There are few things in this life better than surviving something that has tried to kill you. Actually there is nothing better than that.
But once the cancer treating part is over, you can feel a little lost.
And certainly once you’ve survived beyond the regular check ups you can feel completely abandoned and all at sea.
I live in gratitude and sheer amazement that I survived cancer.
I’ll explain why. Usually the younger you are diagnosed with cancer the more aggressive it tends to be.
But I got unbelievably lucky (yes, I count myself as lucky) because I got an older person cancer in a younger lady’s body.
At 36 the diagnosis can often be mortally wounding. I will be forever grateful that I got lucky with old lady cancer. So although it had been allowed to progress and spread to local lymph nodes, it hadn’t penetrated out from the bowel area.
I got lucky that I survived. It’s pretty much all down to luck really.
I was very fortunate seeing as I had lived with misdiagnosed cancer for at least 7-10 years before it was found. I am a rare creature. Rare and incredibly lucky.
Surviving is the only focus, the only goal and the only outcome anyone diagnosed wants.
Surviving cancer is incredible, joyful and miraculous.
It will come with hurdles, changes and challenges though. They are often small ones, for example, I feel my colostomy is a small change but totally worth it.
But the longer you survive the more little hiccups will develop along the way, mostly caused by the treatment itself.
I have been getting UTIs regularly recently. It was getting ridiculous. Often needing antibiotics or cystitis treatments.
It was dragging me down. I didn’t want to keep ending up like it. So out of sheer frustration I booked a private doctor’s appointment. I had tried through my normal GP but was getting nowhere fast.
I spoke at length with the doctor, something that our NHS service can’t provide - time and really listening to the patient.
I’m lucky enough to be able to have the luxury of booking a private GP appointment. I am very grateful for this.
She felt that the problem might be being caused by the fact my hormone levels are off. I lost my ovaries and womb to the radiotherapy, they were irreparably damaged during radiotherapy.
The plan had been to remove both in the bowel cancer surgery. Unfortunately it didn’t go to plan, they managed to remove my ovaries, but my womb was left in place due to the fact that I haemorrhaged during the surgery and lost 9 pints of blood.
Getting the bleeding to stop and getting me sewn back up was the obvious and only priority.
But this does leave me in somewhat of a predicament.
The doctor explained that she very rarely, if ever sees a patient like me.
Often people will have their womb removed but the ovaries left inside. This is perfectly normal. Often they will have both removed. But to have no ovaries and a womb, well, we’re rare creatures. :)
So after an examination, the physical kind rather than a written test, it was decided by us that I will start a different HRT regime. I now have patches and tablets.
Not sure how long until I feel any better. So far I feel like the same washed out dish cloth I’ve felt for the last 11 years, but I am ever hopeful. :)
This particular style of HRT lowers the risk of blood clots so that’s a win right there, even if nothing else improves.
While I was getting all this sorted out my son was dealing with his own collateral damage. He is also a very lucky cancer survivor.
We’re a very lucky family.
His cancer was stage 3, nasopharyngeal carcinoma. An incredibly rare cancer in the western world for adults, and ludicrously rare for children. He was 13 years old when he was diagnosed. He was the only child in active treatment for it at the time.
He’s been getting terrible nose bleeds for years. But it’s now off the chart and happening daily.
It’s due to the damage done by radiotherapy to the blood vessels up his nose.
He’s been to see two Ear, Nose & Throat specialists to see about getting it fixed. Both had said “no problem at all!” Until they looked up there and backed out of helping, noting it was too problematic to fix. Which isn’t helpful as it’s also too problematic to leave.
He has nose bleeds every day. The shortest lasting 18 minutes, the longest lasting 1 hour and 10. Sometimes it drips, sometimes it floods out and sometimes it looks like someone has thrown a bucket of blood over him.
You might think well it’s only a nose bleed, that’s no biggie.
It really is!
Last week he ended up in hospital - on a drip because his blood pressure is now so low and his body temperature was that of someone with hypothermia.
Cancer survival isn’t the end of the story. It’s the beginning of a new one.
I have often heard survivors say that people assume everything is all back to normal after they are signed off, and they find this upsetting and frustrating.
I don’t mind this assumption, but I am tickled by it. The thought that anyone can undergo treatment for such an aggressive disease and just slip back into how they were before is both laughable and naive.
Luckily I’m not minded to worry what other people think, I am aware that it’s incredibly unlikely that a cancer survivor will walk away scot free. There is always collateral damage.
Sam’s feeling a bit fed up, feels awful, and is a bit pissed off about the amount of clothes he’s ruining.
The hospital were great getting his blood pressure back up. but couldn’t do anything more for him, but to refer him to yet another ENT and gave him a peg for his nose…I kid you not! The highest tech available for massive nose bleeds is a padded peg.
Which didn’t work by the way, it just sent the blood back down the back of his throat and nearly choked him.
We have managed to track down his old oncologist, who as it turns out, retired last week. He has now recommended for him to try a different ENT, but one he feels confident will be able to solve Sam’s problems.
Cancer survival is amazing, obviously it is. You’ll get no complaints from most about it. But I do just wish it came with a specialist team to put you back together every time a new thing breaks, or even some advice from a central source that just knows all about the damage that each treatment can set off. A centralised place for survivors to be fixed of all their treatment caused ills. Wouldn’t that be a wonderful dream.
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Other than UTIs and colossal nose bleeds, life is extraordinarily good.
The Euros (soccer) are on which makes going out for intimate dinners for two is heaven. Chris isn’t a football watcher. Clearly nor am I.
He got home from work and said “do you fancy going to 47 for dinner?”
The weirdest thing is, unbeknown to him I’d booked lunch there for the following day. So when he asked me I was a bit taken aback as we hadn’t been there for ages. So from nothing to twice in two days! I’m not complaining. The food at 47 in Rayne is amazing!
I wasn’t really restaurant ready. But a bag change, some dry shampoo and a ton of make up works wonders!
And there was no way I was going to miss out just because my hair was a bit straggly.
Dress from Tesco, Bag from Jimmy Choo and Shoes from Chloe.
We had such a lovely evening, and best part, we had the restaurant to ourselves for most of the evening.
I missed good food out through the lockdowns, not so much the interaction with other humans. ;)
The food is amazing! Such a little gem of a place.
I then went back the next day for lunch.
Jeans!! To eat in!?! Yep, and white jeans at that. It’s a risk. It’s a very big risk, but what is life for if not to live dangerously hahahahaha.
I always wear a longish top with trousers or jeans. I feel more comfortable with my belly covered anyway. But also if I am eating I will undo the trousers.
It can be a bit of a fight to do them back up after I’ve eaten. But embarrassing myself struggling with my buttons is a far more palatable option than leaking.
I very much enjoyed lunch at 47 too. I always do.
I had a fantastic catch up with a friend. Life seems to be moving at a pace again and it’s hard to see everyone you want to.
It was nice to take some time to enjoy good food and even better company.
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I read an article about exercising helping to minimise the damage of insomnia (another little gift cancer left me).
Well, I’m all in for finding ways of counteracting insomnia. And most definitely the damage it does to a person.
So the article said that two hours brisk walking a week can help restore some of the negative effects of insomnia.
Off I went for an hour’s walk, in the rain. It’s summer in England, of course it’s raining.
The facial redness? No, that’s not the healthy glow of exercise, that’s Rosacea, yet another little tiny gift from cancer treatment.
None of the little gifts bother me. I’m just glad to be here.
I just don’t take part in all that make up free selfie malarkey. Hahahahaha. Make up is a wonderful thing. :)
Did I sleep any better? Nope. But just knowing I’d got off my arse and done something felt good.
Have I kept it up? No, not as such. I will do. I’m determined to be the best version of me possible.
So with the week over it was time to enjoy the weekend. I’m so happy to be back out in the world again. It feels amazing. Gone are the days upon days stuck at home, albeit it safe and sound.
We’re jabbed and back out to play! And long may it last!
We booked to go to Sketch in London. It’s a very very cool, very Instagrammable restaurant. BUT it’s also amazing food too.
Now the dress code for Sketch is slightly up itself, which is surprising really as the restaurant isn’t.
The dress code is “art smart”. It’s really not a thing. So as long as you ignore that. Wear what you wanted anyway before you read the dress code and it scared the living daylights out of you, you’ll be fine.
Dress from Burberry, Shoes from Jimmy Choo. Bag from Burberry.
Trying my best not to look like a short, frumpy, fat, troll next to my glorious daughter in law.
She was in a very headlocky mood. Hahahahaha
The toilets are spectacular. They are very cool. But I’m very glad I no longer drink as I have trouble getting in and out of the pods without falling over as it is. ;)
More headlocks.
A quick trip across the road to Carnaby Street after the restaurant.
The food is always very good.
I made a terrible error of judgment though. I got caught up in the exuberance of the evening and I tried frogs legs!!
I very, Very nearly threw up at the table. I had to spit it back out into my napkin.
Terrible experience, traumatic almost.
I only tried it because Ben did, he has very narrow palate. He loved it, so I thought why not! But as soon as I bit into it my brain said abort abort there’s a frog in your mouth. And the entire contents of my stomach nearly followed the spat out frog.
Ben! my Ben ate it and enjoyed it!!
Which is very funny bearing in mind we had some sparkling grape juice, Chris, Ben and I don’t drink alcohol.
I really liked the delicious sparkling grape juice and said it tasted just like grapes.
Ben said “I wouldn’t know”
He’s never eaten grapes in living memory. In fact he’s only eaten apples in living memory!! So the boy who only eats apples for his fruit quota, and they’re few and far between I imagine, actually liked the frogs legs!!
Lesson learned for me. Never ever try and be fancy ever again. It’s not worth it. I’m just not fancy.
Ok so the night was slightly marred for me with the frog. But the food I actually chose to eat was absolutely delicious.
We’re very well looked after at Sketch because we know the restaurant Director there. He’s so good to us.
Very good actually, I explained that I had tried to get a booking for next week for just Chris and I and hadn’t been able to, he booked us in there and then. Which is very handy.
He then reserved us a table in The Glade for after we had finished our meal in the Gallery.
The gallery is exactly that, you dine surrounded by art.
The Glade is an ethereal, enchanted forest vibe.
There are other dining rooms there but we haven’t tried them as yet. We will. We will.
Like I said, we’re so happy to be back out in the world. :)
We got up late on Sunday, well, late for us. Chris said he’d like to go to Costco. I said “yeah, great, while we’re down there we’ll pop to get you some more work clothes”
He’s going back to the office after 16 months working from home. He’ll need a new pencil case and everything hahahaha.
Anyway, Chris then says, “well in that case we’ll go to Bicester if you want?”
Errrrr, when don’t I want a trip to Bicester, designer outlet village please and thank you!?!
So we did that!
Work shirts and trousers for him. New shoes and dresses for me. I can’t think of a better way to spend a day.
More good food. Lots of walking - from shop to shop - I wonder if that counts towards my brisk anti insomnia walking?
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I had a Zoom meeting with the charity I volunteer for. I’d been up and dressed in the morning but had got caught in a rain storm and changed into my Pjs when I got home.
That really is the one thing about lockdowns that I will miss. Pyjamas as day clothes, well that and the fact that I haven’t had a single bug or sniffle in 18 months! :)
Anyway. I forgot how cosy jamas are. Chris arrived home to find me cooking in them.
He mentioned that it was a bit early for bed clothes?! Early?!? I’d been to an afternoon meeting in them! Hahahahaha
Maybe we should just keep some of the lessons from a corona world?
Xx
