The three As

Black and white dog lying down on a brown, mustard and red carpet

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).

Admin

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.

Photo by Christa Dodoo on Unsplash

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.

Anxiety

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.

Black and white dog lying down on a brown, mustard and red carpet
Our Brittany Spaniel, Marlo

In order to keep a handle on the first two As, the next one is a must.

Assertiveness

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.


Five years

An image showing the sun shining high on a blue sky, with the sea over the horizon and people walking on a promenade by the beach

I am writing this piece at the end of World NET Cancer day, an annual event created to increase awareness of Neuroendocrine (NET) cancers, and to provide a voice to the NET community for improved diagnostics, treatments, information, care and research.

Not all prognoses are equal

Five years ago, I found myself newly diagnosed with Neuroendocrine Cancer and very confused about what it all meant. As I tried really hard to get my head round the impact this disease was having on my life, November 10th 2015 hadn’t yet become an important date for me; being given a five year prognosis sent me into panic mode, I was very scared.

Five years on, I can look back and quantify exactly what Neuroendocrine Cancer has actually done to me. I have had countless procedures, some invasive and life threatening, others less so and so routine that they hardly register in my emotional spectrum.

Two major surgeries to remove some of the cancer, one other to deal with the consequences of the first two.

All the scans, at varied intervals, CT, MRI, PET, and some others which have involved being radioactive for a bit so the radiologists can see the cancer glowing inside me.

I have lost count as to how many times blood has been drawn from me. I have also lost count of the number of cannulas that have been inserted in my arms, hands and wrists; funnily enough, the ones that have gone wrong (three times) I definitely remember as my arm has been swollen beyond recognition and painful for a very long time afterwards.

I have seen the inside of my local hospital so frequently that I often joke with the nurses that they should give me loyalty points. I know this joke will land better with other cancer patients, however the gloom of having cancer is enough to make a person insane, so instead of insanity I choose very dark, snarky humour.

Cancer in a world pandemic

This year has been particularly hard. Whilst a world pandemic has undoubtedly touched everyone in so many different ways, I am not alone in saying that cancer patients on active treatment have had it really rough. I personally spent the months between March and July shielding, not seeing anyone face to face, other than the occasional delivery person who would stand at two metres from my front door whilst I grabbed essentials from my porch. As it was the case for others, the novelty of zoom parties soon wore off.

For those of us who have either an incurable or a terminal diagnosis, the main question remains “are we to live the remainder of our lives in isolation or socially distant from everyone else?”.

Cancer is always on the move

COVID19 stopped the world on its tracks, but of course, cancer didn’t get the memo.

The monthly Lanreotide injections, which I have been having since first being diagnosed, are no longer doing the job of holding back the cancer; this has been the case for nearly eighteen months. A further Ga-68 PET scan in July confirmed it. It has taken all of that time of toing and froing with my consultant, and other specialists who look after me, to reach the consensus that I need an alternative treatment. And so at the end of November I will get my first dose of PRRT (Peptide receptor radionuclide therapy)

I have been given a long list of side effects with the caveat that I might get some, all or none. One thing that has been said with certainty is that I will be spending a lot more time in self-isolation over (more or less) the next six months. I can safely say I am not looking forward to it.

I will be using the blog more regularly once again as a way to keep those further afield updated. Please go easy with the questions as I find it overwhelming at times to process what is happening to me and in turn put it into words that will make sense to the rest of the world.

Keep safe x