I am just dropping in to say they got the PICC in!
That is not my arm. That is a very sterilized version of what a PICC looks like. The “line” goes up inside my vein and straight into my chest. Mine is currently all bandaged up, I’m actually just off to the hospital now to get the dressing changed. My arm is currently red from the surgical wipes and probably swollen and bloody. Funfun.
I wish I could say I went through the PICC insertion procedure with flying colours. But unfortunately, my predictions of it going horribly were correct. I think we can sometimes sense these things.
I’m “blessed” with small veins. Which means accessing them always turns into a stressful and painful experience. But as my mom pointed out, it’s because of my tiny veins that we were able to detect the cancer early (via restricted blood flow + blood clot), so I can’t get too angry at them now.
They brought me back into a large room very similar to an operating room. I had to lay on the exact kind of bed/table that they do surgeries on. I hate being on those things. Thankfully, the freezing actually worked on my skin, and they were able to get the line in through my vein all the way to my armpit – then it just stopped. My vein seized up, and seemed to get smaller so they couldn’t push it through any more.
At this point, they were injecting me with contrast dyes, taking tons of x-rays, and called the doctor in. Even though I couldn’t feel the line inside my vein, I could feel that things were being moved inside my body, if that makes sense. And they were squeezing and pushing into my arm at the insertion point which hurt like a bitch.
Anyways, it’s not the pain that upset me. It’s the fact that I’m sick with cancer and have to put up with this crap in the first place. Laying on the table with a face mask on, watching the x-rays flash on the screen and seeing the dark shadow in my chest, hearing the nurses and doctor talk about what to do with me. It’s an unwelcome reminder of something I can forget about when I’m at home – I’m a really sick person.
I don’t think I’ve mentioned this before, but you may have already gleamed it from the information I share. I am a big fat wuss when it comes to hospital procedures. I have always been disturbed at the idea of doing things to my body – including cutting, stabbing, and poking it. Surgery was (and still is) one of my worst fears. Having to modify my body in some way using items from the outside world (ahem – like the three screws in my arm), make me want to cry, throw up, and pass out all at the same time. So even if the PICC is a small thing to some people, having tubes hanging out of my arm 24/7 reallyreally weirds me out.
Anyone else out there like this? Currently my biggest fear is getting an infection while on chemo and needing a blood transfusion. Getting someone else’s blood in my body is something my brain just can’t compute. This whole cancer this is a nightmare for so many reasons.
So a few tears were shed yesterday and I was pretty weak after just from the stress of the experience. But as my oncologist said, “they got the PICC in, that’s what matters.” And it was quite handy to have during chemo #5 yesterday.
The GOOD part of yesterday is that I got news on my most recent chest x-ray. My oncologist said there was a “marked improvement” compared to the one taken four weeks ago. I should be getting a PET scan after my next treatment, which will be able to show more detail on the cancer situation. It was fantastic news to hear after my mini breakdown in the morning. A boost in confidence that all this crap is really worth it. I’ll do anything to be skipping along cancer-free once again, arm tubes included.
During the month I stayed in the hospital, I changed rooms and beds at least half a dozen times. Patients were constantly being admitted and discharged, and other patients would play musical beds as a result.
When I woke up from my lymph node surgery during that time, I heard the nurses talking about bringing me to room 5614. I didn’t think much of it, even though in my doped-up mind, I knew my room was actually 6614.
I went in and out of sleep listening to the beeps of whirrs of the monitors around me. People puttered around my bed checking my oxygen, dressings, and blood pressure. Then I heard it again, “She’s going up to 5614.”
And that’s when I snapped to. “Don’t you mean 6614??”
“No,” the nurse said, “you had a room change while you were out.”
This information sent me spinning into a panic. They were taking me to the fifth floor, the general surgery floor. Not the cancer ward on the sixth floor that had become my second home.
This was more than just a room change. I was being removed from my safe cancer bubble where everyone already knew my diagnosis. Where I was a cancer patient just by being there. On the fifth floor, no one knew. And I would have to tell them.
The first time I ever told a stranger I had cancer was to a nurse on that floor. She was making small talk while checking my IV. She asked me about my surgery, which led to an explanation about getting my lymph node removed. I remember searching for the right words. My voice dropped a few notes and my mouth went dry. Saying “a large mass in my chest” didn’t sound right. “Lymphoma” was so foreign my lips.
The worst thing about telling people I have cancer is watching their reactions. Everyone is horrified. I think it’s because I am so young and still look healthy. Maybe they think “If it can happen to her, it can happen to anyone!” Or maybe they think “Such a sweet girl to die so young.” (by the way, I want to get a shirt that says “I have cancer, I’m not dying”).
I’m equally horrified watching as their eyes widen, faces twitch, and you can see they’re about to launch into a story about their coworker’s daughter or cousin’s husband who has or had cancer. I actually don’t mind it when people bring this up, because it brings the focus off of me and my diagnosis.
It’s hard when I bump into people I haven’t seen in a while and they want to know what I’ve been up to. How do I drop the Cancer Bomb? Should I even drop it at all? Because shit gets serious once the C-Word comes out.
As much as I complain about my immune system keeping me from crowded areas, it’s also a slight blessing. Most days, I am perfectly content to hide out at home, in my cancer bubble. Because as easy as it is for me to yammer on about cancer on a blog, Facebook, Twitter, or in the newspaper, looking someone in the eye and vocalizing the words is one of the hardest things to do. I can’t wait until the day when I can say “Cancer? Oh yeah, I had that once.”
I learned a lot during my month-long stay in the hospital waiting for my Hodgkins diagnosis. I learned that I have “bad veins” thanks to their small size and ability to roll over. I learned that my bladder can hold more than a urine hat. I learned that nurses are the most amazing people ever. And I learned a lot of people have no clue how to visit someone in the hospital.
Well, I am here to help. These are based on my experiences. If I miss something, by all means, add it in the comments below!
Visits from friends and family were the main reason why I was able to keep my spirits so high during my extended stay. However, sometimes they provided a little more stress than ease. And I get the feeling some people didn’t stop by because they didn’t really know how to.
1. Call ahead.
There is something about hospitals that make people think they can just “drop in.” You really shouldn’t. Contrary to popular belief, inpatients don’t sit staring at the wall all day just waiting for someone to come in.
There are tests, procedures, needles, etc. I liked to get up for walks when my energy was high, and eating times were my favourite alone times. There is also a roommate to consider, who won’t want your entire extended family in the bed next door when they’re being wheeled in on a stretcher from the OR.
Towards the end of my stay, I got better at letting people know when my surgeries were and being specific about no visitors in the couple days that followed. But it was always a shame when someone would pop their head in and I would have to kick them out because the call came up for me to see the doctor. Something that could have been prevented with a phone call, email, or text.
2. Don’t stick around too long.
An hour tops. When you’re sick, it takes a LOT of energy to be “on” so to speak for visitors. Often just one visit was enough to zap my energy for the day. It was a good use of my energy, but draining nonetheless. I found 45 minutes was usually the best length, but be observant. If the person in the hospital bed is getting quieter and their eyes are glazing over, it’s time to make your exit. And please, make it a quick exit. Don’t say you’re going to leave then drag out the goodbyes for 15 minutes. That’s really damn tiring too.
3. Don’t cry.
My best friend Erika cried, god love her. I can tease her about it now, but the person in the bed should not be comforting the person in the visitor’s chair. I know it’s hard to see a loved one sick and hooked up to machines, but it’s even harder for a sick person to see someone cry over them. I hate feeling responsible for another person’s tears, even though I have no control over my being sick. If you’re upset upon entering the room, make an excuse to get out and regain your composure.
4. Keep the group small.
Three visitors at a time tops. Being around too many human bodies is exhausting. It’s noisy. It bugs the person in the bed next door, and I think it stresses the nurses out.
5. Be useful.
This isn’t necessary, it depends on your relationship with the person you’re visiting. But it’s always nice if someone changes the flower water, fills up water glasses, or tidies up the bed area. Don’t ask, just do it. I hate answering silly questions like “Do you want me to put this over here?” I get asked a million questions a day, and useless ones like that make me want to pull my hair out.
…aren’t necessary. But I understand not wanting to show up empty-handed. If you’re going to bring something, make sure it’s useful!
Some of my favourite gifts included pyjama pants, magazines, unscented creams or soaps, pretty cards to decorate the wall with, and food. Not cookies or treats, but main dishes that I could eat instead of the gross hospital food. Make sure it’s well cooked, easy to digest, and kind of plain. Ask about allergies or medical restrictions if you’re bringing food or something to put on the body. Keep in mind that patients are often hooked up to an IV, which makes clothing difficult.
7. If you’re sick, STAY AWAY.
Even if you’re not, Purell the hell out of your hands before and after.
8. Tell stories.
After I finished filling my friends in on my situation, I wanted to know all the gossip from the outside world. Don’t assume a sick person doesn’t want to hear that stuff, for me it’s a fun escape. Something to talk about besides my illness. With that said, some people don’t have anyone to talk to about their medical situation, so be prepared to get an earful of complaints and jargin too.
9. Go for a walk.
My least active days in the hospital were those that I had the most amount of visitors. Don’t feel like you have to stick to the hospital room. If the person in the hospital is well enough, suggest a walk around the ward, a trip to the cafeteria, or even just hang out in the common rooms.
10. Be there after the hospital.
I’m sure anyone who’s been in the hospital has experienced this. All sorts of people come out of the woodwork when you’re an inpatient, and then drop off once you’re back at home. My best friends are those who’ve stuck by me sick or not sick, in the hospital or hanging out at home. Just because a person is out of the hospital, doesn’t mean they’re better. In fact, life can get a whole lot lonelier once back at home.