This week, I have been having trouble reading myself. On the weekend, I was feeling good. Then Monday and Tuesday, I felt odd – out of sorts and in the end, it was nausea. I didn’t work it out until I threw up; an ‘aha’ moment. Then I took an anti-nausea pill and of course, felt better.
Fatigue plays tricks on the mind as well as body. On Monday and Tuesday, I was so tired that I hardly moved from the couch, particularly with a bleeding nose for most of Tuesday and an almost zero white blood cell count this week. I haven’t really felt like doing anything and having a shower felt like a big task.
To me, fatigue is when I wake up and think is there anything I absolutely have to do today as I feel knackered and can’t quite make myself do things. I have been literally trying to will myself to do tasks. Can I walk to the beach? Not right now but maybe later. Can I drive to the shops? Maybe tomorrow. Okay, I’ll just sit on the couch for now.
I have been getting dates and times mixed up a lot; missing appointments, reading my diary dates incorrectly, getting birthday dates wrong and writing things in on incorrect dates. I am only glad that I am not making these mistakes at work. I hope this sorts itself out soon.
I rang the Oncology Nurse to discuss the bleeding noses and she tweaked my medications. She went through my blood count history and also gave me a reality check: a few days back, I had chills during the night but didn’t have a thermometer handy. I just soldiered on and luckily was able to get to sleep and woke up without an infection. The Nurse told me that I should have a thermometer with me and …to ring a medical professional with any raised temperature. If I had an infection, it could have been life threatening (with almost zero immunity). “it’s only life and death” she said.
Later in the week, I have started to feel that life might be normal again. I have had a bit more energy.
The Post treatment phase
Depression is very common with cancer and post treatments. There is a lot that goes on – shock of diagnosis, thinking life and death, and traumatic operations and treatments. But I don’t feel depressed. I just feel flat and in limbo.
Post-chemo: the next phase
I am struggling a bit with movement into the next phase: recovery. I am not ill but I am not well. I am stuck basically in convalescence.
There is a nagging feeling in my mind that I need to be productive and ‘when will I be going back to work anyway?’ In reality, I have just got to see how I feel week by week. Especially when physically, I try to ‘do’ things and can’t find the energy to do them.
I am coming to the realisation that even though the majority of my cancer treatment is over, I still need to take some time to simply rest, eat well and get better. And actually, I have another nine months of Herceptin to go plus a small surgery in December. It is not like I am exactly doing nothing. But perhaps doing nothing is actually okay J
Day by day, the new job
My job has moved from ‘doing chemo’ to ‘doing recovery’. I am working out what the job description looks like but I think it is something like:
– Work out how much energy I have each day and plan the day accordingly
– Eat lots of fruit and vegetables
– Drink lots of water
– Get outside and do a walk or gentle exercise
– Get help and support for the post-treatment phase including treatment side effects
– Rest when tired
– Keep my mind positive and stress minimal
– Talk to supportive people
What has helped this week:
– Having a friend and cousin to stay this weekend. Talking about inspiring projects for the future.
– Realising that my job description has changed from ‘doing chemo’ to ‘doing recovery’.
– Planning my days better based on energy levels; cancelling quite a few appointments as I wasn’t feeling up to them.
– Writing each day.
– Sleep hygiene – bath, book and bed. Getting into a new routine
– Ringing the Oncology Nurse to talk through blood counts, bleeding noses etc.
– Talking through being in limbo stage with people who’ve been there.
– Doing some gentle exercise.