My last post mentioned that my husband was suffering from really bad sinusitis...that was a gross underestimation of what was actually wrong with him. As it turned out, he was suffering from hydrocephalus (excess fluid on the brain) which had been caused by a brain tumour (pineal cytoma to be exact)! Oh how I wish it had just been sinusitis. I will spare you all the details, and just say that tumour resection surgery was done in January 2017 followed up by radiation therapy in May and June.
To say that I've been on a rollercoaster of emotions is putting it mildly. I think I've felt every emotion there is: sadness, despair, anger, hate, love, envy, fear, joy. Thankfully I've had a great support network (friends, family, co-workers) and I will never be able to thank them enough. This ordeal has been the hardest thing I've ever experienced and I wouldn't wish it on my worst enemy. There were so many times that I would have gladly traded places with Steve because it was so hard for me to see him in the state that he was. Words cannot describe how hard it is to see your spouse hooked up to machines and IVs in the ICU day in and day out.
The upside to all of those hospital visits is that I no longer feel queasy as soon as I set foot inside one. There really is some strength to that "exposure therapy" that you hear about for people facing their fears. I never had a fear of hospitals, I just felt really uncomfortable in them...they're full of sick people after all! Anyway, after months of daily visits, I started to feel more like staff than a visitor. I got to know the nurses and doctors by name and they got to know me, and I even learned some medical terminology along the way (endoscopic third ventriculostomy (ETV), external ventricular drain (EVD), intra-cranial pressure (ICP), cerebrospinal fluid (CSF)).
Steve came home from the hospital at the end of May 2017 and I thought our life would start getting back on track shortly thereafter. I guess I had high hopes and didn't fully understand how long a brain injury like this can take to heal. It is now almost 11 months since he came home and we are still working on physio and occupational therapy; although, that has been put on hold while he recovers from a kidney stone. When it rains, it pours man. That old saying, "lfe is short" isn't just a cliche. Seriously, I never thought that I would be a caregiver to my husband at this stage of our lives. It sucks and it really puts your "in sickness and in health, for better or for worse" wedding vows to the test. I don't have kids, but this is what I imagine being a single parent is like; I'm exhausted all the time. Sometimes I've been so drained emotionally that I just sit down and cry because I feel so helpless and lost and don't know what else to do. Sometimes I immerse myself in a show on Netflix and binge watch as an escape from my life for a bit. A lot of the time I find myself feeling frustrated and angry and just wanting things to be the way they were before all of this. I suppose all of those things are only natural.
I've started going for a hike each Sunday with my friend and that seems to help. I listen to the drama that is happening in her life and it's a bit of a break from my own for a little while. The exercise and fresh air is also good. I also met up with another friend for tea just yesterday and that was really helpful; she is the only other person I know that has been in the role of caregiver for her husband at a similar age as me even though her husband suffered different injuries. It was nice to know that everything I've been feeling are things that she felt too. I just need to tough it out and be patient during this long road to recovery that Steve is on and at the same time I have to remember that I need to be enjoying my life too. It's okay for me to go out and have some fun once in a while. I have to take care of myself if I am going to be taking care of him. Tonight, I'm going to have a bath and soak my stresses away, even if just temporarily.
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