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Neuroendocrine Cancer Community

Sharon’s NET story

Nov 3, 2017

My NET story

Have you ever had certain symptoms and “self diagnosed” yourself? I have and it nearly killed me!

Years ago, I began getting diarrhoea, I did actually go to the Dr’s this time. I was referred to the hospital, had tests and they found I had some cyst, nothing to worry about. So I didn’t, it continued for over 10 years, but it was fine, I’d had it checked out remember! I started having “funny turns” when I drank alcohol, flushing and feeling quite unwell, I must have become allergic to alcohol, right?? I started having hot flushes, being in my late 40’s, it had to be “the change”, right? Well, that’s what I thought. They couldn’t possibly be related could they? Sound familiar to you? This continued for some time, I felt fine…

I had struggled all of my life with my weight, but in 2012 I noticed that I had started losing a little weight, hey fantastic news, I wasn’t even trying, but it felt good. I cut down on my food, as I liked the way I was feeling. People even started to notice at work. 1 stone, 2 stone, soon I was up to 7 stone, people started to ask me how I’d done it…I just said I’d cut down on my food and changed my diet, which was true, but deep down, I knew that I wasn’t doing enough to lose this sort of weight. I did mention it to my Dr once, just in passing, he didn’t think it was anything to worry about and I didn’t say that I hadn’t really been trying that hard. 

During October/November 2015 I started feeling generally unwell, some bad tummy aches, feeling very sick. I went to the Dr’s as it was going on for a while. He thought I had irritable bowel syndrome, so gave me some tablets. They didn’t work, but there was a lot going on at home, my marriage was breaking down and then my Dad was taken into hospital, my health wasn’t important…I only had a tummy ache, nothing serious there, eh? Unfortunately, at the beginning of December my dad passed away and then in January 2016, my husband moved out. Time to breathe and take stock of my life…

For the first time in my life I started to do things for me…I started burlesque dancing lessons, I joined a dating site, life was starting to feel good. Or was it?? I began to notice little things, my ankles were a little swollen and then over a period of 6 weeks I put on about 3 stone, half a stone a week! My tummy was really swollen, it got so bad that I could only just get behind the steering wheel to drive!! I kept struggling to keep my eyes open at work, I just felt exhausted!

Again, I visited my Dr, he changed my IBS tablets. Nothing changed, my legs were getting more and more swollen. One night, I was sat at home and my legs felt so swollen that I couldn’t even bend them. I phoned NHS Direct and they advised me to see a Dr the next day. I phoned the doctors the next morning, but my usual Dr was on holiday, so I saw a different Dr. Although she’d never seen me before, she felt my tummy and knew something wasn’t right. She got urgent blood tests done then and booked me in for an ultrasound scan. 

I got a call from my own Dr within 2 days, saying that one of the blood results had come back high and they were referring me to the gynaecology department, as the result could indicate ovarian cancer! Wow, I wasn’t expecting that…more tests and scans needed. These continue for a couple of months and then, out of the blue, I get a call asking me to go for an echocardiogram, the following day!! I go to see the gynaecologist, who tells me that there is no sign of ovarian cancer, but they have found a problem with my heart and so have referred me to a cardiologist. I was so relieved that it wasn’t cancer and if I’ve got a problem with my heart, that can be fixed, so it’s a win, win as far as I’m concerned!!

It’s the day of my appointment, Monday 4th April 2016, to see the cardiologist, so I leave work slightly earlier than normal. As I left, I said “see you tomorrow” to everyone. Little knowing that I wouldn’t actually be seeing them all for a very long time!!

At my appointment the cardiologist explains that there is a problem with 2 of my heart valves. Basically, I was suffering with heart failure!! Just another little shock…they want to keep me in now! I’m allowed home to pack a bag for a few days and then come back to be admitted. I must admit, it was all a bit of a blur. Later that evening a junior doctor comes to talk to me; she asks me lots of questions and I said, “at least it’s not cancer and my heart can be fixed”, she floored me, when she went on to explain that they were still investigating if I had cancer, she mentioned something called carcinoid, which she said that she’d had to look up, as she’d never heard of it! Ok, time to panic…yep! If she’d never heard of it, how was I supposed to know what it was? Later on a different Dr came to reassure me that everything was ok and not to worry…they are the professionals, right? Tests, tests and more tests…I remember having a blood test, but it had to be put on ice immediately, that was a new one. They also had to keep a record of how much fluid I drank…and of course, how much I got rid of. Oh the joys…

I’m told that they are preparing me for heart surgery, that will be performed at Southampton hospital…I underwent lots more tests, went to Bournemouth for an angiogram. The Docs were becoming increasingly concerned about me, I didn’t understand that, as I had felt well when I was admitted, but within 3 weeks I had gone downhill so much that I couldn’t even bathe myself and needed help. Eventually, I got the news that I was being transferred to Southampton for surgery, Monday 25th April. Exactly 3 weeks since I was admitted to hospital! 

I get to travel up to Southampton by ambulance! I remember that the driver looked like someone I recognised from TV. I kept thinking, I’m sure I know him, he looked very familiar! When we arrived I asked the other paramedic if he’d been on telly, as he looked like someone from Primeval. His name was Tim Faraday.

Tuesday 26th April, was in a ward with 5 other ladies, some of them were waiting for their surgery, like myself and a couple had already had their surgery. I remember the woman next to me had already had hers, but she wasn’t feeling very well. She suddenly “crashed” and it was a bit like casualty, with all the curtains closed around us and all hell breaking out with Drs and nurses, trying to get her breathing again. It was so scary and it didn’t help that I was completely alone, just listening to all of this happening! I remember thinking it wasn’t a good sign…I’m not normally a superstitious person, but I remember sending a text that night telling the children that I loved them. 

Wednesday 27th April, operation day! I remember being wheeled down to the theatre, as I was the first one that day. I remember the anaesthetists laughing and joking as they put me to sleep…

Tuesday 17th May, this is the first day I can remember after the operation…Keith bought me two balloons in that evening, a get well one and a happy Birthday one. 

Wednesday 18th May, my 49th Birthday!! I don’t remember much, but I do remember the nurses making a fuss and decorating my room. 

So, what happened between the day of the operation until my birthday, which was 3 weeks later? I have managed to piece together the events, with the help of my family and hospital notes!! Basically, I was taken into surgery and they replaced the mitral and tricuspid valves. It was a lot worse than they had expected as normally they would have repaired the tricuspid valve, but it was too damaged to be repaired and needed to be replaced. As they were taking me off by-pass, things started to go wrong and it was touch and go as to whether I survived. I understand that they left my chest open for a couple of days and finally closed my chest on Saturday 30th April. I was put into an induced coma and was eventually bought around after a couple of weeks. I’m not sure when I regained full consciousness, but I think it was a gradual process. 

I do have lots of memories from the time I spent in a coma, which I believed at the time, to be real.  However, this wasn’t the case, but I’m sure there is a whole new story that I could tell you about that! It is difficult to tell reality from my memories!

When I had regained consciousness, I found out that I had lost use of all my muscles. I was unable to sit, stand or walk, so needed Physiotherapy to get me moving again. It took months for me to gain enough strength to feel normal and I still don’t feel that I have ever regained full strength to this day. 

I spent about 4 weeks in the cardio intensive care ward, before being moved to the hi dependency  unit and eventually to a normal ward. I was finally moved back to Poole Hospital before being discharged on Friday 3rd June. After spending two months in hospital, I was actually scared about coming home, I had the security of knowing that there were experts around, if I needed them. Whereas at home, I was going to be on my own during the day.

My family were advised that my recovery would be very slow and boy they weren’t wrong! I do not know how I managed to get up the stairs that first night, they have never looked so high, it was like climbing my very own mountain.

My recovery continued, I had Physiotherapy at home, I went for walks around the block and gradually started to be able to do a bit more. 

I had a follow up appointment with the cardiologist and I happened to mention that I had a lump in my tummy, so he arranged for me to have a CT scan. I didn’t really think much more about it, but I then had an appointment through to see the gynaecologist, who I’d originally seen. I was a bit confused about this, but along I went! She explained that the CT Scan had picked up 3 shadows, one in my breast, one in my liver and one in my small bowel. I was referred to the breast cancer unit and underwent a mammogram and a biopsy, but they were pretty certain it wasn’t anything to worry about. They were right…phew one down, 2 to go.

I was then referred to an oncologist, I knew that was to do with cancer, but I assumed it was just to have more tests, to rule anything else out. He explained what they had found, but they needed to do more tests to confirm their suspicions. They mentioned this long word to me, that I had never heard of before, neuroendocrine tumour’s. It didn’t sound that serious and tumour’s can be benign, can’t they? Ever the optimist, I thought, I’d undergo a few more tests and then everything would be ok, but then he continued that the shadow on my liver was metastatic and they were pretty certain that I had a primary tumour in my small bowel, with liver mets! Now, my mum had breast cancer and eventually died from lung cancer and my dad had prostate cancer, so I knew metastatic wasn’t a good thing!! 

The doctor goes on to explain that because it has spread, it is incurable, but it is treatable. My head is spinning and all I can hear is incurable, this isn’t what I expected, or wanted to hear! I remember Keith asking how long I had left to live and he said up to 5 years. I was only just recovering from major heart surgery, that nearly killed me, only to be told that I had incurable cancer! Well someone had it in for me, didn’t they? 

So off we go with more tests, I had to have a nuclear Tektrotyd Scan, oh I was learning all these new words and becoming an expert on where all the different departments where in Poole Hospital. Like most people, I had never heard of this particular cancer and I found it very isolating. It seems that even a lot of doctors and other health professionals have never heard of it either, although that is starting to change now, thankfully!

So what is Neuroendocrine cancer? Basically, it is a slow growing cancer of the hormonal system. It can start almost anywhere in the body and because it can produce so many different symptoms, it can be very difficult to diagnose. I had so many varied symptoms, that I would never have connected together, yet I knew there was something wrong!! Therefore, if you are ever in any doubt, trust your body, you know yourself so much better than anyone else, and tell your Doctor about everything, even if you don’t think it matters!! 

My employer, LV have been amazing dealing with me throughout my illness and I am so grateful to have such a caring and supportive employer. I feel that I should be coming back to work, as I look so well, but it is so difficult to explain to anyone exactly what you go through on a daily basis! 

I am telling my story, as it is one of my aims to make people more aware of Neuroendocrine Tumour’s, because if people don’t know about it they won’t know what to look out for!!! This was thought to be a relatively rare cancer, however, with better diagnostic technology, greater awareness and better recording, people are starting to realise that it isn’t as rare as they first thought, it is just that they are getting better at diagnosing it!!! In the UK 11 people are diagnosed with Neuroendocrine cancer each and every day.