Tuesday, 10 November 2015

NET cancer awareness day


This is a wordy post, if you are here only for nail pictures please scroll down, there are some!!

November 10th already?  It only seems 5 minutes since I wrote a piece in December about this, published in January.   Today is Worldwide NET Cancer Day, a day to try and raise awareness of Neuroendocrine Tumours (NET) something I was totally oblivious to until Friday December 12th 2014.  A date that  rocked my world.  It was a Friday morning, hubs and I called into Greggs on our way to work and picked up a sandwich each.  We both had chicken mayo baguettes. Funny the trivial facts you remember.

I decided to chance my luck at getting a duvet day at work, I was successful and left to go home. Once home, I sat down and turned the tv on then decided to eat the aforementioned baguette when my husband Lee rang me, anxious and upset, saying he had had a call from the hospital saying that they needed to see him NOW.  I never did finish that sandwich and nor have I eaten that type of baguette since.

We arrived at the hospital and saw a consultant who had dealt with him after an earlier admission in October with a mystery pain and vomiting.  Scans had been taken and behind the scenes, without us being aware, the surgeon had been requesting second opinions. He had done this several times, and after some study of the scans they were certain he had cancer.  He said it was so rare that he had only seen one other case himself in the eight years he had been based there.  He called it carcinoid and explained it was so slow growing that chances were Lee had probably had this for several years before presenting with any major symptoms. The consultant explained that the outlook was positive, that it was the best of a bad thing.

We were sent away clutching each other's hands and in shock. Lee had to get some blood tests done.  I took a snap shot of the type of test requested as I wasn't sure I would remember the name.  By the time we got home from the hospital, I had read a lot after getting on Google.  One of the first sites I found was the worldwide NET day website and from there I found further info.

Source
Unfortunately the story of my husband's NET is fairly common - often patients are not diagnosed early enough to totally "cure" it by removing the primary tumour, indeed the scans done in the January revealed it had spread to his lymph glands and there was a further growth in his liver. Within two weeks of the scan results Dr Gillian Tierney at Derby Royal Hospital operated and removed the primary tumour and around 18 inches of the small and large intestine - we later watched her performing similar surgery on ITV's Superhospital, a fly on the wall documentary filmed in December at that hospital.  Lee was in the hospital for a fortnight, then came home.  The nursing staff were brilliant, both at the hospital and the district nurses who came out to him.  

The follow up with the Oncologist was positive, although the surgery had revealed some inoperable spread to the lining of his bowel, despite this we were told chemo wasn't needed "like using a slegehammer to crack a nut".  He offered to refer my husband to the Royal Free in London, which is quite a way to travel for us.  We live between Nottingham and Derby.  Prior to this meeting I had researched varying treatments and found that Queen Elizabeth Hospital in Birmingham were a European Centre of Excellence, so we requested that he was referred there - just an an hour up the road.  Birmingham have been fantastic, sorting out appointments and scans to be on the same day so we only need to make one trip every once in a while.  There were three options, do nothing and monitor, monthly injections or surgery. Opting for surgery, the liver tumour has been removed with radio frequency abalation - done under a CT scanner, a radiographer inserted probes directly into the tumour and microwaves the tumour: effectively they cooked it.  I am no medical expert so that's my dumbed down explanation.  Subsequent CT scans have shown that this was effective.

This is where we are now, the follow up CT scans were done in October.  A different type of scan is now required which involves a trip to Liverpool, to see how things are now.  Then it's simply monitoring, done via blood tests and urine tests to see if any hormone levels change.  

Some NET patients never have their primary located, I read of one patient who had just had her five year appointment Oncologist - in other types of cancers she would be considered clear, yet she still had it hidden away somewhere.  

As part of awareness, I guess I should explain a little about symptoms. Very close to IBS for gut nets, I saw a column of IBS and NET symptoms side by side and can understand why it could easily be missed. In the case of hubs though, his symptoms were far worse. I have IBS, but I never skip meals to avoid issues. Prior to his op, if we were travelling Lee would fast for 24hrs and only eat after we got there.  Over time his issues got more severe, but we never noticed as it had happened gradually. We went from days out and eating out to take out or ordering in and not going anywhere because of the chronic issues he had after a meal. We figured out his problems were worse after any type of pork so he cut out anything pork related thinking maybe he was intolerant - perhaps that was a coincidence or maybe his body found it harder to deal with. NET tumours in the liver create hormones causing symptoms which can include flushing of the skin, diarrhoea, wheezing.  A colleague's sister has a pancreatic NET which was diagnosed only after skin issues were caused by it.  The symptoms are all pretty vague and general.  Hubs felt something was wrong, but didn't persist at the doctors once his scans had been done. Luckily for us one doctor thought zebra and re-examined the scans, asking other people to review them. NET growths are often slow, taking up to seven years before the patient presents with problems.  For more info please click through to NET cancer awareness day site and see the full info there.  

Onto nails - I took my pink zebra theme from the NET Cancer day website colours and the "think zebra" phrase.  



I used Beauty UK Lollipop, OPI My Boyfriend Scales Walls, Smitten Black Mamba in this mani.  I did the stamping on my Ubermat - I put the white base down and then used a Bundle Monster stamping plate to create a decal.  I used the tip trimmed from my ring finger as a french tip on my other hand.  The ribbon on my thumb was done with acrylic black and white paints.




Some of the other lovely ladies from the British Nail Bloggers are also planning pink zebra manis in support of NET awareness, please see the links below.


6 comments:

  1. Gorgeous mani for a great cause ♡

    ReplyDelete
  2. Please know that you and L are in our thoughts and we're sending all the positive vibes for his continued recovery. Thank you for sharing your story with us (twice) and for initiating us to raise awareness of this type of cancer. I'll never look at a zebra print the same. ;)

    Also... I love your mani!

    ReplyDelete
    Replies
    1. I agree with that comment! I've never been particularly keen on zebra print, but I'll always associate it with this now and that definitely gives it more meaning.

      Lovely nails of course, and all the best to both of you for continued recovery.

      Delete
  3. Beautiful nails :) Thank you for organising the link up - I had personally never heard of NET until you mentioned it. Best wishes to you and your husband x

    ReplyDelete
  4. Emma, my heart goes out to you and all the family. Stay positive, be strong. There is always hope and everyone is different. Love to Lee and all the family x

    ReplyDelete

Comments are welcome, I have approval on so I do read and appreciate all comments left.