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