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Neuroendocrine Cancer Community

I was diagnosed with my first Neuroendocrine Tumour (NET) in 1997, when I was just 24. It was in the tail of my Pancreas and was secreting PTHrP – causing very high calcium levels, and oddly giving me toothache. I was also 29 weeks pregnant at the time, so my NET was treated by surgery 18 months later which we hoped would be the end of the matter.

Unfortunately – as with many Neuroendocrine Cancer patients – it wasn’t.  Five years later I went for a check-up and discovered that my calcium was again high, and after further scans a recurrence was discovered with multiple tumours over my entire liver. It was, quite frankly, the worst news I could hear.

Prolonged periods of time in my local hospital followed, having various treatments such as Pamidronate, fluid flushes and particle embolization to try and reduce my calcium levels. Devastatingly, I was told my prognosis was believed to be around 3-5 years. By now, I had already been going through this illness for a further 2 years, and I had never wanted to know my prognosis until that point – and because I was so poorly it mostly went over my head.  But I did register the fact that I needed a second opinion – I could not let my daughter (by now aged 7) grow up without a mum.

I did my homework and approached Cancer Research UK and asked for the leading consultant in Neuroendocrine Cancer.  The navigator had never heard of Neuroendocrine Cancer and promised to go and do some research and get back to me. I recall thinking that I was unlikely to hear from her again. Fortunately, I was wrong. She found me a doctor at The Royal Free Hospital.

This was in the days before our UK NET Centres of Excellence were as identifiable as they are now. Going to see the consultant at The Royal Free Hospital was both scary and positive. I went as a private patient for my first visit and the consultant asked if I had had any tests other than bloods and a CT to confirm what the tumours were doing?  I had to reply none, because my local consultant believed that it was the same as before. My new consultant requested a whole host of tests to confirm if the tumours behaved in the same way. Unfortunately, my local consultant didn’t want to carry out these tests. This was probably the first-time things got real, and all my emotions started to come out: anger, fear, distress… for the first time I acknowledged I could actually die.

The tests were eventually completed but only after getting my MP involved – which, of course, added to the stress and anxiety of the recurrence of the cancer. Armed with the test results, I went back to The Royal Free Hospital to learn that the tumours were secreting PTHrP again but had changed slightly. My understanding, at the time, was that they were no longer receptive to Octreotide – but instead took up Gallium. The consultant said he would add me to his case load and take me on as an NHS patient – largely, I thought, because my medical case was so unique.

This is where the journey to transplant really began . . .

My calcium remained high, and I was spending more time in both the Royal Free Hospital and my local hospital. I would have a variety of treatments from fluid flushes to more particle embolization. My health was deteriorating, along with my mood. Even when I was not in hospital, I would spend a lot of time there for repeat scans and clinic appointments.

The Clinical Nurse Specialists (CNS) at the Royal Free Hospital had to deal with some pretty angry ‘phone calls, but they were so supportive and always managed to calm me. I would be crying one minute and angry the next. My emotions were all over the place and I was terrified that if I did not get treatment to stabilise or remove the cancer from my liver then I would not have long left to live.

After attending the Royal Free Hospital for a few months, my consultant decided that the best option for treatment was a full liver transplant. Everyone that I spoke to thought this was a brilliant idea and that there was a treatment out there to save me.

However, I interpreted it as my last chance. If the only treatment to save my life was an organ transplant, things were critical. It was a very difficult time and some friends reacted badly to my thoughts and feelings about the transplant. These well-meaning reactions added to my stress levels, and I felt out of control. This had a huge impact on me and sometimes I felt under pressure to do and behave how others wanted me to, instead of how I really felt inside. It was a lonely time.

Once my Consultant Gastroenterologist had made the decision to put me forward for a liver transplant (with my consent) we had to convince the Liver Transplant Team that this was possible. There had not been may successful transplants for Neuroendocrine Cancer patients at this point. One of the requirements was that there could be no other tumours outside my liver or anywhere else in my body, because surgery might mean that any cancer cells would then spread thus making my life expectancy after transplant shorter.

We started a barrage of tests by having bloods and scans (CT & MRI) every month to show that all the tumours were, and remained, on the inside of my liver. I would attend clinic after the scans and watch month by month as my Consultant moved my notes from the top of the pile to the bottom.  The transplant MDT met at the end of his clinic so he would leave clinic and join their meeting for an update. Quite often I was still waiting to see the Consultant long after the morning clinic had ended. On occasion, he would send me away to get a coffee or some lunch as he knew he could not report back until the end of the day. We all knew it was a long process.

Every month we got a NO – and I felt my body fighting harder and harder –  beginning to slow down in every way. I was meant to be a fit 32-year-old mum living life to the full, but instead I was struggling with everyday tasks. I was spending more and more time in hospital, even being admitted on New Year’s Day once because my speech was slurred, and I could not find the right words (nothing to do with the festivities!). I was disorientated and had jaw ache and by the time I was admitted my calcium was found to be dangerously high, and I needed treatment to flush the calcium out to try to stabilize me.

Whenever we thought we could be close to getting a Yes, a scan showed an enlarged lymph node setting us back again. I would not have wanted to be the person who had to keep telling me the answer was NO. My temper and mood had just about hit rock bottom and I was now believing that the outcome would not be a positive one. I had started to think about my funeral and what I should do in preparation for leaving my daughter behind. It was a very hard point of my life, feeling upset and but still trying to be a mum and protect her from how ill I was. I wanted to see her finish school, go to university, maybe even get married and make me a grandma.

Finally, I was admitted to hospital for a week for a comprehensive set of work up tests, to confirm I was physically and mentally strong enough for transplant surgery: blood tests, ultrasound, CT, MRI, bone density scans, endoscopy, EEG, ECG, echocardiogram, psychiatric assessment, and dental assessment, to name a few.  All apart from one came back as positive and clear to undertake the lengthy transplant surgery.

The only test that could cause me an issue was the dental check. Your mouth is a huge source of bacteria and place for infection, so your mouth has to be in good health. One of my wisdom teeth was partially ruptured so had to be removed. Fairly straightforward, yes? Except I am terrified of the dentist and there was no way I would be able to have it removed whilst awake.

I found a dentist (me, not my Consultant) who was happy to complete the extraction with my calcium high and that could have a big impact on my body during surgery. We knew I was at risk of Carcinoid Crisis and may possibly need urgent care, so I had an Octreotide infusion the night before and extra care on standby if needed during or after surgery. It seems irrational that I hate the dentist yet am happy to watch all sorts of other procedures happen. So, the tooth was removed and once healed all criteria had finally been met to get me added to the official transplant list.

Eventually after 11 long months of repeat scans, trips to clinic, stays in hospital, dental treatment, and lots of NO answers, we got the approval to just ‘have a meeting’ with the transplant coordinator to add me to the list. This was the final hurdle. It was the most important meeting of my life but also the scariest that I had ever attended.

To be honest, on the day, I was not sure that if I was offered a place on the list that I would actually take it. The thought of such a huge surgery and the risks to my survival terrified me. I wasn’t being ungrateful to the amazing medical teams who had fought so hard to get me on the list, I was just frightened. We were all fighting to prove it would give the best outcome for a long life. The meeting was intense and emotional. We discussed everything that being added to the list would entail: from waiting times to how I would be contacted when a match was found. The coordinators said I would receive a call on my mobile phone, but we decided it was better for my friend (and housemate) to be the person to take the call. What a responsibility! Waiting time on the list was 6 months and over.

It was a long and intense meeting. Nearing the end, I was surprised to finally be asked: So, “do you want to be added to the list?” By now this was the easiest answer ever “YES”. I left the hospital in a daze but so happy to be on the list. We went and had a celebration drink knowing my place wouldn’t be ‘active’ until the next morning. Once home, I stopped drinking alcohol completely in readiness for the all-important call.

I officially went on the liver transplant list on 28th November 2005.

Then the waiting began.

You have to try to carry on as normal and not focus on the call coming. Watching my phone all day wasn’t an issue as my friend was doing that. But whilst I waited, I was deteriorating and spending more time in hospital. In some ways, this was good as I got to know the transplant coordinators and the NET Nurses better, and to continue discussing what the transplant recovery would be like.

But it was also an upsetting time. I was a long way from my family and friends, so visitors were few and far between. It was my choice to be under the care of my specialist NET team, so it was a small price to pay for the best care. By now I had stopped working – so not only did this mean I had the worry of my health but now financial worry as well.

Luckily my wait wasn’t too long. At 2am on Sunday 16th April 2006, the call came.

It was Easter Sunday, a day I will never forget. We had a plan in place: I was to get up and have a shower whilst my friend went to get her daughter to stay with my daughter until the next day when she would go to stay with her dad. I was on auto pilot. I got up, dressed, crept into my daughter’s room to give her the gift I had ready for the day she woke up and found I had gone for my transplant.

We had been told that we needed to be at hospital for 6 am. It’s a 2-hour drive at that time of day and I remember the journey was quiet and subdued. I felt like it was all happening to someone else. In hindsight, it was probably a bit of shock.

Once we arrived at the hospital and on the ward, there were further tests. I had a chest x-ray and lots of bloods for cross matching and to make sure I did not have any infection. I had made the decision not to tell any family or friends that I had the call until I knew that I was fit to operate on, and the donor liver was healthy and fit to transplant.

At around 9am, the transplant coordinator came in to let us know we were good to go. I went down to theatre at 11 am. I shared the good news with my family, I remember trying to get hold of one of my sisters, but she was at work and wasn’t allowed to answer her mobile.  I think after about 15 missed calls she decided that she really should pick up. To hear the excitement from my family that I was finally getting my transplant was very emotional, we had not really spoken about how my illness affected them as my big sisters and my mum. To be able to let them know that I was getting my life saving liver was a very special moment. I went to surgery with that in my mind even though I was very scared and emotional from the ward to theatre.

I remember them telling my friend that she couldn’t accompany me any further and that made it very real – now I was truly on my own. It helped seeing the familiar face of the transplant coordinator and surgeon once I got to theatre, knowing I was in the very best hands as I drifted off to sleep for the biggest operation of my life.

. . .

The surgery took around 8 hours.  I woke up in intensive care with lots of lines in and on a lot of pain medication. I was still ventilated and couldn’t speak.

. . .

But it was exciting . . .to know that the operation had gone well and now the recovery was on to get back to fitness and be well. Quite soon that day, lines started to come out as I was becoming more awake and alert with the aim to get me up to the ward the next day (Tuesday) to start the hard work of recovering and going home.

My friend came to visit in the afternoon. By then I’d had the ventilator removed and was able to talk a bit with a croaky voice. I was very pleased to see her – we laughed a little as in the planning to get me ready for hospital we didn’t think to bring any clothes or toiletries for her. She’s loves to shop so it was no hardship to have to buy a few clothes.

I phoned my family, and they were all excited to know the operation had gone well and they planned to visit in a few days’ time when I was back on the ward.

I was moved to the ward the next day and allowed to stay in bed. The following day I was encouraged to attempt a wash and to sit in the chair. This was so uncomfortable with drains, catheter, and lines in attached to drips for pain and fluid, along with a cut on your abdomen with a large amount of staples in (87 to be precise). It was exhausting sitting in the chair and I was sleeping on and off throughout the day until I got back into bed. I was also on lots of medication to stop my body rejecting the new liver.

. . .

Every day saw improvements. My first shower was the most exhausting thing I had ever done, and I fell asleep as soon as I was back on my bed. We take the smallest everyday tasks for granted but when you have been through such a major operation and your body is already exhausted from fighting cancer, small tasks become mammoth leaps.

My daughter visited after a week, and she questioned why my eyes looked a bit green.  The nurse checked and confirmed I had some jaundice. The doctor confirmed, and the line in my jugular was quite painful and red with the start of an infection so we removed it.

The problem then was trying to get a new canular in. I was retaining a large amount of fluid, so it was difficult to find a vein. All of this was quite scary. You think you are improving but the slightest thing can set you back. It is all unknown to you so it’s difficult to deduce what’s serious or what can be treated easily.

The doctor diagnosed a blocked bile duct which would need an ERCP (Endoscopic Retrograde Cholangio-Pancreatography, for those interested) to correct this. Then there was a problem with the Endoscopy Suite, so I had to travel to another London hospital. But there was no ambulance to transport me, so I went in a taxi with my CNS as we couldn’t risk leaving the procedure any longer. I was given strong pain medication for the journey and sedation for the procedure.

The ERCP was completed but even with all the painkillers and sedation, I can’t lie I was in excruciating pain. This doesn’t sound like a very positive part of my recovery, but it was. I had the procedure as soon as was possible to prevent me deteriorating further. So even though it was a difficult day I would do it all again. This was part of saving my life.

Next, I had my catheter removed, but my body forgot how to empty its own bladder, so another scan to check everything was ok. I was desperate to go to the toilet. I was advised to relax as my body would work when it is ready, but it was frustrating and embarrassing that I was unable to do the most natural of things. When the doctor visited to say I was doing well, all my emotions came tumbling out. Not just about my bladder forgetting how to work but the enormity of a liver transplant – and accepting that someone had died to save my life. At the worst of times for my donor family, they found the courage and strength to donate their loved one’s organs.

. . .

At the time of writing, seventeen years on, I still have tears in my eyes as the feelings of gratitude never gets any less. THANK YOU isn’t enough. But there are no other words to use. I remember the family quietly most days, but especially on the anniversary of my surgery, hoping that they are doing well and that they believe by agreeing to donate organ/s they have given other people lives they would never have.

My doctor reassured me that these were all normal feelings. He told me that once the initial shock of having survived the surgery passes, you begin to have time to reflect, and accepting the reality can be quite a mental challenge.

. . .

I continued to get stronger mentally, emotionally, and physically and two weeks later, I was discharged.

I remember I didn’t feel strong enough to do this and was scared that if something went wrong, I would be over two hours away from my specialist team – what would I do?

Learning the medication and how much of each tablet to take was like an exam! One of the transplant nurses came and tested me to confirm that I knew what they were for managing at home. I actually only went home for the weekend knowing that I was to be back for clinic the following Tuesday.

Tuesday clinic was always the same: blood test then the wait to see the consultant. For the first clinic I was told to take an overnight bag in case I needed to be admitted.

Luckily, I recovered quickly physically, and my body had very little rejection. Within 5-6 weeks I was up and about starting to do normal everyday tasks. I went to the liver clinic every week initially, and gradually over time now go annually.

I’m still followed up by the Gastroenterologist with scans every 6 months. Seventeen years on and I have not been without recurrences of Neuroendocrine Cancer, but my liver has held strong even when the metastases were present. It was quickly dealt with and currently I am 4 years NED (No Evidence of Disease).

I had made the choice not to learn anything about my donor. But that first Christmas after my transplant, I wrote a letter for my transplant team to share with the family to let them know I was doing well. I don’t know if the family replied because I didn’t want to receive anything. The transplant coordinators handle this with great care and respect for your wishes.

Being given the opportunity to have a liver transplant was the very best thing that happened to me. Without it, I would not have seen my daughter finish school, go to university (twice), graduate and take up a career with the NHS working in mental health.

I have the utmost respect for the family who said yes but also to the amazing NHS workers who took care of me for many months, when at times I was probably not very nice to them, but they never once stopped treating me with respect and understanding.

I hope this story brings hope and understanding.

A liver transplant is the most wonderful of gifts. But it is quite some journey emotionally and physically. You need to be robust, able to take some knocks and ideally have supportive loved ones around you.

Most Neuroendocrine Cancer patients have many treatment options and I wish you the very best of luck.

Take care of your health and make the best of every good day.