Chemo Care Package- What to Pack for your In-patient Chemo Days

My red Goodlife bag tilted on the mountain made from my unkempt bed. Without folding them, I placed a plaid pair of pajama shorts inside the bag to accompany the four pairs of loose-fitting tops and two thin pajama bottoms already inside. A small white pouch containing toiletries peaked out of the bag’s side pocket. 

Ten minutes earlier, I answered my phone to learn that a bed was available and within an hour, I had to check into the chemo ward at Victoria Hospital: 7thfloor, room 5A. This would be my hotel suite for a week. 

It would be the first of four in-patient chemo sessions and the week ahead was a foreign language to me. I didn’t know how to speak chemo, and my light bag was symbolic of my ignorance. Had I gotten my hands on some sort of “what to expect” guide, I likely would have lugged along a suitcase. 

I wanted to write this post to provide advice to youth and young adults who will endure an overnight stay in the hospital as part of their cancer treatment, but also as guidance for their supporters. I hope this advice could similarly be helpful for anyone who will spend a few days in an uncomfortable hospital bed tied up to an IV pole receiving any sort of treatment.  I won’t claim that this “guide” will be universal for all situations because the lists and advice are cultivated from my own experiences. When I reminisce on the months I spent in the hospital between chemo and surgery, I remember the time being less horrible than my expectations. I learnt to make my stays bearable and I wanted to share how. 


Chemo Care Package:

  1. The amount of pajamas or comfortable clothes as nights you will stay (unless you have someone who can wash your clothes and return them to you). You sleep on cotton sheets and will be receiving a cocktail of alien medications, a combination that may make you sweat relentlessly. You might puke, or generally just feel gross. Having multiple clean pairs of clothes to change into feels refreshing after wearing a pair of salty puke stained pajamas. 
  2. A few sweaters or a housecoat and slippers. It is nice to leave the bed and walk or wheel around the hospital if you’re able to. Having slippers and something to cover up will insulate you after leaving the boundaries of your warm blankets. 
  3. Your own Pillow. With your plastic-wrapped hospital bed you receive two pillows that have been sucked of any plumpness after dozens of heads have rocked around on them. Packing your own pillow is useful for supporting your lower back and to replace the uncomfortable complementary ones. 
  4. A light blanket. I bugged my nurses for warm blankets more than medication. Having my own blanket reduced this nuisance and can be helpful for your visitors if the hospital’s air is frigid as well as stale. 
  5. Toiletries. If you find item #1 useful, or if personal hygiene is a value you uphold, this package item will be a non-negotiable. It feels lovely to have a hot shower or to swipe away your sour smell with deodorant after hours of being pumped with poison; even if you just receive an awkward sponge bath from your nurse. 
  6. A literal or figurative visitation schedule. The small curtained-off area where you will dwell is large enough to contain your narrow hospital bed, a typically uncomfortable visitation chair, and the required hospital equipment for your treatment. I was fortunate enough to have multiple family members and friends who took the time to visit me and we learnt after a few days that having a visitation schedule is helpful. My visitors were more comfortable and stayed longer when they didn’t have to circle around me like I was in a coffin rather than a bed. By having a schedule, we all could understand which time slots worked for everyone, and they could easily fill my day with more personal visits. The time certainly moves quicker when you have people to spend it with. 
    1. Know your daily schedule. During my experience at the hospital, I would have social workers, physiotherapists, and teams of doctors periodically visit my room. I would also have an hour each day without medication and could choose to be detached from my IV pole. It was extremely helpful to know the scheduling of those elements so I could properly plan visits with my family members and my dog.
  7. Items to distract you. Item #7 depends on your personality and I can only suggest the items that kept me sane:
    1. Reading material. Whether you like magazines, novels, or Instagram feeds, this item will keep you company when you have no visitors. 
    2. iPad or computer (and headphones). In addition to this item, it is helpful to have a platform to stream movies or TV shows from. This can serve to distract you and your visitors, and it passes multiple hours quickly. If you’re someone who likes to fall asleep to the sound of TV, this item may be a non-negotiable.
    3. Attempt to learn something new. Try knitting, writing, or studying a health plan you’d like to adopt. I learnt to expertly paint my nails with both hands, and brushed up on my poco español. 
    4. Bring coloring books or mini crafting material. My sisters and I painted rocks for the Memory Garden at the hospital, and spent time adding color to outlined images in elaborate coloring books. My poor attempts at art were enjoyable, and it seemed to make the clock tick faster. 
  8. Snacks and food. I am not a “foodie” but apparently I drew my line at hospital food. It was great to have a granola bar, applesauce, or Mentos available in the tiny drawer beside the bed. I would leave my tray of mass manufactured food untouched and gorge on a bowl of soup or a half sandwich brought by a visitor. I felt better and ate more when I had my choice of food especially after feeling unwell most of the day. 
    1. A list of nearby restaurants and items you enjoy from them. This is extremely relatable for long stays in the hospital especially if you’d prefer outside food. Your visitors begin to learn your favorites as your taste buds change from chemo.  
  9. Earplugs or noise cancellation headphones. You cannot control who your roommate will be unless you choose to pay for a private room. I have an extremely hard time falling asleep to someone snoring and having a device to mitigate the unwanted noise was useful. 
  10. Your knowledge of your cancer. I regret not asking enough questions, and not understanding the cocktail of chemo pumping through my veins. I wish that I had researched what the medication would do to my body, or sought out advice from someone who could understand what I was about to experience. Your knowledge will be a very useful tool to pack in your bag. You will not be able to anticipate how your hospital stay will be, but your knowledge of your disease and medication will always be a powerful device.

Additional Tips and Advice: 

  1. You can ask for sleeping pills if you have trouble sleeping. Ask earlier in your stay if you think you will require sleep-aids because your nurse has to approve this with your doctor. 
  2. Some hospitals provide warm blankets and big socks. If you cannot bring slippers or a blanket, just ask your nurse for these items.
  3.  If you’re receiving anti-nausea medication but your stomach isn’t settling and neither is the water you’ve been drinking, you can ask your nurse to try a new type of medication. If you’re used to taking Gravol, try that variation. 
  4.  You can ask if there is a private room available after you have been checked in. During my second round of in-patient chemo, I hit the lottery and received a private room at no extra cost. After that happened, I began to make it a habit to check if any were available. You will get moved out if there is a priority case, like a quarantine situation, but I did luck out again for a few days after asking the question. 
  5. Being in a hospital can be uncomfortable and cause anxiety. If your medical team has not already prescribed something to ease your stress, ask your nurse if they can provide something to help. There are one-time medications that can reduce your symptoms and that simply dissolve under your tongue. 
  6. Puking continuously can cause dehydration. Your medical team will likely catch this and provide fluids through an IV, but sucking on ice chunks helps trick your brain into thinking you’re eating and will quench any immediate thirst. 
  7. Some hospitals have popsicles. Ask for them. 
  8. If you have a small dog, question if your pet can visit your room. I was able to bring my puppy into the hospital as long as we were discreet, and that my roommate approved. If this is not possible in your hospital, try to have someone bring your pet for an outdoor visit. I used to count down to the millisecond until I could be detached from my IV pole and wait outside for my stepfather who had Jax in the car with him.
  9.  Steal chairs. Although the space is tight, we often found spare chairs around that we could shove into the room as long as your visitors don’t mind touching knees. You will likely have a roommate during your stay, but if there is some time where your neighboring bed is free, open up your curtain barrier and let your visitors spread out in the room. 
  10. Get up if you can. Do your exercises, get to know the wards of the hospital, people watch in the cafeteria; do not stay confined in your bed. It helps to pass the time and it keeps your wits intact. Although I was exhausted and often needed a pair of wheels to get me around, it always felt nice to move my joints into different positions, and take in new scenery. 

My family members added many of these items to my bag, but lifted the weight just the same. My sisters would bring their computers with Netflix poised to open, or had bags of games and books to share. My parents knew to bring me food, always carrying coolers over their shoulders full of snacks they thought I might like. My husband would coordinate the visits with my dog, and remember to grab all my comforts from home. The most important thing your family, friends or partners can pack is their time.  

If I had correctly imagined how my visits at the hospital would unfold, I would have packed heavier. The items on the list, and the anecdotes described made my weeks at the hospital bearable, and I hope my care package is helpful for someone about to check in.

Chemo Care Package: 

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Do You Trust Your Body or Your Doctor ?

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My doctor had the education, the title, and that fancy framed diploma on his wall, but he did not have my body. 

When something is prominent in your mind, you’re susceptible to noticing that “something”more often. You can easily associate behaviours or situations as direct results of that “something” that you’ve become so acutely aware of. It’s called confirmation bias[1], a term coined by the English psychologist Peter Wason in the 1960’s, and it presents itself daily. My distrust of doctors is a very prominent bias in my mind right now and I have begun to see this distrust everywhere: in strangers I speak with, through cancer survivors I’ve met, and in tales I’m hearing for the first time from friends and family members. Stories about such a severe misdiagnosis, I want to scream HOW DID THEY NOT LISTEN TO YOU! 

For more than a year I would return to my doctor begging for some kind of diagnosis that would validate the very real pain I was feeling. but my family doctor never helped me when it was most critical. It was the same routine every visit. I would explain my symptoms: continuous loss of strength, increasing sharp and dull aches of the joint, and a general regression in the mobility of my right arm. He would ask me to stick out my right arm, hand open and palm facing straight ahead parallel to his. I would have to push against his resisting hand: upward, downward, left and right. It would get increasingly difficult every time I had to perform that ridiculous exercise with my doctor. I cannot fathom the amount of times I must have repeated that the pain I felt was deep inside my bone- an ache I had called it- but he focused on my muscles. He would repeat that it was my Rotator Cuff. He would repeat that the issue was a strained muscle. He would repeat that I simply needed to rest and stretch it. Maybe he had seen such an injury so often that the confirmation bias was in effect, but all that perception did was repeatedly ignore the tumour that was growing in my shoulder. 

My doctor placed me into a little perfect box constructed by typical symptoms and a general diagnosis. “Shoulder pain in a 20 year old female. Diagnosis must be the most common possibility regardless of whether this individual’s life activities actually suggest this type of injury…” I sat in that box until it was unbearable, but I was in that box long enough that the proper tests were neglected, and any complaints of pain became irrelevant. My tumour began as the size of a pea. It grew so large that it had extended out of my bone and wrapped around my humerus. Chemo couldn’t shrink it enough and removing my humerus and the majority of the muscles in my upper arm was the only safe decision.

Those little fucking diagnosis boxes are very prominent in my brain. Maybe that’s why my ear is more attuned to stories like mine. Stories about other people being rushed through the doctor’s office, their beliefs about their body ignored because they’re shoved into that little box of a common diagnosis. I hear them everywhere as if their old wives tales you hear from your mother. A family doctor, tells you it is nothing serious and places a prescription for pain killers in your hand. Months later you’re scrambling to cope with a diagnosis that you didn’t think possible simply because you trusted your doctor. My situation has taught me maybe it isn’t that easy anymore. We have question that trust.

The first story I came across was while I was working part time in a retail store. A woman approached me cautiously and asked if I was receiving chemo. The fact that I was bald, was no secret. I wore it proudly as I believe all women should but I know from experience that shedding the wig isn’t that easy. After briefly discussing my story she began to tell me that her husband had gone through radiation treatment, but had passed away recently. Her husband felt as though something was not right with his body, but his doctor told him otherwise. He ignored any discomfort or sickness he felt because his doctor had assured him of his good health, so he looked for no further treatment. When the tumour was found in his lungs and throughout his limbs after  a life insurance physical, they were denied because her husband was extremely ill. It had speed so aggressively, they gave him an amount of months alongside a treatment plan.  

The woman who supplied me with medical marijuana throughout my chemo process introduced me to her aunt who at that time was a sickly woman lying under a mound of blankets on the couch. Her aunt’s story was eerily similar to mine. She went to doctor after doctor complaining about a pain in her upper arm. She was sent away time after time, being told by doctors that it was a strained muscle because “it didn’t sound like it could be anything else”. Her lung cancer had reached stage five when they had finally properly diagnosed her, and she passed away shortly after I had met her.

At my new job, my co-worker recently told me about her son who was in an immense amount of pain and discomfort in his stomach. Their doctor sent him away informing him he probably had food poisoning. Within three days her son’s pain increased significantly and they brought him to the hospital with an appendix that had already burst and was threatening her sons life.

Another co-worker discussed a family friend who went to her doctor complaining about a lump she found in her breasts, but he told her nothing was wrong and attributed it to her hormones and her imagination. A few years later she was diagnosed with stage four breast cancer. Sadly, this same doctor sent another patient away: a male away who complained about a lump in his breast tissue. However this man trusted his body and he went back to that doctors’ office until he received the tests he wanted. It was breast cancer.

My own aunt (who is also a cancer survivor) was vigilant in returning to her doctor once she noticed a lump on her lip since her medical history had contained a rare type of cancer. She was told it was a zit and to let it go away. She has now had surgery on her upper lip to remove the skin cancer, but not after fighting for the treatment she required. 

 I could tell you many more stories of a misdiagnosis resulting in a critical disease or end of life. I don’t want to though. I don’t want to hear any more stories like that, let alone tell them to you. 

It makes me feel as though we are being let down by our doctors. Am I supposed to accept that helping people comes secondary to the apparent need of rushing patients through the office and allowing them to discuss one issue per visit as a solution to long wait times? Or am I supposed to understand that money is the altruistic desire for some doctors? Has the monetary aspect of the profession become more appealing to aspiring doctors than actually making sure people receive the treatment they deserve? I don’t have the answers but I do have the opinion that we now have to trust our bodies more than our doctors.

My doctor had the education, the title, and that fancy framed diploma on his wall, but he did not have my body. He did not experience the pain and restrictions that had begun to affect me daily. He did not take this into account, or listen when I was positive that the source was my bone rather than my muscle. His excuse at the end of it all was “It is just so rare, I didn’t think to check for that”. But is that approach helpful? Could that approach save someone’s life?  Was it simply easier to assume that whatever his medical textbook associated with my symptoms had to be the diagnosis regardless of my returned visits, and escalating pain?

 I listened to my body, and it was right. But what use is that when you have a doctor that does not listen to you. Everyone’s body, no matter how similar in functioning, has the potential to react diversely to the same stimuli. Two people can take the same medication, but one of them may experiences the negative side effects, while the other gets better. We are not supposed to fit into those static boxes of healthy or unhealthy. We shouldn’t be defined by categories with no grey areas.  We shouldn’t be sent away without the maybes being investigated. When our lives are the topic, it shouldn’t just be you’re sick -with the most common diagnosis associated with your symptoms- or you’re fine.

What resonates with me the most about the lack of proper treatment is that I know my doctor better than many of you may know yours. He works with my uncle and I’ve clinked glasses with him at my cousins’ weddings. I trusted him, Why didn’t he trust me? Why didn’t he send me for the MRI like I had asked? Why hadn’t he exhausted every option rather than settling on a diagnosis and sticking with it? Why hadn’t he believed me when I said that I was sure it was my bone? Again, I don’t have the answers. I can only infer that some sort of confirmation bias was in effect. The more that I returned to him with complaints, the more it confirmed that the issue was with my rotator cuff. He likely would have seen that injury so often in active females which would confirmed that I was just another example of it. I fit so neatly and so perfectly into that tiny box of what’s typical. 

So do you trust your doctor or do you trust your body?

The error in my story is that I did not trust my body enough to challenge my doctor’s opinion. I was content sitting in that little box neglecting the messages my body sent daily like a needy boss. 

It is natural to ponder the “what ifs”. I do think about how different my life could be if I had pushed him harder and refused to take no for an answer. If I accused him of improperly caring for me, would I have a functioning arm? Except, I didn’t anything but follow his orders and give up when I was sure nothing or anyone could help me.

Returning to the core question of this post, I believe you must trust your body above any advice you’re given. You’re doctor does have the tools to properly diagnose you and I believe that advocating for your health should be the iron that sharpens those tools. You should trust your doctor, but you should trust your body more. 


[1]Gale, Maggie; Ball, Linden J. (2002), “Does Positivity Bias Explain Patterns of Performance on Wason’s 2-4-6 task?”, in Gray, Wayne D.; Schunn, Christian D., Proceedings of the Twenty-Fourth Annual Conference of the Cognitive Science Society, Routledge, p. 340, ISBN 978-0-8058-4581-5OCLC 469971634

Inside the Poisoned Mind

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I was warned that some medications paired with my chemo regimen would adversely affect my mood. It wasn’t until my third round of five-day chemo, that I distinctively felt my mood alter. I simply mean that I went fucking mental. I was nasty, and rude to my family members, and I remember quickly thinking that I should wheel my silly IV pole out to the middle of baseline road and see who dared to hit me. I had a cloud of hatred following me everywhere and it poured self-pity down on me. I wallowed, but I wrote. I wrote because this wasn’t my real mind working, it was the work of a foreign mind corrupted by chemo and impossible-to-pronounce medications. A mind corrupted by poison.

However, I knew there would come a time where I would want to return to them, even if just as a reminder of my insanity at time where I sincerely thought all hope was lost. But mostly, I just like to laugh at them. Here’s one for perspective:

Someone had to say it, and I knew no one else would when they felt the need to pour positivity all over me: Cancer had taken next to EVERYTHING from me. Could I even say I was myself any more? I wasn’t a runner anymore, I wasn’t going to complete tough mudder anymore, I couldn’t cook without someone to do next to everything for me anymore. I can’t do so many things that I was sure made me “me”.Cancer had taken so much of me away from me. But as truthful as I often thought that statement was (and I could have preached this belief on a hill top today), I couldn’t be blind to the things it gave me, oddly enough. It gave me trust back in my relationship with Tim, It gave me all of my sisters back in a new way, and time spent with my family which only brought us all closer. And even though I had lost so many friends, Cancer had given me the best one, Jax. 

My thought process during this piece shocked me, but it also worked to remind me how inconsistent my emotions were at this time. I went from rejecting any thoughts of me still being myself (because I couldn’t so easily exercise anymore?), but then just as quickly was able to be thankful for the love and support of my family. I told you I was mental.

I laid awake all night with a significant amount of tranquilizers in my system but none causing my eyes to droop or glaze with intentions of sleep. My attitude would change in a matter of seconds, as if some cloak was laid over to smother any happiness I owned. I feel like anger, no hatred was secreting from my pores, and I can feel my face contort into a snarl. I resented every second I had to stay in this hospital room. At that point, a nurse sauntered into the room, and I knew I had my first victim of the day.

Not only was I mental, but apparently I perceived myself as some sort of a monster as well.

Here’s another excerpt:

By my third round, I was more than half way to my personal finish line with two full rounds of chemo and surgery all in my past, but my ribbon seemed further away than ever. I had walked into a wall hard enough to wind my strength and damage any flicker of positivity left. My motivation was left on the floor along with the bits and pieces of my life, all of which I hadn’t figured out how to pick up yet. And how could I even with just one arm?

Why was I so stuck on positivity? Probably because I was convinced I needed to maintain that facade. Not everything is solved with a positive attitude. I think it is far more valuable to recognize what your feeling and let yourself feel it. By shoving these negative and diminishing thoughts under a carpet of positivity, we are never truly dealing with them. Of course it is always a good thing to remind yourself of all the positive things in your life, but that doesn’t mean it works to make those other feelings completely disappear if they aren’t properly dealt with.

Was this my life now? Having to go pee has turned into an emergency; an urge that comes on suddenly and cannot wait unless I want wet pants. Its a mad rush to get in and out of the washroom to prevent an accident because I have to bring my new extremity with me — my IV pole– fussing with it and trying to get it to roll the way I want, all while concentrating on not peeing. The saline bag hits my head, the cords get tangled around the corner of the bed, and I’m struggling to make it to the bathroom in time. Great. I’ve lost my hair and my dignity.

No. NO NO NO. I had not lost my dignity at all. Yes, it is a little embarrassing to find yourself uncontrollably peeing your pants while you are centimetres away from the washroom, but it certainly does not mean that human dignity is lost. It does not mean you are any less worthy of respect. Thankfully, by the end of my chemo rounds this “emergency” had become an inside joke. All I had to say was ‘uh oh‘ and every one of my family members would rush around me to get me to the bathroom on time. If I didn’t make it, they didn’t make me feel bad, because, well, why should they have?

Although I can laugh at some of those excerpts, I do cry at others. It was not easy to be reminded that a part of my mind had succumbed to the poison, and essentially disrupted my way of thinking and behaving. I write this to remind you of how powerful these medications can be, and the adverse affects they may have on your physiology. I do hope you get a giggle out of my irrationality, but I also hope this post can remind you in those times where the poison if corrupting your cancer journey, that it is simply just the poison and not a loss of self.

Emily Lane