The Stool of Power

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It has been found again despite my attempt at hiding it. Note sharp knife and ceramic hob within easy reach. Someone please remind me how long this terrible twos business lasts?!

This morning – I want the red bowl. No orange. No red. No orange. *Screams*

Banish this Stool of Power/Mischief/Danger forever.

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We weren’t expecting you, but you are here now. Cystic Fibrosis – The Diagnosis

In medical school, the cystic fibrosis lecture was memorable. The lecturer, I do wish I could remember his name because I want to thank you for the hope he instilled, was passionate. He conveyed his excitement about the new drugs in development for CF, raved about the possibilities of gene therapy and said ‘there will be a cure one day’. It was like a performance, an uplifting speech, much of which went over my head as he talked about delta F 508, CFTR and so on. Interesting, I thought, but that will never apply to me as we don’t have the CF gene in our family. For sure we don’t; I’d have bet £1 million that we didn’t. Especially as I’m half Ghanaian. No way. That’s the thing, you imagine that these things always happen to other people. That’s what my doctor husband thought too when he sat through the same lecture one year earlier.

Our daughter’s life had a brief 3 week period of no known CF. We received cards and gifts, fell in love with her and celebrated her welcome into our life. She will be my last baby and she took quite a journey to get here. We were thrilled to meet her.

Here she is!

Here she is!

It’s always on the power of hindsight you look back and see hints of things to come. The newborn heel prick was memorable as she was reluctant to give her blood. The midwife came another day to try again. I nearly said ‘don’t bother’ as those things won’t apply to her. The test took longer than usual to come back. Odd I thought, I think they are repeating it. Still, I thought nothing of it. Some three weeks later while feeding in the middle of the night I thought, ‘it’s still not back I better just give a call’.

Didn’t need to because at 9am one Tuesday morning a worried sounding health visitor called to say we needed to go to the children’s hospital at 2pm that day. She sounded like she didn’t want me to ask her any questions. Panic ensued and I Googled the name of the person we were to see. Palpitations set in as I saw that she was the CF specialist nurse. My husband tried to reassure me saying it was probably nothing and that the blood tests were going to be repeated.

Now, I often tell patients to use the Internet with caution as there is a lot of misinformation out there. Googling positive CF newborn screening I found such misinformation. Confident that this was a big mistake and that the test would be repeated we went down, I nearly told my husband not to come. As a doctor, I had no idea that the heelprick test could be diagnostic. Merely a screening tool for other tests I believed. There she was a lovely healthy baby with nothing wrong with her.

As we arrived at the hospital I knew something wasn’t right. We were ushered into a room quickly, taken out of the waiting room. I felt this to be a bad news room. When the specialist nurse and consultant walked in carrying and large folder with our baby’s name on I thought, this isn’t good. This isn’t good at all. Why was the consultant there, what did he want?

They began by asking how the pregnancy went and how she was doing. “Fine, OK, she was just breech that’s all,” I said. From then on he explained how the test had shown the 99.5th percentile for the enzyme produced in CF patients. The blood sample had already been sent all over to labs here and there. Long story short, two genes were found. “That means that she has a positive diagnosis of cystic fibrosis,” he said.

Stunned.

Terrified.

Devastated.

Shocked.

I looked down at my baby. It was like I had been told she was dying. That’s what it felt like, looking back on it now. I was shaking so badly I thought I would drop her. My dear 3 week old baby, what life does she has ahead of her I thought. Tears ran down my face as I looked at hers, so innocent and so new. How was this tiny baby going to live her life like this I grieved. “Is there any chance that its a mistake?” I asked. I knew it wasn’t but just had to be sure. I was simply unprepared, not that you could be, for the diagnosis. I would pull myself together for a few minutes then burst into tears again. My two year old tore road the waiting room as if nothing had happened. We asked questions, we absorbed answers, though probably only a fraction of what was said. It seemed completely surreal. This couldn’t possibly be my child. My husband looked pale, in shock and spoke quietly. He felt the need to be strong, matter-of-fact, optimistic to support my postpartum collapse.

I felt that her future had been re-written. I felt that she was facing an unknown world. I wondered if we were up for the job for looking after her. I remembered patients I had cared for on a respiratory ward and I remembered the battles these patients had faced, the antibiotics, their life in hospital, their lines, their life. I remembered the lady I helped prepare the papers for her lung transplant. All of this flashed before me. In a moment, I imagined quitting my job, my child being ill, my family and a trillion other worries all at once. Our family’s future was also re-written. It was too much to take in.

This is where the consultant said, “you must not change any of your hopes and dreams for her or for you all.” “You must live a normal life.” Lots more was said about her going to university, school and travelling the world. I realised by the end of the two hours we spent there that we did need to carry on as normal. She needed us to be strong for her, to be her rocks of support, her advocates and love her unconditionally.

Coming to terms with the diagnosis and quest for information I found it hard as words like, life threatening, fatal, lung transplant and so on stood out. I chose not to read information that told me her life expectancy is 41. I know now that those diagnosed through screening can do very well because we catch it early.  We are now around 3 months into prophylactic antibiotics, Creon, daily physiotherapy and the amazing multi-disciplinary care team support we have for her. This is where I truly understand and appreciate how each individual contributes synergistically to brilliant care. I shall not go into details as every patient has their own care plan and experience of this journey. What I will say is that now, more than ever, I know we must be grateful for the NHS and the service it provides.

Reactions from family and friends were unpredictable. That was very hard. All I can say is call people, communicate even if you don’t know what to say. We experienced a sad sense of abandonment which will stay with us forever. If you don’t know what to say, say just that “I don’t know what to say”. Cards and gifts stopped and her birth stopped being celebrated. Some even said “I bought a present for her but I feel that I shouldn’t send it now”. Please do. It has taught me that no matter what every child’s life must be celebrated and welcomed. Each child has taken a difficult journey to get here. That said, support has been great. It’s brought many family members closer together. Our family unit of six seems stronger than ever. I’m extremely grateful for my rekindled relationship with my youngest brother, who has been outstanding. Thank you to him and to you all.

If you would like to know more about what cystic fibrosis is please look at the CF Trust website. If you have a few spare pennies or pounds (not that many of us do these days) please consider a donation to the charity. In America? Try the Cystic Fibrosis Foundation.

I am hoping that in her lifetime we shall find a cure. I believe her future, though uncertain, looks bright. But there’s much to be done.

My daughter and I

My daughter and I

Checklists and Breastpads – That Doctor Business…

The deciding factor on becoming a doctor was about 15 minutes after an epidural during the birth of my first daughter. I was in awe of the anaesthetist, I could not believe that I went from the worst pain of my life to no pain at all. This man with his tray of marvels and skilled hands was a magician in my eyes. That was it. I MUST do that job. Though then it was the job of a physician not necessarily that of an anaesthetist.

Fast forward 14 years and I’ve been privileged to do two anaesthetic and intensive care FY1 jobs. Love it; love being in the anaesthetic room, love talking to patients before an anaesthetic, spending time with patients and loved ones in ICU. It’s a perfect blend of patient care, pharmacology, physiology, practical skills and technology.

The world of medicine and motherhood collided most embarrassingly one day when helping an anaesthetist in theatre. The surgery was over and the final checklist of sutures, swabs and so on was being applied. I do love a good checklist – so important in patient safety and improving the delivery of care. The theatre was in full swing. I glanced to the floor near the surgeon and noticed a small white circular pad on the floor. I was about to call out – you’ve missed that swab on the floor when I noticed to my horror that it was MY BREASTPAD. It had made it’s way quite happily out of my bra, over the top of my surgical scrubs and onto the floor. I cannot imagine how I would of explained my answer when someone picked it up and said “What’s this? This hasn’t been accounted for.” The anaesthetist must have observed this and felt unable to say anything as we chatted about propofol and ASA grades. Mortified I swept in and stuffed it into my pocket. Needless to say, if you happen to notice me take a quick peek down my front or gently pat my breasts discreetly (not in front of patients, of course) you know that I am checking for errant breast pads.

I'm sure this doesn't appear on a surgical checklist

I’m sure this doesn’t appear on a surgical checklist

Oddly, the journey has come full circle and I am now hoping for a career in anaesthetics. Unfortunately for me, it’s competitive, very competitive in this area. Add into that the need to stay local I have to drag myself to the top of a very large heap of applicants. We shall see. I’ve yet to apply. I shall apply this year, if all goes well. I say if all goes well as my daughter’s diagnosis with cystic fibrosis adds some serious perspective to life. She and my other children will always come first. Her consultant told me not to hold anyone’s dreams hers or my own. “You just carry on,” he said. “Life must be as normal as possible”.

Not that a life in medicine is normal. It’s unpredictable, challenging, hard work and ultimately rewarding. There are ups and downs, good times and bad times. Balancing motherhood and medicine has been an on-going battle – not sure I like that word but can’t think of another at this time. My status as older mum of four quite often baffles my senior colleagues. I can’t pretend it’s not awkward as an FY1 on-call with the consultant with whom my daughter is best friends with. Not often awkward for me, but sometimes for others. One consultant openly told me he was freaked that my kids were older than his. Another remarked when I said I wasn’t keen on paediatrics, “don’t you have a maternal bone in your body? Don’t like kids then”. “Yes”, I replied “I’ve got two (at that time) of my own”. Awkward silence ensued. Even the other day I was asked what I wanted to be ‘when I grow up’ by another colleague. I’m 43 in less than two weeks but I agree with you, I’m yet to grow up!

Now, back to what I need to do for my intended career. My checklist includes, audits, presentations, projects, publications, commitment to specialty and much more. Even on maternity leave I’m at courses, completing audit cycles and sorting the next detail to demonstrate my suitability for this career. Now, I’m not stupid, I know I’ve got a challenge ahead of me. I have my back-up plans. So let’s see. I’ve already been told by a retired anaesthetist that I haven’t a hope in hell, I should give up before I’ve even started, my CV will be in no way competitive compared to my younger colleagues. Do you know you’ll be 50 odd before you are a consultant? All in the space of 5 minutes of meeting me and knowing nothing about me. But we mature medics have heard this all before. We wouldn’t be standing in front of you if we’d not thought about this. But as I keep saying I am enjoying my journey rather than focussing on the destination.

Now back to those lists – shopping, ARCP, to-do. I do love a good list.

Coping Mosaic

Getting through the day as a busy mum?! I used the following coping strategies: mugs of yummy tea, moments of beauty in the garden, baked goods including this Malteser Tray Bake and, admiring the beauty of my children and never taking them for granted.

My 14 week old daughter's chubby feet as she is asleep.

My 14 week old daughter’s chubby feet as she is asleep.

Nature's beauty. Flowers in my garden.

Nature’s beauty. Flowers in my garden.

Delicious tray bake, heck I'll even eat for breakfast. Don't tell my kids.

Delicious tray bake, heck I’ll even eat for breakfast. Don’t tell my kids.

Mum's mug of tea. Cannot live without it.

Mum’s mug of tea. Cannot live without it.

Toddlers & Teens: The Twilight Times

Sometimes I look at my children and I think , “Bloody hell, I’m their mother. I’ve no idea what I’m doing.” Truly, each day comes and goes and I hope I’ve just done my best. I hope I’ve given them some happy times, good food, love, hugs and not shouted too much. But parenting brings such new challenges every day. I have to constant re-evaluate myself, adapt and proceed with that unknown outcome of producing sane adult children. I am in envious awe of you parents with grown up, well adjusted adult children. You deserve to sit back and feel smug at your success. I’ve no idea how you got there, but you did.

As a mum of four I’m often asked, “how do you do it?” Honestly, I’ve no idea. My four are in groups of two separated by ten years! That makes quite a difference really. In some ways it makes it easier, but at the moment I am going through the challenges of having both a toddler and teens. My delightful little three month old daughter with cystic fibrosis (another story) easily just fits into the bigger picture. But step into my house between the hours of 4pm and 8pm and you will descend into another world, a twilight zone. That is when you will see my most frazzled. It begins post toddler nap, after which he always has a meltdown, and he is then stuffed into a car to pick up his older sisters from school. He likes to wear his dressing gown and space monkey pyjamas at all times at the moment. They sometimes stick to his chubby little body with jam, sand and whatever else he’s been into that day. If you see me in the bank with such a child, do forgive me and don’t judge, for its easier to take him like that than face another tantrum. Pick your battles I say.

The school run complete we return home for toddler supper that coincides with infant cluster breast feed (between 5 and 7.30pm). This also happens to occur at teen snack time, of which they always ask me “What can I eat?” and evening meal preparation. Really evening meal overlaps with toddler and baby bath and bedtime. I can stick the rice on and run upstairs to bath one, while breastfeeding the other or the baby has to wait screaming until I can get to her. The act of producing a home cooked meal at this time I consider a small miracle. In a word – it’s CHAOS! Chaos hopefully filled with laughter, tears, frustration and lots of love. Please forgive me that if I answer the phone during that time or you ask me a question, I’ve no idea how I will respond, I may be short with you. This is far more challenging to me than many of my days struggling with the demands of being a junior doctor.

Rather apt, trying to balance the see saw of ages.

Rather apt, trying to balance the see saw of ages.

Now it has struck me now that I am facing very similar challenges in parenting a toddler and a teen. I have my lovely 12 year old, she’s almost 13, so for sake of argument let’s call her a teen. And, my oldest is 14, soon to be 15 (read her excellent blog here) has already traversed some difficult stops on the teen journey, but at the moment is on a nice smooth flat section of the teen rollercoaster. My toddler pushes me to the limit, he’s seeking his boundaries. “I WANT BISCUIT. I WANT CHOC-CA-LAT” he has been known to scream at 5.15am when he wants breakfast. “No, darling, we don’t eat biscuits or chocolate for breakfast” is what I try and say. Really, I want to scream “FOR F~@$’s sake WE DON’T EAT THAT FOR BREAKFAST. I AM IN CHARGE HERE, YOU WILL DO AS I SAY!”

Whatever, we parents have been given the tough job of not causing emotional damage and setting the example. Crikey, we must be perfect. But I can tell you what, my kids have unfortunately heard me use some very bad words, shout and scream and throw my own tantrums. Now, never mess with a MUM TANTRUM as they can far out-do any toddler or teen. Now my toddler has found a new object of joy. An object of mischief. It’s his Stool of Power. This red plastic stool has been introduced as my latest parenting challenge. It came with an electronic drum kit, which I have hidden as it has only one volume – extremely loud. (Manufacturers, I’m sure you don’t want your drum kit implicated in some parent-child altercation, so please put a bloody volume control on it.) Now the Stool of Power goes everywhere with him. It has enabled him to reach into drawers containing matches, find sharp knives, pull down books, pick up the kettle using no handles just the bare metal (thankfully it was cold) and other such mischief. I need eyes in the back of my head to see where and what he is using the stool for. Rationalising that touching the ceramic hob after I’ve made a stir fry is going to hurt doesn’t seem to work. I am forever providing safe limits to his testing of boundaries. If you see me in the Emergency Department (where I may well run into my husband as he’s there more than at home at the moment) with a toddler in pyjamas, screaming baby and grumpy teen, know that I did try, honestly I did try.

Now where can I begin with the joys of parenting teens…. My oldest daughter’s recent blog post of the challenges of living with a Belieber will give you some insight. I find myself facing different boundary challenges. What is acceptable speak between mother and child, when to come to the table for supper, how I cannot buy yet another thing and so on and so on. Now, I come from the school of frank parenting. I don’t like the idea of my girls not being equipped with the things I didn’t know. So we have frank chats about:

  1. condoms (and how they aren’t 100% reliable)
  2. sexuality
  3. trimming pubic hairs
  4. waxing hair on the upper lip
  5. how never to get a credit card (if you do make the limit tiny)
  6. how to use a debit card
  7. not to go to there area as that’s where the doggers go (“What are doggers?”. We’ll come back to that one.)
  8. to save for a pension
  9. to save for a deposit on a house
  10. how to make a delicious pastry

I always have my ‘lectures’, hopefully some of it will go in. I just want them to be loved and grow up and be happy. Hopefully, not get a job as a pole dancer or doctor (but I will love you even if you do). But teens.. they really try me to the limits of my patience. It’s not that long ago that I remember the teen years, but believe me I do know that I didn’t know a lot of stuff. So, I SPEAK FROM WISDOM and EXPERIENCE my lovelies. I find the teens so often depicted on TV and the movies so obnoxious, the parent’s so dysfunctional and they seem to talk so rudely to each other. I hope this isn’t what my girls think is normal teenage behaviour. I hate the sexualised music videos, the constant depiction of seeking love and losing your virginity. I find myself asking for things to be turned off and sounding like my own mother! Our latest attempt to blend our family into one functioning unit, complete with happy memories, is to embark upon camping trips. This has met with considerable teen groans. Disdain even, as my embarrassing ‘Mum-Mobile’ arrives to pick them up from school. A seven-seater enormous ‘car’ complete with roof box. I do suggest that they may walk. We must be mad to consider camping with teens, a baby with CF and a toddler. But I’ve got a spread sheet checklist for all eventualities – slightly embarrassing, but organisation is key to everything.

Vehicle of Embarrassment

Vehicle of Embarrassment

Must go as toddler now has a heavy metal object and is swinging it over the head of little baby sleeping peacefully. Oh, she is saved by him trying to put Borat into the DVD player. Which shall I retrieve first? All this and it’s not even 9am. But I’m filled with this feeling that this time is short. My girls are growing older and I can count the family Christmas’s left with them living at home on one hand. My youngest may not even remember living with three other siblings. I’m trying to capture memories for you in video and photos.

But let’s end on this. I love my kids, I love every one of them with their differing personalities and smells. I’ve been sniffing the tops of their heads and smoothing my chin on their soft hair since minutes after birth. I am your mummy and I hope I am doing OK. Happy Mother’s Day to my friends in America.

From There to Here

Medical school graduation and my girls!

Medical school graduation and my girls!

My previous entries are from 10 years ago. Just a brief re-cap to bring you up-to-date. Moved 5000 miles from California to England. Changed lifestyles, divorced, re-married and graduated medical school 3 years ago (see pic with number three in my tummy). Now a mum of four children and married to another doctor. It has been quite a journey – never focused on the destination just took each day at a time. Sometimes it felt as if I would never graduate medical school, much as it feels that I will never finish foundation year 1 as a doctor. But I did graduate, even managed honours, and am now set to finally finish FY1 this year having taken three years with two babies during it.  The journey still continues and I am enjoying (when I can) the ride. The destination? Who knows! Ride along with me.