Awareness. NET! Our story.

Instagram gives us tiny snippets.  Little windows into other peoples lives.  Some snippets are very well curated, you will only see immaculate make up, tidy rooms with perfectly positioned props and manicured pets. The odd child, with just the right amount of hair ruffle going on,  and marbled tables with flower arrangements to die for.  The iPad or iMac, sitting in the corner of the room, showing the time in a cool, flip clock, retro format, always accompanied by the correct green plant in a dishevelled 'basket style' pot. Moroccan uber cool in summer, Danish (or Swedish) Hygge in the wintertime with a turmeric coffee on the side.  It is all lovely and I do relish images like this.  I know it's not necessarily real life but it is not meant to be.  I can see that.

My posts are directed at the 'what the f*** should I wear today?' element who peruse instagram for some, dare I say, fashion and style, inspiration.  I use it this way.  I have saved an enormous amount of images on my private page and use them daily to decide what to wear. I use a tryptic format because my mirror is not wide enough to give me a decent shot in one.  It is that simple. I like to do selfies because I have complete control and, after years of doing the damn things, I am quite adept at them.  I can do my photos and run an instagram post, including all the hashtags and blurb, in under fifteen minutes.  If I used a small photographer, or clickers, I would be farting about for an awful lot longer. They are honest and effective.

Instagram posts can, however, hide the real truth of many daily struggles.

A few months ago we were due to travel to Yorkshire to visit my Husband's family.  I was really looking forward to a few days away.  I love visiting our Yorkshire contingent.  I had a phone call in the middle of the morning.  The Husband couldn't make it.  He was in abject agony.  I feared a stomach ulcer and insisted he book in for an appointment at the surgery.  He must have felt pretty grotty as I encountered no resistance at this suggestion. He got so bad I urged him to go back the very same day. He did, without any quibble.  The only action was for him to visit a gastroenterologist.  This he did, two weeks later, and a CT scan was organised with some haste. His symptoms had been similar to the cramping that you can experience with, for example, IBS or constipation.  He was also experiencing night sweats,  and flushing can occur,  like a menopausal woman! (This is very important, as you will find out later....)

It was worse than a stomach ulcer.  He had two Neuro Endocrine Tumours in his small intestine. The information took a while to digest (excuse the pun!)

What the hell were Neuro Endocrine Tumours? Well they are rare but not unheard of and terribly miss diagnosed.  Often not found until post mortem. They are not life-style related and, apparently, can occur at any adult age.  I had never heard of them before and the gastroenterologist explained to my, shellshocked, Husband that if the tumours were plain bowel cancer then he could be sent to one of a hundred consultants.  Due to the rarity of his condition he could see one of two specialist. Scary stuff. Luckily his specialist seems to be a bit of a world authority on this type of cancer.

We are now six months down a very long line. He has had many appointments, which have included at least three scans, two of which were PET scans which sound gruesome. An MRI, shed loads of blood tests and, eventually, a four hour small bowel resection and the removal of, as it turned out, six tumours.  sixteen days in hospital, home for a week, suffered with anorexia and extreme nausea, back in hospital for a four day stay, intravenous nutrition, weird hormone injections and finally allowed home again.  He is now two stone under his normal fighting weight but at least he is eating normally and gaining strength each day.  It is amazing how quickly a human body can loose condition.  The loss of fat and muscle mass is astounding.

What scared me were the symptoms.  The GP, I have recently found out, was astounded at his final diagnosis.  It shouldn't be this way.  After much googling (I know it is one of THE most dangerous things to do) we have come across quite a lot of information.  My greatest concern is that it seems many women do suffer from Neuro Endocrine Tumours (NETs) but are diagnosed far too late. The symtoms are spookily similar to menopausal ones (remember me mentioning the hot flushes!!!) The symptoms are also similar to bog standard IBS!  I would suggest pushing for further tests if your IBS symptoms pop up far too regularly.  If caught earlier enough it can be cured or managed.  As the name suggests the cancer is closely linked to the Neuro Endocrine system (hormones.)

It is rare (only 1600 cases in the uk last year)  but it is important to raise awareness because it does happen.  I had never heard of it before and I am surprised at the vague, wishy washy symptoms. It is shocking in it's similarity to many other complaints.

The NET patient foundation have an Instagram page.  I want to raise awareness, we didn't expect this to darken our doorstep!

I am linking up with my friends at Cheshire Pressed.  They sent me this fabulous T Shirt, as a bit of fun at the launch of my Hashtag.  I asked if it could be produced to raise some funds and awareness.   John, at Cheshire Pressed, thought it a good idea.  I am grateful for his generosity and kindness.

The #rockitdaily T Shirts will be available in women's and men's sizes and will be priced at £19.99
100% of the profits will be donated to the foundation.  Thank You, in advance. Visit cheshirepressed via Instagram.  I wear mine A LOT!!! It is the perfect T Shirt shape, which is a huge bonus.

I don't want to put the wind up anyone.  God forbid but, like anything, knowledge is power. If you feel something is not quite right, keep going and get further checks done.

 Information, about the Tee shirts, will follow soon.   I wear mine with pride.  I am 50 and I can honestly say that I am 'rocking it' more now than I did twenty years ago!  It is never too late or, indeed, too early to start.

Keep safe, please don't worry, but be aware.

Love Helen XxX

You will find much more information at

www.netpatientfoundation.org
and on Instagram
netpatientfoundation

Instagram cheshirepressed  (Sustainable clothing made from organic and recycled materials)

www.cheshirepressed.com