The cancer that came back

 Sounds grim doesn't it?

 

It isn’t really, I was expecting it because of my Lynch Syndrome. It has reinforced my priorities in life. 

At the time of writing, I realise it has been a few years since my last post, I mean, Dylan is a full grown toddler now! 

21st November 2018:

·        Start of a new life.

·        The day I was saved.

·        The day my life would change forever.

·        A blessing.

·        A curse.

·        The day my body was chopped up and mutilated.

·        The day when my mental anguish was lessened massively.

·        The day when my self-image took a massive knock.

·        The day my risk of cancer dramatically lessened.

Answer: all of the above

During the last couple of years I’ve had to learn to get on with my stoma (nope, still doesn’t have a name) and we’ve had to develop a mutual existence. Relationships require hard work at the best of times, this is most definitely no exception.

After surgery, I knew I needed to find a new normal. and I was told it would be 12 months before anything like “normal” would be established.  Last week I was told it is more like 24-36 months – to take it easy on myself and remember my poor body was a tad battered.

10 days later, wheeling his stubborn wife down to the village church to sing carols and turn on the Christmas lights!
SO… come on Debs – find the light…
Here is a better Question…

Hard work is the result of  4 surgeries in 1 – a long recovery process from losing major organs, creation of stoma and losing my botty!

Like potty training a kid, I had to go back to step one to learn how to control my new body as much as I can whilst in extreme pain. Thank you mr. morphine!  Daily stoma routines are much easier and quicker now, and I could probably change my bag with my eyes shut (I won’t try though!).  I have learnt triggers and what to (and not to) eat and things have settled down in a way I could not foresee this time in 2018.

It feels so long ago that Dad / Uncle Aaron was with me as they wheeled me into the operating theatre – so much has happened and you've all played your role in making me feel better. 

Walking, sitting, moving – all of that was tough, but our bodies are resilient – give yours a little faith! Here I am at the end of a charity challenge where i have run for 66 days in a row for Colostomy UK!

Then we have had to get our heads around this new body, the everyday physical and psychological challenges of living with an ostomy.   This bit is hitting now and the past couple of weeks have been building up a bit in my brain. We had our first clear CT, the end of #Stoma66, the stomaversary – all been building up a bit. Damn! We need some fun this weekend!

An ostomates life is a life that is different from what is “normal” – for 41 years my body worked how it was designed to, then it changed forever.  Sometimes it feels like I’m watching someone else,  sometimes I feel part of a “club”, sometimes I simply hate it. Sometimes I realise I am lucky – if Lynch Syndrome meant I would get cancer again, at least we caught it and I am lucky enough to be under constant surveillance.

Many of us ostomates are likely to feel different to you muggles, but this is because our realities are now different.  I like to try to think positive and believe that with the gift of a stoma there is a gift of a little magic. No matter how grumpy I may get, how much I look at my stoma and think it is ugly, how I may long for my smooth perfectly imperfect tummy again, I have seen darker sides of life, and now try to focus on the light. 

People have stoma’s for very different reasons, but all serious and life threatening ones.

Do we have the upper hand?

Do we see the magic in life when we can, a chance to live, to laugh, to cry, to struggle, to triumph, and another chance to live life to the fullest?

So sometimes sad or bad things happen, but it is how you deal with it that will make the difference to your happiness. We can only control how we react to things beyond our control - please always see the positive xx

The holiday that I always go on

Menorca

Mi Casa

There is nothing to hate about Menorca

Playas de Fornells is a self contained designer holiday village which is relatively quiet as non residents do not tend to visit the area. There is a small rock beach next to the apartment & a gorgeous natural beach in the bay ( Cala Tirant ). 
There is also a pool, bars, restaurants. The villages are set in collections on the hill sides overlooking the bay with communal pools & gardens. 
The local fishing village of Fornells is close, & here you can go scuba diving, book kayaks, shop, book day trip catamarans, enjoy lovely restaurants & local artisan markets.

But most importantly my second home is there. 

This view: 

Awesome right?

Do you recognise it? 

You have all been there at one point or another, but you are still young, you may not recall all the details like I do.  

The smell of the spanish paint on the front door. 

The feel of the breeze on your face as you open the patio doors in the morning.

The sound of the waves gently lapping onto the rocks.

The emotional well being from simply being here. Home.

I have been coming here since I was 5 years old. (ok, if you must know that is now 35 years) and it is a sanctuary. It is where I go for peace, for a rest, for some pomada (more about that when you are 18!)

It is my intention that you carry on coming here, that it becomes for you as special and spiritually helpful as it is for me.  

"Kids weekends" may take a whole new meaning when we are all trusted to get on a plane together without the parents!

We have a new playmate!

Meet Dylan

The latest in our gang!

Well, since the day Barnaby moved in with me in Gillingham I knew that we would be good friends, more so when I realised that his girlfriend was absolutely fabulous too!

Years on, over six years down the line, we are all still in touch, and Di has played with all of you at one time or another, confessing that she thinks you are all cute and special in your own individual ways.

After trying for a long time, so pleased to introduce you to Dylan - a much wanted baby who is as cute as a button too.

You are all very much wanted by your mums and dads - and that is such a nice thing to see.  I really enjoy hanging out with you all, and a perk of being Auntie Debbie is that I can be a little nuts with it and have crazy fun that I can't get away with when I am adulting!

So here he is, the latest in our gang.

Viva La Gang!

The dog that made me realise I am a mummy!

"I don't want a dog!"

I've never had a dog - and when Aaron and I started dating I had a cat, Jack. She was my first pet (well, there were "those" tadpoles and the gerbil from Yorkshire) and was pretty independent which suited me to the ground!

One of Jacks strong points was that she was very content to be alone or be cuddled, the only thing she needed from me was feeding (yes, "she")  I loved her a lot and Aaron learnt to tolerate her (I caught the odd tickle when he thought I wasn't looking!)  Sadly - after a house move, 8 months later she went out one day and never came home.  We've been reassured that if she had been involved in an accident that we would know (chipped) so I live in the ignorant hope that she found someone with better cat food than me... I still cry years on, she was an absolute darling and I did love her a lot.

Then came Luna... Aaron wore me down! Told me he needed a dog for work... promised me he would look after her and so we went to meet her, and yup - I fell in love...

She moved in and very quickly became one of the family, and the one thing I love about her is her ability to be so wonderfully gentle with all of you kids. Protective even. Eventually you all got the hang of not running so she didn't, and not waving your arms in the air like you just didn't care, and she is calm and happy to see you all.

What I was not prepared for was my emotion when she got sick.  Eating poison that was not disposed of as hazardous waste should be, out in a field - being rushed to hospital to be worked on for 8 hours flat. When the vet said "she is dying" my world was crashing - this emotion I was feeling, I didn't know it. 
Maternal love. 
Ah, so that is what it feels like! To see my dependent baby fighting for her life and not being able to help, and actually feeling guilty that it was my fault...

A few weeks later after another "she's dying" and a massive surgery, she is recovering at home and its receiving a LOT of love, looking forward to seeing you all at Christmas time.

But what I need you to consider is, that your parents have those emotions and more for you - so do me a favour please? 

• Don't forget to let them know you are safe
• Don't forget to call/text
• Don't put yourself in positions of danger
• Don't drink and drive
• Don't do drugs
• Don't walk unsafe routes at night

            All of that sensible stuff - cos that feeling, is the worst feeling I've ever known, including being told I may die...

It's been a while...

With new email addresses, computer changes and life in general, it has been a while since I blogged.  

I think I have managed to re set, and we should be back on track... safe to say you guys are still filling my heart with love 

Be back soon! 

The posh coaster

Why my pen pot sits on an Ivy coaster - And no one else sees it but me

Sometimes simple reminders are enough to push ourselves everyday. One of the great things about my job (European Event Director, Revolution Events - see if this page is still active - https://uk.linkedin.com/in/deborahpuxty ) is that if you work hard you play hard.

Now a few years down the line (nearly 10) I cannot play as hard as i used to, and i am expected to work harder than i used to - so when there are benefits for my efforts i will take them.

A simple coaster from a nice restaurant reminds me that if i put the effort in then i get rewards.

The Ivy restaurant coaster

5 days a week I encourage myself with a simple visual aid - if i put the effort in, i get benefits.  This is not just work, it can be attributed to all aspects of life.  I work at relationships, personal and professional - i work at my job - i work to stay (fairly) fit and so on.  The world doesn't owe anyone a living, so make your own luck and happiness kids. 

I'm part of the Lynch Mob

and what it really means...

Tuesday 23rd December 2014

This photo is in the box. Because it represents me.

I have Lynch - hypermethlyation of the MLH1 promoter gene to be exact. Yep, I didn't have a clue either.. here is a quote... 

Clinical Information

Hereditary nonpolyposis colon cancer (HNPCC), also known as Lynch syndrome, is an inherited cancer syndrome caused by a germline mutation in 1 of several genes involved in DNA mismatch repair (MMR), including MLH1, MSH2, MSH6, and PMS2. There are several laboratory-based strategies that help establish the diagnosis of HNPCC/Lynch syndrome, including testing tumor tissue for the presence of microsatellite instability (MSI-H) and loss of protein expression for any 1 of the MMR proteins by immunohistochemistry (IHC). It is important to note, however, that the MSI-H tumor phenotype is not restricted to inherited cancer cases; approximately 20% of sporadic colon cancers are MSI-H. Thus, MSI-H does not distinguish between a somatic (sporadic) and a germline (inherited) mutation, nor does it identify which gene is involved. Although IHC analysis is helpful in identifying the responsible gene, it also does not distinguish between somatic and germline defects.

Still not sure? Yeah, me too and I have had a couple of years to digest this. Basically Lynch Syndrome (LS) is a rare condition that runs in families. Conditions that run in families are known as familial or hereditary.

LS is named after the doctor who discovered it.

Lynch syndrome is the most common cause of hereditary bowel cancer. However, fewer than 5 in 100 (5%) of all bowel cancers are linked to LS. 

People with LS also have an increased risk of developing other cancers. In women, there is a higher risk of womb (endometrial) and ovarian cancers. Other cancers that can occur in people with LS include stomach, pancreas, small bowel, ureter and renal pelvis cancers.

Knowing about risk and having regular screening may help prevent some cancers. It may also help others to be found in the early stages, when they're more likely to be curable. So I get monitored when I feel I need it.  I don't get monitored as much as I would like, but that is because I am neurotic! But whilst at first I felt like I had been given a death sentance, I actually realise it is a life gift.  I am only too aware how quickly life can be snatched away, and serious illnesses can take years to recover from, so every day should be special. 

 You never know what personal demons people are facing, so you never know how your kindness can change their lives.  It's nice to be nice, it makes other people be nice, and one day, hopefully the whole world will join in. 

Kids - be kind, be happy, look after your bodies they are precious. And look after each other 

x