Reflection.

Opening my blog and realising that it's been a full three years since I updated it.

I've been meaning to write for a while now, but the older I get, the more I procrastinate.

It's now exactly eight years since my first chemo session, the first of six.

Thankfully still in remission, but with lingering long term health effects and the constant, back of the mind ''what if it comes back'' niggle that will never go away.

I never had a eureuka moment on finishing treatment, the change my life for the better moment that so many survivors seem to have.

But it has definitely changed my outlook on life.

I'm spending more time in the garden, appreciating the small things in life, and have learned to pace myself, as fatigue is an ongoing issue.

I've also recently been diagnosed with hyperparathyroidism, after breaking my shoulder last year kickstarted a long overdue dexa scan and repeat blood tests.

These were my first blood tests since chemo in 2018, and highlighted high calcium levels.

Interestingly, breast cancer has been linked to hyperparathyroidism. And looking over my 2018 blood tests, I had high calcium levels before and during chemo, which weren't picked up by the oncologist.

So now I'm post urine tests - also showing high levels of calcium - and pre kidney scans.

I'm trying to put it to the back of my mind.

Along with the crumbled filling in a wisdom tooth that I'm also studiously ignoring.

Talking hair. Slow, slow, S L O W!

 Hair....oh my goodness, my hair!

Chemo, a chemically induced menopause, and my hair has never recovered.

August 2018, and I was finishing my last cycle of chemotherapy.

I was wiped out, emotional and my veins had just about given up , after six sessions of toxic intravenous chemicals being pumped in.

It took four attempts and three nurses to find a viable vein, and it was pretty traumatic.

But the plus side was that my hair had started to grow back , and I had a faint fuzzy white covering under my headscarf.

I couldn't stop touching it!

After the initial shock of the new hair being white, it grew steadily over the next few months, a mix of white and grey fuzz.

Gradually it developed a fuzzy kink to it and the grey became interspersed with brown, a coarse texture, but it was growing!

Fast forward a year, and, although quite thick, it was growing upwards and outwards, like Worzel Gummidge, but not doing very much lengthwise.

I also had a bit of a bald patch and a combover on my crown, which took another year to fill in.

While on tamoxifen my hair stayed quite thick, albeit coarse.

However, when I switched to exemestane it began to thin.

A combination of exemestane and a chemo induced menopause, and I'm mourning my pre cancer hair.

The texture has finally returned to normal and lost the coarseness and kink, but it's much thinner than it was, and growth is painfully slow.

At more than four years out of chemo, and exemestane still ongoing, I've given up on ever being able to rock a shiny bob again.

As a woman, our hair is so important.

A bad hair day can negatively affect emotions, and I have a lot of bad hair days!

When it fell out during chemo, the anxiety that it wouldn't grow back was real.

But I wasn't prepared for the change in texture, the thinning, the S L O W growth over the next few years.

Bald was definitely easier to deal with than the hair I have now.

Contemplating going uber short.

 Winter blues and the hope of Spring.

I have really struggled with winter this year.

I'm not sure if it gets harder to deal with the older I get, or it's a build up of many things, but January seemed to go on forever!

The low light levels, dark at 5pm, grey skies and drizzle, interspersed with hard frost and wind.

My mental health definitely suffered this winter.

I've been unmotivated, anxious and distinctly lacking in oomph.

Insomnia is my nemesis.

Insomnia that seemed to ramp in those dark nights, while nocturnal Lily-the-cat was wandering around outside, oblivious/deliberately ignoring me calling her, whilst I also wandered around outside, dressed in pyjamas and a big hat and setting off various light sensors as I searched for her in the village!

2022 was a tricky year for selling, and the cost of living was - and still is - spiralling.

My ongoing battle with exemestane isn't helping either.

What is it with this single solitary pill that causes such awful side effects?

Each one on its own is probably not too bad, but all thrown in together is hard to deal with.

Five years on from my breast cancer diagnosis and I'm probably skipping more than I'm taking now.

 I've found the lack of support from the oncologist post treatment quite shocking really.

Impossible to get an appointment with and my lovely but unhelpful breast care nurse on the other end of the phone, just reiterating that I need to take it for a decade!

Sometimes, I wonder if tamoxifen was the lesser of three evils.

At the crux of it all is being immediately thrown into a chemical menopause with chemo and the exemestane just ramping up the side effects with a vengeance.

Perhaps male oncologists just don't appreciate the severity of menopause symptoms?

BUT, here we are, nearing the end of February.

The days are longer, the daffodils are nearly out and my windowsills have become plant nurseries.

The insomnia is still rampant, the low level anxiety ever present, but my mood has lifted.

Lily the wanderer is staying inside more at night, and the windows are firmly closed.

Sometimes, it's the small things that can make all the difference.

I had a long overdue lightbulb moment that maybe I wasn't motivated workwise in winter because my north facing workroom barely caught the sun.

Impossible to move my large desktop computer, and there's no way around moving my sewing station, but having a new, shiny, present to me laptop in the sunny, south facing front room has made a huge difference this month!

I had originally replaced my old laptop with a desktop to do precisely what I'm not doing now - keeping work behind one door - but, for now, this is working for me.

Musing on hormone therapy, nearly four years in.

October 2018.

I remember the apprehension I felt, after meeting with my oncologist and picking up my first packet of Tamoxifen, from the hospital pharmacy.

Just one little pill a day, it should have been the easy part of treatment, after two surgeries, chemo, radiotherapy and booster rads.

Fast forward nearly three years and nine months - yes, I'm definitely counting - into a ten month plan - and discarding Tamoxifen and Letrozole in favour of Exemestane, it's not been easy.

Everyone reacts differently to these drugs, but for me, I've been plagued with hot flushes with all of them.

Some days my whole body aches, and the weight gain associated with these drugs has all accumulated around my middle.

I feel like Humpty Dumpty.

As a positive, the initial hair thinning I had has finally slowed down during the last year, and it no longer looks as if I have a combover on my crown.

Many times over the past three years I have contemplated quitting, and self prescribed myself week long breaks at various times, when the side effects get too much.

Definitely not something I'd recommend, but for me, it was the difference between quitting completely or carrying on.

Fatigue has been cumulative with the exemestane.

I've learned that if I have a relatively busy day I'll be wiped out the next. 

I used to beat myself up about being lazy, but now I just accept that I need to take things at a slower pace.

Being thrown into a chemical menopause with chemotherapy, aromatose inhibitors  seem to exaggerate the menopause symptoms that may have appeared naturally.

There was no gradual buildup of side effects, no option available of using HRT to control the symptoms,  just wham, bam - hello menopause.

I do feel that oncologists are quick to gloss over the side effects of aromatose inhibitors.

And while I can't fault the care I was given during active treatment,  there is a definite lack of aftercare - and understanding - of the impact of aromatose inhibitors on everyday life.

In February of this year I took part in a podcast with the wonderful Victoria Derbyshire and three lovely ladies, discussing the side effects of hormone therapy.

I will admit, I recorded the podcast with my feet in a bucket of cold water and a fan on standby for an impending hot flush!

And Then Came Breast Cancer.

And Then Came Breast Cancer is a series of podcasts by Victoria Derbyshire,  each focusing on a particular angle of breast cancer and its aftermath.

I love the format of these podcasts.

They're great to have on in the background, and so relatable.

A pill a day helps keep CANCER at bay...

It's been a while since I've updated this blog, and it's changed a lot since it got hijacked by a cancer diagnosis, two and a half years ago.

Cancer changed me.

A year down the line, I didn't think it had, but fast forward another eighteen months and it did.

It made me stronger.

It made me appreciate the things that really matter, but it also toughened me up.

I'm mentally tougher, emotionally tougher, but physically...physically, I'm struggling.

Whoever would have thought just one little pill would be such a tough treatment to swallow?

I've been through Tamoxifen - the hot flushes and weight gain were horrendous - Letrozole - well, I lasted just eight weeks on that one, due to the bone pain and insomnia - and now Exemestane.

For the first month I thought Exemestane was the wonder pill; side effects decreased considerably, and I felt like me again.

But the honeymoon period was short lived.

Gradually the stiffness, the joint pain, the insomnia crept up, along with the hot flushes, just for good measure.

Exemestane is steroid based, and considering I was bouncing off the walls with the chemo steroids I should probabbly have expected the insomnia and bursts of random energy, followed by a crash of fatigue.

Not sleeping has become the new normal.

An industrial sized, menopausal fan has become my favourite room accessory.

But the joint stiffness...ooffttt!!!

There have been times when I've been kneeling in the garden, and am suddenly unable to get up.

This usually happens when the garden is overlooked, I'm wearing a dress and the only way to stand is to huff and puff and swear a lot and gradually hoist myself onto all fours to lever myself up!

If I'm moving around, everything is fine, it's stopping moving that's the problem.

I've always been able to contort my limbs all over the place, and that hasn't changed, which makes it all the more frustrating when I suddenly seize up.

Sometimes, I feel twenty years older than I am.

Being flung into an overnight menopause after my second chemo didn't help.

I've toyed with skipping tablets, taking a week off, restarting daily with good intentions, only to skip one again.

It's tough.

My cancer scored 8/8 for oestrogen and was grade 3, lymph node positive.

Just two positive nodes, with one being a single solitary cell, but enough to make the risk of recurrence high enough to make stopping the sodding pills risky.

Going through chemo I was part of The May Ladies, a forum group set up in May 2018, of ladies going through chemo for breast cancer at the same time.

We kept in touch.

Last month one of these wonderful ladies died of secondary breast cancer.

It came back in her brain. 

Less than two years after completing chemo.

It shocked me to the core.

And that night I restarted the Exemestane tablets.

But I'm struggling.

Like a homing pigeon on a mission...

Two weeks ago I rediscovered London.
It was the first time I've been back since that fateful first mammogram, in January 2018.

Amazing weekend with my son...tennis, dumplings, Puma and Liberty!
As he's currently living in Germany I don't get to see him very often, so these times are special.

Ahhh, Liberty...
When it comes to Liberty, I'm like a homing pigeon on a mission!
An obsession that started in the 1980s, as a sixteen year old at Art School, and continued throughout the decades.

I love Liberty, and my bank card took a hammering in the fabric department.
So now my shelves are groaning under the weight of all the fabric, my head is full of ideas, but my body is distinctly lacking in oomph.

I blame winter.
Love winter layers, the feel of tactile wool, the glow of fairy lights, but I have a definite aversion to the cold, the Welsh drizzle and five o'clock darkness.

Completely unmotivated this week.
It's a combination of the bitter cold outside, the excitement of rediscovering London and starting letrozole.

London marked another cancer milestone for me.
(There have been many!)
This was the first time since chemo

therapy that I felt my hair was proper hair again.
That no one looking at me would think of it as chemo curls, just hair in need of a good cut!
Looking at my unruly curls growing out in all directions and my too long and wispy fringe, I started to remember chemo baldness fondly.

I haven't had a short hairstyle since I was five years old, but the positive thing that came out of losing my hair last year was that it opened up hair options that I'd never considered before.
So...short as short can be! 

Liberty sunflowers,  Liberty camera strap.

Marking cancer milestones.

Cancer.

I have to admit, nineteen months post diagnosis and eleven months post active treatment, it is still something I think about every day.

Not in a constant, brooding sort of way, but it is always there, at the back of my mind.
A nagging doubt.
And I'm not sure if it will ever go away.

There will always be that fear of recurrence;  
Every time I pop one of the dreaded tamoxifen pills, when I'm wide awake in the middle of the night and find myself tip tapping on Google...when I'm fighting lower back pain.
Always there.

But one of the positive things to come out of the past year and a half - and there were a few - was that it's helped me to focus my business more on something I am passionate about.
Cancer.

We may be in 2019, but cancer still seems to be something that is whispered about, not discussed openly and referred to in vague tones.
Yet nearly half of us will be diagnosed with cancer in our lifetime.

There appears to be a distinct lack of cancer cards and gifts available on the high street.
A get well soon card just doesn't seem appropriate, so this year I've started designing my own, marking cancer milestones.

These are two from a range available at my Etsy Shop, 
https://www.etsy.com/uk/shop/TheSherbetPatch

https://www.etsy.com/uk/listing/552318150/chemo-card-cancer-card-chemo-is-tough?ref=shop_home_active_19

https://www.etsy.com/uk/listing/290553063/cancer-card-chemo-card-bald-brave-and?ref=shop_home_active_18