Pump up the volume...

Today is 21 days post mastectomy.

But this post is not about today. It's a delayed post about day 16 post-m.

Day 16 was the day of my first expansion/inflation session.

I probably won't explain it very well but see...during my operation, they also started the reconstruction process. So as well as removing my breast tissue, the docs also inserted the implant with a port attached to it. Now imagine the implant like a deflated balloon, that will slowly be filled with saline over a period via the port. So on my chest, under my scars, I have the implant and just below I have a little bump that I was informed post-op is the port.

Now when all this was explained to me by the breast nurse weeks before the operation, I for some inexplicable reason assumed the port would be outside my skin, so imagine my shock to wake up and see the bump is under my skin...my skin is covering it...over it...the port cannot be seen...hmmmm...how the heck are they going to access that crap??

That was the question that was running through my mind for the 16 days till the first fill me up session. I mean the thing is under my skin, so my rational mind tells me, to access it one must first penetrate my skin. And as a thirtysomething year old sickler with a number of surgeries under my belt, I like to think I know a thing or two about medical personnel penetrating my skin to get at what's underneath...veins, arteries, tumours etc. All methods hurt.

So looking at the port hiding bump it seems that what they are implying will probably involve a needle that will first need to go through my skin.

For the love of....

Does the pain and abuse never end???

So I wake up anxious and apprehensive on day 16 and make my way to the Macmillan Cancer Centre UCLH with a brief stop over for Cuz S. I needs her support for this next stage.

After an hours wait due to miscommunication between the desk lady and I, Cuz S and I proceed into the examination room.

As usual Nurse S is her friendly chatty reassuring self but I's still anxious so I ask...okay okay demand....that Cuz S brings her hand for hand holding duty.

Nurse S laughs and promises that it won't hurt, yeah like I've never heard that one before *rolling eyes emoticon*, and she proceeds to locate the bump and insert the needle...

It.does.not.hurt. AT ALL

Well....

No pain....

Not quite sure how to deal with that, all that build up and no pain....but I thinks I can work with this, especially as my next session is booked for the next week.

I go home all happy and relieved....then that evening....BAM pain pain pain.

Damn the breast hurts....like a bitch...for days.

Ah well....they never said it'd be easy. My journey continues. 2 days till next session.

Drain drain go away

Hands down the second worst part of my m journey has been the drain.

A drain is a tube placed in the surgery site and attached at the other end to a clear bottle. Its purpose is to prevent the build up of fluid in the area so it drains the fluids out. If you feel the need please do google redivac drain for more information.

So I woke up post-op with 2 thin tubes coming out of the side of my chest. Luckily for me one was taken out 3 days post-op. Unluckily for me that same day I was discharged with the second drain.

Now imagine having to lug this plastic bottle around with you everywhere. Not being able to just fling yourself down on a bed, couch, or chair as you wished....yeah I know flinging post surgery would hurt like a bitch but at least give me the damn option! But nope not with a long tube and its trusty bottle attachment. One has to be careful how one moves so as not to get the tube caught in anything because trust me tugging it hurts....like a bitch.

Side digression - why like a bitch? Does a bitch hurt? Bitch as in female dog? Or bitch as in female? And as a female should I really be using the term bitch?.......I am not near recovered enough for this!!!

Anyhooo drain. Did I mention the plastic bottle, the clear plastic bottle? So you can see and measure the fluids. Sweet Lord Jesus have mercy! Who wants to see that crap? Not me! For sure.

It's bad enough I have had a flippin mastectomy and I am going around with one effin breast but now I need to watch fluids draining out of me. Seriously? I can't even look at myself when I go to the loo.

I am that girl. That ocd girl who finds everything disgusting and can't eat certain foods because of their shape or colour. And now I have to watch fluids coming out of me and measure it every day.

Come on!

But I did for 9 bloody awful days. (Note that is day 9 at home not day 9 post mastectomy. It was actually day 11 post mastectomy. So I had that crap in me for 11 effin days)

By day 9 I was quite simply at the end of my rope, not just was it disgusting to look at, the drain site had started to hurt....like a bitch.

I swear if they hadn't taken that shit out, I would have yanked it out myself....truetalk!

But it's out and I celebrated yesterday by flinging myself...very carefully....onto the bed. And by turning....again very carefully...at will whilst sleeping.

Where's my Brad Pitt?

It is 10 days post mastectomy.

This has got to be hands down the hardest thing I have ever been through and medically I have been through some tough crap. But this mastectomy is trying its damnedest to beat me down physically and emotionally. Luckily for me though I've got a pretty good support system shoring me and holding me up. My therapist (yes one of those) compared my support system to the scaffolding that holds a building up during repairs. I thought that was pretty apt.

It's weird though, my logical mind grasps the need for the mastectomy and that it is just a procedure, not the end of the world. Furthermore, I am having reconstruction so that solves the visual problem. So why am I flippin yo-yoing emotionally? One minute I'm cool, the next I'm bawling my eyes out.

I do not get it. But my philosophy has always been one breath at a time so that's how I will approach this journey. In the meantime I figure now that the pain has dialled down it's time to get my thoughts and experiences down. So tomorrow I will begin posting My M Journey.

Tales from bed 5

A week ago today, I was bawling my eyes out in hospital, whilst getting fluids intravenously in preparation for yet another surgery to take place the following day.

Bawling my eyes out because I was -

a) tired from lack of sleep due to anxiety and worry

b) tired emotionally

c) put on the geriatric ward

Lets talk about point c. 

Seriously, I was put on a ward full of sick helpless elderly people, some of them, as bad as it sounds, seemingly on their way to the next life. This is not the place you put someone who is about to have her 7th surgery in 5 years!

Unfortunately, I was a victim of the changes in the NHS, the cutbacks....hey thanks for that coalition government! 

But back to Wednesday 17th April 2013. 

I checked into hospital at 2.30pm, into surgical reception, where I was examined by a very lovely doctor from my surgical team. By 3pm, the cannula was in - first try, praise Jesus! 

4pm....still in surgical reception waiting on a bed... 

At 5pm, the doctor decides enough waiting, he's going to start the fluids in surgical reception....I mean that was the whole point of checking into hospital a day early, so I could get fluids and ensure I was hydrated for the surgery. One has to always take into account the sickle cell factor and make sure everything possible is done so I am at the healthiest I can be on that operating table - blood exchange transfusion had been done successfully, and thankfully painlessly, the previous Friday (again cannula's inserted in both arms on the first try - I know after the drama with the last exchange transfusions in February and October last year, my Mama was praying with her every being that they find veins and they did, first bleemin try!)

But I digress - so it's 5pm and I am sitting in surgical reception hooked up to my bag of fluids with my assorted 'vital for hospital stay' belongings scattered all around me - just in case you were wondering, these consist of kindle, ipod, Reader's Digest, Take a Breaks puzzles, ribena, M&S flapjack cookies, bottle of water, blackberry and nokia phones. My over-night bag had been taken away and kept by a nice nurse as it was too cumbersome to log around with a bag of fluids attached to and thereby incapacitating one arm.

Anyway, finally at 5.30pm I am informed they've got a bed for me. Yay me...until I get to the 7th floor, enter the ward and as we are proceeding to bed 5, realise that all the beds we are passing are full of old, really OLD patients. 

Surely a mistakes been made. 

But alas no, it's the only bed available in the entire hospital I am told. I am also told reassuringly that it is only for one night, after the surgery I will be taken to a surgical ward.

I would like to say I took this reassurance in a good way and settled down like the adult that I am, after all it's only for one night. Yeah right! Go back to the first paragraph above and read the part about bawling my eyes out.

I am not ashamed to say I cried like it was the end...cried so much I'm sure Mama, Aunty J, Cuz S, and Dr Lil were sure it was the end!

Not like they were there with me or anything....did I forget to mention that I had the bright idea of doing this on my own, checking into hospital, going into surgery and checking out...all on my own! As such I had informed all supportive parties that they were banned from the hospital.

Well I realised the stupidity of that decision when I was sitting on bed 5 bawling on the phone to the above-mentioned peeps whilst staring across at a patient who I wasn't quite sure was going to make it through the night.

But short of ripping the cannula out of my arm, grabbing my stuff and storming out, I was stuck. So I drew my curtains, isolated myself as best as I could and settled in.

The upside of the geriatric ward is - it's the geriatric ward, patients are sick and helpless and mostly immobile, so I had the bathroom to myself. The downside, immobile does not mean bodily functions stop...and unfortunately this means, bathroom stuff happens at the bedside - sweet lord the smells I dealt with....there are no words...no words!

But I am a flippin trooper, if I do say so myself. I have been reared to deal with the crap life throws, one breath at a time - with a smile on my friggin face (after bawling of course, one has to bawl!)

So I hang in there all night...very uncomfortable, highly irritable and just generally fed up with everything...but I deal. And I try to get my mind, soul and entire being into a good place because I had a surgery to get through.

And I'm happy to report I did. It helped of course that Mama and Aunty J, ignoring the ban, showed up first thing in the morning to help get my spirits up.

But I got through my stay in bed 5...and through the surgery...and through my 5 hour stay in the recovery room post-surgery...but that's a story for another time. 

Like I said...trooper!

O Fortuna, velut luna, statu variabilis...

Mo ti gba kamu that, there but for the grace of God...

That's what I learnt from 2012 and the motto I intend to take into 2013.

For the non-yoruba's 'mo ti gba kamu' means either the simple 'I have accepted' or the deeper 'I have accepted my fate without arguing or fighting against it'.

So on this last day of 2012, I raise my hands up to the heavens and proclaim to the world that, from now onwards I shall accept without hesitation the whims and fancies of fate.

How do I reconcile that with my belief expressed earlier in the year that we humans to an extent have free will, as opposed to being at the mercy of destiny and operating under the illusion of free will?

I don't think I need to. Hear me out -

Everyday we face situations where choices have to be made and decisions have to be taken; we have been equipped with the ability to make a choice, the consequences of which we must live with....that's free will.

But...

Sometimes we face situations where we lack control, where the choice and the decision are out of our hands but despite that, we will still have to live with whatever consequence may arise from that situation.

Or it may be that despite using our free will to make a decision, and despite making the only viable decision any reasonable person faced with the same set of circumstances may have made, and despite rightly considering every possible foreseeable consequence of that decision; the gods allow the happening of some other conclusion, neither foreseen nor contemplated....and we will have no choice but to live with it.

And that is the point where we have to 'gba kamu'. Accept the hands of fate and deal.

I have realised that it is usually with this latter situation, where we lack control, that those of us who believe, begin to seek the mercies of God. We cry, we plead, we barter, we beg. We hold on tightly to our faith and our belief that God is love. He loves us and will let all things work together for good to them that love God (Romans 8:28). But see here's the thing - who knows the workings of the mind of God. Who knows the reasonings behind his acts. Why do we presume that we can control him or that what we want for us is what he wants.

We are at his whims, it is by his grace, and life would be so much easier if we simply lived it making the best decisions within our ability, and accepting whatever consequence may arise as a result of the decisions made...and where we lack control to even make a decision, again simply accept and try to deal with whatever situation we may find ourselves in.

Simply gba kamu that, there but for the grace of God or the whims of the fates.


Title is from Carl Orff's Carmina Burana and translated means O Fortune, like the moon, ever changing. 

Happy New Year in advance to everybody, may the hands of fate be kind to us in 2013, may the grace of God be with us and be favourable to us through the year. 

God bless xx

...

My faith is shaken
The trust is broken

You keep your promises
Your word is settled
This I believed

You hear our cries
Our pleas for help
This I believed

And so we cried
We pleaded
We thanked
And I believed

For you keep your promises
Your word is settled
Or so I believed

But now it's done
It's over
He's gone
And so I fear
Is my belief?

Take me to a place I don't care, this is me and my liquor store blues...

The birthday is done, the party is over, the euphoria has settled.

It's crazy I've only been in Gidi for a week but it feels like I've been here longer and right now I've got my mind on Welwyn and Welwyn on my mind.

Don't get me wrong I have no problem with Gidi beyond the problems every sane person has living in an insane environment. I have loved being among family and friends and will miss them badly when I leave BUT here's the thing, I hate the person I am during this trip. It's like being here has highlighted all the things I detest about myself. I am constantly on edge and irritated with almost everyone. I am uncomfortable and completely uneasy with almost everything and everyone. And it's evident in my thoughts, my words, and my deeds. I hate that I am being a spoilt whiny hard to please complainant. It's not a good look and I need to shake it off now!

I think it's the lack of control and independence I experience in Gidi. I've had a taste of independence and I've discovered I love it. I like being hidden away in Welwyn, in control of my own environment, with the ability to do what I want, when I want, how I want. Also selfishly I like that I don't have to care or give a damn or make allowances for others because family relationship or tradition dictates I must.

I really hate who I am being right now but I am a great believer (when it suits me) of mind over matter so for my remaining Gidi time I am going to shake it off and remember, or at the very least pretend, that I am an adult and behave accordingly!!!


Title is Bruno Mar's Liquor Store Blues simply because....well the line is self-explanatory isn't it :)