Monday, 1 October 2018

Well Hello!

I have not blogged here since just before my surgery in January but I am in fact alive!

The surgery was a success but there were a lot of complications so I am just now starting to feel like myself again. The main complication besides going septic 2 or 3 times, having a massive amount of wounds to heal and being in the hospital for over 2 months was a kinked, almost non operational colostomy. The stoma (little piece of bowel that is supposed to be above the surface) died quickly and after that the opening took it upon itself to “heal” closed which it did several times. As you can imagine that was a problem. That has, knock wood, been fixed as of August 27th. I don’t blame anyone for the over achieving healing closed of the colostomy. I have a very thick abdominal wall so this was always an option to happen. I’m just thrilled it seems to be working after the last surgery and I hope my body doesn’t try to heal this one closed too!

The other main reason I’ve not blogged is that blogger stopped supporting it's app and sitting for long periods at the computer is still not possible due to a tailbone wound that has healed closed but still feels somehow obligated to hurt quite badly. I've had lots of tests, there's no cancer in there. All my other wounds from the surgery have healed thankfully. 

So I’m trying out a new blogging app and we’ll see what happens! Mostly though I’ve been updating on Facebook and you are welcome to friend me there especially if you want to see my pictures. Ruthe Martin - Kitchener Ontario - just send me a private message first and tell me that my blog sent you. Another option if you like my attempts at humour is Instagram where I am under Deep Thoughts From Squirrels :-)

On Saturday I had the amazing experience of going back to the hospital where I had my surgery and speak to staff there from a patient’s point of view. It was such a great experience and everyone was wonderful! It took me a few seconds to recognize people out of uniform and with their hair down but then I did and I remembered what they had each meant to me. The extra miles they went. I am so grateful for their care. I think I even met some people who were in on my surgery!

They gave me flowers and a lovely card and I had a lot of fun using the flowers in my pictures.

Here's a video of the talk I gave to the hospital staff. Fair warning, it's 16 minutes long but there are a few ad libs not in the written version. I can't say enough how comfortable everyone made me feel and how this experience makes me feel like I'm moving past this difficult year.

I started my talk after Kelly, the lovely organiser of the event, had just read two really heartwarming, touching, interviews she had with other patients.

And here it is in writing:


Hi. My name is Ruth and it has been exactly 25 days since I have been in the hospital! As many of you know I have been in and out of the hospital with complications for almost an equal amount of time since I had Total Pelvic Exenteration surgery on January 17th of this year, to prevent vulvar cancer from travelling inside to my organs, which it was hell bent on doing. 

This means that I got to meet a lot of you, both on 4E and 4F, and I could not be more grateful for your excellent care. It's very nice to be here in an upright capacity and to say that as of right now, tests show that I am cancer free. 

My experience with cancer began in 2011 when I was diagnosed with an aggressive  form of vulvar squamous cell cancer. I figured out early that I was not going to be shy about asking for support despite the personal location of the disease that most usually affects women over the age of 75. Very little research is being done, so suffering quietly and stoically would help no one. 

There's no colour of ribbon or logo for vulvar cancer so my niece helped me design one and I decided that I would start a public blog specifically to let friends and family know how I was doing.  I figured early on that I would assign people homework so they could DO something besides worry. I was having my first vulvar cancer removal in May of 2012 so I asked for (obviously homemade) Happy Vulvectomy cards. The creativity and humour knew no bounds. It was awesome! The surgery was incredibly painful but I had a team behind me cheering me on. And we laughed despite of cancer. 

I also recognized that I'm not a very assertive person, and if cancer is a battle, I would not only need the love and support of people around me, I’d need to draw on some more traditionally aggressive tropes and when I found a funny orange and white striped shirt with ties at the waist, I hit on pirates. 


Turns out you can have a lot of fun with pirates and that can get you through weeks of radiation designed to intentionally burn your skin. On the last day I dressed up in all the pirate paraphernalia people had given me and posed with my radiation team. Then my sister took me out to dinner to celebrate and when I entered the restaurant I was surprised to feel the floor shake with the energy of 30 people leaping to their feet all dressed in pirate regalia and shouting Arrrrrrh Ruthe! at the top of their lungs and we celebrated!

In the movie that would have been the end but my cancer story continued with 3 more recurrences and three more surgeries. Each time just as painful and each time i added an assertiveness booster to help me and others play along. To talk and to laugh. To not be reverential about cancer. There were Vikings and sharks and honey badgers. Cause if we've learned nothing from YouTube people, Honey Badger don't care - Honey Badger. Gets. It. Done. 

This brings us to late 2017 and the last surgery’s pathology showed that the cancer was unchecked and moving inside, heading directly for my bladder. Dr Laurie Elit took a chance on me - someone with a less than ideal body for a big surgery - and offered me the total pelvic exenteration. Or as my sister dubbed it - the Barbie Butt surgery. Nothing more fun than saying that to a health care professional and watching their faces as they react or try not to. That's when Barbie Wonder Woman joined the assertiveness team and it's where you come in. Many of you will have seen the Wonder Woman poster on my hospital room wall. And the Wonder Woman balloon with the motto that my nine year old niece wrote in an inspiration booklet for me: I Don’t Need Easy, I Just Need Possible. 

Mind you after two months in the hospital I added:  But maybe easy sometimes?

Over time my blog became less about cancer and more about photography which is my actual passion in life. I'm currently trying to cope with still learning to manage my ileal conduit and colostomy (which is now working, Yay!) and building up my strength so I can get back to my photography - volunteering with people in long term care, using photographs to enhance the memories they retain. I also take pictures of squirrels so… there's that. 

I am so very grateful for your tremendously huge part in my journey. You took over with grace and compassion when I was literally helpless and near death. I could not possibly have asked or hoped for a better group of people to walk with me in this challenging year. A million thank yous could never be enough.  

But this is not supposed to just be a love in. I have some questions to answer so let's get to them. 

What is something that you most appreciated about your care?

I think what I appreciated most about my care was that I never felt like anyone was feeling sorry for me. My needs were addressed carefully and respectfully, but I usually forgot that I was on an oncology floor, except when I saw the sign while being wheeled back from a test. I feel like everyone met me exactly where I was. If I was sad or in pain I was not asked to cheer up and practice gratitude. If I was in a silly mood well, you met me there too. And most of all near the beginning when I was pretty delirious and finding out that Dilaudid gives me waking nightmares and I would cast my waking up dreams with nursing staff - we were in the tropics and the curtains you came through were mosquito netting -  or I’d wake/dream that my roommates were evil and out to get me, you didn't treat me any differently either. You just helped me get oriented to reality and to find solutions.  

 If you could change one thing to improve your experience what would it be?

I am a nightmare to get blood from and to start IV’s. You can hit my veins perfectly but they will then dance out of the way. It is not their first rodeo. For the most part I feel like I was completely shielded from talk of cuts to service and or hospital politics. However I was acutely aware that it was not the job of the people with the most experience in this area to come onto the floor to draw blood and only done as an absolute last resort. I stopped counting at 15 tries one morning by various people before a person came and had me hooked up in 30 seconds. If I had millions of dollars to donate I would allocate it to hiring a greater number of IV nurses and a second picc line suite for your hospital because picc lines are magic and need to be available more quickly once decided upon. 

Having said that I want to recognize that many of you are REALLY good at this skill. And I loved that when you recognized your strengths lay in other areas, you cared enough to go get your colleague, who is in fact a vein whisperer and covered their work while they helped me. Teamwork at its very best!

What was your highest and lowest moment that we can learn from?

The high moments, no pun intended Dilaudid, were many and varied. 

A doctor I'd never met, but who was a part of the huge framework of disciplines working hard behind the scenes at helping me get well, who stuck his head around my curtain after I'd clawed my way back from being septic for the second time and said “I just wanted to see the strong woman who is beating these infections so heroically.”

The person who kept my room clean and brought me ice water every morning that they worked. Ice water is right up there with picc lines!

The food services people who helped look for my iPod, and instantly forgave me implying they may have carried it out on my tray, when it turned out I was of course lying on it. What an impact your smiles had as you dropped off my tray!

The nurse who took a celebratory selfie with me when we finished dressing my many wounds carefully but in record time. 

The nurse administrators who took time to reassure my family. 

The dietitian who saw past my size, and figured out that I wasn't eating the “food” here and alertly bombarded my tray with a variety of items, so that I'd at least eat something every meal. 

The PT who taught me how to get out of an air bed and the OT who custom designed a cushion for me. 

The health care aide who helped me feel clean and was a direct, unfailing, ray of sunshine in my day.  

The student nurses who did the most thorough morning check ins I've ever experienced and were beyond excited to finally get to be hands on. May you never lose your joy in helping. 

The folks who work in ER who didn't roll their eyes at me for developing so many mystery fevers and needing to come back in. So. Many. Times. 

I think what I'm saying is that I remember a lot of moments when you went above what your job may have strictly called for and I felt like I was a reason you were here and not a burden or a chore. 

My lowest moment? 

Probably being on a gurney in a corner of a hall down on the first floor after a test when the fire alarm went off and lying there for a really long time. Now I've been in the hospital often enough to know that fires are seldom in the area you are in, and that you can't use the elevators so of course no one was going to come get me, but I wasn't in a sensible frame of mind. Most of you know that I'll do almost anything to avoid using my call button except on behalf of a roommate, but in this situation I devolved into someone calling out for help, and the people moving past me going to their assigned stations did not know me and did not engage. I felt invisible. I was helpless to move. I was a long time past due for my pain medication. Finally, a mobile patient pointed me out to a staff person around the corner in the testing office and that person came over to me and said: “You are going to be okay. I will not go home if you are still waiting here when my shift is over in half an hour.” That was all I needed to hear. I must have gone to sleep because the next thing I knew the alarm had stopped and I was being wheeled, “home” to 4, where people knew me. 

What could we have done better?

Oh gosh, you're human. Maybe some of you were better at making sure my pain meds were up to date before wound care began or the lonely hinterland of shift change arrived. 

Maybe I could have gotten a different mattress sooner which may have prevented the worsening of my tailbone wound? 

And, with the knowledge that absolutely none of the front line workers are responsible in any way for this, I’ve been in another, closer to home hospital, a few times this year as well, and the food was 100 percent better there so I know it can be done. Sorry. I know you are trying hard. 

I also preferred, like at that hospital, to deal with one nursing team who monitored everyone’s pain relief overseen by the anaesthesia team, rather than by the doctor teams I was under like here. That may not be possible at a teaching hospital where you're also training doctors to prescribe pain relief but it felt very much at times like I was at the mercy of the opinions of that day's resident regarding pain relief. But that's also when I felt the wisdom and experience of the nurses and pharmacy teams had my back. 

And I'll stop the comparisons there because patient care vs patient care between the two hospitals you can certainly all hold your heads high. That's what matters the most. 

PS Y’all are my favourites. Just don't ask me to choose between 4E and 4F.  Apples and oranges - two equal but different teams. Dare I even say families? 

What top 2 things made you feel safe/secure during your experience?

Firstly, I think feeling like you believed what I said made me feel the safest. If you doubted that I had really still been half asleep when I said or did that off the wall thing as I was waking up, you kept that opinion to yourself. Thank you. Also thanks for writing your name and especially the date on the whiteboard in my room. Very handy when the mental health team (excellent by the way) drops by to see how oriented you are. 

Secondly I was sent down to the first floor for tests and procedures a lot and was met with unfailingly terrific staff there. There was often quite a bit of waiting on a stretcher  in the hall before being taken back to my room. The technicians who made it their business to notice I was still there uncollected and reassured me won my gratitude the most. Sorry to bring that up again but I felt quite adrift at times. 

What happened that made a difference in your care (positive or negative)?

I think I have already recounted pretty much all the negatives that I'd like to say and there are too many positives to even begin listing. I won't remember all of your names. In fact many of you who serve behind desks or helped during my 11 hour surgery and then recovery, I don't know at all but I'm not unaware that you were very important to my care. 

I don't know any of your motivations for choosing your professions, but I feel so very fortunate that you did, and that in this, my year of living in hospital so much, I was in YOUR expert care. Please, every time you put that badge on, remember how important your job is and be really really proud of the difference you make. Thank you for everything you do.

I would be remiss in not thanking the nurses and staff of the community care I received when I left the hospital. They were utterly fantastic. Could not have been better!

And I can't get started on my family and friends because ye olde tailbone says get the heck off the computer. (New app can't load pictures.) But gosh I am SUCH a fortunate person to have the truck loads of support in my life. I love you all.