A Day in The Life

Re-posted from FB note from 28 Dec 2015.
Depending on the day and where we are I’ve tried to capture our “new normal”, how our daily routine has changed and what it looks like as well as uploaded some photos. There is so much more that goes on and happens, but hopefully this gives you a little bit of an idea.
At this stage a chemo cycle is 3 weeks long, 3-5 days of chemo as an inpatient hospital then 2ish weeks of “recovery” at home. Every week we have a day as an outpatient in clinic to have a check, get supplies/medications and replace dressings. Violets treatment will be 5 cycles like this, then surgery to remove the tumor then another chemo round before radiation and a few more chemo rounds. After that there is antibody therapy.

At Home

Things haven’t changed that much at home, it’s just been getting use to the medication routine and keeping a little be it of a closer eye on Violet.
  • 0700 – stop continuous feed. Wake, sometimes we’re lucky and the other kids will play quietly and Violet will sleep in
Be-Bop.. the feeding pump, and his specially built pole and trundle.
0730 – Breakfast & start bolus feed via be-bop (feed pump for the NG tube)
  • 0800 – Morning medications (slow release pain, anti fungal & antibiotic[Mon-Wed])
  • 0830 – Bolus end
  • Throughout day, if she’s feeling nauseous we can give her antiemetics
  • 1200ish – Lunch & bolus feed
  • 1600ish – GCSF injection
  • 1800 – Dinner, bolus feed & antibiotic [Mon-Wed]
  • 2000 – slow release pain med
  • 2100 – start overnight continuous feed
But wait… just when you think you’re in a rhythm at home, there are any number of reasons to head back to hospital.. Temp above 38 / Shivering or unwell after central line access / Difficultly breathing / Bruising etc. As the immune system is beaten up during chemo any infection can be very dangerous, so getting back to hospital to start observations and antibiotics is crucial.

Clinic day

  • 0630 – Antiemetic before/when she wakes

    I’m learning how to be a great backseat driver.
  • 0700 – Wake
  • 0730 – Breakfast & morning meds (slow release pain, anti fungal & antibiotic[mon-wed])
  • 0800 – Drive in, hopefully antiemetic is working by then, but one of is sits in the back with Violet (to catch the motion sickness vomit)
  • 0900 – Arrive and spend 5-20 mins looking for carpark
  • 0925 – Coffee (important part of every day)
  • 0930* – Checkin, get height and weight taken
  • 1000* – Dressing change and central line plug change

    If we’re luck we get a “gift bag” or two during the 30-50 min drive.
  • 1100* – Oncologist consult
  • 1200 – drive home, one of is sits in the back with Violet (again)
* – much waiting (1-6hrs) can happen, also mix in some other random other tests (ultrasound, audiology, xray, bone scan, MIBG, CT, MRI, GFR, urine, nasal/anal swabs)

Hospital day

  • 0000 – Observations (obs) – temperature, blood pressure, pulse, oxygen. If in isolation, the nurses wear plastic gowns (like raincoat), so it’s quite loud.
  • 0400 – Obs
  • 0500 – Blood taken
  • 0600 – Medication
  • 0730 – Breakfast
  • 0800 – Meds & Obs
  • 0900 – Dr visit
  • 1000 Allied health visit (occupational therapist / social worker / dietitian). Hyperhydration start (increase IV fluids for chemo)
  • 1200 – Obs
  • 1230 – Lunch, if we’re lucky the smell doesn’t make her vomit. Most of the time in hospital Violet is so nauseous that she doesn’t eat, she also doesn’t like to see or smell it (so we can’t eat in front of her)
  • 1330 – Chemo (this varies depending on the cycle, she can be hooked up to 30mins or hours)
  • 1600- obs, antimedics, hyper hydration ends
  • 1730 – dinner (cover nose to hide smell)
  • 1900 – Dr visit / nurse shift change
  • 2000 – Obs & meds
  • 2200 – meds
All day – safely capturing and measuring urine, faeces & vomit (ie. Chemo is cytotoxic, so any output up to 7 days after administration needs to be disposed of safely using gloves, even when we’re at home)
The first day of a chemo cycle is a full clinic day then move up to the ward at 5-6.

Other Bits

Beyond the day to day, some things carry over (regardless of being at home or hospital)

Medications

We’ve had to find another cupboard to keep all the medications in
It’s not as easy as drawing up liquid and giving it in the NG tube, there are some capsules to mix with water, tablets to be halved and crushed, power to mixed in 10ml(but only give 6ml). There are viles to mixed with water then injected. Plus the boxes of feed needed to keep Violet’s nutrition up. We’ve got into writing everything down so we know when we gave what and if needed can tell the ED/Doctor. The regime/timing of meds in hospital is the same as home, however the antiemetics are given more regularly and via IV (so they don’t come up again). Surprisingly, panadol beats fevers and headaches, even over the hardcore meds.

In the middle of the night…

 On top of the additional bad dreams and wet beds there’s the ‘beee bop’ of the feeding pump. In hospital the added pleasure of IV pump alerts, doors opening and closing, the the noisy “raincoats” nurses wear if we are in isolation.
Colleen and I take turns of “sleeping” at the hospital. With all the activity it’s not easy and are heightened awareness that we can get a little irritable.
…couch during the day.
Bed at night…

Blood

I knew a little about blood before this, but now understand a whole lot more. Chemo knocks Violet around a fair bit, and based on her results as to how as to what they do..
  • Low hemoglobin – full transfusion (Violet has had about 4 to date)
  • Low platelets – platelet transfusion (Violet has had 2 bags of platelets)
  • Low white blood / neutrophils – not much can be done but wait and be very cautious not to expose Violet to anyone who’s sick.
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