Cancer PTSD

 In a few weeks I will go for a CT scan, followed a week later by a visit to my oncologist.  At my follow-up that took place a month after I finished my radiation treatments, the oncologist had said that she'd see me in a year for follow-up.  I panicked.  I told her that the radiologist wanted a three-month follow-up (true) and I also told her that I felt like I had a kind of PTSD.  As I explained it to her, it is a feeling that cancer is going to sneak up behind me and hit me again.  With this being my second round with cancer in two years I admitted to being paranoid.  I told her I had been having dreams, nightmares really, that I was diagnosed again.

With my body having suffered through so much pain already, I feel like I can't trust what it's telling me anymore.  I'm not sure I'm interpreting twinges, etc. correctly.  Because of my plea she said we'd have follow-up in mid March.  

Now as the time for my CT scan looms, I'm starting to get paranoid again.  Every little twinge scares me and I am having nightmares again that the scan will show cancer back in another part of my body.  I've been lucky so far that surgery and radiation seems to have eliminated it.  I'm hoping that luck holds.  The good news in the meantime is that aside from the twinges (and paranoia over them) I feel really good.  I'm feeling healthy, relatively pain-free, and the weight loss has been fantastic on my overall health and self-esteem.  I'm down a few sizes and hope that trend continues for all the right reasons.  It might take a bit of a while before the paranoia goes away though.    

Roommate Roulette

One of the most interesting and unpredictable things about the whole treatment experience was the roommates.  Because we live quite rurally, there is no hospital in my area that offers radiation treatments.  As a result I had to go to a large urban centre for this.  The hospital hooked me up with "the Residence", which is basically a hotel but that has a deal with the hospital to provide subsidized housing for long-term treatment patients.  

The Residence has a lot of suites and these are two-bedroom/two-bathroom suites, which include a small kitchen (stove, fridge, dishwasher, microwave) and a shared living room.  One bedroom has an ensuite bathroom, which is fairly small and has only a shower stall.  The other bedroom has access to its own bathroom which has a larger shower stall (handy for installing a chair for those who need it).  A meal plan comes as part of the deal and includes breakfast in a common room on the main floor, and lunch and dinner delivered to your room.  They even take your dietary considerations into account when doing your meals.  The suites are quite nice.  The drawback, though, is that you have to have a roommate.  

And so the roommate roulette began.  

My first week I checked in on the Monday and even though I was an hour earlier than the expected check-in time, they gave me a key and sent me up.  My roommate had already arrived and staked out the slightly larger room (with the ensuite bathroom).  As I was to discover later, it's very important that these suites have two bathrooms.  You don't want to have a bathroom emergency or be experiencing nausea only to find your roommate is already in the bathroom.  Also, if they are a chemo patient, you definitely don't want to be sharing the bathroom.  (Signs on the hospital bathroom walls provided a series of special instructions for chemo patients to follow. It seems their urine, etc. are quite toxic.)  

I put my stuff in my room and loaded my few personal items of food into the fridge, and then headed out to my first treatment.  When I returned, my roommate was back.  We introduced ourselves and chatted a bit.  For my, this meant that she spilled more details than I ever wanted to know about herself, her cancer, her family, her background, her family history, and more.  It's my curse that people give me their life stories soon after meeting me.  This woman found a captive audience, so I heard a lot in our week together.  I quickly discovered that she is something of a hoarder.  

Every morning she would return from the breakfast room with a tray laden with anything she could get.  There would be several small cartons of chocolate milk, white milk, yogurt, hard boiled eggs (in the little plastic packages), juices, and fruit (apples, bananas, oranges).  Every day.  Every. Day.  So much stuff, that when I was packing my few bits to leave on Friday, my thought about the fridge was that it was more full than most people's fridges are on a regular basis.  At first I had thought maybe she was a little on the poor side and I was willing to give her the benefit of the doubt.  Then she went shopping at Pennington's one day and came back with several pairs of pants, a couple of tops, and a nightgown.  I know what the prices are like at Pennington's, so I revised my opinion of her.  I revised it again when she went shopping a second time that week and came back with more clothes.  

What topped off my lowering opinion of her, however, was Thursday morning.  In the morning I realized that I would need more toilet paper as when I was finished in the bathroom that morning, there was very little left.  I didn't see any extra rolls in the vanity, so when I went down to breakfast at 6:00 am, I stopped at the front desk and asked about it.  They said they would send some up.  I had a quick breakfast and was back in my room by 6:20 am.  My roommate was up and about and I noticed that there was a fresh roll of paper towel in the kitchen, so I asked her if they'd left the toilet paper.  Her face fell and she said, "Oh, that's for you? I'll get it for you; it's in my room."  She walked away to get me the toilet paper and all I could think in my head was, "Do you seriously think they randomly knocked on the door at 6:00 AM on the off chance we might need toilet paper?"  I'm sure when I left on Friday (before her) that she probably grabbed the whole unopened roll of paper towel and took it with her.  

As I checked out that Friday morning, I asked the front desk whether we have the same roommate each week or if they changed. They said they could give me the same roommate and went to make a note on the computer, but I stopped them, saying, "No! Definitely not. In fact, if she does happen to ask about being roommates again, please tell her it's outside of your control."  So I didn't have her again.  

In week 2, I made sure to get there two hours ahead of check-in so I could get the room with the ensuite bathroom. Roommate number two was way better. In fact, she reminded me very much of an assistant I had back in the mid to late 90s.  It was in her mannerisms and her way of speaking with that delightful sarcasm we all used back in the 80s and 90s. I really liked her. I would have been happy to have her again, but it was her last week of treatment. This was when I discovered the utility of having two bathrooms. The poor woman was so sick from her treatments that she was barely eating and spent a lot of time in her bathroom losing what little food she did have in her.  (Happily, she reached out to me at Christmas and let me know that she was now in remission!)

Week 3 I was back to having a whack-a-doodle roommate.  I would describe her as rough around the edges.  In fact, very rough around the edges.  Once again I learned way more than I wanted to know about my roommate and what I did learn made me pretty sure I didn't want to know any more.  She seemed pretty uneducated, with very strong leanings to the political right (as in if we were American, she'd be a card-carrying member of the cult of the orange idiot).  To make her even more...um, interesting...yeah, we'll go with 'interesting', it seemed like she came from a family of thugs. She had relatives, and not distant ones, doing time for various crimes. She seemed almost proud of it as she told me about them. Our suites had a very heavy door that led to the hallway and elevators and she tended to let it slam shut whenever she entered the suite or left.  When you're having treatments, you're exhausted all the time and actually spend a lot of the time sleeping.  It's hard to sleep when someone is slamming a heavy door and because there's no carpet, the sound carries and echoes. 

In week 4 my roommate was a woman with MS. This necessitated her using a walker for everything. The heavy door to the suite was challenging for her, so I would help whenever I could.  She didn't like to let it slam if she was leaving (thank you) but sometimes she didn't let it close all the way in her effort to keep it from slamming.  As a result, I returned to the suite a couple of times and found the door just resting against the jamb rather than being fully closed, and I was able to simply push it open and walk in.  It did make me think (and not for the first time) that it would be nice if our individual bedrooms had locks on them.  

Week 5, my last week, I had another roommate that used a walker.  This woman was quite elderly (82 years of age).  She was hopeful that this treatment would take away the cancer for her (aren't we all?).  She had already been through chemo and now radiation, and would be followed up with another process where they insert rods directly into the tumour and zap it directly.  That process requires a hospital stay of several days.  Although it was my last week, it was her first week.  I explained to her that she definitely wanted to keep getting the room she was in for her subsequent weeks because it had exclusive use of the larger bathroom.  I got her to call the desk to set her up with a bench in the shower and to swap the shower head out for a handheld one.  She didn't realize this could be done, and I let her know it could and they would gladly do it.  I reminded her to have it done in her subsequent weeks of  treatment too.  When I left on the Thursday (my last day) I forgot to grab my Contigo cup that I used for tea from the counter where I'd set it down for a moment to write her a note.  I hope she grabbed it and uses it.  

So that was my roommate experience.  I honestly felt like a university student for five weeks because I would go away through the week, returning home on the weekend to do laundry and sleep.  I learned early on to bring my own food and make my own meals because the hotel residence food was, well it was food. I'll leave it at that.  

Cancer and the Tattoos

Well here I am. I am halfway through the treatment part of the journey. First there was surgery and recovery from that; and now I'm moving on to the radiation treatment phase. 

Last week I had four tattoos placed on me that will allow the radiation to pinpoint with accuracy, exactly where we want the treatment. Now it might sound like a lot when you say I had four tattoos in one day however, these are the tiniest little pinpoint tattoos you'll ever see. Check the picture and keep in mind this is a blown up version. Nevertheless, that didn't stop me from boasting to my sister that I got four tattoos in one day. 

She laughed her head off when I showed them to her because she has multiple tattoos and has been after me for years to get one. She asked if I would bite the bullet now and get an actual tattoo. I said of course not. I still hate needles and I had a hard time even with these four pokes.

I'm more than a little bit nervous about the radiation part. I know it doesn't hurt so that's one thing, but I worry about side effects and reactions to those side effects. Not much I can do about it except move forward and deal with it as it comes. Since the treatment takes place in a city that's almost 3 hours drive away from me, I will be staying in a hotel near the hospital for the duration, only coming home on weekends. This hotel is set up with several rooms for cancer related treatment patients, includingg subsidized costs. There are two-bedroom suites and shared bathroom, kitchen, and living room. I just don't really care for the idea of basically living with a complete stranger. I'm sure they're not thrilled with it either. It is what it is. 

I start in 2 days and find myself giving thought to what to bring. Clothes of course, and books of course, but I also plan to bring a crochet project that I have had on the go for over a year. I had planned to finish it long ago, but over the past year I found I could not sit for very long without pain and discomfort.  As my actual treatment is only going to take about an hour out of my day when you add in the short shuttle trip to an from the hospital, I will have many empty hours. To put a positive spin on this, I will be able to focus on this project without worrying about anything else. 

After the radiation series, there is a weeks-long recovery.  The oncologist says I might be able to start a gradual return to work by December.  In the meantime, my passport should be arriving soon.  I plan to take some time for me and hopefully go somewhere next year sometime.  

Resilience... more than just a word

I have always been pretty resilient. To me it means the ability to bounce back, roll with the punches, and generally just able to wing it when necessary. I have never needed to be more resilient than I have in this past year. 

First I hit a big deer with my car, totaled my car, had weeks and weeks and weeks of physiotherapy to the able to move again like I had prior to the accident. My sister-in-law, who was in the late stages of her cancer, passed away in early spring. I had to be there for my family and be the resilient one. Not too long after that, with ongoing consistent abdominal pain, I received my own cancer diagnosis. It was a bit of a gut punch. I had to suck it up pretty quick because I needed to be able to focus on the next steps right away. 

Now, surgery behind me by about 5 weeks, I face the next step in the process. This starts with a CT scan to pinpoint exactly where the doctors want to focus for radiation treatments. In all, they plan to administer 25 treatments. This will be over the course of approximately 5 weeks  as I will go daily, Monday to Friday, for treatments, except holidays like Thanksgiving in which case they extend the treatment by a day to compensate. 

It's going to be a true test of resilience. Not just because of the actual treatments, but because I will be away from my family for so long, only able to see them at weekends or if they come to visit me during the week. We live in a fairly small town area, so while our local large hospital does offer chemotherapy treatments, it does not offer radiation. I think this brings me to my next life's work moment. 

I am going to reach out to the CEO at the hospital and open a dialogue on how we make this Hospital a Radiation Treatment Centre. For myself, a trip to the radiation centre I need to go to is a 370 km round trip. Many people in our area would have an even further commute than that. Now bear in mind, it's not a daily commute but rather, it is a trip down on Monday and a return trip on Friday for me. Fortunately, there is a hotel near the hospital that is set up to cater to cancer patients. Two bedroom suites are shared by two patients, with a joint living area, small kitchen, and bathroom. Not only that, meals are included for the patients and it's priced way below what you would expect. Thank goodness. Not just me but I'm sure many people wouldn't be able to afford it otherwise. 

This picture of the camp bracelet I got from Tim Hortons this year. I usually buy a bracelet to support Camp day. This year I asked simply for a blue one and this is the one that was handed to me. I found out later that this was actually from last year's stock and not one of this year's bracelets. It was meant to be.

So it'll take a little resilience to manage the separation from my family over such an extended period. But I've got this. And at the end of it all, the grand prize of being rid of cancer.

The Saga Continues

It's hard to know where to even start.

The surgery went really well; I had minimal pain while in hospital, and this continued at home. It just so happened that this past weekend I had some wound care with the Home Care folks. The nurse felt that I was developing an infection in my incision and so she recommended I go to emergency and get some antibiotics. That night I had my husband take me to the ER. 

As luck would have it, the doctor on call happened to be the same one that blew me off back in April when I first went to the ER complaining of persistent, ongoing abdominal pain. He had poked and prodded and then asked why are you even here. I replied, "because you guys have all the great diagnostic equipment - let's use some of it!"

Nope. In the end he sent me home saying he would recommend me to a gastroenterologist for gas or some such, despite my insistence that it was not gas. Here I am over 3 months later not having ever heard anything about an appointment for this referral. Good thing I was persistent and kept going back until a doctor ordered some tests and lo and behold we found cancer. 

So in emergency on the weekend when this doctor came into my cubicle, before I even let him examine me I said to him that I needed him to take this very seriously. I reminded him of our previous encounter and told him that I had had surgery to remove cancer from my abdominal muscle only 10 days before this ER visit. To give the doctor his credit, he actually apologized. Because I had gone in not just due to the infection, but because of some difficulty breathing, he ran a barrage of tests. It also so happened that the doctor who took over after his shift ended, was the doctor who had seen me in May and ordered tests that led to the discovery of my tumor and subsequent surgery. I was quite pleased to have the chance to thank her after I reminded her of our previous encounter. She was happy to hear that I had been able to obtain services and surgery fairly quickly and wished me well.

On Monday, I had a follow-up appointment with one of my surgeons. You see, I actually got the two for one deal on my surgery. The oncologist removed a 5 inches of the abdominal muscle, and then a general surgeon placed a mesh to help support the spot where the muscle had been. This included placing a drain, and the drain stayed in and came home with me. At my follow-up the doctor removed the drain. What a relief that is because it was really annoying to have to haul it around everywhere because it was attached to me, and try to sleep comfortably, etc.

After having had the drain for so long, I find I'm still looking for it or feeling for it at times. There is a gaping hole about the size of your baby finger in my side still but it's closing, although it is still oozing a bit. I was going to include some wound photos but that might be a little graphic for some people so nope. 

In the meantime, my son went for his driving test and is now a licensed driver. Yay for him! This morning I added him to our insurance which fortunately, is only going up about a hundred bucks a month. That's not too bad for a new driver.

So I'm home, recovering, with virtually no pain. However, I am getting bored. I am allowed to drive, but still restricted from lifting and twisting like if I were vacuuming or something. They did give me a prescription for some narcotic pain relief, but I told them I wouldn't need them and I haven't. 

As of today it has been two weeks since my surgery, and I feel fantastic. I have a follow-up with the oncologist at the end of August. At that time they should have the results from testing the tumor and should have figured out a bit more about the cancer itself, and ongoing treatment options. The surgeon has already indicated that I will very likely have some kind of radiation. I'm not sure where that treatment will be, either London or Kitchener I imagine. Perhaps it's time to start lobbying the Owen Sound Hospital to increase their cancer services to include radiation and not just chemotherapy. I think I found my next calling.

Let the Healing Begin

In the pre-op yesterday it was pretty crazy to know I had no less than three anesthetic people try to convince me to have an epidural or the self-administer narcotic pain relief pump. I kept declining until with the last one I got angry and just said they would have to trust me to know what I need and that if I needed a boost I would let the nurse give me a shot. So they finally stopped bothering me and so far I'm fine with the Tylenol. Pain on waking was about a 6 and dropped to about a 2 by 8:00 pm.  

In the pre-op they had to put on the IV needle in my hand. The nurse missed the vein and the pain was so bad I jerked my hand away from her. I wouldn't let her try again so one of the doctors simply said they would do it in the OR.  A little later there was a visit from the anesthetist and he was actually able to put it in with a lot less trauma. 

Unfortunately, even though I was awake and alert fairly early at 2:00 pm, my room wasn't ready. When the occupant finally left around 5:00, I had to wait for it to be cleaned. I was so ready to be in my room I told the nurse to let them know I was willing to come help clean if it made it go any faster.  When they finally got me to my room at 7:00pm I was starving. There isn't any food allowed in the post-op so all they could offer me there was Popsicles. On getting to my room the nurse made some toast with peanut butter for me as a snack since I had missed dinner. My roommate was hungry too and also asked if she could have some, so we both nibbled toast with peanut butter.  My family brought some Wendy's for me and I devoured it.  

I was awakened a few times in the night as the nurse had to take my vitals - blood pressure, temperature, check my bandages, and pain level. I'm doing okay. My vitals have been good and the pain is very very okay. For the most part it has been almost nothing as compared to the increasingly terrible pain I lived with for the last few months! Any pain I do have now is healing pain and it will be diminishing every day.

Today the food comes regularly. Cheerios and a cranberry muffin for breakfast, with tea and OJ.  There was yogurt, but I don't care for that so they took it away.  Lunch was a little cheese omelette with some veggies and a few potato wedges. There was more tea and some cranberry juice, as well as jello pudding for dessert. And I mean actual real jello pudding, not the no-name knock-off stuff.  I ate every bite.  

I have been up for a couple of accompanied walks along the corridor and they want me up at least once more today.  Walking to and from the bathroom doesn't count.  I'm drinking lots of water and no longer feel so completely parched.  I also sat up on my chair a couple of times for a while and was even able to wash myself somewhat. No shower allowed as yet with a drain and of course dressings, so a kind of self sponge bath was accomplished with the psw on standby in case I felt faint or sick.  It felt good to get my own nightshirt on afterwards instead of a hospital gown.  

The doctor is pleased with my progress and I just might get out of here on Saturday.  Yay!

One really funny thing you might want to know...I now know exactly how my groceries feel.  The hospital wristband has both a QR code and a bar code on it.  When they do blood work they scan the bar code. When they bring meds or take vitals, they scan the QR. In the case of meds, their cart is an electronic work of art. The scanned QR code allows a small compartment to open and there are my assigned meds. The nurse puts them in the wee little cup like you get your ketchup in at Harvey's, and hands it to me.  

The nurses and PSWs have been great. I'm at Victoria Hospital in London, Ontario and have been receiving fantastic care. One of my doctors has been in twice and my main surgeon once so far today. Both are pleased with my progress and so am I.  

Keep sending those positive thoughts.  In five weeks or so, when I'm pretty much healed, then I will start radiation, and that will be a whole new adventure.  In the meantime, stay tuned.  I believe all the positive energy has helped so far.  Love to all. 

The Countdown is On

It took a fair amount of persistence on my part to get here.  Thankfully I kept on returning to the emergency room until I got some tests done and at least reached a diagnosis.  

I'm so glad that my surgery is tomorrow.  Each day the pain seems to be worse, and this thing inside me is definitely growing.  It interrupts my sleep so that I probably get about 4 to 5 hours per night in total.  When I do sleep, I dream horrible things like that the tumour is the size of a canteloupe instead of the golf-ball to lime size it is.  

The current surgical plan is to remove a section of the abdominal muscle.  Not this past weekend, but the weekend before, I had a CT scan.  I know I already had one before, but that one was more to just determine that Yes, there is something there.  Based on that scan and the following biopsy, a new, more complete CT scan was ordered.  Several things happened while I waited for that appointment.  

Since I had already had cancer back in 2021, that surgeon regularly monitors me.  She had gone off on maternity leave and at my last appointment I saw her practice partner instead.  That was in January or so.  She indicated at that time she would see me in six months and we'd schedule a scan to make sure all was well.  That appointment was coming up soon and while I was still dancing with the doctors at the ER trying to get someone to take me seriously and do something, I actually called that surgeon's office to see if we could move my appointment up a bit.  I just knew they'd do something for me.  They couldn't move it but I did decide to keep the appointment.  Just before that appointment was due, and as a result of the biopsy, I ended up scheduled for the complete CT scan. This scan ended up being scheduled for 2 days after my upcoming appointment with my original surgeon.  I finally ended up with a surgeon in London, Ontario who said I should keep the appointment for the CT scan here in my local hospital because to wait for them to have time to put me in would only delay the surgery.  

In the meantime, my first surgeon returned from maternity leave a few days a week before coming back full time this month.  She was reviewing files and happened to notice correspondence from the surgeon in London.  I had listed her as one of my doctors on their forms because she was the only doctor with knowledge of my cancer history and I figured she'd want to know anyway.  So she called me up and asked, "What the hell's been going on?"  I told her the whole story, lamenting the fact that my former family doctor had closed her practice about 2 months after my last cancer surgery and that me and all her other patients ended up orphaned.  An hour later, as I was driving home from work, my phone rang and it was her again.  She told me that she had reached out to a colleague at the local medical clinic to ask if they knew any doctors taking patients and she explained my situation.  I had to pull over to write some information down because she then told me the doctor said, "I'll take her."  Hallelujah!  I got a family doctor!  Not only that, but when I went for an initial meeting and discussed how my previous doctor had orphaned my family, the doctor said they'd take my husband and son too.  And just like that, after 18 months or so, we all got on with a new family doctor.  

The day after I met my new doctor, I had my CT scan and they said they'd forward the result to my doctor in a few days.  Thrilling words "my doctor".  

The CT scan was not as pleasant? smooth? easy? as the last one.  The technician was not good with the IV and it hurt throughout the experience.  Still, it was one more thing to check off on the list.  I called my doctor's office a few days later to ask that they make sure the results are also forwarded to my surgeon.  A while later they called to confirm they had sent the results to London and then told me that the scan was clear.  Except for the cancer we already know is there, they didn't find any other cancer.  I'm still afraid to believe it, but it's very very hopeful news.  

As it happens, though, I do have some really positive feelings about the upcoming surgery.  Any pain will be healing pain and will diminish with time.  As I have said before, the post-surgical pain can't be any worse than what I'm living with right now.  I will do whatever it takes to get well again.  It so happens that I also had a visit from my late bff in one of my dreams recently.  She didn't speak.  She just walked up to me and we had a long hug.  I thought about it after I woke up and I believe she was offering comfort and reassurance.  I think if things were going to go bad, she would have said something.  It was good to see her.  She doesn't visit me too often and I really needed this.  

Today my coworkers threw a little party for me to wish me well.  We had veggies, charcuterie, chips & dip, and even a cake.  There was a lovely card with a Tim Horton's gift card inside, and even a couple of gifts - a dreamcatcher that says "children matter", and a hair scrunchie, both of which were made here on the reserve.  One of our board members, who I absolutely love (she was on my committee when I was a project manager), also dropped by and had a gift of a kind of small tote bag that she had made.  I'm really going to miss everyone while I'm off.  It's so fantastic to have a job you love and coworkers who truly truly care.  

I probably won't be able to add any more to my blog for a while, but I do promise to provide an update as soon as I can.  Catch you all on the flipside.