Thought I’d do a brief synopsis of me for those new to reading my ramblings.
Hi I’m Suzanne, I’m now 49, 50 in May, which is very exciting.
In October 2009 our, at the time, 13 year old son, Sam, was diagnosed with stage 3 Nasopharyngeal carcinoma.
It’s an incredibly rare cancer in the cavity behind your nose and throat.
The shock of his diagnosis was indescribable. The fear, the agony of what the future held was incredibly traumatic.
He was mostly an in-patient at UCLH in London for a few months. He was undergoing chemotherapy, followed by radiotherapy. He was managing a few days at home when the side effects of the treatment would allow.
So my husband, Chris, and I took turns in staying with him in the hospital.
It was during those days and nights on the ward that the bowel issues I’d suffered from since I was 18 really made themselves felt.
Up until the hospital stays with Sam I was able to manage my symptoms. I had made serious adjustments to my life, never venturing too far from a toilet, and only going to places I felt comfortable to use the toilet.
Without really consciously knowing or feeling it my world had become very small.
The changes I made were gradual events. I wasn’t aware that I had reduced down my interactions with the world until I was faced with needing to poo multiple times a day, in public loos on a hospital ward.
I had been terribly symptomatic of bowel problems since I was a teenager. I’d been diagnosed with IBS and piles back then, so without thinking to question it, that’s what I thought I had.
The stays in UCLH with Sam became really hard. Mainly because our darling son was so dreadfully ill. But also because I felt incredibly embarrassed needing the loo so much. I was in an awful lot of pain too, but that was normal to me.
(Hospital toilets give me the ick, there’s always a gap by the door frame and the locks aren’t terribly strong. I found it very distressing).
I thought my symptoms had gotten worse due to all the stress.
When Sam finished his in-patient stays at the hospital, and his treatment of immuno therapy was able to be administered at home, I decided to go and get my piles looked at and treated for the first time ever, by someone other than my regular GP.
I again visited my doctor, but this time I insisted I get seen by a specialist (if only I had thought to beforehand. “If only”…a fantastically useless saying).
With Sam’s treatment more home based I had time, and more importantly headspace to think about getting checked and the piles treated.
I had private health insurance, so I got my GP to refer me to a specialist.
The appointment happened to fall on the day after we’d had some great scan results for Sam.
He was on track and responding well.
So on a high we headed off to the hospital for the appointment with the bowel doctor. Both of our boys with us, as we were heading out to dinner after.
After all I was just getting some advice on some pesky piles.
It was at that appointment, that February evening 13 years ago, that the surgeon decided to be thorough (at last someone was) and did a sigmoidoscopy.
I remember all too well feeling like the oxygen had been suddenly sucked from the room, his demeanour completely changed, as he said;
“Mrs. Doré, I’m so sorry, you have a tumour and it is my belief it is cancer”
The nurse went out to the waiting room to get Chris.
We sat there in shock, in utter disbelief that the nightmare of cancer could be hitting us again.
I know I didn’t take the news well. I had been symptomatic of what I now knew was cancer since I was 18, I was at this time 36. Which meant the cancer had been there a significant amount of time.
Which to me only spelt death.
How had it got to this point before being picked up? I was going to my GP for years about it, at least 2 or 3 times a year in fact.
They always said IBS and piles. They didn’t check any further. I took them at their word.
I was absolutely devastated that I was doing this to my family, after everything we had gone through in the last 4 months.
I was scared, I felt guilt.
It was incredibly difficult to go back into the waiting room to tell my boys.
Sam was 13, Ben, our youngest was 11.
What a horrendous experience for them at such a young age, on top of such a horrendous experience we were already having.
Anyway, within a week to 10 days we got the full diagnosis and treatment plan.
And I got incredibly lucky.
Because the type of cancer I had was unusual in a young body.
It was a slower growing, older person cancer. It was stage 3 by that time, but fortunately for me, had only spread to local lymph nodes.
Which meant that rather than the death sentence I had feared, it was hopefully going to be treatable.
I had chemotherapy, Radiotherapy, an AP resection (permanent colostomy - removal of some bowel, anus and rectum) and an oophorectomy.
I was so scared and traumatised about having to have a stoma, I was horrified. I had convinced myself and Chris that I would never leave the house again.
I went into the operation with tears streaming down my face believing that life as I knew it was over…And in a way it was, but I didn’t know it back then, at that point.
I was quite poorly in the op (but luckily I was asleep for all the drama. I do feel sorry for the team working on me. I am so grateful to them).
I came round from the surgery. I looked down at the newly formed stoma (they put a clear bag on to start with) and I felt a rush of emotion.
I felt safe, I felt confident, and I just knew everything was going to be okay.
…I looked at the blob of bowel stitched to my abdomen and said “oh, is that it?”
…and I never looked back.
I love my stoma life. It is bold, it is bright. It is sooooo much better than it was during the long, painful, embarrassing misdiagnosed years.
I have been everywhere in the world I have ever wanted to go…and some that I didn’t, but went anyway.
*I wanted to go to India - loved it! Would go there tomorrow if I could. It’s heaven. It’s magical.
I wasn’t sure about booking to go to Las Vegas prior to going - and my fears were confirmed - in my experience and opinion, it’s the worst place I’ve ever been in my life. I’m glad I’ve seen it, it has to be seen to be believed. But I will never return*
I love to travel, I’ve lost count of where I’ve been. Post op I ran back out into the world. My stoma bag set me free.
Post pandemic, since October 2021, I have flown 26 times. I live life to the full.
I never say no to new adventures!
Sign me up! I want in!
I love my stoma. It may sound weird, it may sound unrealistic, and even a complete lie to some, and I understand why, it’s not what anyone expects to have to have done, but it’s given me my life back as well as saving my life.
I would like to add that my wounds have healed and my scars have faded, but the damage cancer left on my family is harder to heal.
My youngest Ben, was 11 during his brother’s and my diagnosis.
He quite rightly felt that he was left behind in all of the pandemonium of the cancer diagnoses. It must have been awful to feel unseen by those around him in all the mayhem.
It has left a lasting legacy of anxiety and depression.
It is my greatest regret and sadness that I couldn’t save him from it.
Sam was heroic throughout his treatment, and continues to be through his life dealing with collateral damage from cancer treatment.
Ben was left fighting a different battle but with equal heroism.
I am in awe of both my sons. They are both incredible people.
I am indebted to them and my husband for their love, support and dedication.
So that’s me to date. Sam diagnosed in 2009, me diagnosed 6 months later in Feb 2010, both alive and well and loving life.
Fast forward to now, literally living the dream.
Have bag will travel!
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Skip forward to the here and now;
On Sunday Chris and I headed to London to celebrate our upcoming 27th wedding anniversary.
We were married on Valentine’s Day 1996.
Prior to getting married on that day of love and lovers I had been dumped by two different boyfriends.
So when we went to choose a date at the registry office we were offered a few suggestions by the registrar.
The first was 29th February, which I thought would be fun. Until it was pointed out that we’d only get to celebrate it every 4 years officially!
**** that!!
The other date was Valentine’s Day. I said “absolutely not!! I hate that day. I was dumped twice!! Two years in a row by two different people”
And then Chris turned to me and said “Well this is the perfect moment to rewrite your story. We can make it a day to remember and love it forever after, our happily ever after”.
And so we did…
And he wasn’t wrong.
Sunday we booked a table at Chutney Mary, if I can’t get to India then Chutney Mary is the next best thing.
(Coincidentally my friend in Mumbai text me as we were in there having lunch. She sent me a video walk through of her sensational new apartment. So we watched it, with her view over the Mumbai skyline as we ate. Heaven).
Lunch was wonderful as ever. Chris mentioned it was our wedding anniversary celebration, so they put us in a very cute private dining room.
It was so lovely of them. The meal was amazing. And the company was as always the best! :)
Best decision ever!!
Dress (below) from Nobody’s Child (£18 in the sale), Boots from Hobbs, Bag from Chanel.
Still my best decision ever!
We ate a lot, I probably should say too much, but that isn’t really our shtick. :)
We ordered Gulab Jamun for dessert (if you’ve never tried it you really should give it a go if you ever see it on a menu.
It’s very odd that in this country in Indian restaurants the desserts are mostly bought in from tacky frozen dessert companies.
When in actual fact some Indian desserts are the best desserts in the world. My second favourite is Gulab Jamun - little syrupy dumpling balls.
My absolute, all time bestest, favourite is kheer - Indian rice pudding flavoured with cardamom. It’s divine. If I ever see it on a menu I get a take away portion for the next day).
We were absolutely stuffed. We then had our usual after meal walk round London. If this meal had been eaten in a country side venue we would have run to the car and headed straight home. But London is different. It’s the only place we feel free to roam).
It was a lovely way to commemorate 27 years of marriage. The handy thing is we both still really like each other, so that’s nice. :)
Then Tuesday it was Valentine’s Day, the big day. A day for love and romance, so I went out for lunch with my best friend…Michelle, not Chris this time. ;)
We had a lovely Galentine’s meal at a garden centre, because I’ve got to the age where a mooch round a garden centre is very appealing, yes, I’m that years old! ;)
I got home from there to find Chris had actually ordered me some flowers. Again, we don’t usually partake in the whole Valentine’s extravaganza, as everything is so overpriced.
They are beautiful. I was more than happy. But he blew me away because he also bought me an amazing present too, something I have wanted since I was about 12 or 13. I couldn’t actually believe he’d bought it for me. He still has the power to surprise me - 30 years into this relationship.
Like I said, I really like him. :)
Then in the evening Chris and I decided to avoid the Valentine’s trap of overpriced, set menus and forced, contrived romance.
We also avoided cooking for ourselves. Where’s the romance in one of us having to do that?
So we headed to Nando’s In Braintree. We are so classy.
And we were joined by our beautiful boys!
Sam had come up from Hampshire, where he lives. He works in the office on Wednesdays, but we didn’t think he’d be up until about 10.30pm, as normal, but he arrived in time for dinner.
And Ben met us near Nando’s to look at bikes.
So our Valentine’s - Anniversary was spent bike shopping with the kids. With Ben riding round the store shouting “Mum! Mum, video me riding my bike!”
He’s nearly 25!! And six foot two, but it was like being transported back in time twenty years! hahaha
It was probably the best wedding anniversary since spending it in India 4 years ago, and that one was the best ever up until yesterday.
I feel incredibly lucky that I get to live a really very nice life.
I’m only still here because I have a colostomy bag attached to my abdomen. So to my mind, it can only be a very positive, wonderful thing.
The boy did good. The flowers were a delight. :)
Jumper from Benetton, Jeans from Tesco, Boots from Christian Dior.
A wonderful night had by all. Xx
It’s interesting how many times people with stomas hear from other people (without stomas) how they wouldn’t and couldn’t cope with having to have a stoma.
How it’s a fate worse than death, the end of the line, and generally perceived dreadful way to live.
I hope more than anything me writing this blog changes that misconception.
Because my life is pretty darn amazing!
I absolutely love it!
Even though I had very little inclination to cook on Valentine’s night I did do a couple of gorgeous table scapes.
I like creating pretty things. I don’t enjoy creating meals - eating them - yes! Cooking them, not so much.
I created a slutty black and red theme in the shed.
And a pretty in pink one in the dining room…and then went out for dinner…
We used both set ups, they didn’t go to waste, we just didn’t dine at them on Valentine’s night.
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Just a quick update - and a huge thank you to everyone who sent me Dry Eye information and advice. Much appreciated. Xx
Who knew it was so popular?
Anyway, after some exhaustive research, some fantastic suggestions from fellow sufferers and many pounds spent on drops, I have come up with a pretty good solution.
My eyes are less dry now, and therefore less wet. Such a ridiculous name for the condition.
Should be called wet, leaky eye.
I’m now using the Hydrosan ointment for during the night, and Hydrosan Extra drops for during the day.
And so far so good. Eyes are moist and no longer dribbling all day long. Which is a blessed relief. :)
Keep well, much love x