How I managed my communications with Health Professionals

I was contacted by many people, registrars, doctors, surgeons, anaesthetists, nurses, administrators, dietitians, oncologists, and anyone else interested in my welfare. At times my thoughts were all over the place, I was confused, overwhelmed, and scared. I found that writing everything down helped me manage my cancer journey.

1) I documented everything. I made up a timeline of events and appointments, and a chart to show where everyone I engaged with fits in. (Examples below)

2) I made sure I had a notepad and diary by the phone with my NHI number written down.

3) When talking to people on the phone, I always asked who I was talking to and asked for their extension number. I asked them for a card when talking to someone face to face. It saved me a lot of time and frustration if I had to contact the hospital later.

4) I was always honest, respectful, and kind no matter how I felt. My cancer journey was very emotional. At times I felt angry, frustrated, depressed, and frightened. But that didn’t excuse me from being disrespectful.

5) I tried to maintain a sense of humour throughout my journey. It is hard sometimes. I wrote this whimsical piece to my family before staying at the Cancer Society Lions Lodge in Hamilton where I was getting radiation treatment at Waikato Hospital.

On Bail, March 26/04/2024

Good news! I have just received my summons to start my sentence on Wednesday next week. I am staying in a large open-plan facility in Hamilton where all meals and accommodation are free. I have been assigned cell 40 in the dangerous prisoner wing. Subject to good behavior, I will be released on my own recognisance for conjugal rights over the weekends. I have my own cell with an ensuite and regular inmate transfers from the accommodation block to the correctional facilities. I will try my best to follow all the rules & regulations and return to the community fully rehabilitated by the 8th of May 2024. After I have served my sentence, I will be monitored regularly by my parole officer over the next few years to make sure I don’t re-offend.

My Timeline

7/7/23 Saw GP re lump under right-hand side ear, given antibiotics, and referral sent to Rotorua Hospital for biopsy.

10/07/23 Rotorua Hospital acknowledged the referral received.

13/07/23 Rotorua Hospital adv priority HSC urgent will contact the patient within 2 weeks.

18/09/23 I contacted the nurse practitioner at my GP surgery regarding lack of progress. She said she would contact Rotorua Hospital to see what’s up.

19/09/23 Phone call from Rotorua with an appointment time for biopsy.

21/09/23 Biopsy performed at Taupo Hospital by a general surgeon from Rotorua.

26/09/23 CT scan done at Taupo Hospital lesion found on the right parotid gland.

02/10.23 Result of biopsy was non-diagnostic. Another biopsy to be performed at Rotorua Hospital with an ultrasound this time.

17/10/23 Second biopsy with ultrasound performed at Rotorua Hospital

02/11/23 Received results of biopsy – Squamous Cell Carcinoma – Advised by a doctor that I will require a PET scan before an operation to remove the tumour in Hamilton.

29/11/23 PET scan performed no other cancers discovered but a small indication on my left neck requires a biopsy with ultrasound before surgery.

10/01/24 Biopsy with ultrasound performed on left neck in Rotorua – result, negative for tumour cells.

30/01/24 Operation for parotidectomy performed Waikato Hospital

03/04/24 – 08/05/24 Radiation treatment Waikato Hospital

Scribes note: There were two delays during this initial phrase of my diagnosis. The sixty-five days between Rotorua Hospital accepting my doctor’s urgent referral and the first biopsy, and the two weeks it took to advise me of the results of the second biopsy. Later, when I had all the documentation, I found that Rotorua Hospital had the results on 19 Oct, two days after the biopsy. I mention it to remind people to be patient but vigilant and follow up on promises made.

Key Health Professionals involved in my Cancer Journey

Taupo

GP Surgery – Dr Spock Phone……….

Nurse practitioner – Nurse Florrie Nightingale phone……. Ext….

Rotorua Hospital

General Surgeon Rotorua – Dr Barnard Ph……. Ext….

Dr Barnards personal assistant Miss Hotlips Hoolihan Ph………Ext….

Admin support Miss Alice Tinker Ph………. Ext….

Waikato Hospital Hamilton

Registrar Dr Hippocrates Ph…………

Head Surgeon Dr Who – Ph ………. Ext….

Personal assistant to Head surgeon Mrs Igor Boltneck Ph………. Ext….

Admin Support Mrs Firma Buttocks Ph………. Ext…..

Surgeon Dr Tu Longcut

Anaesthetist Dr Heroin

Radiation Oncologist and clinical director – Dr Chernobyl Ph………Ext….

Assistant Radiation Oncologist Dr DeZappa Ph………Ext….

Helpful nurse Miss Norah Batty Ph………Ext…..

Scribe’s notes:

1. All the names on this page are either the product of the author’s imagination or used in a fictitious manner. Any resemblance to actual people, living or dead, is purely coincidental!

2. My timeline has been abridged as I only wanted to complete one page for illustration purposes. The actual contacts with health professionals would have required another page.

3. Always take a support person with you to appointments with health professionals. You will often be bamboozled/overwhelmed by the amount of information given to digest (brain wise). Two heads are better than one and it helps to have someone else to listen on your behalf.

 By Ian Henderson, Taupo