Saturday, 15 April 2017

Diagnosis story

In 2001, I shat myself as an adult for the first time. I was living in a shared house with 5 other people, and we only had one toilet. I was in my bedroom, which was at the top of the house, when I suddenly got an extreme urge to go. I jumped out of bed, and started to run down the two flights of stairs to the bathroom. I only made it to the first landing. I spent the next three days camped out in the living room, as it was closest to the bathroom, and I was needing to go upwards of 20 times a day, often with very little notice. I didn’t bother going to the doctor, as I assumed that I had food poisoning. Although it was a horrific experience, I thought very little of it once I recovered, and I told nobody. Would you have told anybody that you shit yourself, and you weren’t drunk?

A few months later I decided to get a second, part time, job. I had been working with my Mum at her restaurant, but we were only busy at the weekends, so a week-day - day time job was required to top up my income. I worked from 9-1 Monday - Friday, at my day job, and from 5-10, midnight at the weekends. It may sound like a lot, but I was used to working double those hours, and staying out partying while I was at University, so it really should have been a doddle. The first two weeks were. After that though, I was finding it difficult to stay awake at my desk. In fact, I nodded off a fair few times, and it was only the loud beeping sound in my earpiece  that kept me from falling into a deep slumber at work. The office was 10 minuets away from the restaurant which I now lived above. I’d be home by 1.20, and asleep by 2pm. Every day. Without fail. I had to set an alarm to wake me by 4.15, so I could splash some water on my face, and head downstairs to open the restaurant. Often I would sleep through, and find myself being gently shaken awake by our lovely head chef, or shouted awake by my mother. I just assumed that I was naturally tired from the extra hours, and that I must be getting old- I was 23!
In 2003, I shat myself as an adult for the second time. Like the first time, I was at home, unlike the first time, I didn’t have two flights of stairs between myself and the toilet as I had an en suite, and I still didn’t make it to the bathroom on time. Like the first time, I explained it away as a bout of food poisoning. I didn’t go the the Dr’s, and I didn’t tell anybody what had happened. Just like I didn’t tell anybody about the crippling stomach pain I had been suffering with every month since I was 15. And the fact that the pain got worse when I opened my bowels, and that fact that most months I would be sitting on the toilet in a cold sweat because of the pain, and I would then have to lie on the bathroom floor for the best part of an hour trying to regulate my breathing, whilst shaking with white hot pain, trying to convince myself that eventually the pain would pass. I told myself that it was silly to bother anybody, as every girl suffered from painful periods. I did, however, go to the GP when my wrists started to throb. I was diagnosed with Repetitive strain injury, thought to be caused by the computers at my second job, and I was signed off for a month, on full pay, whilst I recovered. I shat myself again during that month off. I decided that I must be allergic to prawns. I told everyone I knew about the prawn allergy. I didn’t tell them how I had come to that conclusion. Two years passed in a constant cycle of fatigue, wrist pain, hip pain, crippling tummy pain, food poisoning, and just making it to the toilet in time. I had myself and everyone else convinced that I was allergic to seafood, and that I wasn’t taking said allergy seriously enough, as my bottom kept on exploding.
Then, in 2004, on a combined holiday to Portugal and then Dublin, I bled from my bottom for the first time. I continued to bleed for a week. Every time I used the toilet, bright red blood would fill the basin. This time, I did tell somebody - My mother, and she made me go to the DR. I was diagnosed with piles, and sent home with a cream to rub on my bum. Then I started to bleed again. And again. And again. And each time the blood got darker, and more goey. As a woman, I am very used to seeing blood in the toilet - aren’t we ladies? I have bled every month from the age of 11. You become desensitised to it. It’s a normal, monthly occurrence. I have bled every month, for up to seven days, 180 times.  Approximately 1260 days of bleeding. I am not afraid of, nor phased by the sight of blood in the toilet. Until it started coming out of my rectum. So I went to the Dr again. Again, I was diagnosed with piles. My mother was not satisfied with this diagnosis. She was growing sick and tired of the constant hysterical phone calls. Let’s be honest, I am prone to the dramatic - I come from a long line of Drama Queen.

My mum told me I should take a sample for my Dr to take a look at. I told her that I couldn't possibly, as I hadn't been asked to do one, and I didn't have a sample pot. My mother insisted that I didn't need one, that I should poo into a clear plastic bag.

So I did as she said. I made an emergency appointment to see my GP, walked into her office, placed the sandwich bag containing my bloody, mucus filled stool sample, with the words, “tell me this is normal”

As you can imagine, she was shocked. That shock quickly turned to disgust, and then to anger. As she ushered me out of her office she told me she would refer me to a Gastroenterologist, but she was sure that it was nothing serious, as I had already had a hemorrhoid diagnosis. It wasn’t like I had Cancer or anything. She actually said that to me - "it's not like you have cancer or anything." And just like that, I was out of her office, in a state of shock and bewilderment . I couldn’t believe that I had been fobbed off again. I stood in the street outside the Doctors surgery, shaking and weeping with fury. Enough was enough, and I had had enough. I walked home, I  sat down at my desk, and wrote a complaint letter to the manager of my GP’s surgery. Within a week I had an appointment for a colonoscopy at the Digestive Diseases Centre at The Royal Sussex County Hospital.


For those of you that have never had one, a colonoscopy is when a camera is inserted into your anus, in order to take photographs / film your large intestine.
As you can imagine, in order to get a good picture, the entire large intestine needs to be clear of any waste. This is achieved by drinking the worlds strongest laxative. For those of you yet to go through the joy of Colonoscopy prep, I have this advice - a decent film or television series on your tablet or laptop, and ultra soft toilet paper - preferably flush able wet wipes will make a miserable day a tiny bit less miserable.

I was strangely excited about having the procedure. I’m one of those weirdo’s who loves watching medical procedure’s on the telly. I’m not at all squeamish, love getting my hands on a pussy pimple,or even better, a blackhead. I was somewhat disappointed that I was being sedated, as I was intrigued to see what my insides looked like. I needen’t have worried.  The sedation was light. I saw everything. I had no idea what a healthy colon should have looked like, but I knew that what I was looking at wasn’t it. My insides were a bloody mess. Literally. And then I heard the Consultant mutter the words “Oh my goodness”, as he took some biopsies, and I knew that the prognosis wasn’t good.

Thursday, 13 April 2017

Truths I rarely share.


It is no secret that I had a major operation in April 2015. If you don't know that I had my rectum removed and my anus sewn shut, then it's likely that you haven't been my friend for very long, because one thing I am not, is secretive about it. It is also no secret that I have been taking very strong prescription pain medications, which I am currently trying to wean myself off. My life is an open book. I share stories and photos regularly online about what is happening in my life on a day to day basis.

Except it isn't, and I don't.

I share what I want people to know. I post the photos that I want people to see. I tell the story that I want people to hear. I am "open" and "honest" to a degree.

About a year ago, I shared a photograph entitled "Batch cooking". It was of an array of dishes that I had spent the day preparing for my family and a friend who had had a premature baby. There was an obscene amount of food. This photo gained likes, and comments galore. It told a story of a woman who has her shit together, so much so that she can cook 2 weeks worth of food in one day.

That picture also tells another story. The story that I don't tell, don't share.

The story of a woman who cooks two weeks worth of food in one day, because that is possibly the one day out of the month that she will be well enough to cook. So she fills her freezer.

In the past 21 days, I have cooked from fresh, 5 times for my partner and I.  Our main evening meals have consisted of pre cooked meals from the freezer (some batch cooked by me, others by the supermarket), take aways, sandwiches, cereal & porridge, cheese on crackers, crisps, biscuits, yoghurt, or nothing at all.

My children have a home cooked meal most evenings, however they mainly consist of things that I can take from the freezer and throw into the oven - pre cooked lasagne, sausage rolls, chicken nuggets (home made, batch cooked, and frozen), or pasta with bacon pieces and tomato sauce, always cooked in bulk so they can have it for more than one main meal. Convenience isn't a luxury, it's a necessity. And I have learnt how to make healthy, child friendly, convenience foods, in bulk. I've had to.

My partner is not so fortunate, or well looked after.


It also hasn't been a secret that I have started performing again. I appeared in Jesus Christ Superstar last April, Rent in December, I wrote and performed my play, Kat's Bag of Crap in February, and I am appearing in  Bad Girls The Musical next week.

What I haven't shared is my partners reluctance in my committing to all of these shows. He was worried, and continues to worry, that I have taken on too much. That I wouldn't be / am not well enough / strong enough to manage the rehearsals and performances.

Of course I fought him on it. Insisted that I was fine. That I was getting better. That I could cope.

He was right to be concerned. Because I am barely strong enough and managing. I am holding on by the skin of my teeth.

Although I am making it to and through rehearsals, and I am enjoying myself immensely, I am also in a considerable amount of pain during and after each and every one.

 The thing is, I am used to being in pain. On any given day, my pain level ranges from 2/10 to 7/10. EVERY SINGLE DAY. My baseline, my normal pain level, where 0 is no pain, and 10 is unbearable - take me to the hospital now because I am about to die kind of pain, is 3/10. This is with two different types of kick ass opiate pain relief that I am constantly on. I am almost NEVER pain free. When I hit 6/10, I take something to help me, otherwise, I just get on with it. Pain is normal for me.

I am currently in bed, doing nothing but type, and my pain is at a 5, but I'm happy because an hour ago I was at 6. So yes, I am rehearsing three times a week. Yes, I am taking part in a show. I am also taking OPIATE pain relief before, often during, and always after, each and every rehearsal and performance.

I haven't told anybody this truth. I am petrified that I won't be able to make it through the 8 performances I have to do next week (11 if you include dress and technical rehearsals.) I know that once I am on the stage adrenaline and excitement will get me through each show, but I have to make it out of my bed, into the shower, out of the house, and to the theatre before the adrenaline can do its job. Today, I have struggled to get out of bed to use the bathroom.


Another non secret is that I am looking better than I have looked in decades. My exterior is banging right now. Curves in all the right places, hair behaving, tummy decreasing. I have a waist. My levels of narcissism are rising at an alarming rate. Constant selfies, flooding your timelines, of me in lovely dresses, off to church. What I don't share, is that I dress up, go to Church, leave Church, go to my Mum's house, change back into my pyjamas, and sleep on her sofa while she cooks lunch. I wake up, eat, sleep some more, drive home, give my children a light dinner, put them to bed, and go back to bed myself. Every single Sunday I spend from 9am - 12pm looking fantastic. 3 hours. That's it.

I have had to have a nap every single day this week. Why my partner puts up with my lazy ass is anybody's guess.

With all that said, I maintain that I am getting better. I am happier than I have been in years. My good days may not have increased in quantity. I may still spend a third of the year in my pyjamas, unable to function due to crippling fatigue. Not able to shower, dress myself, cook for my family, leave the house, often not able to lift my head from my pillow. Even though I often still have to use a commode in my bedroom to urinate, because the stairs are too much for me to manage. Even though my partner has to remind me to shower, and to eat on the days when all I can do is sleep. Even though my bedroom is often the only room I see for days at a time, my quality of life on my good days is the highest it has been in decades.

 I am no longer simply surviving, I am living.

 Sadly though, it hurts to live.