The Hiccups

Cancer treatment has multiple touchpoints; by this I mean multiple departments are involved, there are many phases of symptom progression and of treatment plans, and holistic care can be cumbersome to manage. This leaves room for setbacks, “hiccups”, and it is very unlikely that from virtual visits to outpatient appointments to Emergency visits and inpatient stays, that things go smoothly. As I sit here typing from my hospital bed with another stent infection, it’s been clear to me that things are inevitably siloed. Setting expectations is important, but moreso, self advocacy really comes into play. When do I speak up? What can I do to stop or avoid hiccups, and when can I reduce my stress when they do happen? If you experience any of these situations, I don’t necessarily have a “fix”. Some of my earlier posts do help by mentioning questions to ask your care team, but I think I more intend this post to be in a venting capacity, to hopefully make you, and me, feel less alone in the experience of these “hiccups”. They’re normal to the process, unfortunately.

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Things I’ve Experienced:

• Feeling Forgotten

  This most often happens in the Emergency Room. Things (appointments, etc) are often running behind schedule so try not to let that get to you. But, with ERs in particular, a lot of hospitals don’t have enough inpatient beds so you spend a lot of time after initial arrival and treatment waiting for a bed to open up for admittance to an inpatient unit once you’re stable. Sometimes you have an ED room or cubicle, and sometimes you are in the hallway unfortunately. (I recently spent 30 hours in a hallway stretcher). When you aren’t hooked up to monitoring equipment, it feels like less people are keeping tabs on you; its often hard to remember and then locate your nurse from within the sea of nurses when you need them, and the specialists can be slow to make their way to you for assessment or to relay the plan. I often struggle with questions like: how do I track down my nurse for pain meds? What’s the plan for tests, symptom management, and multidisciplinary care? What specialists are coming to talk to me? Can I eat? (They forgot to offer me a menu and a meal this time too). If I don’t track these answers down and take charge of my situation many of these go unresolved or unanswered. Or, perhaps they just take longer than I would anticipate, but self-advocation definitely helps moves things at least a little faster even from a hallway bed. I ask any nurse (or my mom or dad gets impatient and asks our question:) ), and I stay persistent if 30 minutes passes without a response. I also learned that nurses often don’t wake you up to administer pain medication if you’re sleeping as a rule of thumb, even if you ask for a scheduled dose to stay ahead of it. That was super frustrating to hear because inevitably I was then waking up in pain all the time. They suggested setting an alarm for the times when the medication was due but I would likely be asleep so I could ring for my nurse; not ideal, but workable.

• This is something you could have told me to look out for

  This most often happens when I have a procedure or a symptom that gets resolved and I am discharged. The discharge instruction packet of information has a lot in it but somehow always seems to miss what I think is most important in the follow ups - does this need to be repeated and when? I had a liver stent placed three months ago and nowhere did it say it needs replacement every three to six months. Needless to say I was more than startled when I woke up with a 105.3 fever and an infection in it right at the three month mark. I would have looked out for symptoms more actively, and known this could be the culprit had I been told what to look out for around this time.

• Complications and Readmits

  This can be discouraging but helpful to know that it’s common particularly after a big surgery. Two steps forward and one step back is still moving forward! And it’s important to listen to your body, call your doctor, and go back in when recommended. Everyone’s body is different and so is the discharge timetable and recovery process. The hospital doesn’t always get it right on first discharge. I have ended up coming back for an additional post-procedural inpatient stay or ED visit more often than not. While frustrating, I have never regretted airing on the side of caution and going back in if I have, for instance, spiked a fever or symptom I was told to look out for. I call the on-call doctor number who alerts the ED that I am on my way so the process is pretty streamlined when I arrive.

• Holistic Treatment: When Departments Don’t Communicate to Achieve Multidisciplinary Care

  Honestly, multidisciplinary care and cross-departmental conversations, referrals, etc. have come a long way in my 23 plus years as a patient, but there are some areas still lagging. Staying on top of referred appointments is cumbersome but necessary, so stick with it! Having a healthcare proxy, doctor list, to-schedule list is also helpful. Also, because healthcare is so siloed, it’s often hard to consolidate all the care you need and treatment you may want particularly if it seems less “necessary”. This could be for things as straightforward as second opinions, to alternative medicine. For instance, many hospitals offer massage, yoga, acupuncture, make-up classes, art…you name it, but you have to ask for it. It’s definitely worth asking, the distraction from the pain and disease fatigue is always helpful. I have made holistic care in these ways more of a priority recently and I am seeing a positive impact, and it doesn’t bother me that I need to take on a more controlling role to make it happen/get it scheduled.

• Treat Me Like an Individual; Take my Medical History into Account

  So many times I will be given a course of treatment and told statistics that do not factor in my individuality; most obviously, my body reacts differently to pain medication having been off and on them for so many years it takes more than one would assume. Having no spleen, no thyroid, no colon, and only part of my pancreas also skews the statistical information they’re going off of; like how long a liver stent might last before needing replacement. Being given survival statistics of a first-time cancer patient may give false hope or be less accurate because they are not looking deeply at my medical chart, accounting for my genetic mutations or cancer history. So, I try to air on the side of caution whenever I can and remind myself that being a squeaky wheel does not make me a hypochondriac. I tell them not to overpromise and underdeliver. I am not a statistic, my case is complicated and its a long history.

• Weekday vs. Weekend; Night vs. Day on an Inpatient Stay

  There is a difference in care team coverage, procedure access, and information during these times with more availability and clarity during weekdays and days in general. For instance, bedside or inpatient procedures you end up needing one are often done during the week not weekends so arriving to the ED on a Friday, let’s say, I will sometimes get admitted but just symptom-managed, not treated, until the following Monday. Discharges are less likely over the weekends. Medication adjustments are less likely during the overnight shifts. So if you end up needing more pain medication than you are written for, it is sometimes difficult to have that increased until the day shift starts at 7:00am. (7:00am-7:00pm is a typical day shift inpatient here in Boston.) What day I get sick and admitted is obviously unavoidable and inevitable, but it’s helpful to know this to manage the timeline of care expectations I have and why things might feel like they are going slowly. Trying to get my medication needs straightened out during the day shift to continue in a rhythm overnight has also helped me feel better.

• ED vs Inpatient vs Outpatient

  These can be completely different experiences in the hospital despite being similar providers and medical situations. There are different variables for each so expectations should also be different, and realistic. I’ve had plenty of interesting roommates, and roommates with completely unrealistic expectations, so the best advice I can give is to manage expectations and be mindful of the difference between complaining and self-advocacy. You may need to be more accommodating and flexible in situations or spaces that are shared such as double occupancy rooms, waiting rooms, ED hallways etc.

• Symptom management

  Treatments, medications, and cancer itself come with symptoms. From pain to weight or hair loss, nausea, neuropathy, etc. these things need to and for the most part can be managed either completely or mostly managed with other medications or other methods of interventions, like diet changes for instance. The amount of intervention needed really is different for everyone so I’ve learned to be patient when adjusting them to get the symptom itself under control. It’s a process that definitely takes time, adjustment, and open communication with my care team while amounts are adjusted or a different intervention is tried. Most recently, for instance, I was given fluids for dehydration and the amount was too much. This lead to fluid retention in my legs and abdomen which needed a medication to drain. The appropriate amount of medication required also needed to be tweaked and adjusted in order to have the right amount of draining, and I just had to be patient through that back and forth process.

• How Many Eyes are on my Case - Tumor Boards

  My cancer is rare and my oncologist is not a Pancreatic Neuroendocrine Cancer specialist, she is a Gastrointestinal Cancer Oncologist. This often makes it hard to know what trials are available to me more specifically, and also to what the backup plan would be if the current treatment regiment stopped working - something a PNET Cancer specialist would know and communicate more of. I am reassured every time my medical case goes in front of the Tumor Board. This is a group of doctors within the entire Gastrointestinal Cancer Department at DFCI that include the PNET Oncologists. This can reduce the hiccups in communication of what backup plans are available, bring them to my attention sooner, and make me feel more confident in my team. It helps reduce the amount of drug trial research I have to do on my own, or that my mom so graciously does for me, and helps my doctor streamline and identify trials that I might qualify for, and should test for, to ensure I have as many backup plans as possible. I routinely ask the Tumor Board schedule and when my case will be presented to them. Gotta keep kicking that can down the road as long as I can and always do my best to know my options!

• Teaching Hospitals; Professionalism and Bedside Manners

  Not every provider has the best bedside manner. In selecting primary providers I’ve often had to weigh just how important the rapport I have with my provider is. I once had an orthopedic surgeon tell me I was stupid for skiing the week before surgery since I fell and broke my leg (so he wasn’t altogether incorrect), but he was the best of the best, so I still chose him. More recently, in teaching hospitals, and since the Covid days more specifically, I’ve noticed an uncomfortable informality in my interactions with some providers and trainees. I generally appreciate and enjoy friendliness, good rapport and banter, but sometimes I just want to shout “read the room”. If I have a fever and have been stuck in a hallway bed in the ED for 30 hours, I don’t want the tech doing a diagnostic ultrasound to be giggling and laughing about her weekend antics with her trainee while holding the device to me. If I am entering into treatment with an uncertain outcome, I want the tone to be positive and hopeful, not timid and over-cautious; if the doctor has made their recommendation and we are going with it, I don’t want the Nurse or Physician’s Assistant’s worries over outcome or symptoms to take up all the air in the room - the decision has already been made. If you’ve ever felt that “read the room” hiccup, just know you’re not alone. It’s also important that I note: this goes both ways and includes being respectful and understanding of your care team too; patients should also have good manners and be kind to nurses, providers, patient care specialists, environmental services staff, etc. After all, they work so hard and often times the hiccup is out of their control.