Cancer is a Can’t

This morning I woke to the notification I have 500 followers.

A small number in the grand scheme of things.

I never began this page with the intention of growing a huge following, I still don’t.
It was simply an outlet, like an online book to share my life’s journey.

So many have said to me, “You really should write a book about your life. You’re so good with your words, you write beautifully. It would be a best seller. I’d certainly buy it.”

So I began this little blog, as the basis and timeline if I ever did take that leap. Only once I began documenting I realised so much has happened, it wouldn’t fit within the pages of just one book. I’d need to write several books and in truth I don’t know if life is granting me enough time.

I’m a complex character in many ways and the life traumas I’ve experienced have shaped me. This blog has been a journey of self discovery, it’s helped me to try and understand who I am. I mean I’m still here learning and working it out!

It’s been cathartic. I’ve been open and transparent and worn my heart on my sleeve. I’ve laid myself bare, open for judgement and criticism, I’ve documented the highs and lows and you’ve all been nothing but kind. ♥️

I’m not consistent on here, sometimes I’ll spam you all with several blogs all in one hit (particularly when I was taking high doses of the steroids and I’d become manic!)
Then I disappear for weeks and weeks and I know you’re waiting for a death announcement (warped sense of humour has never changed!)

What has touched me the most are those also on a cancer journey, who have reached out and I’ve been able to offer help and advice, I’ve been able to articulate how they’re feeling or they’ve simply said my blog has given them the strength and inspiration to keep fighting. 🥺

Thank you, to all 500 of you, who’ve allowed me this space to share this journey with you.

The good, the bad, the ugly and the downright hilarious. ♥️

Gail x

One phonecall. Just one phonecall can change everything.

Positive news can act like a crane, hook you up and hoist you higher than the clouds.

The reality is I’ve been struggling, because on this cancer journey I have lost myself. Lost who I am.

I can’t keep looking back at ‘the old me’ and mourning her and the life she had. Because she is no longer. That life no longer exists.

I have no sense of direction, no feeling of purpose. I’ve been in fight mode for so long, I’m stuck. Simply surviving, but at this moment in time, I’m not thriving.

I have the most wonderful goal of our first Grandchild to meet and marvel in their wonder, I’m so grateful that now it really looks like I will get to kiss their tiny head and tickle those tiny feet.

But I’m still lost. I’m battling fatigue and mental exhaustion. The travelling to London 1-2 weekly has taken its toll, but now at least we know those journeys have been worth every minute.

Those who know me from my professional capacity, will know I was top of my game. My passion, commitment and dedication to my career.
It gave me a sense of purpose. A feeling of success, achievement and I absolutely loved it.
But that came to a sudden, abrupt halt. I mean seriously, who would spend the last ‘6 months’ of their life working?
Well in truth I’d probably have become too ill and realistically that would be 3 months.

So I closed my business. I removed myself from Google maps, LinkedIn, deactivated my page, my website. All gone, overnight. My life’s work.

I know I never want to return behind the chair.

But teaching. I miss that. I have over 20 years of knowledge and experience locked away inside my brain. What a waste to take that with me and not share it if I’m able to.
Small, one to one classes. Just once or twice a month. Online theory, like never available before. Supporting the smaller brands who are building from the ground up. Not fully established, big corporations full of directors whose only concern are the profits. It’s not me. We are real people, with real life experiences. Different opinions and approaches. I don’t want to fit into a box. Clipped wings can’t fly.

I hate the way the industry has become. Every image is expected to resemble a TV commercial. AI and filtered. Posts talking to the industry, not the client, the person that really matters sat in the chair.
I want to go back to basics. Strip it all back. Everyone fighting to become ‘the next big thing’

It’s horrendous and the pressure placed on stylists to be ‘perfect’ is not right. Unrealistic.

I don’t want to be the next big thing. But I want to give people the skills and tools and really good, undiluted education.

My mind is racing.
I can feel a fire beginning to burn in my belly.

This morning I woke up with hope. A possible future.

Ironically my website renewal is due in a week. Do I renew in the hope I still have something to give?

For weeks I’ve struggled to get out of bed.

Just one phonecall is all it took.

I’ve just had the phonecall from The Royal Marsden with my CT scan results from yesterday.

I’ve developed the same annoying cough I had when I was first diagnosed, so Alan and I had prepared ourselves for bad news.

Today I’ve spent crying on and off in sheer fear of the call coming in and knowing the result.

I even said a prayer for the first time since I was a teenager.

When ‘no caller ID’ flashed on the screen I sat down, took a deep breath and prepared for bad news.

‘Gail we’re very pleased with your CT results. Everything is stable.
Your lymph nodes are shrinking. Can you feel the lump on your collarbone?”

Me, “Yes and I was convinced it was getting smaller, but then thought I was imagining it because it was just wishful thinking.”

“Well the scan shows it’s not wishful thinking. It is getting smaller.”

Me, “I’m certain the mass in my armpit is smaller.”

“That’s because it is. That’s shrinking too. So are the lymph nodes you can’t see or feel in your abdomen.”

Me now crying, ”and my lungs?”

“It’s noted there’s a slight thickening in the pleura. These drugs can irritate the lung. This could be what’s causing your cough. Otherwise your lungs are clear. It’s early days, but we’ve got things under control.”

Me, “and my CA125?”

“Thats come down too, from 614 to 485.”

Turns out my prayer was answered.

The trial drugs are working 🥺🥺🥺🥺

Hey there beautiful people. Thought I’d better post evidence that I’m still alive 🙈

Thank you to the kind souls who checked in whilst I’ve been MIA, I know you thought you might be messaging a co**se (My humour game is still strong 😜)

Photo taken on Sunday. First time I’d worn make up in 3 months, however this time I actually had a full set of natural lashes for the mascara to cling to, instead of pathetic gappy stumps!
My eyebrows are a different matter, I only have half an eyebrow on each but I’m hoping to start a new trend. My amazing eyebrow pen that creates little hair strokes hadn’t been used for so long it had dried up. I still managed to wing it and make it look like I’ve got some.

Given up on the wigs, here I’ve put on my topper as I finally have a fully covered hairline. Gals I’m starting to look human 🤣
We were off to celebrate our close friends, Kate & Chris’ engagement. I actually wore something other than loungewear, a dress and it still fitted!
Had to reeducate myself in how to wear heels but hey, I remained upright so all was good.

I’m currently laid on my bed at The Royal Marsden waiting for my treatment to come up from the lab.
I’ve been on the trial for seven weeks now.
It has been gruelling in sense of the distance to travel, 4 hours each way. Treatment days we stay in a hotel the night before.
Check up days we do in one day. Sometimes I’m here twice a week. We’ve set up a family rota to take the pressure off Alan.

Before I started the trial I’d begun to have symptoms of the disease as it progressed.
I’d lost all feeling under my left b**b (I guess the effected lymph nodes were compressing nerves)
Pain & spasms behind the rib cage (I learned the cancer had spread into those muscles) Pain in my back and lungs.
I’d begun to take morphine and was liasing with Hospicare to help with my pain management.

Within the first treatment cycle I regained all feeling, my pain has gone and I no longer take ANY pain relief.
This is a positive sign. 🙏
I haven’t had my CA125 cancer marker taken yet, next week I have my CT scan to see if this clinical trial is working.

Last week I met a lovely lady who began the same trial as me in January.
She’s the 5th in the world to receive this drug combination, I’m 8th.
Her cancer markers have gone from 475 to 69 and her tumours have more than halved in size.

I’m trying not to get too excited as I’m fully aware our bodies are different and we can respond in different ways, but this is amazing news.

This truly could be a breakthrough in ovarian cancer treatments we’ve all been praying for 🙏

Anyhoo, I’m off to meet my Liv in the hospital cafe. She has been my chauffeur and hospital buddy on the family rota.
She’s now 26 weeks pregnant and I’m absolutely determined I’m going to hold my little grandbaby and smother them with all the love ♥️

This time 3 years ago I was full of excitement.

The obligatory airport photo. A glass of fizz.

We were heading to Mexico.

This was a holiday we’d had to cancel because four years earlier I’d been diagnosed with a Chordoma. A rare one in a million type of cancer in my spine.

Instead of being laid on the beach with a cocktail in hand I was laid on a hospital table receiving rays of a different kind. Proton Beams at The Christie in Manchester.

Then the pandemic hit. My business forced to close.

Followed by two years of immense stress with the salon. Recovering from the financial losses of the pandemic, losing staff, the end of the business partnership and two devastating floods.

My goodness was this holiday needed.

Four months earlier, during a routine scan in December 22 a ‘cystic lesion’ had been discovered on my left o***y. The medical team in Birmingham, where my Chordoma specialist was based, had referred me on a two week pathway to my local gynaecology oncology team. Despite the referral being chased by Birmingham and me, I’d still not been seen.

Unbeknown to me, I had cancer here.

I was so tired on this trip. I was totally exhausted.
Usually the life and soul of the party, cocktail in hand living my best life, I’d collect friends from around the world.
Many nights I was in bed by 10pm.

We put it down to all the stresses I’d been under. My body ‘just needed the rest’

The signs were there.

The beautiful array of delicious foods at this luxury resort, yet after a few mouthfuls I felt ‘full’

On that flight home I had no idea my whole world was about to be turned upside down. My life as I knew it would never be the same again.

I had my next routine MRI to check the Chordoma.
The ‘cyst’ was still there. Birmingham were not happy I’d not been seen, so they chased again. I was finally given an appointment for four weeks later.

5 months after I’d been referred on a two week pathway.

May 3rd arrived. I had an ultrasound. Internal & external. I was told my ovaries were clear. It had probably been an ovulation cyst.
Despite me telling the oncologist I felt bloated, couldn’t eat without feeling full and that my maternal grandmother had died of ovarian cancer I wasn’t given a CA-125 blood test. My ovaries were ‘clear’

I developed a cough. I put it down to the change in the weather in Mexico to the wet and damp of the UK.
Only it wouldn’t go. I was struggling to breathe and thought I’d developed a chest infection.
I managed to get in with the GP that afternoon.

I was seen by a paramedic who thought I’d developed a blood clot on my left lung due to the long haul flight.
He took a D- Dimer test. It was positive. So I was sent to the acute medical unit.

They took an X-ray and compared it to my X-ray from the year before.
I was meant to have 6 monthly X-rays as part of my Chordoma care plan, but they’d missed the last one.

They showed us the X-ray and our jaws hit the floor.
My lung was being crushed with fluid. I had a large pleural effusion. They told us there and then they believed it was cancer related. The fluid would need to be drained and tested to find the primary site.
Only there wasn’t anyone qualified to perform the procedure as there were only 3 people in the entire hospital to perform the procedure, so I was referred as an outpatient.

I was sent for a CT.

Four days later I had an appointment.
We walked into the small room thinking I was simply having my lung drained.
We were met with a whole medical team.

“Your CT scan has revealed you have stage 4 cancer. We don’t know the primary source”

1.5 litres were drained from my lung and sent for testing.

It had come from the gynaecological tract.

They gave me a CA125. The normal range is 0-35.
Mine was 348.

“You have primary peritoneal cancer. A rare cancer”

Stunned. In shock. I had not one but TWO rare cancers.

“You’re incurable and inoperable,”

Four weeks later, still in shock, I was on the chemotherapy ward having palliative chemo pumped through my veins.

3 months later I had my routine MRI for the Chordoma.

The oncologist rang me. The ‘cystic lesion’ was still there.
“Do you mean the one they found in Dec 22 I asked in disbelief?”

“I’m afraid so. You have High Grade Serous Ovarian Cancer.”

And here I am. 3 years later. Still giving it my all.

The woman in these photos.

I miss her.

On Tuesday we did our weekly pilgrimage to The Royal Marsden.
5am alarm, bleary eyed we hit the road.

We were a bit more prepared and like a pair of oldies, we packed a flask of coffee 🤣

This appointment was my first check up since beginning the trial to see if I can move onto cycle 2.

So how was I on my first week of treatment?

I’ve felt a little bit nauseous at the beginning of the week, but didn’t actually be sick. I’d managed this with taking regular anti sickness medication.

The chemo tablets, Olaparib / Lynparza, (which is the drug I’d taken previously) is double the dose.
I’ve felt very fatigued. Like a sloth on a hammock to be precise. I remember the fatigue when taking this drug before and now it’s in a double whammy.

By Wednesday I stopped taking the anti sickness and was relieved to find the phase had passed.
So I think the nausea is caused by the other drug administered via IV, Idetrexed.

The nurse did the usual and stole several vials of blood.
Me looking away, Alan looking on like a vampire.
‘Crikey is she going to have anything left?” He joked with the nurse.
Me, ‘Gross.” 🤢

All my observations were good. Heart rate, temperature and blood pressure. These confirmed that I’m still alive. Most reassuring.

Next meeting with the consultant to discuss the results.
“Your bloods are all good. All within the normal range. This means we can authorise cycle 2.” 🙌

I asked about the nausea and if that and the fatigue would be accumulative the more I have.

She explained that there are only 8 women on this trial and all tolerating the drugs well, worsening symptoms haven’t been reported. Great news.

This has been unlike any of the chemos I’ve had previously and I pray this is a breakthrough in Ovarian Cancer treatment. Chemo side effects for me were a million times worse than the illness.

I’m now on my week off. No IV or chemo tablets and I already feel more alive.

So I return on Tuesday for cycle 2.

Everyday I’m feeling my visible and feel able lymph nodes. Checking to see if they’ve got smaller.
I think they have. But this could be me wishing they have and looking for positive signs.

My cancer markers are now at 614. The highest they’ve ever been.
The irony is when I was initially diagnosed they were 348 and at that point I was extremely ill and very symptomatic. This was because my lung and heart were being crushed by all the fluid on my lung.

The disease is now predominantly in my lymph nodes, I’m barely symptomatic yet my cancer markers are higher. It goes to show disease location is more relevant than the numbers.

Sleeping has become a bit of an issue. In the night hours the mind ticks like my grannies clock.

I realise the damage all the mistakes and errors during my care have affected me mentally.
With more pain in my left b**bie I laid awake all night on Monday thinking, ‘What if Queen Charlotte’s got it right and Exeter were wrong all along? What if I do have breast cancer? What if they have to take me off the trial? If I mention it they might have to investigate and stop the trial?”

This gave rise to feelings of panic. But by morning I was telling myself I’d been silly and it’s just another affected lymph node and when I’ve got the CT scan results it will show just that.

Another positive sign is I’ve not needed to take as much pain relief. If the cancer is shrinking it’s not compressing on nerves.

I relayed my thoughts to Alan and as we know he’s a pessimist and I’m an optimist.
“It’s only been a week. Don’t get your hopes up too much or you could be disappointed.”

I protested I’d read one woman’s experience whilst she is on another trial targeting her alpha folate receptors. “After ONE cycle her CA125 went from 500 odd to 64. This could happen to me!”

“Well let’s hope so.” He nodded. I know he hopes that’s the case, but in truth he’s a realist.
Me I always look for the best case scenario.

It is a long journey for such a short appointment but everything is monitored so closely.
If I’m tolerating everything well after cycle 3 my visits can be moved to just treatment days, fortnightly.
It is a big commitment but I’m praying the pay off is worth it 🙏

The evening before we left our dear friends Kate & Chris called in with 6 home cooked lasagnes, so we had a cooked meal to come home to. Plus some for the freezer.
This is the second time they’ve done this for us.

We are so, so blessed with the people in our lives ♥️

That’s one of the most significant things I’ve learned in this cancer journey, the kindness of others is one of the most precious gifts.

Precious gifts in the form of a yummy lasagne. Bon Appetite!

Today is my youngest son Jacks 32nd birthday.

Jack out of all my sons was the one I’d worried about the most.

If you’ve followed my blog you will know the journey our family went through, navigating life with a child with ADHD.

Instead of ADHD inhibiting his life, Jack has turned all the ‘things’ people with ADHD are considered to be a negative into a positive and I couldn’t be prouder of him.

Sensitivity to noise? When he used to launch into orbit at a ‘noise’ his sister Olivia would make when she ate, that nobody else could hear.
He learnt he had a gift. He could hear ‘the drop’ His hearing was fine tuned.
He’s worked as a DJ and his career flew. Playing sets in Ibiza. He was due to fly to Miami to play at a huge music festival when COVID hit.

He followed in my footsteps and carved a career as a barber, with a large clientelle.

He gained modelling contracts.

Jack needs routine and consistency to keep himself regulated. So what’s he done? Thrown himself into his fitness and at his first men’s physique competition he came second.
In April he enters his second competition and we’re going to watch him lift that first.

He’s up at 5:30am everyday and in the gym for 6am before doing a days groundwork. That’s dedication and commitment.

Does he change his life goals and career paths more than most? Absolutely. Who wants to do the same thing for the rest of their lives?
He chases his dreams. He’s a risk taker. He knows his own mind. He’s a go - getter.
For the kid that nearly got thrown out of school on many occasions because he didn’t ‘conform to the norm’ proved all those doubters wrong.

Above all he’s a Mummy Boy. He loves his Mum more than anything. (Well me and chicken ramen 🤣)

For everything going on behind the scenes.
He still shows up.

I’m sooooo proud of my lil ginger bean.

Happy 32nd Birthday son ♥️

Since I’ve been taking M*O*R*P*H*I*N*E at night to manage the pain I’ve been having the most random, vivid dreams.
So vivid I’m thinking of starting a series, ‘Gail’s messed up dreams.’

Here’s episode 1 😆

Last night I dreamt Donald Trump was my Grandad.

I also had a baby. Not just any baby. An adult that was the size of a baby. This baby kept sticking its fingers in plug sockets. Miraculously it didn’t get electrocuted but everywhere we went it was sat in front of a plug socket with its finger in it.

Then I was queuing to get into a nightclub. A local nightclub called ‘Warehouse’ I told them Donald Trump was my Grandad and they let me in for free. In fact a bouncer was sent to es**rt me safely up the stairs.
Only he was an absolute perv and kept rubbing me all over my arms and back. So I told him my Grandad was Donald Trump. That put a stop to the perv and he looked terrified.

I arrive at the top of the stairs to the nightclub. Only it’s not Warehouse. I’m in Waterstones bookshop.

Now I’m looking for a book to buy my Grandad Donald to celebrate… wait for it… Iftar?????

I’ve chosen a book and I’m picking up stone angels made from Jade stone.
The book is a cookery book.

Then he appears. The Don. My Grandad himself.
He’s walking over to me, doing that pointing, twisting finger thing.

He tells me the cookery book is the best gift he’s ever received and it was ‘very good and very strong’ and that he loves baking.

Before I knew it I’m no longer in Waterstones. I’m stood in John Lewis’ cafe watching my Grandad, Donald Trump get into a lift and disappear 🤣

I’ve wracked my brain trying to evaluate the meaning of this dream and I can only come to one conclusion.

Don’t take drugs kids.

We arrived home late on Tuesday afternoon.

I felt ‘strange’ a bit not quite with it. (Not that ‘normal’ and me belong in the same sentence anyway!)

I have felt nauseous but not been sick - YAY!

The Royal Marsden had discussed pain management and my CNS mentioned morphine.
Tears pricked at my eyes and gave me away.
My voice faltering I managed, “I don’t want to take morphine because then I really will feel like a cancer patient.”
My chest began heaving up and down.
The irony. I was in a hospital bed, a cannula in my arm about to start a clinical trial because I AM a cancer patient. I just don’t want to feel like one.
Between my sobs I explained,”When my Nan was dying of cancer they were pumping her full of morphine. That’s all I remember.”
I was associating it with end of life.

The CNS gave me a warm smile and said, “Gail you’re taking it anyway. You’re taking codeine, it’s an op**te. Morphine isn’t just given to cancer patients. I took it following my knee replacement. It’s excellent pain relief.”

“Really?” I asked and I began to smile and then laugh as though I was eight years old. I wiped my tears and said, ”What a big baby. Ok I will try it and see how I get on.”

Later when the consultant visited she suggested a ‘baby’ dose. Which in all honesty didn’t touch the sides so it has been doubled already.

I’d been in a bay. There were only four beds. Opposite me was a lovely lady, also with Ovarian cancer. Beside me another lovely lady with breast cancer. All starting totally different clinical trials on the same day.
We chatted and told each other our stories. All connected by the big, horrible C.
These trials our hope. Our lifeline. All of us praying they will grant us the most precious gift.
More time.

I rarely watch TV, yesterday I decided to ‘see what was on’ instead of doom scrolling and festering between the sheets.
‘Long lost family’
Well what a blubbering mess I was.
Maybe daytime TV isn’t for me.

Today I’d had enough of looking at the same four walls. The realisation of how lost I feel.
I’ve gone from a busy, high flying career to nothingness.
Ironically I don’t relate to the hairdressing world anymore. It’s so far removed from my life and feels so superficial to me. I don’t miss that at all.
But I do miss the regular human contact.
Lots of different faces. All with different stories to tell.
As the sun broke through the clouds I thought, “I’m getting out of the house. I need fresh air. I’m going to walk to the Quay.”
Without any further thought I pulled on my coat and my cosy Ugg boots and shot out of the door. I was taking myself for lunch.

Part way there I began to feel exhausted but I was determined. ‘Mangoes’ the sign above the gorgeous Quayside cafe where I always meet with Sacha and sometimes Sophie as it’s close to Muse, their salon.

I ordered a chai latte and cream cheese, smoked salmon with capers on sourdough with pickles and water cress. It was bloody delicious.

Heading back I was feeling like a puffer fish because the smallest amount of food bloats me.
Feeling full after eating small amounts are a classic symptom of Ovarian Cancer.
I just wanted to curl up and go to sleep, but no, I had to get myself home.

I looked up and instantly smiled, so happy to be alive. The sun peering through the clouds, the sun rays creating rainbows on the clouds. I whipped my phone out to capture it.

I was walking home at a snails pace, thinking I’m still going to be here tomorrow, plodding home.
A bird flew past and landed on a branch. I stopped to listen to its beautiful melody. Again it made me smile. I’m still here to listen to the birdsong. What a blessing.
In a world that feels dark and heavy, there are still so many beautiful things.
Mother Nature is the best tonic.

I finally arrived home. Breathless and worn out.
I caught site of myself in the mirror and began laughing. My hair, where it had thinned is growing back. I obviously run my hands through it and had pushed it back to resemble a mullet.
I looked like Billy Ray Cyrus.

Chuckling to myself I began singing, “Don’t tell my heart, my achey breakey heart, I just don’t think you’d understand….”

Well it was touch and go to whether I’d get here, but here I am.
Day 1 of the IDOL clinical trial.

My bloods are all good so I’m due to receive the trial drug this afternoon.
(They’re currently in the lab being made)

I’d requested another PICC line but this isn’t being done today, so I was more anxious about having the cannula fitted than the trial drug itself 🤢🙈

My worries were alleviated when a lovely nurse got it in in one go. (No fainting this time 🙈🤣)

The ward is small with only four bays.
The staff are incredible and very attentive.

This morning I’ve been seen by my assigned nurse, the CNS and the Doctor.
It feels like a private hospital in fact.

We travelled up yesterday and stayed in a hotel overnight because I had to be on the ward by 9am. I’m staying in the hospital overnight for monitoring. Alan is being booted out back to the hotel.

I’m feeling incredibly calm now the cannula is in.
Phew!

Each time I’ve come to the hospital I’ve worn my cross which my clever Dad made for me.
One of the consultants is Irish and he commented on it being a Celtic design. He asked if I had Irish blood.
I said, “No but I’m a redhead, does that count?!”
I’ve realised I fiddle with it a lot.
My thumb and finger sit perfectly in the centre and it’s very calming.
How clever is my Dad, I’m 54 years old but he’s still looking out for his little girl 💗