Having a Life Again
The last 7 weeks have been amazing. I’m on my new drug and I am able to have a life! I’m not completely crippled by chronic fatigue. And it’s completely f***ing AMAZING!!!! Part of me is a bit worried that the fatigue will come back and that this is short lived. That it will rear its head. As that is what has happened in the past.
I remember starting off ok on drug number 2. It was so long ago now that I can’t really remember how I felt on it to begin with. I just remember it getting worse and worse with time. But I don’t think I felt as light as I do at the moment. I think the heaviness might have been there. It was also over 11 years ago, so it’s probably hard for anyone to remember how they felt that long ago!
New treatment and still feeling like me
But so far, I still feel like me! Yes, I get tired but it’s not the same. It’s not as heavy. I have only worn my ‘Please offer me a seat’ badge with my ‘Cancer on board’ badge twice in the last 7 weeks. TWICE! THAT’S IT! I used to have them on all the time and worried if they weren’t visible on what I was wearing. I hoped that someone would notice them the second I got on the tube to offer me a seat if there weren’t any. That someone would let me sit for those precious moments so I could re-charge my battery a little bit.
Now, I don’t worry about standing up on the tube, or standing in general. I can stand. This is a new feeling for me! Not looking around for something to lean on or a seat if at something that would normally mean standing for longer than about half an hour. I just go and stand.
I don’t worry about how much sleep I’m going to get. Yes, I need to get more as I am still on chemotherapy, which I tend to forget. But, I can function for the day AND the evening on 9 hours sleep. The difference this makes. Well...there are no words.
I haven’t cried in a really long time due to fatigue and misery.
When fatigue doesn't ruin your plans
And for the first time in around 8 years, I was able to cook and have friends over for supper on a Friday night. Last weekend, I went out on Friday night, had a friend over for supper on Saturday night, and went out for lunch on Sunday. I genuinely can’t remember the last time I had the energy to do this.
Not having to worry about sleep is huge. I never really clocked how much it used to impact me. It dominated everything. Every thought. Every plan I made. Always thinking about the impact on the next day if I got less than 10 hours sleep.
I can now say yes to social things that I haven’t been able to in the past. I have a freedom that I had forgotten I once had. I don’t resent my diagnosis and treatment as much. I don’t feel like my life is dictated in the same way.
Because I have more of a life now than I have had in so long.
Have you met another blood cancer patient?