Insulinoma Support Network

Our stories

Our stories

Read the experiences of people living with insulinomas. We are always welcoming new stories, contact us to share yours.


Paula's Story Part 2


I recovered from my operation and went back to work and thought I was OK. Things started to go wrong again during January 2009 I was starting to get low blood sugars again and I knew what they were this time. 

I was on monthly Sandostatin injections for a while but they did not seem to help, so I was back to eating every two hours to keep my blood sugar up again. I was extremely lucky a dear friend, Hob, saved my life. I had gone into a severe hypo coma during May we had spoken earlier in the day and she realised something was wrong luckily she came to check on me, getting spare keys from a neighbour. Following that episode, I restarted the Diazoxide drug. My deteriation continued until May 2009 when things came to a head; I was readmitted to hospital as my blood sugar levels were uncontrollable back to two hourly blood sugar levels tests night and day following lots of CT & MRI scans and further blood tests it was agreed the best way forward was to liaise with Professor Caplin at the Royal Free in London. It was agreed that my medical position warranted the Radiolabelled Octrotide (RLO) treatment (Magic Bullet) only then available at the Royal Free.  

I finally managed to get home the worst thing at the time was I had not slept for two weeks I was now on a high dose of Diaxoide which was causing water retention that was extremely painful and uncomfortable my weight went up by 12 kilos during this period. At this point I met a wonderful GP Dr Collyer who has looked after me in tandem with Dr Bradley at the BRI.  Just going up the stairs to the bathroom each day was a major challenge. My life was on hold once again friends and family came to the rescue as I could not be left alone due to the possibility of low blood sugar coma, which did happen once more.

Following liaison with the Royal Free it was agreed I was a suitable for the RLO treatment. I was shocked to find out I needed approval of the local PCT to pay for the treatment as it was in a different health authority - London.  This started a difficult couple of weeks. Luckily I managed to make contact with the person who would co-ordinate my application with the PCT which went to a special meeting for approval as I had missed the monthly meeting. This was supported by my consultant and GP who made the case in writing for the Royal Free treatment.

After two difficult weeks the approval came through and all systems were go. I was booked for my first treatment which is explained as “being isolated in a lead lined room for 24 – 48 hours during which a cannula is inserted and Radiolabelled Octrotide is administered” I must confess, I was not looking forward to it.

For my first treatment in July 2009, I was driven up by my lovely brother for an 9 a.m. start and started the usual medical checks, update and lots of blood tests, the time came to be shown the “room” well I was very pleased as it turned out to be a room on the 13th floor with windows over looking Hampstead Heath which was wonderful, self contained with en-suite. It was better than some hotels!  The treatment started about 3.30p.m. Which consistered of a trolley with the radioactive medicine being wheeled in and administered intravenously, the consultant administering the treatment stays behind a lead barrier by the door protecting his body. The treatment takes about 30 minutes with a drip prior and post to ensure my kidneys remain clear.

I was given anti sickness drugs but unfortunately they did not work the first time.  The period of isolation then starts, relax and let the treatment get to work on destroying the horrid tumours. Following day off for a scan to check the treatment has attached to the tumours, following the results of this, I was clear to go.  So my lovely brother comes back from Bristol (250 miles round trip) to take me home, prepared with a bowl and tissues just in case!

It was wonderful to be home and I just needed to sleep. In fact, a few weeks of sleeping and lots of rest. Over the next two weeks I did wake at night with pains in my chest I can only explain as a feeling of something being eaten away, it was the RLO destroying the tumours. One down two to go! The following two occurred at three month intervals same procedure each time. I had the final one on the 11th January 2010 this one took a bit longer to get over and did have a few weeks of being unable to do anything.

I went back to work late February 2010 this time three days per week, it was a bit more challenging this time as energy levels were not as high. During the nine month treatment period I needed weekly blood tests which my GP arranged to be done at home to avoid visiting areas of infection.

So here I am getting on with my life once again. My medical team have been fantastic; friends and family have all given me the energy and mountains of support to get through it all. Professor Caplin says research so far says this treatment on average gives 2 – 3 years before reoccurrence of the tumours, so fingers crossed.

In September 2010 I underwent an incisional hernia repair operation. I am told this is quite common in operations of this size.

May 2011 I finally realise that all my energy is now going in to work and unable to do very much else as all other time was spent just recovering and sleeping! The impact of the treatment depletes your bone marrow which in turn results in low haemoglobin reading of 10.2 which should normally be about 12 – 14.

So June 2011, I decided to give up work my finances did support this, not as much money but with what I have been through decided my life is more important so I took the plunge and decided to make the best of whatever time I have left, hopefully a lot!. Wonderful leaving do’s commenced with colleagues and my team. I have seen during my journey how many wonderful caring special friends and family I have around me and I want to enjoy every second of those special moments.  I have 6 monthly CT scans with annual PET Scans in London. 

Each one of these has shown some growth in the size of the tumours but to date nothing significant to require more treatment, plus no hypos!  I have also recently been diagnosed with an under active thyroid so I now take Thyroxine which appears to have increased my energy levels.

During one of my appointments with Dr Bradley I asked about wanting to get fit and feel stronger again and was worried about my body not being up to it.  She replied “you will be exercising with no stress now that is different!”  That is so true I now realise looking back on my life I had lived a full life with a highly pressurised job a busy social life not a brilliant diet and thought I was doing well.  I now live well compared to that period and don’t have stress in my life if I do it is in small doses not 24/7.

During the last four years I have also been lucky to receive on-going support via Penny Brohn Cancer Care who offer complementary cancer care, I have also met some wonderful friends, some who have lost their lives to cancer which makes me even more determined to enjoy mine to the greatest degree possible.

Early in my journey I met Enola Wright who had set up a Facebook page for people with Insulinoma’s during these past few years we have become firm friends and Enola has been an immense support with her phone calls and visits at those moments when health issues have taken over my life. There are now 137 members on this page now who mutually support each other with advice and just a kind word which is so crucial during this journey. Thank you so much Enola, this journey has been made so much easier due to your on-going support and friendship.

So here I am September 2012 – now 57 still well and really enjoying my life.  I have recently commenced a new relationship which feels wonderful and very special.

A Malignant Insulinomas is not a great diagnosis but remember it is not a death sentence either, just a kick to get on and enjoy life to the full as that is why we are all here isn’t it!

I cannot end there without saying a massive “Thank You” to friends, family and our wonderful NHS, the dedicated doctors, nurses and support staff that have kept me alive over the past four and half years. With on-going medical advancements in the area of Insulinomas for many more years to come to!

To be continued…

Elliot wright