Lets Beat NETs

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Registered Charity Number 1151989

Sharon's Story

 

 

I had not long returned to work following my maternity leave with Orla, when I started to notice a few subtle changes; I was putting on weight, spotty and generally feeling not quite right although I couldn't quite put my finger on or explain the difference. I was convinced something hormonal was causing the changes but blood tests were normal and it was easy to assume the symptoms were due to stress or my age as I approached 40. Still, over a period of about a year I tried various things, including changing my contraceptives, diet, exercise but the symptoms were gradually just getting worse and new ones emerged. I lost strength in my knees, finding I could not get up off the floor if I was playing with my little ones, couldn't bend down to get items off the lower shelves in the shops or climb the stairs without using my hands on the steps to support me. I was becoming irritable, not sleeping, and described myself  as being 'not with it' with my ability to concentrate being very difficult. I was still working full time and I was still managing to do things but it was just taking me so much longer and I could only do 1 thing at once. So, to those that didn't know me well, I appeared quite 'normal' but I knew that I wasn't myself and thought I was probably having a mental breakdown. Then I noticed some facial hair growth, again nothing excessive or obvious to others but unusual for me so I went back to the doctor and after nearly 2 years since my first inkling, I was referred to a specialist with suspected Cushings Syndrome, a rare hornonal condition. One night, I collapsed at home, physically and mentally exhausted and I was signed off work. My ability to concentrate now was so badly affected that for example, if I was sitting down at the table with my family to eat a meal, I would be so focused on how to eat my food, having to say the process in my head ' put fork in food and bring to mouth' that I was oblivious to what was going on around me.The strain this had caused in my family was immense. My older children thought I was ignoring them and not interested, my young children were scared of me. So it was a relief when the Cushings Syndorme was confirmed and at the beginning of 2012 I was admitted to hospital to determine the root cause - usually found in the pituitary gland -  and expected to have an operation to cure it and become my old self albeit may take up to a year for a full recovery. BUT as the tests were done, it appeared my pituitary gland was not the problem and after several weeks and more tests, scans, biopsies, I was told I had secondary neuro endocrine tumours (NETs) in my lymph nodes and liver and that the Cushings Syndrome was actually a symptom of the NETs. We had never heard of these and at this point we were just focused on curing the Cushing's. I was told that the only way to cure the Cushings was to totally remove my adrenal glands which provide vital hormones, all the time, for us to survive. In my case I was producing too much and this was effectively damaging all of my organs and bones, thus explaining the physical and mental deterioration I had been experiencing. In March I had the operation to remove my adrenal glands and now have to take vital life saving replacement hormones throughout the day. Normally,our bodies adjust the level of hormones we need automatically to cope with things such as illness, so I had to learn when and how to adjust my medication and have to carry an emergency injection wherever I go, just in case of shock  such as being in an accident. So, whilst taking all this in, we hadn't really given much thought to what the NETs diagnosis meant for us. We did a little research on the internet and so were semi-prepared to hear they were cancerous but NOT prepared at all to learn that there was nothing that could be done to remove them or try to destroy them. We were simply devastated! The hospital got some funding approved to send me to London for a special scan which told us that the primary tumour was located in my bowel but the spread had also gone into my bones as well as the lymph nodes and liver,  

 

So what now?

My outlook is unknown, this type of cancer is slow growing, I am having a monthly injection which will hopefully slow the rate of growth down. I am told that it is only a matter of time before it progresses. There is no way of knowing how long I have had it but based on the extent of the spread and that we can roughly  date the early symptoms of the Cushings it is most likely I have had it for some years already. Our only hope is that it grows slowly enough  in time for a cure to be developed, although we know this can take years. I am recovering well following the Cushing's but I do suffer badly with fatigue although the level of this varies somewhat, some days I can barely get out of bed and then other days I feel great! But I am learning to manage and adapt to this. I have not been able to return to work but the bonus is I am able to spend some very precious time with my family. Mark works round the clock to support the family financially as this has had a tremendous impact. But this isn't just about me, Mark is a 'solid rock', whilst many of his friends are just getting married and starting their families with lots to look forward to, he had already committed to a sometimes'difficult' path taking on a role as step-dad to teenage girls and now he works many, many hours to provide for us all, as well as many jobs at home, often needing to be a 'carer' to help me, not able to think about a future..as this means facing the propsect of becoming a single parent. My children have all had to adapt, even a change of school for 1 of them. I am so proud of them all for what they are still achieving - we are trying to keep life as normal as possible. So,  I desperately want my family to know that I did all that I could to make sure they had a Mum for as long as possible – So I am writing my story to try and help others and to try and raise some funds - not because I think I am special - quite the opposite - to illustrate that we are a normal family suddenly knocked off track and devastated by this disease – and this could happen to anyone! I want to leave a legacy that my children can remember and be proud of… just like I am of them… and hopefully take some strength to be able to help others too as they grow older in life as I believe this is what can provide you with the greatest satisfaction. Whatever I can do to help this cause may only be very small, but I am determined to make a difference!

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My name is Sharon Heazle, I am 44 years old living with a wonderful partner, Mark (34) and I have 5 (..yes 5!) beautiful children. Before I was diagnosed, I had always been a hard-working busy Mum. Before I met Mark, 9 years ago, I was a single parent raising my 3 older girls (now teenagers) whilst juggling working full time as a senior manager and studying through Open University to achieve both a BSc and an MBA to help my career so I could povide for my family and for a more secure future. Just as I was coming to an end of my studies, I met Mark, and even though he is 10 years my younger he was prepared to commit to supporting me, my girls and the two further children that we had together, now aged 5 and 6.