As a cancer patient there are three things from which one has no escape, which I have come to refer to as “the three As”.
I will try to introduce them to you with examples of things I have had to do, many times over, since my diagnosis and certainly far too many times in the intervening period since finding out that I will be undergoing peptide receptor radionuclide therapy (PRRT).
I find that the amount of admin required to manage normal life is often boring and tedious, nevertheless none of us can escape or ignore it for too long; I hope I am not alone in feeling dread whenever I look at the pile of papers that need to be dealt with.
Receiving a cancer diagnosis – I can only speak for my own experience, but I am imagining that people with any chronic illness might read this and nod in agreement – suddenly seems to generate a gazillion times more admin and paperwork that, because your life depends on it, must be actioned, chased, filed, noted, shredded or tracked without delay and with one’s full attention.
Nowadays when COVID is thrown into the mix, such paperwork must be produced when visiting hospital on account of there being people specifically employed to guard the entrance of healthcare settings so only those who are holders of an official letter are allowed in, once the obligatory questions regarding symptoms have been answered in the negative and one’s temperature checked.
It is at times an overwhelming task even before one takes into account the next A.
The NHS define anxiety as “a feeling of unease, such as worry or fear, that can be mild or severe”. This is usually a normal response to unknown or uncertain circumstances and is one of the many feelings and emotions involved in our instinct of self-preservation.
However, my personal experience when visiting a hospital or any medical setting is mostly associated with bad or negative news. Because I have an incurable disease, I will, as far as my consultant can assert, always be monitored regularly, either through blood tests or scans and the inevitable consultation to receive the results.
Living from test result to test result, and from scan to scan, means that I experience high levels of anxiety on a regular basis. I am not unique or alone in having this experience, it is very common amongst cancer patients, even those who are currently in remission, NED (no evidence of disease) or “cured” talk about “scanxiety“.
So as I prepare myself for the start of my treatment on 26 November, my levels of anxiety are, as I expected through the roof. I have used up all the tools in my box to try and manage it.
I have written down and asked, the consultant and nurses, all the questions and received, mostly, satisfactory answers. I have stocked up the deep freezer with easy meals that can be microwaved. I have asked friends to be ready to help should the need arise. I have made a list of things that I’ll need for my hospital stay.
Even Marlo is having as special sleepover courtesy of a very kind friend.
In order to keep a handle on the first two As, the next one is a must.
I have often been told by those who know me well that I come across as a very confident and assertive person, however I must confess that in the presence of very clever consultants I seem to lose all my confidence, my brain goes into some kind of shock trying to absorb all the information I am being bombarded with, whilst at the same time making sure I ask all the questions I have written down.
This happens less frequently now with my oncologist as we are now on first name terms (that’s what five years of “loyalty points” gets you in the NHS 😁). But every now and then I get to meet a new specialist or the nurses who would normally be at the many scans are away or on holidays and I panic, because it means that the first ten minutes of the conversation are taken up by me having to recount my jOuRnEy from diagnosis, through surgeries, treatment and invasive procedures, side effects, symptoms and current medication.
So here comes assertiveness, in which I set boundaries as to what is acceptable for me as patient to comply with, I challenge whether the way things have always been done is the best way for me, try to make sure healthcare professionals consider my (the patient’s) perspective, and more importantly I do not take no for an answer.
Here comes an example. In preparation for the start of PRRT I needed to have a blood test, an updated CT scan and a COVID test, all within two weeks.
The hospital where I am going to be treated is nearly 40 miles away (roughly an hour’s drive) from my home. At the initial consultation I made sure this information, along with other personal details, were noted and we discussed the implication for my treatment. It was agreed that it would be more convenient for me, and in light of the current COVID restrictions, that all the required tests would be arranged by and carried out at my local hospital. It was also agreed that I would need to stay overnight at least for the initial dose.
Imagine my frustration on receiving a telephone call from someone I had never spoken to before insisting that I should drive the 40 miles to be tested for COVID. I calmly explained that it had been agreed this would happen at my local hospital as it seemed disproportionate for me to undertake a two hour round trip for a test that would hardly take ten minutes. The person at then end of the line was having none of it. This is the way things are done and I must submit to it!
I tried my very best to not be rude and I asked the person whether they felt that in the middle of a national lockdown it was reasonable to expect me to abide by such a rule. They had no answer to my question.
I started to doubt my own conviction and felt that my stubbornness might jeopardise my ability to start treatment. In the end I said I did not want to appear strong headed but logically whether I had the test 40 miles away from my home or at my local hospital did not make any difference to its validity as they would be carried out by NHS staff. This seemed to do the trick and they agreed to contact my local hospital to arrange the test. This conversation lasted the good part of fifteen minutes.
This is but a small example. I’ll leave the discussion about whether I needed to stay overnight for another day.
I can confirm that I did get a COVID test, which returned a negative result, last Monday, at my local hospital which is a ten minutes’ drive from my home.
This all probably makes me sound like an ungrateful, spoiled brat; please rest assured I pick my battles. What I describe here is merely a symptom of a system that tries its best to deliver excellent healthcare to everyone with limited resources.
I am extremely grateful to everyone in the NHS who have at some point cared for me physically and emotionally, without their unflinching dedication I know I would not be here writing about my experience. Over the course of the many invasive and non-invasive procedures I have endured, I have met so many passionate individuals who have treated me with compassion and humanity. I owe them my life.