Friday, 24 March 2017

Finding the Balance

I just posted that last post from a month ago today because I was too nervous to share too much of myself.  It is a difficult thing to allow yourself  to be vulnerable.  It was easy enough for me when I was so very unwell with cancer because there really was no other option.  Now I appear to be a fully functioning member of society but for my husband and daughter, they see the daily struggles.

I have always prided myself in being more of a go-go-go personality. And now I can't be...and I hate it!  I'm starting to be kinder to myself.  I'm realizing and accepting that I am not and never will be that person I was back 5 years ago. Before my body and brain became overtaken by cancer, then soaked with chemo, sliced and diced and then drenched with more chemo.

I attempted a gradual return to work this past fall.  I went into it understanding that it would be challenging and a major adjustment but I was in for a rude awakening!  I am a post-surgical nurse. The job requires physical, mental and emotion hard work.
My colleges are amazing and supportive people.  I arrived for my first day nervous but excited to be back.  I was met by loving wonderful people.   I remembered why I loved to work there so much!
As the weeks went on my 3 days a week of 4 hours got decreased to just 2 days of 4 hours because I was slowly fading more and more.  I was slowly improving my function during the work day but my energy, patience and happiness outside of work were slowly deteriorating.  I was needing to recover and do nothing on my days off.  I slowly found less and less energy go on social outings,  I shyed away from chitchat with other parents during school pick up and even found myself too tired and drained to even visit family over video calls.  All these things that would normally bring me joy were just too much work.  I know now that my sympathetic system was in overload, constantly in fight or flight.  I did not fully realize how drained i was from working until I stopped for a while.  My doctor suggested taking a break because she could see I was becoming far too overwhelmed and she was definitely right.

I have gotten connected with amazing counselor at the Cancer Agency and also had been referred to the pelvic pain clinic at Women's Hospital.  Both have given me amazing tools to help improve my coping techniques and help me start living again!  I continue to deal with daily pain and digestive issues but I'll keep you posted as I slowly figure it out :)

I have started a course at the Cancer Agency about Memory and Attention.  I have been struggling with short term memory, focus and attention...all things that surprise, surprise, are now likely soon to be listed as  side effect of chemotherapy.  Now there is also the use it or lose it effect but this is on a whole other level!  I'm not only enjoying the course itself but it i also extremely helpful being around others who are having similar struggles an searching for their new identity and increasing their part in society.

I've learned I function relatively well in the morning but need a good part of the afternoon to recover before I can be around others again in the later afternoon.  It's a strange thing to have to rest up to go out for coffee with friend.  Such activities used to be restful in itself!

Day by day I'm slowly pushing myself to do more and more.  Sometimes my body pushes back at me and I need to take a couple days to recover.  At least now I'm finding a certain level of coping and acceptance with those much needed recovery days.

There is no question that we are all hardest on ourselves.   It's a work in progress!

The New Normal

Over 2 1/2 years ago I was diagnosed with terminal stage III appendix cancer.  Given my age of 31 at the time, my amazing medical team and I chose very aggressive  treatment plan.  Over the span of just under a year my body went through some very extreme changes.  8 rounds of IV and oral chemo, 3 minor surgeries and one major HIPEC surgery.   Thankfully all essential organs were clear of cancer but a lot of surrounding tissue had to be removed due to invasion.  Uterus, ovaries, gallbladder, parts of small and large bowel, part of pelvic wall and many layers of the abdominal lining called the peritoneum we also removed.

Much love, celebrating and support was given and received throughout that extremely challenging time.  I had a job, a purpose...fight that cancer, get through the treatments so I would be able to be there for my then 3 year old daughter as she grows up.

Now fast forward nearly 2 years later.  I just celebrated a 2 years clear CT scan.  Definitely reason to celebrate!  I am struggling however with figuring out how to function in this busy world.  The exact ideas and images I've had of myself  as a person, mother and wife are not possible now and I have been struggling to figure out what and how I can do the things I was to do.  Like many people who deal with chronic conditions my health and function fluctuate significantly.  Sometimes it seems like for no reason.   I do get frustrated and annoyed with the whole situation at times.  As well, I feel frustrated that I feel frustrated and guilty that I'm not just happy to be alive!  I'm learning to be easier on myself, pacing, meditation, asking for help and more PACING.

I'm working on figuring out and accepting the new normal.    Over the past 6 months or so eating has become more of an issue.  Occasionally I am experiencing major debilitating abdominal pain.  There are no test indicating it is cancer regrowth which is fantastic.  My wonderful caring Doctor feels as though I am having problems with adhesion (scar tissue) which leaves me prone to bowel obstructions.  I am now on a no insoluble fiber diet which seems to be helping but isn't a magical solution.  Now don't get me wrong I know I am by far not the first person to have these sorts of struggles.  I am a Registered Nurse and I now understand those patients who came in with failure to thrive.  It is hard work to find food you can eat and consume enough of it when you aren't feeling well.

The past weekend I overdid it...but there were some pretty awesome outcomes of my work!  We hosted my daughter's 6th birthday party.  I have been planning and pacing the party prep for the big day but of course a day with 8 children proved to be pretty exhausting!  Some people would wonder why on earth I would be putting the effort into a party.  The answer is simple, I love it.  I am a handy, crafty person. Nothing makes me happier than seeing my creations enjoyed.   I just need to figure out how to balance what I can/should do vs what i want to do.

I'm on this new journey, to figure out how to function with this new body of mine and how to thrive with the new normal!