See Athens and fly… — Gladrags & Bags

For the last few months our family, and a few of our friends, have been going through hell.

A couple of months ago it became very clear that our eldest son, Sam was suffering from extreme distress.

When cajoled into opening up we discovered an entire shit show of a potential catastrophe.

It turned out that he had been feeling unwell, very unwell in fact, and suffering in silence, with a whole raft of disturbing symptoms.

On our, and Milly’s insistence he made an appointment with his NHS GP (who by the way is an absolute star. I’ve never heard of care like it and it gave me such comfort at a very difficult time).

Tests were performed and they found that Sam was suffering from severe B12 deficiency, very low folate, Low iron, high white blood count, all of which were causing him extreme fatigue amongst many other issues.

Those were the ones we knew about first. Then he opened up more. He’d been quietly suffering from weight loss, abdominal pain, bleeding, and constant diarrhoea.

He felt too traumatised by his previous experience of cancer when he was 13 years old (Nasopharyngeal Carcinoma), and obviously my experience of bowel cancer (diagnosed 6 months after he was), to face what was happening to him.

He then went back to his GP and gave her the full picture. She sprang into action. And for that I will be forever truly grateful.

Sadly, with the state the NHS has been left in from underfunding, under staffing and covid, it would have meant an extremely long wait for care.

We felt no choice but to go private. This is our child, and although now a grown man, nothing is more sacred than keeping them safe from harm.

Sam started having B12 injections to counteract the deficiency, only to find his body couldn’t tolerate them. He started vomiting and had flu like symptoms and a rash.

So he has a deficiency - but also an allergy/intolerance to the cure.

As his GP jokingly said to him “it could only happen to you Sam!!”

It was also discovered during all the testing he was having that he had the stomach bug H Pylori too. So he started the treatment for that as well.

Thankfully, Sam was seen by the private colorectal surgeon quite quickly after he spoke up about all the issues he was having.

He had a colonoscopy within 2 weeks of being referred. Unfortunately though, the results of the biopsies taken during the colonoscopy, due to a backlog at the labs, meant for a very long wait.

It has been 5 weeks of pure hell, in total though about 8 weeks of extreme mental anguish.

Five weeks of knowing that the surgeon definitely found something during the colonoscopy but couldn’t be sure if it was cancer or Crohn’s disease without the test results.

Five weeks of what ifs. Five weeks of knowing it’s something but what? Five weeks of bartering with the universe - pleading with it.

The poor man has been through enough. My God, really really enough.

Plus knowing that Crohn’s isn’t particularly the easier option of the two necessarily.

After all, my cancer was a one off. It was cured and I was fixed and set free to live an incredible life.

Some people with cancer do not have that result of course. I couldn’t be more aware of how lucky I got.

Some people with Crohn’s have a miserable existence. Some fare just fine.

There were so many variables going through, racing in and flooding our minds. Maybe more so because of the shock of it all. It all melted into one mass of fear, life has been incredibly hard to carry on.

We have just been putting one foot in front of the other and got through each hour, day by day. What else could we do? With the experience we’ve had in the past, we know you just have to carry on.

Up until a few months ago we were unaware of any issue, compared to the now, being frozen with terror of the what ifs.

Thankfully Sam’s surgeon contacted him last week while Sam was away sailing;

Long story short, when Sam had cancer when he was 13, he was invited on an Ellen MacArthur Sailing Trust trip for children with cancer. He fell in love with sailing there and then and progressed through the ranks and trained to be a crew member for the trust.

He hadn’t sailed since Zak was born, but the trust had severe staff shortages the other day for one of their upcoming trips and asked Sam if he could help. He said yes in an instant. One of the reasons was that he feels very grateful to the trust and wanted to help them out. And one reason was if he got the worst news possible, he wanted to make the most of every precious second he got. (I’m so proud of both my boys for their tenacity and resilience).

Anyway, the surgeon rung Sam with the biopsy results. He has Crohn’s disease. It’s a double edged sword because it’s not an instantly better prospect than cancer, but at the same time cancer would be too much to bear again.

(Crohn’s is better than stage 4 cancer of course. Obviously there is no comparison that can be made to that).

So basically Sam had good/news bad/news. But even the good news is still a bit of bad news.

Is Crohn’s actually the better option than cancer in stages 1-3? That I can’t answer really. No one can.

Mild Crohn’s is the best we can hope for. But hoping for it doesn’t make something so.

I was stage 3 colorectal cancer when I was diagnosed. I happen to feel very lucky because my issues were cut out, radiated and chemo-ed to destruction. Leaving me with a colostomy - but an incredibly blissful, wonderful life.

In comparison my many friends I know with Crohn’s who can have a rotten time. And yes, at times end up in life threatening situations.

My cancer was fixed. Crohn’s has no cure.

It’s definitely better than stage 4 cancer. We are beyond relieved and grateful for that.

But we have fear of what the future might bring. Our hope is that with some lifestyle changes he can keep it at bay.

But we just don’t know. Time will tell and that’s very stressful.

The stress of this - very familiar feeling cancer scare - has left a devastating mark on all of us.

The thought of Sam possibly going through his second cancer diagnosis in his 26 years on the planet has wreaked havoc on my family.

It all felt way too reminiscent of my journey through cancer, and his previous diagnosis.

It has been torture, nothing short of torture.

It’s such a shock because we don’t have any family members with any form of IBD (inflammatory bowel disease), a few with IBS (irritable bowel syndrome) but that’s about it.

So this is all a bit new to us.

Luckily in my position, writing my blog, I have met many incredible people in the IBD community, who give me some hope.

I also know some incredible people that may help keep Sam well.

I have insisted he book an appointment with Sophie Medlin (sophiedietitian on Instagram), she’s an expert in the field of IBD and I trust her implicitly).

Time will tell, it’s wait and see on the physical health part.

The effects of the emotional trauma? Well, that can be harder to fix.

Again, time will tell. Onwards and upwards. One minute at a time, one hour at a time. One day at a time.

But it definitely will take time to recover from this trauma.

*I feel really sorry for Olya, she came to live with us just a couple of weeks before the shit hit the fan. So pretty much all of her stay with us has been whilst we were living in fear. I can’t imagine it’s been much fun for her.

*Sam wanted me to say from him, please please please don’t ignore any unusual symptoms. He had so much regret for not acting on it sooner. It really added to his stress.
********************************

Having had the results Wednesday night, although upset for Sam, that the future is yet again a bit of an overwhelming unknown situation for him, I was free to go and attend a medical meeting/conference that I had been invited to

What was I doing being invited to a medical conference?

Your guess is as good as mine. I literally have no idea how it happened.

I was sent a message via Twitter by someone asking if I’d like to be a patient representative/advocate panel member, for a parastomal hernia conference.

At the time I didn’t give it too much thought and said “yes please, love to!”

I didn’t know the person who was asking.

But as I am involved with the PPI (patient and public involvement) group for Bowel Research UK, I thought it might be interesting to branch out and use my lived experience elsewhere too.

We had an initial meeting online;

This is the moment I had a huge panic attack.

I was sitting waiting to introduce myself.

When it became abundantly clear, very quickly that something was a bit odd.

Everyone introducing themselves were eminent medical professionals.

Top surgeons, top stoma nurses, PHDs and statisticians, the screen was filling fast with these borderline geniuses.

…and then there’s me!

I was nigh on hyperventilating. I was texting Chris in panic that I had clearly been invited by mistake and that mistake was just about to expose itself as I got closer and closer to having to introduce myself.

*There is a doctor in Canada with the same name as me, so I started panicking in case they thought I was her.

Thankfully this meeting was via Zoom so they couldn’t see the beads of sweat dripping from my brow and my rapid heartbeat, which I could hear very clearly, it’s all I could hear actually.

Anyway, it got to my turn and I just had to go for it. I shakily introduced myself;

Hello, I’m Suzanne and I’m professional housewife from Essex, England. With lived experience of colorectal cancer, treated with chemo, radiotherapy an AP Resection and oophorectomy”…

And to my surprise and delight they welcomed me with open arms. The relief I felt was palpable.

Research these days is more patient centric. Which means patient perspective input is incredibly important.

So thank **** for that! Because the thought of accidentally attending a meeting, with the assumption I was someone else, would have been mortifying.

The meeting back in February was really interesting. The subject matter was incredibly poignant to me.

You know I love my stoma life right?

You know I live it well, with great sense of peace and pride.

But I also live with quite a lot of discomfort at times due to hernias.

Now this meeting I was involved in was about the prophylactic use of mesh during AP resection surgery, in order to prevent hernias forming in the short term.

Apparently long term they are quite likely to occur, but this proposal is to stave off hernia risk for as long as possible.

The findings won’t help me. This is common with these sorts of panels. It’s not about helping yourself, it’s about making life easier for people in a similar situation that I previously found myself in.

I found this subject fascinating. It probably would have helped me at the beginning of my journey.

I am the proud and lucky owner of two hernias. ;)

One is incisional, where I had a very large diameter drain site. This one happened 7 weeks post surgery after I lifted a basket of wet washing

And more recently I have developed a very purtruding bulge around my stoma.

Anyway, at the end of the meeting it was mentioned that there was going to be an in person meeting - Excellent! I love those even more than Zoom ones.

This meeting however was going to take place in Athens.

…so I assumed this was not something I’d be invited to be involved in.

Suzanne, the housewife from Essex and the rockstars of the European colorectal surgery world seemed a very unlikely combo.

Think again my friends…

Kaliméra Athens!

Getting to Athens was a bit of a chore. First off, Chris couldn’t make it as he had no holiday left, so Ben suggested he’d come as he had plenty spare, which was really lovely of him.

I had been told that Ben and I would be very welcome to stay, at no cost to us, at the hotel for the panel members, but I felt that was a bit of a piss take, so Chris booked us into a lovely hotel nearby.

Gatwick was in a state of chaos. Loads of flights were being delayed and cancelled, it was all very confusing.

It started off smoothly enough. It only took 8 minutes from being dropped off outside the airport to arriving at the airport lounge Chris had booked for Ben and I.

We diligently kept checking the board. It was only when it got to about 30 minutes before our flight time that we realised the board in the lounge was broken.

The man at the reception desk was so swamped, with passengers demanding to be allowed in, but was still full with people from all the delayed flights.

When I asked him if he could check on his computer for flight details he said can you come round and check it yourself. So I did. :)

Our flight went from delayed to 5.30pm, to now going at 3.10pm, to final call, to gate closed in the space of about 30 seconds.

We ran, as did everyone else. Including a little old lady who was trying to run, she shouted to us to tell them to wait for her. Never have I had a more stressful experience at an airport. And I say this as someone that was taken off to a side room and ogled by an overly enthusiastic security staff member, who wanted a squiz at my stoma bag.

It was chaos, and we didn’t leave till about 4.30 after all that hoohaa.

Of the 17 flights I have done by this point, this year alone, it was the worst airport experience.

We landed in Athens at night. The acropolis was flood lit, and it looked magical, it was heaven. The temperature was perfect. The roof bar was really good. And the toasted cheese sandwiches we had were possibly the best of our lives - 5 star, would recommend! :)

When we woke up in the morning to the sight of Athens was incredible. The hotel Chris had booked for us was amazing.

Breakfast is served on the top floor overlooking the temple of Zeus. Honestly, it’s such a beautiful city, you have to come.

Ben and I hadn’t thought to Google anything to do on our sightseeing day. So we came out of the hotel, saw a couple that looked like fellow tourist, and followed them.

Luckily they obviously had googled places to visit, because we ended up at the old Olympic stadium. A must see. It’s stunning.

We then wandered around this beautiful city for the rest of the day. Then headed to the hotel pool to relax before my big night out, to meet the rest of the panel members outside their hotel at 8.30pm.

I was absolutely ******** myself. I’m not particularly confident in new and unfamiliar territory. And especially not when meeting new people.

You know that thing - imposter syndrome? Well I have that but it’s for genuine reasons. Who am I to be at this meeting, representing the colostomy community as a whole? Who on earth do I think I am? Why was I invited? Who invited me?

All fabulous questions. And to be honest I don’t have any answers to them.

Like me, and many other people were probably thinking the same thing too.

I needn’t have worried though. The whole group were wonderful. Absolutely wonderful. So warm and welcoming.

From many and various corners of Europe.

I count myself very lucky that most people in the world speak English. I, the Luddite that I am, cannot speak any other language. It is something I feel great shame for. We are a nation of people that expect others to speak with us in our tongue. Languages are not taught well in schools.

Very fortunately for me, everyone at this meeting spoke exceptional English.

We had the ice breaker introduction dinner at a fantastic restaurant in Athens, with views of the Acropolis and Parthenon.

The food was sensational.

I look forward to going back to Athens to show Chris the sights one day.

Then Saturday, was the big meeting day of - European Hernia Society.

An international society with a focus on abdominal wall surgery.

The morning was spent in awe trying to keep up with, and process the meeting going on around me. Most of it way above my pay grade (which isn’t particularly difficult as I don’t have a pay to grade).

;)

Then we had a break for an activity and lunch. All of us, including Ben, who met up with us at the hotel the meeting was being held at (he was very kindly invited by the meeting leader), to have a guided tour of the Acropolis.

What an incredible experience. It was absolutely amazing.

(It’s always slightly awkward to be a Brit most anywhere you go in the world, as historically we were no more than glorified thieves, taking the spoils back to England to put on show in our museums).

I always feel like I should be apologising, even though the treasures were taken hundreds of years before I was born.

I would definitely recommend going to the Parthenon and Acropolis, and if you get a guided tour it really brings it to life.

Not sure I’d recommend a city break in 35 degrees though, it’s pretty fair to say I melted up there on that hill. I’m not sure I’ve ever sweated that much in my life before.

Then we all headed to another fantastic restaurant for lunch.

I kept having to pinch myself that this was all happening. It seems pretty surreal. But I savoured every minute, I mean, come on, when is this sort of thing ever likely to happen again?

What I noticed most about this trip was that I was treated with kindness and respect by people who are way above and beyond my intellect, it’s not something that’s a given in this world.

After a delicious lunch it was back to the meeting. Where myself and the other patient representative were asked for our input.

(Sam, the other patient rep wasn’t able to make it to Athens, and instead joined by zoom).

I gave my thoughts on the proposed matter. I gave myself a headache in the process too because a lot of it was verrrrrry thinky.

But for me my decision came down to one particular graph that swayed my opinion. It all fell into place after that.

The findings will be finalised and published at a later date.

It was incredible to be involved in the process.

Then it was back to the hotel to relax for a bit before the final evening meal of the trip.

They couldn’t have chosen a better spot for it too.

We dined at the rooftop restaurant of the Acropolis museum. It’s an incredible looking building. But the night time view is such a treat.

This whole trip was like a delicious, delirious dream. I can’t thank whoever it was that chose me to come enough. I am, and forever will be so grateful for the opportunity.

I didn’t fancy the after dinner drink, so I headed back to my hotel.

I wandered around Athens by myself both evenings. Walking back to my hotel after midnight both nights.

I don’t even do that in my own home town, and quite honestly I wouldn’t suggest you do it here either.

But in Athens, absolutely. I felt incredibly safe, and incredibly confident to do so.

The whole experience in Athens was one I’ll never forget. I am so grateful to all the panel members for their generosity and kindness, welcoming a stranger into their midst. I loved every minute of it.

Sunday Ben and I went to visit the Acropolis museum.

It’s a spectacular building. It’s really well set out too, and absolutely fascinating - and air conditioned which is an added bonus. :)

Then it was time for a bit of lunch (the food is very good in Athens, which isn’t always the case on some city breaks) and then back to the airport for our flight home.

What an incredible adventure, one I shall certainly never forget.