Monday, 4 December 2017

Repeat patient

I have become that repeat patient.   They know me all too well on the general surgery unit.   I always felt that once patients start coming in more frequently that was the beginning of the end.  Which could be true but we just don't know, I could have a month or I could have significantly longer. 
I've discussed with my family and realistically when it comes time I will go quickly.  Because of an iliostomy that is high output (empties about 4 litres a day) I'm kept alive on a daily basis because of 3 litres of IV food (TPN)  and about 1-2 litres of other IV fluids.  When I become too weak to maintain these consistently by myself I have decided  that it will be time to stop these infusions.  That means very quick dehydration when you consider how many IV fluids I get in a day.   This may sound like a terrible end to many of you but if you have seen the long drawn out tortured (for patient and family) end for many cancer patients fairly quick decompesating may be a blessing.   I have always been of the opinion that quality of life should definitely outway quantity.   The hard part is as you go along day by day in life and become more into survival mode you can only see the step or two in front of you and occasionally loose focus on the bigger picture.  I need to be sure to keep that picture for myself and my family clear.
As far as quality of life goes I actually feel quite good right right.  And that has everything to do with my family and friends helping me on a daily basis make my projects and dreams for the day become a reality.  They do the tedious, tiring parts of projects and I step in for the fun parts.   If I had to look after the tedious parts there is no way I would have energy for the fun parts and in turn no energy for fun and joys and in turn a poor quality of life. 
Palliative cares involvement in my case has being amazing.   Some people are scared off by even just talking about palliative care.   My case their involvement has drastically altered my quality of life.  I am on a continuous pain medication patch and 4 different medication injections multiple times throughout a day.   They control abdominal cramping and pain quite well.  I didn't realize how much pain I was in until after I started on these medications. Chronic pain fogs the mind and you can't think, problem solve and look into the future because you mind is so focused of survival of making it through that moment.  Palliative care has given me the gift of pain management and this has released my brain to be able to think about other things and other people a little bit more as well.  Knitting,  handling occasional listening to music,  handling having a small crowd of people around or doibg light easy yoga are all things that a couple of months ago were draining to the extreme.  They are still draining but at least I can process in my mind that they are and I can pace out my day to be able to do some of these joys in life again.

I'm living a higher quality of life solely because of the willingness, helpfulness and understanding of those around me. For this they will never truly know and understand the gift they have given me.  Thank you is not a strong enough word,  but THANK YOU!!!

Tuesday, 13 June 2017

Feeling Loved

It's been a rough couple of weeks and there will be a lot of challenge, exhaustion and pain in my future.  But do you know what there is even more of?   LOVE! There is love in every hand squeeze,  every smile,  every little text message,  every visit, every drawing, all the bright flowers, every meal delivered to my family, all the emails, every playdate for my daughter,  every mundane task I'm helped with,  every Skype visit from those far away, every medication given and in all information, teaching and experience shared.  Love is all around! 

The cancer through out my entire abdomen is back.  So much so that the surgeon couldn't determine between bowel,  pelvic wall and tumour in my lower abdomen.   If and how far it spreads through the rest of my body is not known yet.   I am currently recovering from 9 days with no nutrition followed by surgery which has left me with in incision from lower sternum all the way down to lower abdomen,  a g-tube and an iliostomy (or poop-bag, as my daughter calls it). 

Every act of love adds a little bubblewrap bubble of love surrounding me.  I am in a love bubble and it is helping cushion me from the hard blows that life is throwing at me.

Monday, 5 June 2017

Pray even if you don't usually pray!

I'm the only case on the surgery slate for tomorrow.   The surgeon is very suspicious that this is cancer regrowth.  We are preparing for the worst and hoping and praying for the best.
Today I am surrounding myself with love,  hugs, family, friends, fresh air and sunshine!

Sunday, 4 June 2017

Practicing Patience

I'm being patient.   8 days with no food,  nasogastric tube suctioning and PICC insertion with TPN infusion(food through IV)  to start tomorrow.

Over the past number of months adhesions from previous surgery have  slowly  being tightening around my small bowel.  Now there is a partial blockage.  

You would think I would be more frustrated and annoyed.   Truthfully,  I'm relieved.  
I am relieved that they have finally figured out why I've been having slowly increasing pain since last fall. 
I'm relieved they've figured out why I've lost 30lbs over the past 4 months despite very hard work  to consume enough concentrated calories.  
I'm relieved something can be done to improve my quality of life.
Most of all, I'm relieved that they believe this is an adhesion problem not a cancer regrowth (of course they don't know for sure until surgery).

The potential plan is for a bowel resection this coming week.   Monday will be the turn around for a new attending doctor to take over.   Discussions will hopefully happen tomorrow and from that more of a plan for moving forward!

Tuesday, 30 May 2017

Side Step

I won't call it a step back,  I'll call it a side step.   I have ended up admitted in the hospital this week.   My digestion is so sensitive that I'm pretty sure it was a eating a peeled,  seedless cucumber did this to me.   Note taken - puree,  puree,  puree!

This weekend I was at girl guide camp with my 6 year old daughter. Saturday afternoon I suddenly became quite ill.   Abdominal pain,  nausea,  vomiting,  the works!  I spent the night in Sechelt hospital where I was pumped full of antinausea and pain meds discharged the next day with the understanding that I would go into the Vancouver hospital if things got worse again.   I managed to get across the ferry and then everything went awry again,  so here I am waiting for my intestines to work again and going on day 4 nothing by mouth and only IV fluids.
As much as this sucks I am waiting patiently and enjoying being forced to get some knitting done, many walks around the hospital and visits from the awesome people in my life.   I do however need a better texting plan!
My daughter was excited to go have dinner at the hospital cafeteria,  her fondest memory of my prolonged hospital stay a couple of years ago.
I've taken a step off my track of improvement but hopefully I'll get to step back on it before too long!
Thank you your love and support 😀

Monday, 15 May 2017

Allowing me to LIVE

  I am very thankful that western medicine has gotten me this far.  There is no doubt that I am alive today because of very advanced cancer surgeries and treatments and for that I will be forever grateful!  But in March after 2 visits to emerg since the beginning of the new year for severe abdominal pain and dropping at least 20lbs within 2 months,  I knew something major needed to change.
I had been interested in exploring massage and acupuncture for pain and symptom relief but didn't know where to start.  I ended up asking others for recommendations and did my research to find the resource to open this branch of alternative medicine up to me, a naturopath.  I found a wonderful ND that is passionate about her field but also supportive and understands the importance of western medicine.
I feel like a whole new world of possibilities has been opened to me.  My naturopath referred me to a visceral massage therapist.  The massage of the lining throughout your abdomen.   I have seen this massage therapist 3 times so far and every single time I'm there I have a moment of thinking "this is ridiculous"!  At the start of every session she gets me to close my eyes and rests her hand on my head and at least half the visit seems to be her just lightly resting her hands of my stomach.  She is able to feel the tension in my abdomen and help to loosen it by touching just the right points.  Every time I walk out her door I know that things have improved.
On my second visit with her, she was able to feel that my large intestine was stuck to the back wall of my abdomen(it's supposed to be able to float around).  Through body position and applying pressure at just the right point I was actually able to feel the layers slowly and gently peel apart.  Think of when you get a package of balloons and two of them are stuck together. you peel them apart.  That's what I actually felt happening inside of me.  It was very strange but so amazing at the same time.  Three days after that visit I had to decrease my gabapentin dose (nerve pain meds) because my pain levels had actually improved!
For the past number of months my body lets me know I need more food not by feeling hungry but by feeling exhasted and woozy.   The adhesions do not allow my stomach to digest and empty quickly enough to feel hungry.  Three days ago was my most recent visit with my visceral massage therapist and in the past two days I have at times actually felt hungry!   This morning is the first morning in as long as I can remember that I woke up and wanted to eat because I felt like eating not just by knowing I needed sustenance.
As recommended by my naturopath and approved by my doctors, I continue to take dietary supplements and eat a low insoluble fiber diet and majority of blended foods.  I am hopeful that continuing on this course I will see more improvements.
Western medicine has kept me alive but alternative medicine is teaching me and allowing me to live!

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!