Mwape's Release

Symptomatic: My Sickle Cell Trait Journey

What Now?

Finding my New Normal following the year from hell!

What Now?

So I've just had my most recent surgery and not gone into a major crisis, as my consultant was amazing and put in safeguarding protocols, to which I'm forever grateful for.  Maybe it was because he recalled me from those two years ago, maybe it was because I'm a fellow African woman and I was afraid of going back for this minor operation for the awful complications I'd been having following the worst crisis of my life.  Whatever the reason, he was amazing and I felt safe and well looked after on the HDU - intensive care and beyond on the gynae oncology ward, where I was also assisted well to walk to and from the bathroom and shower, because I was not able to walk safely myself and my pain was not belittled, nor medication which was adequate denied. This was a first, considering on the Neurology wards in December, I was not provided with medication beyond paracetamol, codeine and ibuprofen! Those DO NOT even minutely touch the pain of sickle cell.  Yet I was left unethically to cope and reel in pain myself.  

 

Literally just opened my eyes following my minor operation 30th April 2021 around 11am

Moved to the clinical High Dependence Unit where I was given intensive care, oxygen and drip hydration and my obs taken every two hours

So I've published my first ever book!

So I've published my first ever book! I still don't feel quite accomplished. Why? Because there's still so much progress to be made. We have such a long, long way to go. Why? Because sickle cell anaemia is still experiencing so much heatbreak, negligence and injustice medically.

It faces so much by way of medical gaslighting and no one seems to raise an eyebrow, except the masses of minority ethnic groups whom it predominantly affects and their families who are left behind to suffer the dire consequences of the worst clinical outcomes! I must note whilst in hospital, many doctors and consultants saw my book out on the table and yes, I became somewhat of a medical mystery.

The good thing was that they came and talked to me, as a real patient, as if I was telling the truth?  My shock, after years of being disbelieved or made out to feel like a drug seeker when something was wrong, heightened my emotions big time! I can't describe totally what I felt, but it felt good to be finally heard for the first time! 

On a drip for over 48 hours and on my first day out of surgery, I drank 8 x 750mls of water as you can see I needed two at a time and just was so thirsty, despite my drip! My book and diary laid out on the table next to me for all who's care I was under to see!

3rd May 2021 - 17:30 - Discharge day following surgery and being cared for so well during my recovery on the oncology ward - with adequate and appropriate medication and an actual care plan and numbers of who to call! This was a first for me! I am so grateful to this ward and all the amazing staff who took such great care of me! This is what clinical care should look like all the time!

My thoughts on this are, is it because many of us choose to stay silent for fear and the agony and mental and emotional trauma it causes us to speak out and be told 'it's in your head'? Let me put it out there in plain English, masses of black and brown people are dying and being fobbed off by GP's and medics who ignore that sickle cell anaemia pain is agonising and debilitating.

This proves even worse for us with the trait of this disease, because we are deemed as I've said before 'healthy carriers' and medically insignificant! That leaves people like me with very little hope!

However, I am at peace and content, that my book can provide those with the trait like myself with a black and white evidence log of someone's journey with the trait, no other health conditions except for the 'trait' and with years of photo logs and journaling my pains and experiences have proved to be a great record of just what sickle cell trait can cause, because of that ignorance!

If it can aid in someone else recieveing the care that they so deserve and NEED, then so be it! If it can even go a milestone further and begin to change things for us with sickled haemoglobinopathies, because there are more of us with some type of sickled haemoglobin whether full blown or carriers like me, then that's a reason to celebrate! I won't stop advocating now, until that day we unite as one comes!

To Buy A Copy of My Book Click here!