Where do I begin?
Well many years ago now I was taking my then 12 year old son back and forth to the doctors. He was having a lot of time off school with feeling heady and nauseous. Over and over again I was told he’s fine, it’s nothing. Then one day we went on a very short journey (our dear neighbour gave us tickets to Biggin Hill air show, it’s about an hour and a half drive away). On the drive there, suddenly and completely without warning Sam threw up. Now we’ve driven to many places, Scotland, France even Spain! And he had never been car sick before.
I took him back to the doctor, who promptly told me it was motion sickness.
No, that didn’t ring true to me either, a boy that had travelled many miles by planes, trains and automobiles would suddenly get car sick? Feeling unheard we went home yet again.
Then a few days later I found him curled into a ball on the floor, I asked him what he was doing. He said it was the only way to stop the room spinning.
I booked yet another GP appointment. This time we saw a locum, who agreed it all sounded rather odd. I insisted that he be seen by a specialist this time but I had no clue for what, so I suggested we start with getting some more grommets put in (he had them as a child) maybe it’s his ears playing up.
He was referred to a local hospital to have some grommets put in. After that procedure a massive lump appeared on his neck.
The ENT surgeon decided this lump needed looking into further, and sent him for a scan there and then.
My boys are smart cookies. During that appointment I asked the doctor if the lump could be something nasty nasty?
On the walk back to the car Sam asked me “when you asked if it could be something nasty nasty did you mean cancer?”
I told him the truth, yes, it’s a possibility but having been assured by the doctor that its unlikely and would be very rare.
He turned to Ben who was just 11 at the time “Ben you have to let me sit in the front seat, if I have cancer I get to have what ever I want” ;) hahahahaha, we’re very lucky that we have a very good sense of humour in our family. It’s certainly come in handy.
Anyway long story short. He was diagnosed with cancer just two weeks after his 13th birthday.
He was diagnosed with advanced stage cancer, an exceptionally rare cancer in the west, Nasopharyngeal Carcinoma. Rare and sadly inoperable, and very sadly for Sam diagnosing it had taken a long time, his primary was in the cavity behind his nose and throat. The lump on his neck that the ENT surgeon had removed was actually a secondary and should NEVER have been touched, it could have been catastrophic, it’s removal could have sent the cancer firing off everywhere.
The fact he had just turned 13 meant he could be treated in a Teenage Cancer Trust Ward in London’s UCL Hospital. He was under the most incredible oncologist, one of the best in the field of NPC.
You know the drill with this sort of diagnosis, he had chemotherapy, radiotherapy and immunotherapy, and we got incredibly lucky that those treatments worked.
Some 6 months to the day after Sam’s diagnosis and while he was still in treatment, I was diagnosed with advanced stage bowel cancer, after about 10 years of bowel problems. Again back and forth to the doctors, with masses of glaringly obviously bowel cancer symptoms that were ignored by my doctors, due to my age, I was always told it was IBS and piles.
All those years ago it would have just been ONE little tiny polyp causing me a bit of trouble (oh if only I’d have had a colonoscopy back then, the polyp would have been removed and I would be fit as a fiddle and complete) .
But no, that wasn’t to be my story. By the time I was diagnosed, the polyp had developed into a tumour and the tumour was big and in the wrong place to just have cut and shut surgery. The AP resection followed the chemotherapy and radiotherapy and hey presto here I am to tell the tale!! I am, we are as a family so very very lucky.
I am forever grateful for Sam’s and my survival. The only downside (if you can call it that) I can find of surviving is the constant living in fear of cancers nasty insidious return, I agree it’s a very small price to pay for still being here but it takes its toll on your mental health. I will admit that I have health anxiety. I’m not ashamed of it, I think it’s probably perfectly understandable but I am annoyed with myself for allowing it to have power over me at times.
I’ve not been feeling too chipper lately, I have horrific night sweats, even with being on HRT (my womb and ovaries were destroyed during treatment for the bowel cancer), I can barely stay awake after 9pm I’m so exhausted and I get a lot of tummy aches.
A few weeks ago I had some blood tests, one of which came back with a very high Amylase reading. The doctor said I’m sure it’s nothing but just to be on the safe side I’ll send you to a pancreas specialist.
“Errrrr, hold on!? My pancreas is having a problem??”
I had seen a pancreatic cancer awareness campaign some years ago and was fully aware that pancreatic cancer only has a 5% survival rate.
He was wonderful, kind and very reassuring, he said it would be very rare to have it, and there were plenty of other things on the list that it could be, including nothing at all.
Rare is like a trigger word for me, I’ve heard it too many times before.
So for the last 4 weeks I’ve lived in a state of terror, I’ve not slept, or wanted to eat much I have been in a state of shock and trauma.
I had a CT scan last week and I went back to the consultant yesterday for the results.
I’m fine. Your pancreas looks absolutely fine and in perfect working order he said...and then I cried and cried and cried.
I can’t put the relief into words. It’s knocked me a bit bandy actually, I think the adrenaline has left and I now feel like I’ve been hit by a bus.
I’ve not really begun to process what was said. My amylase is high, but it’s my normal by all accounts.
Information collated by statistics means that to get an average normal there will be people who fall outside of those ‘normal’ lines.
Or it’s possibly to do with some gall stones that my bowel cancer check up MRI scan picked up last year but my bowel surgeon said he’d leave them well alone till they caused me a problem.
But basically nothing to worry about.
But that’s the problem isn’t it, when you’ve had the rug ripped from underneath you, it’s very difficult to focus on the positive. My mind instantly runs over and over the worst case scenario. I can talk it down and calm myself and enjoy myself even, I’ve had plenty of good times over the last 4 weeks. But the dread and fear hits me like a wave. A massive wave.
It’s been pretty grim, I’ve done my best to counteract the fear. But we all have too much to lose and life is so very precious and precarious.
I can give advice on what to wear and how to dress the best you can, but when it comes to overcoming the fear, I’ve got nothing. All you can do is hope and find a distraction, something that takes your stress down a notch or two. I couldn’t relax enough to be in the right head space to go to yoga, and trying to meditate was a no no. But weirdly I did find being at the laundrette very restful (the pipes to my washing machine froze in the cold snap). Not sure what it was about the experience but I did feel calmer there.
I’ve tried not to worry my friends and family because I know it’s a horrible feeling to fret about someone, so only a handful of people were aware of what was going on until I knew all the facts.
My poor boys and Chris have really gone through hell too. They have been amazing. They are my world and the reason my fear was so great. They are my life and I feel terribly guilty for putting them through it.
I will go on. I have this same anxiety when I’m waiting for the results for my annual bowel cancer tests and when we wait for Sam’s test results, the dread is still very raw, even all these years later. I will take what comes my way, the same as I usually do with a smile on my face but possibly interspaced with tears of fear. But at the same time I try and turn it into a positive, the fear is a privilege only afforded to the lucky ones that get to survive. I try and find gratitude in that fact, it helps a bit.
Today I feel amazing. Today is precious as is every single other day.
I’m very lucky, for me there are no boring days, no low days, because every day I get to wake up in the morning is an amazing day. And for that I am very grateful.
Never once have I considered having a colostomy “the worst case scenario”. Because there’s only one thing that’s the worst case scenario and it’s the one thing I’m going to try and avoid for as long as I possibly can.
Keep well. Much love
Oh and the other advice I can suggest is...
Truly my mantra, every day. xx