Supporting the

Neuroendocrine Cancer Community

Name: Maxine

Neuroendocrine Cancer Site: Small Bowel

NOT THE LIFE WE PLANNED ….

It was October 2015, and as I lay on the CT scanner bed, suddenly the inconsequential, friendly chatter in the room stopped. 

The absolute silence confirmed my cancer diagnosis. What I didn’t know then, was which cancer I had and how it would affect my life. 

Just two weeks later, recovering from the biopsy, the Consultant Endocrinologist at North Tees Hospital – who luckily for me had been trained by a NET specialist at the Freeman Hospital, Newcastle upon Tyne – outlined what my diagnosis meant. It was a rollercoaster time in which I felt sorry for myself, and imposed on my husband Alan hugely whilst I tried to understand what would happen to me and what it would mean for the future. 

There would be no happy ending. I won’t be “cured” – but no melodrama – the prognosis is good as it’s a slow growing cancer. As I was 69 then; just two years after retirement; another 10 years would mean – 79 – not a bad age I suppose. Gulp! 

What really unsettled me – was the lack of control. 

How does a total control freak manage something which isn’t supposed to be there and is affecting my life? Yes, I’ve got cancer – but more importantly I’ve still got these rubbish guts – which seriously misbehave.

Because I’m a control freak, I felt I had to try to help myself as my GP had never heard of Neuroendocrine Cancer.  My salvation was the Royal Free website where I began to slowly become aware of what Neuroendocrine Cancer might mean. 

Importantly I found out that ‘Vitamin-B Compound Strong’ would help me maintain reasonable levels of nutrition.

In early November, I received “the” phone call from the North Tees “Specialist Nurse” to tell me my diagnosis. In her specially modulated voice she asked: “Do you want the confirmation by phone, or do you want an appointment?”  At last, my fury and rage had a target, that poor nurse. All she did was confirm what I already knew. 

When I told her that she was thrown and even more upset when I told her I’d had my first injection of Lanreotide.  She used initials and acronyms! Told me a Dr. Wilson would be dealing with me. Who? Looking back, I now feel sorry for that nurse. Caring and concerned, she knew zilch about Neuroendocrine Cancer and was just trying to help.

But then suddenly in January 2016 I had emergency major surgery and my life became focussed on recovery and coping with a plethora of hospital and doctors’ visits and check-ups. Coping with very different hospital appointment systems was a conundrum. We didn’t know what the hospital systems were and what questions to ask, so we missed appointments and struggled with parking and costs, immensely stressful and unsettling.

February 2016. Disastrous post operative check-up appointment at The Freeman. Interminable wait and was finally seen by the registrar. He checked the scar quite perfunctorily and commented that they don’t check NET cancers thoroughly and that scans are unreliable. I was still in shock after traumatic surgery and wanted to know how I could avoid further major surgery. I was distraught and in tears. 

The positive was that they had removed eight or nine tumours – although there was a small one remaining in the peritoneum; I didn’t even know what this was and stumbled out shattered.

June 10th, 2016 – I felt as though I’d come out of a deep dark place. I had “coped” by not acknowledging my cancer, focussing on achieving everyday household tasks. Therefore, whenever I had to actually discuss my cancer with the nurse or doctor I dissolved into uncontrollable weeping. The doctor prescribed anti-depressants, which were awful. They numbed any feelings and stopped me from sleeping. 

I stopped taking them and instead was referred to Macmillan Talking therapy. What a lifeline. The Macmillan nurse gently helped Alan and I talk about the cancer and share our feelings and fears.  She suggested that I keep a diary. As I shared my despair at my hair loss, she was able to reassure me that I could have a wig. I’m embarrassed to think back at how much my hair loss impacted on me. 

Later in 2016 I attended my first NET Natter meeting at The Freeman Hospital and met Specialist Neuroendocrine Cancer Nurse Angie Wiliamson – my “Wonder Woman.” She introduced the word “acceptance”; I listened with head bowed, silently weeping.  It’s a process that (pre pandemic) I saw many other newly diagnosed patients undergo. 

The NET Natter meetings proved a lifeline for me and for Alan, my husband. We all shared our NET stories and supported each other. Alan really valued those meetings; he could share his feelings and open up about his worries as my carer.

That’s when I first heard about Net Patient Foundation (now called Neuroendocrine Cancer UK) and accessed the information that began to help me cope. This was vital as my doctor referred every health issue I had back to the specialist nurse refusing to get involved in dealing with such a rare cancer.  So, Neuroendocrine Cancer UK enabled me to begin to understand and cope with my own cancer. 

 A first trip out to Saltburn marked my return to “normal” life.  A walk along the beach and lunch out. What a treat. 

As a control freak, learning to live for each day and trying to stop second guessing the future is so ridiculously hard. 

Five years later, I’m still struggling.

January 2018 – not specifically momentous, but two years since the major surgery and still going “strong.”  Strong enough to plan a special holiday in Norway, to see the Northern Lights; something that we both always wanted to see. 

Planning was incredibly stressful. I had a major panic attack beforehand. I thought it was a heart attack, but decided to sit it out, frightened that our special holiday would be cancelled. 

It was a wonderful break and we returned refreshed and renewed. 

A positive from my hair loss caused by my treatment is my pink hair! My hairdresser advised against bleaching my very thin and fragile hair, so I was offered a more gentle hair colour process. I recalled a Macmillan advert where a cancer sufferer was offered a vibrant blue wig. In a moment of madness, I did consider blue, but instead opted for a dazzling bright pink! 

The hairdresser looked on bemused as I began to see, almost, a new me in the mirror. Being pink has certainly pushed me to have a more positive outlook on life.

Trying to be positive about NETs, I decided that I wanted as many as people in my village to also know about my cancer and to raise money for Neuroendocrine Cancer UK.

We raised £450 and more than fifty people attended. Scrumptious cakes baked by fellow members of the u3a.

December 2018 – suddenly it’s the end of the year. 2018 quickly disappearing while I am swept along helplessly, without any sense of direction or involvement, living from one Lanreotide injection to the next.

It’s powerfully ironic. A Cancer diagnosis like mine – treatable, but incurable is weird. We are all going to die, no escape. 

But when we are well, we can push that inevitability to the backs of our minds. Concentrate on living, as best we can. Then suddenly a doctor comes along and says, “You’ve got cancer!” “You’ve got five years!”

I become more ensnared in living and waiting (it’s called retirement.)  Life becomes a pattern of daily, weekly and monthly events that pattern life. Nothing important happens, but you keep on. The calendar is marked up and carefully checked, just in case anything important is missed. 

What used to be important has also now changed. Life revolves around health issues, so the doctor, chemist, hospital are the numbers high on the regular contact list. You become enmeshed in the daily minutiae of staying alive. There ought to be a rousing chorus of the Bee Gees song.

What has helped has been learning about Neuroendocrine Cancer. The Ronny Allen website and Neuroendocrine Cancer UK had information which I began to assimilate, and understand what was happening to my body. Diagrams and explanations helped clarify my attitude to my NETs, and, yes, finally some acceptance. Three long difficult years and now I live with NETs. 

So, 2020 saw me determined to live more effectively; yes, keeping busy, but able to reflect and make time for reading and enjoyment. Having achieved the dream of the cruise and the Northern Lights, 2020 was the year for writing. Complete the bloody book! Even start meditating. To try and control how I approached things and not let the hormones totally control me. So, small steps:

Enjoy something each day. Something in the garden, the sky, a flower, when Alan and I clink our glasses and say – “happy ….”
Achieve something each day – either writing – walking – photography- gardening
Be kind – to myself, to Alan and to others around us.

Of course, life doesn’t read my plans and 2020 shot past so quickly. Massively eventful, however. Matthew, my son’s suicide. The post-mortem, a Covid funeral, the inquest. All the unending paperwork from banks, councils, energy companies and the last, very final acknowledgement of his life, sending in his final tax accounts. 

Grief is overwhelming. 

In late May 2020 we managed to set up the caravan across in the Lakes, all the while continuing to isolate. What a relief, somewhere to relax for us both, a bolt hole in between injections. Because, of course, the dratted neuroendocrine cancer reared its ugly head during the last months of 2020 and early January 2021. Had a miserable couple of months, flushing and coping with a wretched stomach and ongoing aches and pains.

A pandemic plus has been the online NET Natter meetings, not the same, but different. Angie and Nikie, both there to talk to and offer support. How lucky we are. 

Facebook and Twitter have become more important, and a huge amount of information is now being shared online, again more reassurance for us NET patients. I feel more confident accessing the Neuroendocrine Cancer website for information now. There are talks, people’s life stories and even more information.

I fill the calendar with u3a stuff, groups, meetings, activities. My meditation is gardening. Working outside, planting or cutting back, somehow the depression disappears. Sadly, the bad back reminds me to be a bit more careful. 

But I must acknowledge that it’s often an avoidance tactic so that I can forget about the cancer. It’s when I sit down quietly, all the sneaky cancer worries pop up and take over my mind, so I keep on running. Of course, it’s not real running, that metaphor is highly misleading. I’m blundering my way forward, coping with just being and also coping with the blessed cancer!

In June 2021, I was invited to be a NCUK Ambassador. Suddenly my outlook has broadened and I’m learning more and more about different types of NETs, different treatments and how people are coping. 

And it’s another stage of my journey.

Maxine Patterson