Tomorrow it’ll be fifteen days since I received my first dose of Peptide Receptor Radionuclide Therapy, which is a mouthful so it’s referred to as PRRT.
So far the only symptoms have been fatigue and nausea.
Now when I say fatigue, I mean a lack of energy which means that doing the most basic of personal tasks leaves me needing my bed straight away. My days have mostly involved waking up some time around 10 am. Using the toilet, walking downstairs to grab a bowl of cereals or a piece of toast, filling up my bottle of water and getting back into bed.
I have been listening to the radio or a podcast whilst eating my breakfast, but invariably, I have been falling asleep again by around midday.
The nausea has been something else altogether; whilst I have medication to ease it, it doesn’t completely go away, it simply takes the edge off the nauseous feeling. Another cancer patient recommended trying something sour, and I am pleased to report that fizzy sour bears did the trick, so a friend has been supplying me with enough to keep me going.
Other recommendations included ginger, which I can not stomach when I’m well, so I didn’t feel like trying it now when I’m not feeling my best.
Because of the nausea, my appetite has also suffered. I am ok with liquids, so soups, water and tea go down well. I have managed a boiled egg and toast, as well as cereals for breakfast. I struggle to eat much else. Of course, lack of food also has an impact on my energy levels.
The way in which PRRT works, delivering radioactivity to the tumours, means that my body is radioactive for up to two weeks after receiving treatment. Before leaving the hospital I had to sign a form agreeing to maintain my distance from other people and specifically from anyone who is pregnant or under the age of 18. I haven’t been able to hug my daughter in all that time. Friday, the first day when I will be allowed to do so, cannot come quickly enough.
One of the precautions I’ve been taking has been to minimise the time I spend in the communal rooms in my house, so I tend to spend no more than fifteen minutes at a time in the kitchen, I haven’t been in my lounge at all, and have spent the rest of the time in my bedroom. I have also been wearing disposable gloves when touching high traffic areas of the house and for the first seven days I wore gloves when touching Marlo.
Talking of Marlo, I’ve had so much help from friends who have taken him out on walks every day. He’s one very lucky pup!
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.
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.
I had been warned that the second year of grieving could be worse than the first. I did not believe this as overall these last eleven months after the first anniversary of Michael’s death have been ok, and sometimes more than ok, with moments of real joy and sense of achievement and progress outweighing the dark moments.
But then I had not factored in the Christmas season, never my favourite before Michael died, so if I could confine it to Room 101 now I would. But it seems there’s no escaping the general atmosphere of jollity attached to December, believe me I’ve tried, it’s hard work.
It’s not that I’m a Scrooge but I have for quite a few years now had a feeling that all the excesses and seemingly hedonistic gift giving was so out of step with the reality of a huge proportion of the world’s population, it felt somewhat false and wrong.
But I digress…
I have been busy living and helping my children thrive rather than merely existing and in that process the grieving got pushed to one side, “don’t have time for that” I kind of said to myself.
As time has started to draw nearer to Michael’s second anniversary I have the inevitable hump of Christmas and New Year’s Eve (also Michael’s birthday, he would have been 58 this year) to get over. I am finding that with more time and a clearer mind to reflect, the grief monster has once again reared its head, grabbing me by the throat and pinned me to the wall with a very clear message: “you will grieve, you will feel this pain, because you cannot run away from it forever”.
So I find myself unable to function and not wanting to make decisions, wanting to simply wave some kind of magic wand to make this month disappear from the calendar, wanting to hide, as any form of human contact right now is a painful reminder of the man whom I loved, still love and who is no longer here.
I wrote this post on 29 January 2017, but never published it, it was too raw, too difficult for me to read back, let alone to allow it to be read by people out there in the ether of the online world. I have done a lot of personal healing and growing since this very bleak day earlier this year, so now I feel I am ready to let it go and allow others to see the raw emotions that made me write it in the first place.
It was spring and something changed; I had survived my first winter in a foreign land. Cold like I’d never experienced in my life, the kind that gets inside your bones and sinews and no matter what you do it never leaves you. The culture shock! I spoke the language but somehow couldn’t communicate with people, words seemed to have a different meaning to the one assigned to them in the dictionary. Sarcasm, irony and mockery were the order of the day but it made understanding people’s intentions nigh on impossible, were they being friendly or trying to take advantage of me? I was working so hard just to keep the wolf away, money was tight (sometimes not enough to feed myself) and yet I knew that if I could hang on for a little longer I would make it a success. I hadn’t migrated nearly five thousand miles searching for a better life just to flounder at the first hurdle.
We met one Sunday morning, I had travelled from up north to London; for the first time since arriving in this country I had the opportunity to see the big city and marvel at its amazing buildings new and old and bear witness to what every migrant must feel when faced with its famous streets, that indeed they are paved in gold! Oh the opportunities!
My friend, your friend, our friend, had arranged a meet up for breakfast at your local cafe, where we were to meet you and his sister. I assumed you and our friend’s sister were a couple, so was taken aback when your attention seemed to be solely directed at me and my daughter, but hey I was in a foreign land and when in Rome do as the romans. So I reciprocated by directing all my attention, out of politeness, to you, ignoring our mutual friend and his sister. That didn’t go down very well with our friend, so instead of building bridges I had burnt one. Of course I didn’t realise at the time that our friend’s interest in me was more than for friendship, I was naive.
Unexpected, unsolicited, relentless… you made your way into my life and took a keen interest in everything I did, planned and dreamt of. I had no idea what your intentions were and had far too much turmoil in my personal life to really pay attention, so I just dismissed your efforts. I didn’t know where admiration ended and mockery started, so I remained distant. But you didn’t give up, nowadays your behaviour would be considered stalking, back then it was just sweet, I was naive.
I was not looking for a relationship, I was already in one which I wanted desperately to end. So no jumping out of the pan and straight into the fire, I said to myself. But you wouldn’t give up, it was so hard for me not to give in. And when I did, your love was beautiful, gentle, tender, all-consuming, loyal; I was not used to it, until that point in my life love had been hurtful, deceiving, betraying. Your kind of love made me feel scared because it was so different, unexpected, unsolicited, relentless.
You showed me how to be kind to myself, how to accept the kindness of others, you brought calm to my soul and held my heart safely in your hands. You made me happy. You made my world complete. You made me a better person and because of your love I was able to love you back in the same beautiful, gentle, tender, all-costuming and loyal way you loved me.
And so we started our lives together, enjoying each other’s quirks, making each other stronger, making plans, falling in love. You were in a hurry, you said, you were not getting any younger and until you found me you never thought you were going to marry or have a family; you were so happy to be a father to my daughter and proclaimed that I was the best mother you had ever met. Marriage, for better for worse, for richer for poorer, in sickness and in health, till death do us apart, we promised; followed swiftly by two beautiful children and making our forever home together, I still hungry for adventure, you content with allowing me space to follow my dreams, because as you said, yours had come true the day we met.
And so fifteen years of domesticity, every day hum drum, paying the bills, bringing up the children, “who is doing the shopping this week?”, “shall I cook tonight?”, “it’s in the calendar, so it’s happening”, just trying our best to keep the love alive.
And then everything changed, dammed blasted alien took hold of you, unexpected, unsolicited, relentless, invading your body and your soul. It attempted to destroy everything we had worked so hard to build together. It really did try its hardest to get in between us, and I had to put all my strength into reminding you of our sweet, tender, all-consuming love; our promise was tested, oh we were tested! And just as we thought there could be no more tests, we had shown our promise to be as strong as iron, the same invading alien took hold of my body. It devastated you, as you knew the alien was robbing you of your life and your strength at the very moment when I needed to be cared for, yet you couldn’t be there for me. Your body was ravaged, where once stood a strong, athletic, powerful man, the alien consumed you, leaving a paralysed mumbling wreck, taking you away from me, from your children, from your friends, to a land where we are not allowed to visit
And now you’re no longer here, I try so hard to hold on to the memories; eighteen years and yet all I can see is how everything changed.