Part Three.

For this opener I just want to acknowledge a special someone, someone that throughout the course of the last 5 months has navigated me through the darkest foggiest journey. Someone who is an outstanding nurse & best friend to my mother.

Natalie, from the minute mam left Velindre you ensured that I was equipped enough to deal with any matter in hand, you had a firm care plan in place that benefitted mam & her needs & your knowledge & experience was invaluable to us. On top of that your love & care for both us as a family & mam herself is something I will be eternally grateful for. You held a pinnacle role so strongly & I admire you for the time & effort you lent us and still lend now. Thank you.

Now that base has been covered I’m not going to bore you or be the person that blogs about statistics, however for the purpose of understanding I have been led to believe that only a small minority of people experience mania post cancer treatment.

I must stress this was medication induced mania as a result of steroid treatment which my poor mam experienced not only once but twice in her lifetime & by the bucket load. The first time I was too young to be exposed to it.. this time we lived & breathed it with her.

During this two week phase of mams illness I can only describe her behaviour as somewhat child like.. how both my sister & I suddenly took on the mother role & mam became the child. The sleepless nights, disobedience & the will to do what she wanted & not what we had told her too, because she knew better right?

The prime example of this was Mam now having to walk aided with a walking stick. Her ability to walk a distance had shortened & a wheelchair was introduced, along with a shower seat & various medication that had to be taken religiously everyday.

An adjustment we all had to come to terms with rapidly, I mean just over a week ago I left my mother able bodied to walk up & down the stairs, she was able to get to the toilet herself , shower herself & now that had all changed. OVERNIGHT. We were now no longer able to leave her alone.

No body prepared me for how quickly that change came, how leaving the house now meant getting both myself & mam washed dressed & also a bag packed with everything mam would need for that day. Medication & wheelchair included, this was alien. How did I now have a 57 year old baby that I never gave birth too?!

For weeks myself & Francesca had sleepless nights, mam was mostly unable to settle because she was discharged with the wrong medication.. but partly because the mania had her mind doing 20 to the dozen.

She never really got tired & there was always a worry that there would be a crash in mood weeks down the line.. We braced ourselves for it but the crash happened hard & the impact hit harder.

Daily we endured different challenges but one of the most significant was mams ability to change her moods quickly at this time .. never intentionally wanting to hurt anyone, But you’d never know which mood you’d get.

One minute there was laughter & uncontrollable swearing, with her walking stick being pointed or bashed at you.

We would always chuckle at it, but she could’ve easily done some serious damage with that if you’d pissed her off 🤣.

I wish now I had written down every bizarre & irrational statement mam made during her manic phase, because it would’ve given us all something to laugh at now.

However one particular favourite that Chesca & I still laugh at is ;“Stef, have a fiver off me by there to buy some fags off Facebook”. If your reading this & you knew my mam .. You know she would NEVER condone me buying cigarrettes .. I mean EVER🤣.

It must be said that although most of the time we humoured her behaviour, there were often spells of sadness & anger.

Tears & fears, mostly as a result of frustration at her situation of not being as able as she was before but sometimes because you’d not done the 7/8 things she had asked you to do quick enough & there was one thing left you’d not yet gotten round too. That, that was tough.

I often questioned my ability, thinking am I doing enough , or am I even doing this right?

But as Ive said before, there is no handbook to know what to do or what to say when a loved one has cancer, you really are just winging it & Mostly you are left to your own devices, something I learned very quickly. Yes, even down to the medication that was all left to me. To sort & administer.

Some how I became a pharmacist , a primary carer & a personal assistant all whilst juggling a new job & some kind of a social life.

Speaking from my personal experience, after mams initial discharge I remember one home visit from the Mcmillian Team.

This day I have a vivid memory of, it was September & the weather was amazing we spent the day in the Garden. We had numerous visitors that day all who all knew mams diagnosis yet still helped us smile & laugh with mam at her nonsense.

We ate cake that my auntie had made & soaked in some rays from the Indian summer impatiently awaiting the afternoon visit.

Although I’d been prepped for this visit by Natalie, I really don’t think the reality of it hit me, maybe it still hasn’t I’m not sure.

Being the elder sibling I think this was the moment I took on a responsibility that would become increasingly difficult, a responsibility I am proud to say I gave my all too.

I often think about a world where no-one ever again has to sit with a McMillan nurse & their loved one to map out a palliative plan of care for their parent, however I know that’s impossible.

That day I sat there & decided with my Mother how she did not want to be resuscitated, & how she would like to spend the last few days of her life when the inevitable happened.

From the get go mam always knew she wanted to be cared for at home, I really had no idea what that would entail but I grew to find out.

All I know now is that nothing in life should ever come to that, but unfortunately even in 2021/2022 that’s the situation I myself & others face or have faced every single day & will continue to do until there is a cure for cancer, something again I’m very skeptical about.

The minute the nurse left the house, that’s when the clock of borrowed time started ticking for me. It rang loud with every second the hands moved in my head & it still rings now in fear.

At times I get angry, I get so upset, I just want to scream swear words at the top of my voice until I can’t swear no more but what does that solve? It that solves nothing. Grief hits me in waves when I least I expect it too & the physical pains are what hurt me the most. And guess what? I feel guilty for crying.

I feel resent, I feel bitter that some people hardly catch a cold yet others lives are riddled with ill health & how is that fair?!

Then I become exhausted by it, but how selfish am I?!

How dare I feel that way when the woman that gave me life was having & has now had hers taken away from her bit by bit every day?!

& why? Because unfortunately the service she worked for, for almost 40 years failed her.

If it’s one thing I know it’s that a person knows their own body & my mother knew hers, yet got denied so many times when asking for help. I hope that anyone who reads this & has doubts with their care or their own health pushes for answers, pushes until they know for certain they are safe & well.

Every person deserves to live a full & happy life & it’s a medical professionals duty of care to provide you or your loved one with the ability to do so.

It makes me sad that we had to realise we were loosing our precious mam to make opportunities & light out of the smallest things because we knew we didn’t have much time left. The realisation that one day Mam got to walk Max for the last time & never knew it would be the last, the last time she ever went to Tesco alone, drove her car, bought herself an ice cream or even made herself a cup of tea, the stuff we all take for granted.

However I am not one for negativity, during these horrendous weeks & months we somehow managed to smile.

We made everyday an occasion & made beautiful memories amongst the madness of life.

My sister made sure mam looked impeccable everyday, she did her hair & her makeup & made sure that mam always had on something smart and trendy.

Mams wardrobe is still full of clothes with tags on them, stuff she was always ”keeping for best”. We ensured we made a dent in wearing some of these & everyone always commented on how fashionable she was.

We vowed to take pictures everyday & spend the next few weeks doing things that mam really wanted to do. Stuff I am so so grateful for now.

The days out we had & the pictures we took do not make me sad, & I don’t really remember the negatives in them, but I do remember the first time I pushed my mam in her wheelchair through a crowd of people I knew at the rugby club one Saturday day.

My heart just sank.

Although that day holds fond memories for us as a family & friends, that day is somewhat clouded for me.

Mams reason behind the visit to the club was because her god son is now running it. Her god son Jake, one of my best friends , infact I would say my brother .. who has stepped up for me during my toughest time, she was just delighted to see him at work.

She walked into the club & said “Wow, this is it, this is where I want it”.

She meant this was where she wanted her wake after her funeral.. she gave him strict instructions that day that Max was to attend the wake & he was to have a doggy station for him. You best believe he kept his promise & my god did he do it well.

This day was our first outing of many, outings I shared proudly on my Instagram & am so greatful that mams friends & family went above & beyond for us at this time. It enabled us to create the special memories we now have in our hearts and minds.

Mam loved it, she loved the fuss & we loved it for her.. but I’d be lying if I said it wasn’t tough but If I could’ve demonstrated even half the beauty, the strength or the resilience my mam had during these days I would be so proud of myself..

People say nurses make the toughest of patients, but my mam was tough to the core & she proved that to us for months afterwards. I’m in awe of how she .. well we handled that time of our lives.

I’d go as far as saying I think we most definitely influenced people to make the days count instead of counting the days..

because that’s exactly what we did for the months that followed, until mams illness no longer allowed her to leave home.