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

The Granddad that got blown up in a tank...

On the 70th anniversary of D Day, we will remember them.

6th June 1944

World War II (WWII or WW2), also known as the Second World War, was a global war that lasted from 1939 to 1945. 

My Granddad was deployed as part of the D Day Invasion -  among 100,000’s of other soldiers crossing the channel to land of the shores of Normandy at the start of the drive to Berlin.  Intelligence reports suggested that the Normandy region was less well defended than the area around Calais. The length of the sea crossing made it an unlikely landing spot for the Allies - this is what the Allies hoped that the Germans would think.

I always knew that Granddad was involved and part of the invasion - he was proud of what he did for his country and quite rightly so.  Growing up I was aware that he supported the Normandy Veterans Association whenever he could - going on marches, parades and also talking at schools. I'm not sure what he said when he went to schools, because he never gave me, my brother Pete, or cousins Vikki and Richard, much detail about it. 

I remember he taught me how to do the Sherman tank salute (hold your hand, palm forward, against your forehead, just above the right eye - he always gave me a cheeky finger wiggle too, but pretty sure that was not part of the actual salute!)

I knew his tank was attacked, but again, my knowledge was pretty limited, and when I asked my mum what she knew it seemed hers was too. Those few days of his life were never really discussed. 

I lost my grandparents within months of each other and it was a sad time for my family. Granddads funeral was a military funeral, very emotional and there was even pride in his last goodbye to the world he so bravely defended. It was only many years later that I discovered that he had done an interview with the Imperial War Museum about his experience and so I went to go and listen to the archives. A great and interesting day, and emotional from the moment I heard that most familiar voice that had sung to me as a child and spoken caring words as I grew into adulthood. He visited Normandy often and had many friends there. A father and daughter came to England for his funeral and stayed with my Uncle Steve and Auntie Sue. The night before the funeral we all gathered at my grandparents house and they joined us. He did not speak much English so his daughter translated a letter he had written. He was thanking my granddad for all that he did to free them and us and to give us all the lives we now live - he was thanking him for having such strong and brave comrades that did not survive. He was thanking him for saving his life. With that line (most of us in tears at this point) he pulled out a little package. It was a small union jack flag folded up. He carefully unfolded one of the sides and showed us some earth. Earth that he had gone and collected from the graves of my granddad's tank colleagues who died in action and are buried in Aromanche - so that he could walk into the next life with these men by his side. 

When leaving the archive room, the man asked if the Mabel Tomalin interview was of interest... Was it?! I never knew my Nan had done one, and here i was listening to her telling the Poole stories of what happened to those keeping the country going. Amazing.

Just because we don't always talk about things we have done and experienced, it doesn't mean we haven't had our own hardships to face.  You never know what troubles someone may have in their life - therefore kids, be nice to everyone - you may just make their day.

Roy Ernest William Tomalin's audio can be heard on this link. 

http://m.iwm.org.uk/collections/item/object/80018709

Mabel Irene Tomalin's audio can be hear on this link

http://m.iwm.org.uk/collections/item/object/80018708

D Day - what happened... 

4.00	Dwight Eisenhower gave the go-ahead for the invasion. The plan drawn up expected 132,715 troops to be landed on five beaches with 23,400 paratroopers to be dropped further inland. 6,483 ships were involved. In case the invasion failed, Eisenhower prepared a statement that said: "Our landings in the Cherbourg-Harve area have failed to gain a satisfactory foothold and I have withdrawn the troops. My decision to attack at this time and place was based on the best information available. If any blame or fault attaches to this attempt, it is mine alone."
22.00	Five fleets of assault ships left their English port bases. "We slipped anchor and headed into the Channel to overtake the grey columns of troops transports and landing craft, which now stretched to the horizon and beyond. They filled the scene as far as the eye could see. Overhead, the sky was filled with an aerial armada of bombers."  John Gough, radio operator on board a destroyer.
22.56	Six gliders took off from Tarrant Rushton, Dorset, for Pegasus Bridge at the eastern end of the beaches. "No smoking till we were airborne; so to ease the tension we sang para songs to the tune of 'Knees Up Mother Brown', the end of the chorus going "I'll always keep my trousers on when jumping through the hole." I wondered if that might be true that night. Sgt Edgar Gurney, 5th parachute Brigade
June 6th
00.16	Three gliders landed just 30 meters from Pegasus Bridge. Commandos led by Major John Howard captured the bridge. "We were coming in at 90 mph on touchdown. I suppose that really was the most exhilarating moment of my life. I could see the bridge tower 50 yards from where I was standing. Above all, the tremendous thing there was that there was no firing at all. We had complete surprise, we had caught old Jerry with his pants down." Major John Howard
00.30	The Café Gondreé by Pegasus Bridge is the first building to be liberated in France. Allied troops there were given champagne by the owner. "Inside (the café) I saw a small French girl, ashen-faced and scared to hell. I gave her my bar of chocolate but she still did not smile." Albert Gregory, medic.
01.00	American paratroopers of 82nd and 101st Airborne make night jumps into the Cherbourg Peninsula at the western end of the beaches. Because of the cloud, a number missed their target and drowned in flooded swamps.
02.45	Men began to climb down from their ships into their landing craft. "The landing craft was rolling in every possible direction; the sea-sickness pills had failed. Lying still only made one feel worse." Eric Broadhead, Durham Light Infantry heading for Gold Beach.
04.30	St. Mère-Eglise was the first French town to be liberated.  "(American) paratroopers began jumping out by the hundreds. I saw one paratrooper land in the road but a German killed him before he could get untangled from his parachute. Another (paratrooper) was as killed near me. I will never forget the sight." Raymond Paris, resident of St. Mère-Eglise
05.30	Naval bombardment of the shore began. By 06.00, aerial bombing of German fortifications at Omaha andUtah started. "As we reached Omaha beach, all 40 aircraft dropped their bombs. More than 100 tons of bombs exploded in a few seconds. This was the only mission over Europe when I felt the concussion of our own bombs." Henry Tarzca, on a B-17 of 8th Air Force
06.30	American forces landed at Omaha and met stiff opposition. They suffered heavy casualties. 'Swimming' tanks, on which the Americans had placed great faith, sank out at sea due to the unexpected swell and because they were landed too far out.
06.31	American forces landed at Utah. The landing craft landed a mile south as a result of the tide, but the landings were a success.
07.10	US Rangers  (US Army 2nd Ranger Battalion) started an assault on Pointe du Hoc.
07.25	British landings began on Gold Beach. The success of the landing was aided by 'swimming tanks' (Duplex Drive Sherman tanks) that did get ashore. British troops landed on Sword Beach. Commandos led by Brigadier Lord Lovatt joined up with the men at Pegasus Bridge.
07.30	Canadians landed on Juno Beach, again aided by DD Sherman tanks.  "The German machine gunners in the dunes were stupefied to see a tank emerge from the sea. Some ran away or just stared, mouths wide open." Sgt Leo Gariepy
09.15	General Omar Bradley thought about abandoning the landing at Omaha because extra men could not be landed as the beach and sea was crammed with dead bodies.
12.00	The Americans had made successful advances up Omaha Beach aided by gunfire from small naval vessels that sailed as close to the beach as they could.
22.07	A ten-miles deep and sixty miles wide bridgehead had been established

Understanding Crocodiles

Meeting inspirational people. Then buying their mouse mat.

January 2006

Travelling to Australia had always been a desire of mine, but due to the expense I just never thought it would happen.  I'd started saving but it would take a long time as I was already trying to pay off debts at the time. Any sensible person will tell you - there is no point having savings if you have debts!

My trip became reality when my maternal grandparents funded it. I would much rather that they were here to enjoy, but the sad situation was that they died within 48 days of each other in 2005, leaving all of the grandchildren (in age order you have cousin Vikki, brother Peter, cousin Richard and then me - all 1 year apart) some money to spend on something we really wanted to. This for me was to see Australia. My grandparents helped me realise a dream, I wish they had been around to see it. I still talk to them though, no one is ever truly gone if they are in your heart. 

So off I flew, across the world,via Shanghai, (an experience!)

 and spent time with my university friends Clare (who was living in Sydney) and Anna (who was also visiting Australia) - two of those dearest friends that you know will be in your life for a long time (hold on to those people). Christmas and New Years was spent in the company of these amazing girls and many good times, including a trip to Hunter Valley to taste wines... ah perfect!

I then made my way up the coast to Port Douglas in Cairns, to realise one of my bucket list items of scuba diving the Great Barrier Reef, then made my way down to Brisbane, with the sole intention of visiting Steve Irwin's famous Australia Zoo... 

Steve Irwin was an absolute champion of his time, a legend in the world of conservation, animal welfare and life, and was just a character that was undeniably one of the best campaigners for animal rights the world has seen. Starting working in his families zoo in the 1980's he led it to a worldwide status that was held in high esteem - and all of the monies were ploughed back in to helping animals. This guy was a hero. So to visit his zoo was a dream come true, to see Steve there was beyond my expectations!

I had already learnt a lot about crocodiles and their behaviour from reading articles and seeing programmes from Steve, but to be there and learn from the master himself was awesome! He took to the central demo area (the crocoseum) with his wife Terri and team and taught us and showed us behaviours from the crocodiles that made you see them for the beautiful creatures they are. Yes they have big teeth and look scary, but looks can be deceiving,these guys have been around for centuries, they needed to be built hardy! It was just an amazing time, that involved chatting with Terri, cuddling a koala, and walking a wombat on a lead.  Most importantly, the chance to see one of my idols in action just blew me away, and inspired me to talk... what ever you are passionate about, and if you can help people see things in a less daunting and scary way, then do it.  

Perceptions are all very individual, but you can help widen them.

So thanks Nan and Granddad, you helped realise a dream even bigger than I had imagined.

The spiritual adventure I went on

Ayahuasca leaflet

Peru, December 2012

One of the things I have learnt as I have got older is that I like a challenge. It helps me to set goals and I enjoy working towards them. This particularly works in the "keeping fit" stakes for me.  If I set a challenge that is going to push me, it means I scare myself into doing it - hence planning to trek the Inca Trail to Machu Picchu in Peru with Elly. 

I met Elly on a girls surfing course in Croyde years back, when Louise and I hit the waves. Elly and Lorna were also there as a pair, and there was something really attractive about the pair of them - mainly their laughter i think, especially in light of Elly's poorly foot, she was still seeing the positive side of things - they showed good heart and Louise and I jumped at the chance of meeting them in the pub that evening.  A night at the Thatch in Croyde with 3 ladies who are darn good fun was fabulous!  I knew these ladies were keepers and i am so pleased that they are both still in my life.  We don't see each other often, but that doesn't matter, sometimes you just fall in love with someone because and you don't need to be there all the time. 

The whole trip to South America was not just about the trek though, there are so many ecosystems just within Peru that we wanted to travel around during the time we were there. We spent time at the beach, doing some surfing, in the City of Lima doing some sight seeing, of course trekking and also we went to the jungle to stay with my dear friend Caroline, who has now been living in Peru for about 5 years. Visiting her home in Tarapoto was an honour and a joy. Caroline and I became firm friends when at Highsted Grammar and she has always remained dear to me. We have our own trials and tribulations through life, but she has always been a loving soul and I hope I have been a touch of support to her that she has been to me. 

Tarapoto is the commercial center of the District and one of the larger metropolitan centers in the Amazon Rainforest.  Caroline has been doing a variety of work there - including legal translations, nature work and crystal healing and massages. Through her work with the massaging she has been working at a retreat HAMPICHICUY , (pronounced Hampi-chee-coo-ee), whose name in Quechua means "the place that heals" led by a native american shaman, Javier.

"Currently, the individual needs to "relearn" the manifestations of his conscious and unconscious, regain sensitivity to themselves, to their environment and awareness of the human condition that is linked recover their other senses to emotions, such as intuition and spirituality, so lacking in recent times."  Hampichicuy promotes spiritual development, taking in the world Indigenous Amazonian medicinal plant, an approach to the spiritual dimension that all living owns, develops and improves perceptions coexistence with the natural and social environment, generating communication and a balance between the rational and intuitive. Some of these medicinal plants are considered masterpieces "visionary" because while "cleanse" the body and "cure" the soul, reveal our essence as instinctive and intuitive sidelined by the intellect. They are also considered "sacred" because they represent the wisdom of various indigenous peoples and because through this know their traditional doctors have the "gift of healing".

With things that had happened to me over the last 6 years, I felt like I had lost a part of me, that it had shut down to block things out. I was aware that to "be" me , I needed to accept me, I just didn't know how to do it. Caroline, Elly and I spent many an hour discussing Ayahuasca, and how this may help me regain my own spiritual self as well as the scientific research that has links to altering genetic mutations... Since being diagnosed with Lynch Syndrome my fears of illness and death have elevated to levels that were affecting my every day. There were times when I began taking risks and trying to block pains out with alcohol and constantly being on the move, but this was taking its toll on me and becoming a vicious circle. I met Javier and we discussed the experience and it seemed right, albeit daunting... 

For centuries, Amazonian shamans have used ayahuasca as a window into the soul. The sacrament, they claim, can cure any illness. I had been struggling in my own body, not sure how to be Deborah, looking but seeing nothing,the idea of light seemed inconceivable. 

I purged... Never thought I would say I was in a room with a french man drinking a potion from berries that would make me vomit over 2 litres into flower pots... purging is to cleanse the soul, to be pure and hold no negativity before your experience. The ceremony began, 4 of us (and Caroline for translation). The shaman prayed, sang, smoked, covered us in tobacco smoke and then we drank.  I lay down, my mind swirling down a tunnel of light,oh the colors, the images, the things i saw! The emotional charge was high, especially some of my past that I saw, but it went, I SAW and more importantly LET it go.  I floated along the most beautiful colors and ribbons of light, I could feel the vision fading, i was returning to my body, in  a hut, in the jungle. A shaman smiling peacefully at me.

All the while Elly was watching Pirates of the Carribean eating cheetos, a night i would have liked too! 

Many things I learnt from this experience, that are too personal to say, and this experience was all natural and STRICTLY controlled. No illegal drugs were taken, nothing I did was damaging to my body or mind or breaking any laws. I will share with you, that in my opinion, the spirit and soul are precious, look after them and nurture them so that you can be true to yourself, because then you will find peace.