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.

Full Circle 

Having cancer has it perks - every cloud, and all that.

Being retired off, like an old pit pony being put out to pasture, an after work life of freedom, and grass; this is not a metaphor for smoking weed, and please don't assume that because I am retired I am 66 years old, whilst the last two years have taken it's toll, it's medical retirement!

Also, gaining the title of 'Disabled', with for once in my life being described a a 'high level' achiever, albeit by PIP. 

With all this in mind I have afforded myself an 'Access Card', for a minimal subscription it displays the support you need, i.e. I need to use your toilet, I can't queue, I need a carer; unfortunately it does not say 'I can't do housework', however I have emailed the company. 

So, the card arrives and what better way to test it out than head to town, with my carer, armed with my card, I head to a well known high street, well priced clothing store. 

What could go wrong! 

Well said shop has, like many, diminished many of their tills, so I find myself on a floor with no 'pay here' points. After exercising my rights to ensuring that every item had been touched, I was exhausted. 

I seek support from a shop assistant (SA), "Where are the nearest tills please?, I need some support", and proceed to show her my Access Card. The SA, whose name I will keep private, as I don't want her to be bombarded with other Access Card holders, swiftly takes me to the lifts, holding my arm, and my shopping, the card didn't specify that I needed to look like I had just been caught shoplifting, my daughter and grandchildren following behind, with mixed emotions clearly displayed on her face!

We arrive at the tills, where the SA quietly announces via the tannoy " Can we open up till 8 for this lady please, she needs support with her purchases". 

If Hermione Grainger had been my carer, I would have asked her to 'Wingardium Leviosa' me away, or maybe my daughter used that escape route on herself? 

I purchase my bag of unnecessary goods, and wait for my daughter to come back, with the company of the SA, taking her role as carer very seriously, unlike some who I won't mention! 

We head towards the lift, the sudden urge to need the toilet ascends on me like the fast waters of a vicious river waiting to burst its banks. 

"Oh", I say, looking at my appointed carer (daughter), "I really need a wee", my 3 year old granddaughter (GD)looking at me when venom,  thinking I have just taken her glory of 'panicking' the carer regarding the toilet 'right now' moment; we share a carer on days out, she is still adjusting. 

"FFS", I hear, albeit mumbled, eye-contact and eye-rolling simultaneously between the GD and I, with a cheeky smirk erupting from the 3 yr old. 

I am thinking please do not ask me if I can 'hold it'. I am not 3, I am 55, I know my limitations. 

And as if by a small miracle, and a moment of the parting of the Read Seas, another SA appears. 

"Excuse me, I really need your help", (no, not with my daughter whose face is still in the 'why me' mode). I pull out my Access Card like I work for MI5, which states 'I need to use your toilet please, for medical reasons' etc, so you don't need to explain yourself on the shop floor, in front of numerous people also waiting for a lift. Well who knew, you do need to explain yourself, and your card, by this time I have used up 2 minutes of valuable time - if you know - you know! 

The SA was honest, and responded that she wasn't sure of I was allowed to use the staff toilets as she was new to role. , and they were 'staff only', so we proceeded to go on a 'manager hunt', quite a similar experience as going on a 'bear hunt book, with the replacement of grass to bags! 

We locate the manager, who surprisingly states that 'yes, I can use staff toilets', and guided the SA to take me to them, and stay with me, location, not this floor!

We are now into 6 minutes, the banks of the river are on the verge of bursting, people are running out of the shop, red alert over the tannoy, I am river dancing through the underwear dept, thinking 'should I grab some knickers' like a life jacket in a storm. 

Staff door opened, I run like my life dependent on it, all I can say is I am glad my hands were in good form that day, and I had elastic waisted trousers on! 

I made it, I bloody made it. The river redirected. Red alert removed. 

I thanked the SA, she also was a very attentive carer, she stayed with me right outside my toilet door, possibly wondering if she was ever going to get back to tidying up jeans?

I exited the 'staff toilets' like a gold medallist, well, that's a complete exaggeration, I looked like I'd done 30k marathon,  that eventually finished, receiving the well done certificate. 

Note to self: 

Give in Donna, you're unwell, medicated up to the sky, and your body is struggling to cope, and yes this cancer has taken its toll. 

Next stop - Boots

Yes, the Tena era has begun, opening up a whole new world of interaction between myself and the grandchildren, "why are you in nappies, and I am able to use a toilet" and from the other pair of judging eyes 'I hope there not my Paw Patrol nappies'.

 

Low flying objects . 

So I am now a pro at CT and MR scans - comfy clothes and no metal, so don't wear jewellery, or wired bras!

However, I wasn't always that informed, or prepared. 

I had worked through the trauma of wearing nude coloured, extra comfort sized underwear to my first ever dermatology appointment.

I now always try to at least wear something bright, or aesthetically soft on the eye, just in case the medical professional on the day has a side line in mature models. 

So, CT scan day, jewellery off..."any metal?" the nurse asked, " ooohh no, " I respond, with an air of certainty. 

"Bra?" the nurse looking hopeful, as they were already running late. 

"Oh fk!" my bra was wired, albeit pretty, it had to come off. 

I took my bra off, and laid it by my coat, a somewhat sarcastic voice asked me "any other metal items" , "no, my knickers are past the chastity stage of life, but thanks for checking!". 

So CT scan completed, and if you've had one before, you all know about the 'feels like you're having a warm-wee moment', which to be fair, no matter how many times they tell you, the panic of age reality 'pee-passing' is real, so there is always the surprise bonus of "oh I haven't!". 

"That's it, all finished, you can get on with your day now", translated to "hurry up, we are running late" by the staff.

Now this is where audience interaction takes place - how do you lift yourself up off a bed, whilst trying to scoop up two boobs that are resting on the floor, in different locations of the room?

"You can go now madam" I hear again, 'I am bloody trying love! I think in panic. 

"Do you need a hand?" they ask also in desperation to get you out before the sun sets.

I need two, I am thinking to myself, one for each boob, whilst I try to hoist myself up off this bed!

The kind nurse could see I was struggling, and decided to help me, no crossed words, she just knew that I would take the boobs, whilst she took the back. 

Breaking the moment of awkwardness, she said "you did really well today, the scan machine doesn't seem to bother you, many don't like it", 'many don't have the distraction of wondering if their nipples are gong to get trapped in the machine! I thought

As you can imagine the NHS rush had kicked in, they were clearly running late, so she proceeded to help me out of the scanner room, by carrying my belongings for me, all of my belongings, to include my bra and glasses! She left me to carry my boobs, scooped up under my t-shirt to prevent an earthquake, or worse. 

I am trying to follow the blurred vision of her uniform, and my bra being swung around the waiting room like a sea fishing net being hauled, people scrambling for their lives. 

" I can take it from here" I announce as quietly as possible to try an get her attention, without disturbing the school of fish. No response, the sea trawler steadily making its way through the waves of embarrassment. " I CAN TAKE IT FROM HERE...THANKS!". 

I arrived at the changing room, and took a deep breath, a very deep breath. 

Sat for a moment.

Then the realisation that I had to now go out and face the sea of  fish, bobbing around waiting to see if they were going to be hauled in during round 2. 

I threw back the curtain of the changing room, and proceeded to strut out of the area, like a top model. 

All eyes on me. 

It wasn't the modelling career I wanted - but it was close enough for now, in fact, I think I will change direction- maybe sports bra mode.