Tag: Lymphoma

Day12: Taking it easy

Seriously, that is my motto for life in the near future. I have nothing to prove. I need to be kind to myself, accept my limits (physical and emotional) and deal within the boundaries that they offer. This actually isn’t as difficult as I might have once thought, and it also isn’t a cop out to do nothing.

Photo by Max van den Oetelaar on Unsplash

I woke up feeling remarkably good today. Certainly better than I have in the past three weeks, because who feels good while in hospital? I had an excellent, relaxing weekend and I slept, and slept and slept…for ten hours each night. That rejuvenated me, and Monday (which I was kind of dreading) actually wasn’t so bad at all.

After being AWOL for weeks, I had a bunch of stuff that I absolutely HAD to do, and another bunch of stuff that I had to do, but without the capitals. Happy to say the former got done, I felt accomplished, and rested as much as I needed.

I am weaning myself of the cortisone (which is the cause of all my discomfort right now) so I am thrilled about that, and even if it is psychosomatic, I am beginning to feel good again. I should be off it completely within 2 weeks.

Tomorrow I go for a CT scan where we get to stage the Waldenstrom’s. This could be good news or not-so-great news, but it almost definitely will not be BAD news. This is the scan that also determines (I think) the intensity of the treatment, which will probably be determined in my session with my oncologist on Wednesday. I look forward to that. I had a session with a haematologist on Friday, which went VERY well, and I will write it up shortly. Lots of interesting stuff came up in that session, most of which left me more relaxed walking out than walking in.

Anyway, speaking of taking it easy: I read another blog that said

“I once read an article that compared being a morning person to adding a 25th hour into the day. Instead of a perfectly curated morning routine, the author simply woke up an hour earlier than everyone else and did what felt best — reading, walking, writing, maaaaaaybe yoga. I love the idea of giving yourself a free hour for ‘me time’ in the cool, calm, quiet morning.”

Well, I love it too. And although I LOVE sleeping in until the absolute last minute, I wonder how I would feel if I woke up an hour earlier and did some fun stuff for me, without the hustle and bustle of daily life kicking in immediately. I am going to try it tomorrow. Or the day after 🙂

 
If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.

Day 1: I have cancer :-(

On July 11, 2018 I found out I have cancer. Today it was confirmed as a lymphoma. The final diagnoses will come next week, but it is almost definately “Waldenstroms macroglobuliaemia” (WM). It has no cure, but it is treatable. It is also extremely rare.

 

This obviously sucks.

 

But probably not as much as it could suck, since there seem to be many positive signs about how this cancer has progressed in my body (very slowly). I haven’t seen my oncologists yet, but I have googled the crap out of it, and I think it’s going to be OK. The median survival rate is anything between 3.5 years to 11 years, which (surprisingly) is not nearly as bad as it sounds (I will write more on this later). In brief, I think I could die with Waldenstroms instead of from it. There are certainly many, many people who have lived with it for decades and are still going strong.

The worst thing for me is that the lymphoma is here to stay, as there is no cure. But! It’s been with me for the last 8 years and I didn’t even know it, so maybe we can continue as usual? 🙂

 

I intend to be very open about the process of this disease in my life, the treatments, my reactions and the overall journey. I am thus resurrecting this blog (again!) and will use this as a platform to write about all things to do with my life in general, and this cancer in particular. For one, I hope to offer a resource for others suffering from this cancer, especially if they are in South Africa. But it’s at times like this that one thinks of leaving footprints, and writing a blog is maybe a good way?

Before I sign off…a big shout out to my family and friends for their support, especially Craig who is clearly going to be my rock here. <3   XXXX,

Eve

 
If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.

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