s what I’m doing at work.

But I can’t fight it. I have to let my body recover and deal with the aggressive treatment I’m having. Trying to do too much too quickly is, as I’ve discovered, a recipe for disaster.

I’ve posed my concerns on an online forum of people on immunotherapy and my symptoms are typical. Joint aches are normal. They come and go and if they get too bad I can be put on steroids (more drugs). The oxycodone is also very potent and can cause issues on its own. The fatigue can go from non existent to full on bed-ridden overnight with no warning.

I guess I’m slightly relieved it’s nothing new and others are in the same boat with the same symptoms but I’m also a little despondent that I thought I’d got away with bad side effects and finding out they can come back at any time and be worse or better without warning is tough to take.