It’s been a week since mom was admitted to the hospital, and she continues her stay there – we all do! Chemo is on hold and cannot be resumed unless mom is well enough, and this currently involves her bowel obstruction. She has been on a full liquid diet since last Wednesday in order to aid with the obstruction in her colon. Mom has also undergone some further testing to take a look at what’s happening and for the best steps forward. Over the last 8 days, the hospital staff team (hospital doctors, nurses, palliative pain management doctor, patient care coordinator) have been working at finding solutions to manage a very painful situation. This requires some experimentation with new medicines, various doses of medicine and various ways of administering the medicines so that the body is able to absorb it. As I mentioned in a previous post, sadly some of the ways the medicines need to be administered (under the skin) are incredibly painful and when these are scheduled every 4 hours, or more often if needed, this alone causes fear and anxiety for mom, and we of course experience a degree of this suffering with her. It comes as no surprise that each nurse has their own style of administering, their own personality and their own level of care for patients – which in turn naturally means that not each nurse is the best fit for mom’s needs. It’s a difficult aspect to navigate sometimes. For mom I imagine it’s a sense of feeling powerless at times, and just praying for a good nurse for the day or the night or even just the next injection. For those of us by her side, we try to be there but not be in the way and we try to create a good rapport with the nurse. It can be a fine balance of looking out for mom’s needs while respecting each nurse’s individuality. I can’t say we are always successful, but I do know that we make a good team and really try hard to ensure a patient centered (mom centered) care. Yesterday in the middle of the night after an interaction with a less favourite nurse who seemed to lack interest in doing anything beyond the bare minimum, mom and I couldn’t fall asleep right away. We were both upset from the way the pain meds were administered, mom was in pain, yet as we laid in the dimly lit room we commented that we don’t know what the nurse herself is going through or what her life experience has been. Through tears, and in a very soft voice mom closed her eyes and repeated a number of times “may God bless her, may God bless her.” (Nech ju Pán Boh požehná, nech ju Pán Boh pozehná)
In the end we were the ones who were blessed when the next scheduled pain medicine arrived a few hours later – with a different nurse (one of our favourites) because our night nurse was on break. Little things that prove to be big gifts in such a sensitive situation.
I share our nurse experiences from a patient and family perspective and I have to say that by far we have been incredibly blessed with wonderful people involved in mom’s care. The few tough experiences we’ve had so far are an exception, not the rule and we witness daily how hard the nurses work to provide the best care possible for their patients. We are so appreciative of the genuine care, the kind approach, the random 2am conversations or personal connection that most of these nurses and hospital staff show our family.
Mom’s bowel obstruction continues to be monitored and is showing some improvement. It is tough to say this 100% confidently as it is sometimes hard to know if it’s the medicine that’s helping, or the liquid diet, or other factors and I am not sure what is expected once food is re-introduced. One of the things we have learned in the last few days based on some tests is that the bowel obstruction appears to be “caused externally by the cancer”. The diverticulosis seems to be ok at the moment, and the main contributing factor to the obstruction appears to be the cancer itself. I don’t have enough information at this point to say whether this means the cancer is spreading or whether the tumour is growing and pressing in on the colon or whether it’s a combination. It hasn’t been clearly defined for us yet. There is a lot of watchful waiting, observing and monitoring happening at the moment and each day brings new layers of information, questions, hopes, worries and sometimes answers. Lots of prayers too.
We are so grateful for your reaching out, support, prayers, love and hope!