It can often feel like cancer treatment takes a lot away from us, the survivors.
I can very much relate to this, but because I have lost so many people, from very young, young and older and old, I can’t and don’t dwell on what my body and mind went going through.
I feel incredibly blessed to still be here. Nothing else matters.
But there are things you have to learn to get through, or at best move around as well as you can.
Body changes are the most obvious outward scar of what you have been through.
Although cancer leaves it scars both physically and emotionally. I doubt there is a single survivor who hasn’t got some sort of long term damage from treatment.
It’s okay, even for grateful survivors, to be a bit miffed by those scars, even if we know we are the lucky ones.
The biggest scar cancer left on me isn’t my stoma, it isn’t the many physical issues, but for me, mine is the fear.
The fear it will come back for me and finish the job, the fear it will come back for those I love who also survived, the fear it could affect anyone that I know at any given moment. Yes, the fear is all consuming.
I’ve learned to live with it. And live a full life, in spite and despite it. I can’t control it, but I can live alongside it.
It’s the part I struggle with. It’s the daily worry I have. It’s the thing I miss most from before my son Sam’s diagnosis, followed six months later, by my own diagnosis ~
The blissful ignorance and sense of peace and calm in the world. I miss that a lot, and I didn’t even know I had it back then.
I look at photos from before all the diagnoses and I physically yearn to feel as safe as I did back then.
(Our son Sam was diagnosed with stage three Nasopharyngeal Cancer when he was 13 years old, in 2009. He had been a bit under the weather for a few months. I had taken him to the doctors a number of times. We were told it was many and various innocuous things, just his hormones changing, car sickness, a weakened blood vessel in his nose, ear infections. He showed no real sign of being as ill as it turned out he was.
A bit of vertigo and some nose bleeds, but nothing very awful, or so it seemed.
I felt something wasn’t quite right, although never in a million years did I think he would be suffering from the side effects of a tumour growing in the cavity behind his nose and throat. I just felt something was wrong.
He always takes the piss out of me and says I tried to cure his cancer with Calpol and Nurofen…to be clear, I didn’t, I just didn’t know what was actually wrong with him, and I felt a bit of Calpol might do the trick. It’s a mum thing. ;)
After months of going back and forth to the GP, I made an appointment for him again, only this time we went to see a locum GP, and I said I was fed up with keep coming to the doctors, and Sam himself was absolutely fed up with coming, and fed up feeling off.
The locum agreed and said it was time to start doing something different and possibly investigating, so on my insistence I suggested we start with grommets, because he’d had some when he was younger, and maybe that would help.
Anyway, that’s when the shit hit the fan.
Straight after he had the grommets put in his ears a massive swelling appeared on his neck.
The ENT consultant decided he would operate on Sam and take away whatever was causing the swelling.
(THIS IS NOT WHAT HE SHOULD HAVE DONE).
I later found out from the subsequent oncologist who treated Sam, that the ENT should not have touched Sam at all, and should have immediately known that the swelling would 99.99% likely to be cancer, and immediately referred him to a head and neck cancer specialist.
Sam is incredibly lucky that opening him up and removing the cancerous tissue didn’t cause him further damage and harm. Incredibly lucky, ridiculously lucky. (This was a secondary by the way. His primary was in the cavity behind his nose).
He was treated with chemotherapy, radiotherapy and immunotherapy. He had a year of gruelling treatment. NPC is inoperable. So chemo and radiation are the only treatments for it.
He also got very lucky with the location of his tumour (weird to say lucky and tumour in the same sentence, but he was very lucky). Usually, or very often, the tumour grows in a location that affects the eyes and knocks them out of place.
Sam has got a lot of collateral damage to deal with forever, but his eyes are in their original position.
He does have permanent hearing loss, thyroid problems, stunted height, dry mouth, teeth damage, and the list goes on).
Then, while he was still in treatment I was diagnosed with stage 3 bowel cancer, having been misdiagnosed for many many years.
Although surviving is the most important thing, it comes with its costs. Every survivor will have their own collateral damage. Every single one.
When people say to you “oh thank god all that’s over” they mean well, but they have very little understanding of the left over consequences of treatment.
It can be devastating and challenging. I’m lucky in so much as I am incredibly body confident, weirdly, more so now than any time ever before my diagnosis.
I think it’s one of the few benefits of having had cancer. I feel my outer shell isn’t the most important part of my existence on the plant.
That’s not everyone’s feeling or experience when faced with body modifications due to illness or injury, so I do feel incredibly grateful for how I feel about it. And I am very sympathetic to those that do struggle.
My one and only leftover from everything we went through is fear.
Which is why I like to live with every ounce of my being. I don’t take life too seriously. I get accused all the time of treating life like it’s a giant dolls house, and that I treat it like it’s all make believe…and I’ll let you into a little secret…it is!!!
We are tiny little specs of dust in the grand scheme of things. It’s best that while you are here you make the most of it. We get at best 100 trips around the sun, but mostly a lot less than that. So make every year count.
You’re here for a good time, not a long time. :)
I like to do volunteer work because it makes me feel good, I do it as much for me as I do for the people I’m helping. It feels nice to give back.
I’d definitely recommend taking part in some sort of volunteering, as it helps make you feel more productive and useful, giving a sense of purpose and perspective.
It doesn’t have to be for people as such, I used to volunteer for The Cinnamon Trust. A charity which helps give elderly and ill people the chance to keep their beloved pets with them for longer than they can properly care for them alone.
I used to walk dogs for two different people. One lady had Parkinson’s, and could no longer walk her dogs, but she still wanted her dogs with her for as long as possible, as they were so treasured and adored. And I walked another dog for an elderly couple, who couldn’t walk themselves, and therefore couldn’t walk their dog.
I did assume when I took the role on, the dogs would be tea cup Pomeranians or Yorkshire terriers or something. What I actually ended up with was a Rottweiler, a Rhodesian Ridgeback (both of whom I absolutely loved) and very unappealing Jack Russell/Staffordshire bull terrier cross, who had breathing issues, I wasn’t a big fan of this particular dog, but the couple were adorable.
I really enjoyed volunteering for the charity, I loved walking the rotty and rhody, they were absolute characters, soppy big lap dogs. I was devastated when they died. I wasn’t expecting the dogs to go first (unfortunately I found it too distressing to carry on after that, and I didn’t pursue any further clients).
But finding some form of charity volunteering that suits your interests is good for the soul.
It’s why I do it, because it feels nice to help others, and it’s obviously nice for the person you’ve helped, so they feel less alone on the planet.
There is no such thing as a selfless good deed, as Joey in Friends pointed out, but as long as you don’t do it to feel superior (what sort of maniac would?) then it’s a win win, everyone’s a winner.
I also enjoy things that make sense to me, that don’t necessarily make sense to anyone else. It doesn’t have to make sense to anyone else. We all get so consumed by this.
Take table scaping for example…why do I bother? Because I want to, because I enjoy it, because it looks nice. Does everyone think it’s beautiful and brilliant? Absolutely not. Does that matter? Also absolutely not. :)
I grab all and any opportunities that come my way. Like the first time I stepped on the flight to Athens for the first meeting I went to for EAES. Did I know what I was doing or what was expected of me? Nope, not a smidge. But did it stop me going and giving it my best effort? Nope, not a smidge! ;)
And travel too, we’re here for such a short time, and we’re really lucky if, one, we are able bodied enough to go do it, and two have the finances to start with.
I am always up for and open to the next adventure. Some run smoothly, like when I went to Spain by myself. Some don’t run as smoothly, like the drama of 20 hours of European train travel by myself, but all are different and worthwhile experiences.
I’m grateful for the opportunity to do them.
Things I’ve learned along the way; I never take health for granted, I always get health issues checked and checked again, trust your gut, I always do whatever pleases me, because I’m the only person I have to please.
Friday night I said to Chris that I felt weird, unsettled, antsy, agitated, I couldn’t pinpoint what was happening but just that it was.
He said “Well let’s go for chippy chips at Frinton tomorrow then”
And I thought that seemed as good a plan as any.
Anyway, fast forward to Saturday morning, I’m laying in bed, still feeling odd, when Chris said “right, that’s that sorted, pack a bag, we’re going to France”
“Errrr, sorry, what? It’s 9.20am! You mean now?!”
And he did indeed mean now. So I jumped in the shower, packed our bags, dried and dressed and we ran out the door. Cups of tea still on the side, some fruit cut up ready to eat for breakfast. If anyone had come round it would have appeared we’d been kidnapped.
We took the channel tunnel train…because although I have sworn off train travel IN Europe, I don’t mind actually using a train to get there.
It was the best fun! We had such a fabulous time. We love Le Touquet. It’s such a quaint place to visit.
We’ve only ever done it for day trips before.
We used to get a very early train in the morning and a late train back and have a spontaneous adventure.
This was the first time we ever stayed over night.
Chris booked it all, he said he’d sorted a place and that it was a 3 star hotel.
I grew up in a camping family, I didn’t stay in a hotel until I was 19, so I don’t mind a low star rated hotel as long as it’s clean.
But actually, although it was only a three star hotel it was the best room because of its view I’ve ever had! I have no idea what star ratings are based on, but the view from our balcony was 7 star worthy!
For years I have dreamt about a view like this one, we’ve stayed in some exceptional hotels all over the world. But this little Ibis in Le Touquet Paris Plage is the winner!
I am so looking forward to going back and staying for longer next time. It has a fabulous looking pool area and full spa too. So next time we’ll book in for that too.
Top from Ralph Lauren, Jeans from M&S, Shoes from Louis Vuitton, Bag from Goyard.
As we’d never travelled abroad in my car before we had to pick up a few things at the train terminal. Luckily they sell a fabulous selection box of euro travel bits.
This is the view from our balcony. This is the most beautiful view from a hotel I’ve ever had…excluding the Oberoi hotel in Agra, where we could see the Taj Mahal from the window.
He has the best ideas!! I’m going to keep him! 🥰
Raincoat from Moncler.
(Much needed as it turned out. They gave torrential rain at home too, so we were no worse off for going away for an adventure).
It was such a great trip. We walked into the town centre, which only took ten minutes or so.
We looked around, it’s a super cute place. The houses are so quaintly story book esque, it’s very pretty.
We had a look round the shops, finding a very niche canned fish shop. I mean, who doesn’t want a variety of canned fish?
Obviously I bought some, rude not to.
We found a nice little place for an early dinner. As we had missed breakfast and lunch by this point.
Chris suggested we get an Uber back to the hotel, but me in my infinite wisdom thought the walk would do us good…and it probably would have had it not been for a huge storm that swept in. Hahahahaha
Not my finest decision making…I mean, it’s definitely not the worst I’ve ever made, but not the best one either! Hahahah.
We were soaked through, past our undies and down to our skin in fact. So Chris changed into his track suit shorts and t shirt he brought to chill out in. And I had to change into a formal silk blouse and trouser combo I had packed because I didn’t know what the plans would turn into.
We must have looked an interesting pair, dressed for very different occasions, sitting in the hotel bar watching the storm, drinking 0.0 beers.
Then Sunday morning I planned to go to the covered market there, to be all French and fancy.
I planned to buy a wicker basket, and have veg and bread trailing over the edges. I had built up this romanticised image in my mind. I’d be floating around bonjouring to everyone I met (this is the living like it’s a dolls house thing I was telling you about).
Anyway, I got dressed for the occasion…
Blazer & T shirt from Ralph Lauren, Jeans from Michael Kors, Shoes from Chanel.
I channelled my inner Ralph.
And off we went to the market, we got in the Uber and told him where we wanted to go and he said he could take us…but the market isn’t on on Sundays. 😢
I was so disappointed. I don’t mean to sound ungrateful for a lovely weekend away, but I had this image in my head.
So I went with plan B, which was to find some really good croissants. The hotel only had those catering ones that they all seem to buy in frozen now and cook. They’re not great.
I wanted a proper good one.
So we walked into a restaurant, we hadn’t said a single word and the waiter/ manager man shouted “NO CROISSANTS!”
I mean, I hadn’t said a word. Do I give off a vibe of a woman desperate for flakey pastry treats!?
We found another restaurant. Who also had no croissants. What is going on?!? Chris couldn’t get a decent one last week in Cannes either.
So we settled for the bread and jam option. I’m not opposed to bread and jam, but it has to be the best of both, with salty butter goodness. And this place had none of the above.
They had dappy, Costco type dinner rolls, cheap jam and unsalted butter.
Once we ate what we could there we headed back out to look around. We found a patisserie with a very long queue, and decided to join it. We’re Brits! Queuing and drinking is the only culture we possess. Hahahah
Anyway, we got to the front of the queue and BINGO!!
They weren’t the best I’ve ever had, but they were better than the hotels ones, so that was at least something.
Never keep a woman from her croissant needs…
It was then a quick walk back to the hotel to head for the port (train station? Terminal?) whatever it’s called.
Because we had a late lunch in London to get to.
Just a heads up, the email for the booking is a bit confusing, so make sure you scroll through the whole thing, because they labelled it ‘return journey’ but gave out outbound info first. Which we misread, and managed to miss our crossing.
No harm done though. We asked Ben if he could move the booking he’d made for Father’s Day dining to a bit later and we got there as soon as we could.
Father’s Day ~ and friend of your father’s ~ day too.
It was a fun afternoon and a nice meal. Even though chicken wings are not my go to food. But then, it wasn’t a day for me. So I’ll go along with anything really.
The others loved Wingsman in Soho, if wings is your thing.
Can you do absolute spontaneity with a stoma? No, not really. There are needs that I have that differ to the bagless.
But can I do semi spontaneous fun?
Absolutely! Yes! It’s to be encouraged!
Give me a minute to pack a bag of stoma stuff, a toothbrush and a pair of knickers and I’m there!
I don’t let the fact that spontaneous events are slightly more complicated than others stop me from giving it a go.
Especially when you bear in mind on some planned trips I’ve forgotten important things. So there’s no point in missing out on fun just because it takes a bit of thought to achieve.