Welcome to my Blog

I have been through a massive learning curve, the journey has been a rollercoaster, physically, mentally, emotionally, and academically, and  truth be known, I am still travelling. I am not sure about my destination, I am still trying to take on the 'one day at a time' ethos. 

When you start a blog, you are handing over your life, this has to include being honest, so whilst I will always try to be positive, I would be lying if I said there have not been dark moments. 

I hope that my delivery and content will help others to understand what is the 'battle' of cancer. 

One again, thank you for your time. 

Toilet Talk 

Depending on your audience - it can be an awkward conversation...maybe?  Well not anymore, I can safely say the physical aspect of my motions literally consume my day, my personality, and my plans, and normally are the topic of conversation during appointments. 

If you know - you know!

Let's break this down (if only) I take cancer medication - twice a day,  they cause constipation, I take morphine to mask the cancer pain, whilst a delightful feeling, they do make me 'floaty', add pain killers for the muscle pain and nerve damage, (these destroy your gut health, and cause constipation) , so I have to take a tablet to protect the stomach lining, oh, the finale, a lovely orange flavoured laxative drink to prevent constipation, which I have been told I can double or treble if required; I did say 'Thanks Love,  but it's not Brandy is it?".

If I get constipated the pain is excruciating, causing more pain due to the impact on the tumours in the liver, and stomach lymphs - oh yes... I am living the dream! The more pain I am in, the more pain killers I want to take, this is better known as the 'shit-show cycle'.

One night the pain was so bad in the area around my liver, I actually thought my time was up. I called the Cancer 24/7 support people, explained my symptoms, and yes I did ask if this was the road to Heaven.  They were unsure what road I was on,  but thought it may be sepsis, so urged me to call 111. I called 111, explained my symptoms, they thought I was having a heart attack and called an ambulance for me, I did explain I wasn't having a heart attack, I mentioned sepsis, and further explained about the cancer, but the computer was insistent I was having a heart attack; who am I to argue against the 111 computer?

I asked them to not 'blue-light' the ambulance, it was 2am, I didn't need my neighbours to leave their beds in their nightwear, conversing in the close, replicating a scene from 'Dawn of the Dead', (it was April, Christmas PJs by now are not fit for social events). 

The ambulance arrives, two paramedics, one introduces himself " Hello, I am not sure what we are supposed to do for you, I am not a surgeon", I respond diplomatically "Unless you have a liver in your ambulance, surgery won't be required". Silence. He proceeded to ask me what was wrong, I explained that I was not having a heart attack, as diagnosed by the 111 service, and I didn't want an ambulance, but 111 insisted I was having a heart attack, and because 111 had mentioned a heart attack 3 times, and I am not a medical professional, I thought  maybe I was, I mean I haven't had one of those before, so I am not too sure what it feels like! They responded it says 'Abdominal' on the paperwork, again, keeping composure, I respond "Maybe my abdomen has moved upwards, and the computer has got confused?". 

 I went on to explain that it was infact the area around my liver, which is concern due to the cancer. Anyway, I was checked, the liver was so swollen that he could feel it without having to search. So I was taken to hospital. 

CT scan and bloods done there is nothing the can do apart from give me introvenus pain killers, so I am sent home, with a body full of Codeine , a big player in the constipation game. 

Palliative care come out the next day to discuss pain relief, but also explain that my digestive system showed signs of inflammation, and...severe constipation, also the bile duct is a little blocked causing havoc for the liver. The one-way conversation progressed into a discussion about the position and size of the intestine, what a joy, at this point I wanted to take more morphine to numb the conversation. 

I used to have conversations about the havoc my heels had caused my feet from a night out - now... Well, need I say anymore? 

 

I started Immunotherapy April 2024 - my friend said to journal by experience, I started, then I stopped. 

I found the note book she gave me earlier this year, and this poem was my first and only entry. I have used the note book since to capture different memories, transferring them to my blog. 

The poem is very emotive for me, I hope I have captured the experience enough for you to gain some understanding of how overwhelming it was. 

 

Day One - Chair One. 


Sitting
Waiting
Debating life
Debating stranger’s lives.
Strangers, here for the same anomaly
But with unique, individuality.


Sitting
Hoping
Analysing and wondering,
wondering what people’s journeys have been.
Strangers sat in the same place,
Some with stories written on their face.


Sitting
Static
Chairs in rows, in a waiting lounge
A waiting lounge that could be anywhere in the world,
A train station, an airport.
Sat with strangers, their journey may have just begun,
but for all of us, the destination is yet unknown.


Sitting
Watching
Waiting and wondering
Chair one - Day one
This is not a journey you would desire,
This is the Cancer treatment ward.
Strangers sat, all here for the same reason,
longing for stories of hope and inspiration

Sitting
Tears descend.
Descending out of my control,
Intravenous pumps supplying the strangers,
Some wrapped in blankets, some on phones.
One lady is knitting, albeit subconsciously.
The tea lady comes, offering a taste of normality.


The sitting
The waiting
The staff reassuring
The journey
The destination.
The reality of the cancer treatment lounge.


DH April 2024

 

 

 

Why does taking blood turn into a competition? 

 

Ah, the monthly blood test day—what a treat! At this point, I feel like I’ve earned an honorary degree in phlebotomy with how often I’m in there.

On test days, I chug water like a camel and wear the comfiest clothes I can find, making life easier for the nurses (and, let’s be real, for me too).

So, I stroll in, roll up my left sleeve, and casually announce, “My left arm’s the working one, the right one has officially retired.”

But it seems my nurse didn't hear me. Without eyesight,  she says, “Roll up your right sleeve, please.” I try again, politely, “The right arm’s a no-go. It’s a tricky one. The last lot of bloods were taken from the left, after the nurse tried the right, and couldn't manage a drop.”

Apparently, I’ve triggered her inner challenge-seeker because she doubles down with a firm, “Right arm, please", directing me to the pillow she has set up for the right arm. Well, who am I to argue? Sure, I’ve got my unofficial degree in veins, but I don’t have the badge to prove it. Right sleeve up it is.

Next thing I know, the tourniquet is wrapped around my arm— it feels like having a bra that is four sizes to small. I ask, “Should I clench my fist?” but I’m pretty sure she didn’t hear me because there’s no response, I don't think she had a hearing problem?

She starts tapping on my arm, searching for that elusive vein. And tapping. And tapping. And tapping. Meanwhile, my arm is slowly losing circulation, and I’m quietly wondering if it’s about to fall off.

“Yeah, this arm’s been a bit numb lately,” I casually point out. “The last nurse just went with the left one,”

Wrong move. This seems to ignite some competitive fire in her. Before I know it, the needle’s in my right arm, the vial’s attached… and guess what? No blood. 

She tries again. And again. And again. At this point, my right arm looks like I’m auditioning for a role in 'Trainspotting' —and I’m genuinely worried she might stick the needle somewhere worse if I dare complain. So, I shut up and let her do her thing.

Then comes the moment of truth: “Let’s use a little saline to check if we’ve hit the vein.” Spoiler alert: we hadn’t. Still no eye contact,  I am now wondering if I am in an audition for 'Casualty', and she is a rogue nurse. 

Just for sympathy impact - saline hurts when it misses the vein!

Trying a different tactic, I laugh and say, “Yeah, this arm’s been numb lately. Probably the cancer meds. It’s a pain in the butt, not literally my butt, but you get the idea.”

She gives me a smile, “Well, if your arms keep this up, we might have to try your 'butt'.” At least we’re on the same page now.

Finally, we switch to the left arm—where the blood flows like it’s been waiting for its moment to shine. She finishes up, I thank her, and she sends me off with a cheerful “Take care.”

I wander to my car, cradling my poor, battered right arm and wondering how I’m supposed to drive home. But hey, at least the left arm’s still in one piece. 

Bizarrely later that day I was diagnosed with Peripheral Nueropathy - basically nerve damage in the right arm due to side effects from the meds, well I was assured it was from the meds! 

My new goal: To the learn the art of conversing the matter at hand - 'I know my body' versus 'We know your body', in a diplomatic way that assures the best outcome for all involved, but mainly me. 

 

The Rising of The Phoenix - possibly not as magnificent. 

 

As part of my care plan for stage 4 cancer, alongside targeted therapy medication, I also undergo regular blood tests, CT and MRI scans, ECGs, and routine skin checks.

Every cancer patient has a tailored care package, which can vary depending on the type, location, stage of the cancer, and the treatments they’re receiving.

Today, it was time for my ECG—a biannual test to monitor my heart for any irregularities caused by the medication.

I'm honestly not sure why they scheduled me for an 8:30 AM appointment. Perhaps it was because I had to cancel last week’s slot. Either way, let me confess something: I’ve never been a morning person. And these days, with the side effects of medication and the toll on my body, early mornings have turned into a hazy ordeal.

I had completely forgotten about the appointment. Thankfully, my husband was awake at 7:00 AM, breaking the silence with his latest video recommendation—loud enough for the whole neighbourhood to hear. Let’s just say my response to his choice of video was... less than polite. Not my finest moment.

Then it hit me. “Oh no! I have to be at the hospital!” I leapt out of bed—or at least, I tried to. Imagine a Phoenix rising majestically from the ashes, reborn and radiant. Now erase that image, because what actually happened was more like a bedraggled, disheveled bird awkwardly tumbling out of a bush. That’s me, the dysfunctional Phoenix, stumbling straight into the door on my way out of bed.

Still half-dazed, I flapped around the room, hurling a few choice words at my husband for good measure. By this time, he had smartly inserted his headphones, tuning me out. I’m certain he glanced my way, but I can’t be sure. My dramatic stomping into the bathroom probably clued him in that I was not, in fact, ready to face the day. 

In an attempt to reprieve himself,  gently knocked on the door and asked if I needed a drink before I left.

I resisted the urge to unleash my inner thoughts and muttered a single word: “Tea.”

Somehow, I made it to the hospital. I even managed to park in the wrong location, adding an unnecessary and unwanted fast walk to my day.  Eventually, I found my way to the cardiac department. The receptionist looked up from her desk and asked if I was alright. 

“I will be,” I replied, with a small smile. “I just need to fluff up my big girl feathers.”

The ECG went smoothly, and I survived the ordeal—yet another day in this ongoing journey. One step at a time, right?. 

 

Learning Curve - always be prepared, to include your underwear!       

As promised, I will always strive to be as honest as you can handle.

My first dermatologist appointment in May 2022 still lingers in my mind—a pivotal moment that forever changed how I prepare for such visits, including my choice of "appointment" underwear.

That day, I went to work before the appointment. It was warm, so I opted for my classic white linens—a timeless and airy look.

I didn’t know what to expect during the appointment. In the back of my mind, I assumed it would be cosmetic: a quick glance, perhaps an agreement with my GP’s diagnosis, and that would be it.

When it was my turn, I sat down with the dermatologist ("Dermy," as I like to call him). We discussed my history of sun exposure, including sunbed use. Then came the moment: I was asked to pull up my linen pants to expose the area of concern.

The Dermy pulled out what I could only describe as a "bionic eye," examined the site, and jotted down some notes. He then said, "I’m not entirely sure. I’d like to get a second opinion."

Enter a younger male dermatologist and a female nurse. After exchanging a few glances, one of them asked, "Could you step behind the curtain and remove your clothing, leaving your underwear on, please?"

Oh no. This was the moment I realised I hadn’t fully thought this through.

Under my pristine white linens, I had chosen nude-colored underwear—practical but far from flattering. It wasn’t just plain; it was the epitome of boring: a large, seamless, hold-it-all-in "granny" pair. To make matters worse, it matched a similarly uninspiring "hammock" bra. No lace, no ribbons, no embellishments—just sad functionality.

The shame was real.

When I stepped out from behind the curtain, I felt like a potato being presented for inspection. Three strangers stared at me, armed with their magnifying tools, ready to scrutinise every inch of my body. A full-body check followed, which, while thorough and appreciated, left me regretting my lack of preparation for such a scenario.

I stood there, silent and mortified, unable to think of anything to break the tension or distract from the awkwardness. It felt like an eternity before I heard the words, "You can get dressed now." Like some kind of superhero, I managed to dress at lightning speed, eager to reclaim a shred of my dignity.

The lead consultant informed me they weren’t certain what the lesion was but recommended a biopsy and removal to rule out cancer. They could do it right then and there. The mention of cancer was jarring, though I still naively thought, "Skin cancer? It’s probably nothing serious." I had no idea how significant this was at the time.

In the next room, I finally found some relief—a gown. Perhaps it was offered to restore my dignity, or maybe for their own sanity after the sight of my unfortunate choice in underwear. Either way, it was a welcome reprieve.

The procedure was quick. After administering a local anesthetic, they offered me the choice to look away while they worked. Oddly curious, I chose to watch. It was a surreal experience—seeing someone use a scalpel to remove a circular section of my leg while feeling absolutely nothing. Honestly, I was relieved to see it go; the lesion was as unattractive as my underwear.

Once the procedure was done, I headed back to work, hoping I’d never have to see them again. At the same time, I couldn’t help but wonder if my "nudes" might become a topic of conversation in their staff room.

Now, all I could do was wait—six weeks for the biopsy results. Despite the gravity of their decision to remove the lesion, I didn’t fully process the seriousness of it at the time. I’ve since read stories of both GPs and dermatologists misdiagnosing cases, sometimes failing to remove concerning areas. In hindsight, I’m thankful they acted decisively.

After this experience, I invested in proper "appointment" underwear.