Monday 31 August 2015

Documents in the Rain


Charlie was rushing home when he first saw it. If it had been a beautiful sunny day he would have been looking around him, taking in the beauty of the university grounds. Charlie loved the walk through the grounds. From the lecture theatre to his digs took him through the arboretum, around the tennis courts and finally across the end of the lake.  Charlie was always amazed by the different types of flora and fauna he experienced on his walk home. So different from Birmingham city centre where he had been brought up. The concrete jungle with the odd tree and small patch of grass put in by overspent councils to try and give it some semblance of nature and break up the grey monotony.
But on this day he had had his head bent down, trying to fight against the driving rain. At first he saw a spot of red out of the corner of his eye. He didn't want to stop, he was getting soaked and needed to keep moving fast but the flash of colour caught his eye and his curiosity. He dog legged across the pavement and stopped. Looking down he had to look twice but there in the gutter was a copy of the I Ching. He picked it up and carried on home.
When he got home he threw the book into the sink and started undressing. A while later after a hot shower and a change of clothes he came back and looked at it. It was wet through and in danger of disintegrating but he picked it up carefully and opened the front page. This book belongs to Billie Yang.
Charlie couldn't believe his luck. Billie Yang  was the most beautiful girl he had every seen. She was in his english literature group and he had been trying to pluck up the courage to talk to her for weeks. Now here was the ideal opportunity.
Charlie carefully laid the book out on the hearth mat and turned the gas fire on to low. He wanted to dry the book out so that he had something special to give to her.
The next day Charlie was sat behind Billie. Every time he tried to get her attention one of her friends or the teacher would say something. All day he tried and tried but always something distracted her. In the end Charlie knew he was never going to get her alone and he would never have the courage to talk to her with her friends there. What was he going to do? As he was walking towards the science lab for his last lesson of the day he walked passed the notice board. Of course that was it.
By the time Billie walked passed the same notice board an hour later there was a new notice in the middle of the board for all to see.

If anyone has lost a copy of the I Ching contact Charlie Somersby.

'Thank goodness,' Charlie heard one of Billie's friends say, in the large crowd gathered around the notice board. 'He lives over by the new mini mart you can pick it up on your way home.'

Charlie didn't wait to hear the reply but turned and ran out of the building. Chess club would have to be missed if he was going to get home and look smart enough when Billie got there.
Charlie showered and changed, and changed and changed. He didn't want to look too geeky but he didn't want her to think he wasn't intelligent. Finally he settled on his best checked shirt and his new blue jeans, just in time, he was still lacing his converse trainers when the door bell rang.
He raced down stairs but too late Mrs Jones who lived in the ground floor flat had got there first.
'Oh hi, does Charlie live here?' asked an extremely gruff voice. Charlie couldn't see who was at the door from where he stood but it obviously wasn't Billie.
'Yes,' said Mrs Jones. 'Oh look here he is now.'
Charlie slowly walked down the stairs to see Brian Matthews the school bully and resident idiot standing there.
'Hi Brian,' smiled Charlie, it wasn't wise to upset Brian. 'What can I do for you?'
'Billie said you had my book.'
'I've got a book but it's not yours. It's Billie's'
'No it's mine.'
'I don't know what your game is Brian,' said Charlie sounding a lot braver that he felt, 'but it's Billie's. It's got her name in it.'
'She gave it to me.'
'Course she did. Why would you want a copy of the I Ching?'
'Because I'm interested. So go get me my book.'
'No.'
Brian grabbed hold of the front of Charlie's shirt and pulled him close. Charlie could still smell the remnants of the shepherd's pie the canteen have served for lunch on Brian's breath.
'It's Billie's book and I am not going to let you have it.'
Brian raised his fist just as Mrs Jones reappeared from her flat. He looked at her, shrugged and pushed Charlie away. Charlie landed in an untidy pile on the floor and Brian turned and headed off up the street.
Before Mrs Jones had chance to ask Charlie what was going on he picked himself up and rushed back up to his room.
Charlie sat in his room flicking through the book. It had Billie's name in the front and there were notes in the margin all in her beautifully delicate handwriting. The book had to be hers but why was Brian trying to get hold of it? Just then the doorbell rang again. On the third ring Charlie realised Mrs Jones must have gone out and he went down stairs to answer it.
Charlie opened the door to find Brian standing there again.
'Look Brian I don't know what you want but I am not giving you the book.'
Brian stepped aside and behind him was Billie.
'Hi Charlie.'
'Hi Billie,' Charlie blushed.
'I wanted to thank you for standing up to Brian about the book. It couldn't have been easy.'
'Not a problem.'
'But the thing is it really is Brian's book. I gave it to him.'
'Oh. Oh well I best get it for him then.'
Charlie slowly walked up the stairs and fetched the book. He returned and without looking up he handed the book to Brian.
'Thanks.' Brian took the book and started to walk off.
'Look Charlie,' Billie said. Charlie looked up and was happy to see she was smiling. 'I wondered, as you've been so gallant about the book and everything.'
'Yes,' Charlie replied.
'Do you fancy going for a drink sometime? Maybe tomorrow?'
Charlie could only nodded and grin as Billie turned and ran off after Brian.

Sunday 23 August 2015

Help wanted


Jessie walked into the kitchen and her brain knew something was wrong before her eyes saw it. She’d been out late the night before and was still suffering from dehydration and a killer hangover. She opened the fridge and took out the orange juice, placing it on the kitchen table behind her. The orange juice carton wobbled and started to fall. Jessie grabbed the neck of the plastic container just in time. She looked down to see what she had put it on that stopped it from standing up straight. There on the edge of the table was a small white pill. Then she saw another and another. There must have been twenty of them scattered all over the table and at the far end the medicine bottle lay on its side, open and empty.

Within seconds her head cleared and she sprang into action. She took in the scene, scanning the kitchen in one quick movement. At the end of the table the chair was on its side and her mother was lying on the floor not moving. Jessie rushed over to her and felt for a pulse. She tried her mother’s hand. Nothing. She felt around her mother’s neck and thought she could feel a faint flutter as blood continued to pump through her veins.

Jessie rushed back up stairs and grabbed her mobile, dialling 999 as she charged back into the kitchen and sat at her mother’s side. The ambulance was there with ten minutes and all the time they had been waiting the dispatcher had carried on talking to Jessie, making sure she was alright and telling her what to do.

When the paramedics arrived they checked Jessie’s mother and claimed she was stable but obviously needed to get to a hospital. They transferred her to the ambulance and left Jessie to lock up and make her own way there.

Jessie’s mother was admitted and later that day she regained consciousness. Jessie was sitting by her hospital bed, where she had been all morning, as she opened her eyes.

‘Oh Mum, you’re okay,’ Jessie said as she saw her mother blinking in the harsh fluorescent lights. ‘It’s me Jessie. You’re in the hospital.’

‘Mouth, dry. Can I have some water?’ Jessie’s mother asked.

 ‘Of course.’ Jessie poured a glass of water and held it while her mother sipped gently. Her mother nodded when she had had enough to drink and Jessie carefully placed the glass back on the unit at the side of the bed.

‘What happened? What were you thinking?’ Jessie scolded her mother.

‘I don’t know. I guess I just forgot how many pills I had taken and took too many.’

‘Mum you have the chart I made for you. You’re supposed to tick them off and then you can’t forget.’

‘I know but it’s not so easy when I’m on my own.’

‘You have to get used to this. I am moving out next week and you need to be able to manage by yourself.’

‘But we are good together. You helping me. It works okay doesn’t it?’

‘It works for you but I want a life you know. Dave has been patient with me so far but he won’t wait forever. I will only be across town and I will still come and visit.’

‘Excuse me,’ a young white coated man stood at the end of the bed. ‘Miss Carter?’

Jessie nodded.

‘I’m Dr Jones. Can I have a quick word?’

‘Of course.’ Jessie got up and followed the doctor out of the ward.

Once they were in the corridor the doctor turned to Jessie. ‘Miss Carter I have some good news. We ran a tox screen on your mother and she didn’t have any excessive drugs in her system.’

‘What do you mean?’ Jessie stared at him. ‘She took an overdose.’

‘No she didn’t. She had very little food in her system and if anything I think she had not taken enough of her pills. She probably just passed out from lack of food.’

‘Oh God. I am so sorry that we have wasted your time,’ Jessie blushed feeling annoyed at her mother for creating this furore.

‘Not at all. I am just glad it is nothing more serious. She can go home this afternoon.’ The doctor shook Jessie’s hand and headed off down the corridor.

Jessie headed back into the ward to give her mother the good news.

 

                                                                                ################

‘Right that’s me packed Mum. Dave should be here soon and then we can load up the car.’

‘Jessie please don’t go. You know I can’t cope without you. Of course you can. You have your chart for your pills and you cope fine when I am here.’

‘Yes but I need you in case something goes wrong.’

‘No you don’t. You will be fine.’

‘But what about last week?’

‘You had nothing to eat and forgot to take you pills. You just need to be careful.’

‘But I need you. Can’t you see what happened last week could happen again.’

‘Not if you’re careful.’

‘Well maybe I won’t be careful. What’s the point if you’re not here? I’m just a lonely old woman. What’s the point?’

‘Don’t talk like that Mum. You’ll be fine and I’ll pop in to check on you.’

‘Make sure you do or I might have to stop eating again.’

‘What do you mean by that?’

‘Well you only care about me when I collapse.’

‘You know that’s not true. I love you. You’re my mum but I have a life of my own and I am moving in with Dave.’

‘Well on your head be it.’

‘Mum don’t be like that.’

Just then a car horn could be heard outside and Jessie glanced out of the window.

‘That’s Dave. I’m off. Now take care of yourself and I’ll pop in later in the week.

 

                                                                ##########################

Jessie put the phone down and frowned.

‘What’s wrong love?’ Dave asked.

‘It’s Mum, she’s not picking up her phone.’

‘She’s probably just sulking.’

‘I know we had words but I do worry about her. She had all that trouble when Dad died. I don’t want her to feel she’s all on her own.’

‘I’m sure she’s fine but if it’ll make you happier I’ll get the car and we can pop round.’

‘Thanks Dave.’

 

Twenty minutes later they pulled up outside Jessie’s mum’s house. Jessie rang the bell and waited. Nothing. She put her ear to the glass to see if she could hear her mother coming to the door from the back room. Still nothing.

Jessie fished around in her handbag to find the door key. Finally finding it she let herself in. She walked into the living room as Dave headed towards the kitchen.

Jessie spent a few minutes looking around the living room and came out into the hallway just as Dave stood in the kitchen door.

‘I’m so sorry love.’ Dave said as he blocked the door.

‘What, What is it?’ Jessie said as she tried to push passed him.

He blocked her and put out his arms to give her a hug. The only thing she could see over his shoulder was the kitchen table. In the middle lay a bottle of pills open and on its side. Only this time there were no pills left to scatter over the kitchen table.

Saturday 15 August 2015

Full v Partial Laryngectomy - the verdict so far


Four months ago I had a partial laryngectomy. At the time I was debating having a full laryngectomy and two different consultants effectively talked me out of the procedure. Four months on I am struggling with the decision I made. Here's how it went and how I thought it could have gone had my decision been different.
Had I have chosen to have a full laryngectomy I would have been eating within two to four weeks of the operation. I would have been talking within six weeks. In order to talk I would have had to had a value fitted which would need changing regularly. This procedure is done by popping in to see your local speech and language therapists and takes about 20 minutes. It is not known how often the valve needs changing but it can be as often as once a month or as seldom as once a year, everyone is different. This valve would have enable me to have had a stronger, but deeper, voice and it could have been adjusted until I got something I liked.  The main disadvantage was that I would have had a stoma in my throat for the rest of my life and would have had to insert a filter each day. This procedure would have been similar to what I have been doing every morning for the last seven months while looking after my tracheostomy.
But I didn't chose the full laryngectomy because, to quote one consultant, 'there would be no going back and with a partial laryngectomy within a year it would be as if all this never happened'.
So four months into my 'intense' rehab here is the reality of the situation.
After the operation I couldn't speak for six weeks. Now I can speak my voice is very quiet and weak. I get breathless and can only talk in short sentences and for short periods of time. As I only have one vocal chord it has got inflamed and swollen, This has caused a blockage in my airway and is making it difficult to breathe. This possibility was never discussed with me when I had to make my original decision.
I often get breathless and struggle to walk any distance. I can't walk up stairs and travel at about half the speed that I did before the operation. Apparently this is because my airway is narrow, again this was not discussed with me. Apparently this could be because there is some swelling from the operation. As I mentioned earlier the operation was four months ago and when I started this there was a chance that my rehab could have been finished in three months. With that knowledge I find it difficult to imagine that there is still swelling from the operation. And if there is could someone please tell me when it is likely to go down so I can start breathing again.
I can't swallow my own spit so I have to have a receptacle with me at all time to spit into. This means I can't leave the house other than to go to the hospital or work. Retail shops tend to frown on their customers spitting as there wander around the cashmere jumpers or fresh veg. I have been very lucky that the people at work have put up with me spitting into a cup all day. Without that release I would have gone stir crazy by now.
I am carrying out swallow exercises in order to restore my swallowing function but it is hardly the 'intense' rehab I was led to expect. I have to try to swallow five teaspoons of water every two hours. It is horrible as most of it hits my lungs and leaves me coughing like a 80 year old who's smoked forty a day all her life but it is not what I would  call intense.
Finally the rehab was supposed to take three to six months with no mention of it running past that. There was even talk of pushing me harder to get me through it in three months. Well four months in and my next swallow X-ray has been pushed back two weeks. Hardly any time at all you may think, but when you don't leave the house because you can't function and you have been fed via a tube for nine months, two weeks feels like a life time. It is also another sign that things aren't as good as they should be.
So was the decision to have a partial laryngectomy the right one? At the moment I doubt it but hopefully I will be proved wrong.

Sunday 9 August 2015

The Strawberry Jam Incident


Pam was sitting at the kitchen table sewing name labels on the inside of Tommy’s school shirts. She wasn’t sure which she hated more, having to buy new clothes every term as he had a growth spurt, or the hours of sitting sewing name labels on everything.

Tommy and Jeanette, the girl from next door had been racing around the house for the last twenty minutes and from the general hullaballoo she thought it was cops and robbers. There had been a lot of noises like shots being fired and what she could only assume was a child interpretation of a police siren. Pam had just finished sewing the last label in, and had pulled the needle and thread up to her mouth to bite it off when she heard a noise that made the blood in her veins freeze.

She dropped the shirt with the needle and thread still attached and raced out into the hall just as Tommy’s tumble down the stairs finished at her feet.

‘Oh my god, Tommy, Tommy,’ Pam cried as she dropped to her knees and cradled Tommy’s head on her knees.

‘It’s okay Mrs Jones. I think I got him,’ shouted Jeanette from the top of the stairs.

Pam looked up and saw Jeanette still pointing her plastic gun at Tommy.

‘I don’t think you understand Jeanette. Tommy’s really hurt.’ Tommy lay still and limp in his mother’s arms. She could see his little chest rising and falling but who knew what damage had been done.

As she watched his chest she noticed for the first time the red stain. Slow spreading on the upper left hand side of his shirt was a large red stain.

‘Jeanette. I need you to put the gun down and go and get your dad.’

‘But he’s only playing dead Mrs Jones. He’s going to escape if I don’t keep the gun on him.’

‘I’ll keep an eye on him and you go next door and get your dad.’

‘But Mrs Jones…’

‘Jeanette this is important. I need you to go now.’ Pam was trying to keep her voice steady but she was starting to panic and she needed help.

Jeanette walked down the stairs and handed Pam the gun. ‘Don’t let him out of your sight.’

‘I won’t. Now hurry.’ Pam was starting to cry and she needed the girl to hurry and not get distracted.

Jeanette raced out of the door and Pam looked down at her son. As soon as the door clicked closed he opened his left eye.

‘Oh thank God. Are you okay sweetheart?’

‘Has she gone?’ Tommy whispered.

‘She’s gone but you lay still sweetheart. I think you’ve hurt yourself and we need to get an ambulance to look at you.’

‘Nah, I fine thanks Mum.’ Tommy shook his head and jumped to his feet.

Pam managed to grab hold of his arm before he had chance to go racing off. ‘I don’t think so. You’re hurt and you need checking out. For a start let’s have a look at your chest.’

Pam whipped his shirt off over his head. There was not a mark on him. She held his hand and spun him round and round. Next she held up his shirt and looked at the stain. The blood stain she had seen earlier didn’t look quite right. She looked at her son and he smiled sheepishly.

‘Jeanette was going to arrest me and lock me up in prison so I had to escape. She thought she shot me so I could escape.’

‘And what is this?’ Pam pointed at the stain.

‘Well… you know the jam sandwiches you made us for lunch?’

Pam was just about to explode at her son as Jeanette’s father came flying through the open door.

‘See I told you he wasn’t dead,’ Jeanette cried as she grabbed the gun and started chasing after Tommy.

At tear stained Pam picked herself up off the floor and smiled sheepishly at Jeanette’s dad. ‘Well now you’re here do you fancy a cup of tea?’

‘Why not?’

Sunday 12 July 2015

Childhood hobbies?

Jimmy hadn't been able to believe his luck when he had been sitting waiting for his wife that morning. It had been too hot to sit in the car, so he had been standing by it, absent mindedly looking up at the clouds. The first time he had seen the shape he had to blink and shake his head. Surely not. When he looked again it was gone. He had almost given up hope when it flew over again. The shape, the elegance. There was no mistaking a peregrine falcon when you saw one. He watched it fly out towards the cliffs over the other side of the office block where his wife worked. It must be nesting out there, he thought.
Jimmy had loved to watch the birds when he had been a kid. His dad had bought him a book of English birds for his seventh birthday and he had ticketed them off as he had seen them all. The peregrine falcon had been the last one he had spotted. His dad bought him new night vision binoculars to celebrate having seen all the birds in the book.
When his wife finally returned to the car he had rushed her home and barricaded himself into the study checking out everything he needed to know.
'I'm off out,' he called to his wife as he left the study and stood in the hall getting his coat on.
'I thought we were having a quiet night in,' she replied as she stood in the lounge doorway holding a large glass of wine.
'Something's come up. I won't be long.' Jimmy smiled, rushed back to give her a kiss on the check, grabbed his car keys and headed out.

Jimmy parked at the back of the car park the walkers used half way up the cliffs, where the trail flatten out before the cliffs rose up again. There were one or two cars left but it was starting to get dark and they would soon be gone. He grabbed his night vision binoculars and carefully pulled the strap of his special satchel across his body. He might need to climb and he would need both hands free.
He walked to the top of the cliffs and stared long and hard. There a flicker of movement. Could that be her? Jimmy lay down on his stomach and using his night vision binoculars followed the flight of the falcon. He lost her just for a minute and then saw her fly out again. It was about half way up and the trail would take him to within about ten feet of the nest. He put his binoculars away and started to walk. When he estimated he was about where he had seen the falcon vanish he looked up. Nothing. Then he looked down. The trail was steeper than he remembered and he was actually about ten feet above the nest. He looked around but it was almost dark now and there was no one to be seen. He lowered himself onto his stomach and leaned over the edge. He needed his binoculars for there night vision not their magnification. Sitting in the nest,glinting in the moon light were three eggs. Three! Jimmy couldn't believe his luck. Looking up into the sky there was no sign of the falcon. He checked out the nest again and saw there was a small ledge just below the nest.
Jimmy twisted his body around and lowered his feet over the edge. He felt out with his toes but couldn't feel the ledge. He lowered himself further and was just hanging on by his finger tips but still he couldn't feel the ledge. He knew it was there and the falcon wouldn't  be away long so he dropped. The ledge had only been another two feet below him and he landed safely. It was only about ten inches wide so Jimmy couldn't turn. He edged along with his face pushed into the cliff face. Before he knew it he was level with the nest. He opened the flap of his satchel and carefully parted the nest of hay inside. He then carefully lifted each of the three falcon eggs and placed them into the satchel. He replaced the hay over the top of the eggs and closed the satchel. Carefully he edged back along the cliff to where he had dropped down. He reached up but he couldn't reach high enough to lift himself back to the trail. Jimmy's breath started to increase. he had to get back but he couldn't go back the way he'd come. Jimmy started panting and looking around.
'Calm down old boy,' he said to himself. 'Think about this sensibly.'
Jimmy got his binoculars and looked along the cliff face. The opposite side of the nest there looked like there might be some holes in the cliff he could use as hand holds. Jimmy edged along the ledge again. As he slowly moved along, looking at his feet all the time he felt a thud on the top of his head. It must have been some gravel shook loose from above, he though to himself. The second thump was harder, as Jimmy looked up the third hit happened. It wasn't a gravel fall, it was the falcon. She glided in silently and her claws hit him straight in the face as he looked up. The razor sharp claws missed his eyes by millimetres. Jimmy lifted his hand to protect his face and started to lose his balance. The falcon was circling. Getting ready to come back for another hit. Jimmy grabbed for the cliff but there was nothing to hold. He petered in the air for what seemed like forever. He somehow managed to push himself flat against the cliff face. His balance was out of sync because of his heavy satchel. Maybe he could distract the bird while he got to safety. He took off the satchel and using the strap pendulum swung it, gathering momentum. As it reached the height of its swing he released the bag and it flew in the air, arcing over the cliff ledge and back to the trail above. Jimmy prayed at least one of them had survived. Even one was worth a lot of money.
Releasing the bag had upset Jimmy's own balance again and he grabbed at the cliff face with the finger tips of both hands just as the falcon made her next drive. She levelled out and battered her wings to hold her at the right height, all the time stabbing and scrapping her claws at his head and his eyes. Instinct took over and Jimmy lifted his arms. One over his eyes to protect them and the other flailing about to try and beat the bird off. Too late he realised he didn't have hold on the cliff. The falcon almost knowing, dived in for one last time. This time she grabbed at his jacket and with her beak and her claws pulled.


The next morning two rangers were walking along the trail.
'Bob can you see what I see?' the younger warden whispered to his colleague.
'Sure can Rich.' They both stopped and stared.
'We'll need to close the trail.'
'I'll go back down and let them know. You stay here and stop anyone going past.'
'Will do.' For a few minutes neither of them moved. They just stood and watched as the peregrine falcon sat on top of an open hessian satchel, protecting her three perfect eggs, in the middle of the walkers' trail.
'Amazing what they use to make nests isn't.'
'Sure is.'

Sunday 5 July 2015

Changing Baby

Changing Baby

Shirley lift the baby up in front of her, placed her nose next to the nappy and sniffed. Why do people do that? she though to herself, you could smell the nappy from three streets away, there was no need to double check that that was where the stench was coming from.
Shirley grabbed the change mat and carefully laid the baby down. Dragging the bag with all his change things in she whipped off the dirty nappy and quickly fasten it inside a scented disposal bag. She then carefully set about cleaning him.
She smiled softly to herself as she went about her task. She was so lucky to have him. Her smile fell as she remembered the doctor telling her all those years ago that she wouldn't be able to conceive. The pain and the anguish she had gone through, the tests and finally the numerous attempts at IVF. After the third attempt her husband had tried to persuade her that there was no point going on. He didn't understand what it meant to her, she needed to have a baby.
Her husband walked out in the end. Claimed that she had gone mad and that she never had anytime for them anymore. He said he hated feeling like she only wanted him for his sperm.
It had been hard at first, being alone after so many years. She had picked herself up and when she got the job at the nursery she knew she was going to be okay.
She gently wiped the baby's bottom, applied a little nappy rash cream and a little talc before popping on his clean nappy. She was just starting to fasten the velcro on the sides of the nappy when there was a knock at the door.
'They'll have to wait, won't they little man?' she whispered to the baby. She got his legs back inside the baby grow and was struggling with the press studs when the banging on the door came again, this time louder and more insistent.
'Oooh someone is impatient.' she smiled at the baby and lifted him into her arms, placing him gently against her shoulder as she tidied away the change mat, carefully putting all the used wipes into a disposal bag.
'Mrs Jones,' a voice shouted as the banging on the door started again. 'Mrs Jones, this is the police. We know you are only looking after him but you need to let us in now.'
'Shit.' Shirley mutter as she stood up. She grabbed the change bag, her handbag and rushed towards the back door.
She had only made it as far as the hallway when the front door imploded inwards and four very large, very loud policemen came barging through.
She could see the shadow of others at the back door. The game was up. The last month had been the happiest she had ever known. She held the baby close and sat down on the bottom of the stairs, holding him to her and rocking him gently.  

Saturday 27 June 2015

Where did the first half go?



I can't believe that on Wednesday we will start the second half of the year. Where has the first half gone?
I appreciate I have been a little off the radar as far as writing has been concerned so here's an update of what's been happening and what I hope to achieve in the second half of the year, assuming it doesn't go as  quickly as the first half.
As many of you know I have been having a lot of surgery for my throat and I won't go into that in detail, but needless to say the recuperation has curtailed my writing some what.
In an attempt to get my writing kick started I have set up a weekend writing challenge on Scribophile. This challenge involves an object being left and then a story has to be written which includes the object. This is going great except I am one of the few people failing to write the story. Motivation seems to have left me along with my thyroid and vocal chords.
I have also set up a group on facebook to promote any books which are available free through Kindle Owners Lending Library and Kindle Unlimited. I am happy to say a number of people have signed up to this and hopefully they have seen their books being borrowed thanks to the exposure.
Finally for me I have decided to split my novel 'Stripper of the Yard' into two parts. Part 1 is free and part 2 is the same price as the full book (only £1.99 or $2.99). The idea is that hopefully people will download part 1, enjoy it, and wanting to know what happens next, buy part 2. So far I have had 307 downloads of part 1 and 7 sales of part 2 or the entire book. This is all in the last 2 weeks which considering I had had no sales in the last 6 months is brilliant.
The hardest part of the whole thing was getting Amazon to list the book for free. With Smashwords and Barnes & Noble you can chose to list a book for free. However with Amazon you have to list a book for at least 99p. In order to list a book for free you have to get Amazon to price match the book in line with Smashwords and Barnes & Nobel. This means listing the book with those other sites and then writing to Amazon to request that they price match. Amazon then email saying they will think about it and take a week to decide. In my case they price matched in the USA and then I had to request that they did the same in the UK, which took another week.
But the books are now listed and if you want to check them out they're here....
Part 1 - http://www.amazon.co.uk/dp/B00ZAQOT2O/
Part 2 - http://www.amazon.co.uk/dp/B00ZAQOHIK/

Going forwards I have 2 projects on the go at the moment, both of which need more attention than I have given them recently.
I have my 2013 NaNoWriMo winner to edit and then publish. This is the story of an East-end gangster whose wife can get pregnant and pretends she is to keep him, while at the same time his girlfriend is pregnant and pretends not to be to keep him. When his brother introduces the two women the consequences could be dire. I am hoping to have this ready to publish by the end of the year.
My second project is to write my story. In the last 7 months I have had intensive surgery and been in most of the departments in the local hospital (except the maternity ward and the mortuary) and Guy's Hospital in London. I knew nothing about my condition and have learnt as I have gone a long and I thought it would be interesting to get everything down on paper to reflect on the journey I have been through. As my treatment has not yet finished I don't know when it will be available but hopefully some time next year.

So lots has happened and lots still has to happen.
How have you coped with the first half of the year?
Do you have big plans for the second half?

Friday 5 June 2015

HME's - Swedish Nose v Bib - A Patient's view



When you have a tracheostomy you intake all your air through a tube inserted into your throat. One of the problems with this is that the air goes in dry and cold and doesn't have the benefit of the warming and filtering effects of you nose. In order to replace your nose's function a HME (heat and moisture exchange) is required.
Up until a week ago I have always used a Buchanan bib but at my last hospital visit it was suggested I should try a Swedish nose.
After my first week here is what I see as the pros and cons of the two systems.

Buchanan bib
Pros

  • The bib covers the trachi and gives the patient some privacy when out in public. A stranger would not know what was under the bid and not necessarily know the patient had an illness or disability.
  • The bib can be washed and is easy to keep clean.
  • A bib lasts three days.
  • The bib catches projectile spit/mucus that can be ejected from the trachi when coughing.


Cons

  • Unfiltered air can still enter the trachi around the sides and the bottom of the bib.
  • Although in hides the trachi the bib is fairly obvious and doesn't match most outfits so can look out of place.
  • In high winds the bib can be sucked against the trachi and cause some breathing problems.


Swedish nose
Pros

  • The Swedish nose fits snug on the end of the Trachi and therefore all the air is filtered.
  • There is a flanged opening so suction can still be carried out even with the HME in place.
  • I have found if you wear the Swedish nose under your shower protector in stops the shower protector from occluding the trachi and makes breathing much easier.
  • It stops mucus from escaping when you cough and staining or being absorbed into your clothes. 


Cons

  • The Swedish nose attaches onto the end of the trachi and therefore the whole of the trachi is visible when you go out.
  • It only lasts 24 hours and then you need a new one.
  • If you cough and produce a lot of mucus and don't suction as you cough, it can gather in the Swedish nose. This causes moisture build up which means the HME loses efficiency. This can also make breathing feel more laboured which means changing the HME more regularly.
  • If you have a strong cough, as I do, you can cough the HME off. So make sure you always carry a spare.
  • More pressure is needed to occlude the trachi to talk. If you have a sensitive trachi this can lead to more coughing.


I have had a few teething problems getting used to the Swedish Nose but if it is protecting my airways and giving me less chance of getting a chest infection then that can only be a good thing.

Sunday 31 May 2015

What would be your first meal?

After 6 months of being fed through a tube, my thoughts turn to which foods I am missing the most.
 I won't have a first meal as such, because food will gradually be reintroduced starting with liquid, moving on to soft food and then eventually back to normal.
With 3 to 6 months left to go these are the things I will be looking forward to once everything is back to normal.

  • Burger King XL Bacon double cheese burger
  • Sausage and fried egg cob (that's Nottingham for bread roll) with brown sauce and hopefully a runny yolk
  • A Mr Whippy ice cream
  • Fish fingers, chips and beans
  • Wine gums (midget gems might be too small to chance in the future)
  • Goddards of Greenwich pie and mash with gravy
  • Tuna and chicken pizza
  • A pint of Adnams Broadside
  • Black Jacks
  • A cup of sweet strong tea

I am sure this list will be added to over the next six months and don't forget to keep your fingers crossed that everything will be fixed by then.
What would your first meal be?

Friday 29 May 2015

Did Feminism pass YOU by?

I don't necessarily consider myself a feminist, but I appreciate I have a good job, I bought my first house by myself and I have holidayed and travelled alone many times. All of these things would not have been possible for an average women not that many years ago.
However this week I have been shocked by the number of my friends who seem to define themselves by the man, or lack thereof, in their lives.
Regular readers will know I have been ill for a long time but whilst that is shit at least I have a husband. Apparently nothing can be worse that not having a partner.
Another friend has regularly started posting pictures on social media of herself looking loving into the eyes of her new beau. That's great and I am glad she is happy but what else is happening in her life? To read her media feed absolutely nothing.
I do also have friends who are strong women who go it alone. I am sure they would love to be in a relationship and have someone to share life's journey with, but they are not defined by it.
I could continue to expand and rant about how pointless life is unless you have given birth. I am one of the lucky ones. I don't have/want children. I can't imagine how awful it must feel to want children and not have them but is it the end of the world? Why can't life continue without children?
Is it really a physical/mental hole in your life or is it the fact the media, friends and family pressurise you into the fact you should be having children and you should be having them now?

Look at your friends feeds on social media and look at the difference between men and women? How many men complain about their lack of relationship status? How many fathers post nothing but child related posts?
There is a huge difference between the sexes and I don't think it's changing.

Tuesday 19 May 2015

Care and compassion - the most important 2 of the 6 C's

Nurses make you better. Doctors chop you up and solve the problem but nurses are the ones who care for you and make sure you get better.
There are many ways in which nurses can make you better and I have been amazed by the difference shown between nurses. They are overworked but still have to treat each patient with care and attention even if the patient before has wound them up or treated them badly.
After I had my first PEG feeding tube fitted I was awake during the night and I couldn't stop crying. The PEG was much longer than I had expected it to be and I was panicking that I would roll over in the night and trap it. Possibly even pull it out. In the very early hours of the morning a nurse came in to change a drip and I tried my best not to cry. He changed the drip and checked I was okay. When he saw I had been crying he asked me what was wrong. The flood gates opened. I couldn't stop. He stay with me and explained how well I had done and how everything was going to be okay. A few minutes later another nurse came in. He also explained how it was good the PEG was so long as it meant I could manage it myself and not need help.
These two nurses sat with me for at least ten minutes calming my fears and making sure I was okay. I had no medical needs but they spent time with me anyway, truly showing the care and compassion nurses need.

After my partial laryngectomy I had two drains in my neck, a tracheostomy tube stitched into my neck and stitches running from my chin to my chest to stop me moving my head. Needless to say everything was very sore. A nurse came to clean my wound. As he was doing this I oohed and aahed a couple of times due to the soreness. I couldn't speak as part of my larynx had been removed so these noises were not that loud.
The nurse stopped what he was doing and started shouting at me. 'Joanna, Joanna,' he shouted. My name is not Joanna and because of the stitches I could not move my head to look at him.
'Joanna, I have to clean this or it will get infected,' he shouted. I mouthed that I knew that. He finished cleaning the wound, redressed it and left me crying in my bed.
This nurse was also the third nurse on this ward to get my name wrong. When I mentioned it to one of them she said, 'well it's close enough.' Another example of not really caring about the people you are treating.

The first example was Rotary Ward at William Harvey, the second example Guy's hospital. Round three goes to Rotary and they lead 2-1.

Thursday 14 May 2015

No counselling you're not dying

I have had five surgeries, two of which went wrong and three of which were to correct the original two. I am now unable to speak and have secretions running out of the front of my neck all over my clothes.
I am a little down and was pleased yesterday when finally it was mentioned that counselling was available.
Today I have been told that I can't be refered for counselling based upon my surgeries because I don't have cancer.
I have to go to my (overworked) GP and ask her to refer me.
I should be able to get an appointment with her in about two weeks and yet again I will be post op, with an open wound, sitting amongst people with germs. My consultant says the most important thing at the moment is for me not to get a chest infection so sitting in a GPs waiting room AGAIN is exactly what I need.
Yet again help with mental health issues is made as difficult as possible to get. I am not depressed but some help would be appreciated. Guess I just have to hope I get better on my own.

Tuesday 12 May 2015

Is my mental health part of the recovery process?

Having had five operations in the last five months and now being back to where I was four months ago I have been feeling a little low.
 I would not say I am depressed but I am not my usually jolly self and tears flow a lot more easily than they ever have before.
I have now mentioned to a number of different health care professionals that I come into contact with that I am feeling sad, and this has been greated by such wisdom as:
'Yes a lot of patients feel low after surgery.'
'Well we knew it wasn't going to be easy.'
'There is a long way to go yet.'
Before the surgery there were many offers of meeting people who had been through something similar and talking things through before I made the decision as to which surgery to have. But now the surgery is complete I just need to get on with my rehab with the help of speech and language therapists.
Surely if my state of mind was positive the potential for my physical rehab would be higher.
Where is the support for my state of mind?
Is the link between mental and physical well being obvious?
Or do I have to hit rock bottom before this help is offered?

Monday 11 May 2015

What you need to do is rest - In a hospital?

Many people will tell you that when you are ill what you need to do is rest, and above all get plenty of sleep.
However in a hospital this can be virtually impossible.
First you have a drug round at about 10pm, then depending on how much you need monitoring you will need your blood pressure etc. taking at about 2am and if like me you are a trachi patient you trachi will need checking and cleaning during the night. Depending on your feed regime you may need a new bag of feed at around about 4am and then there is the drug round again at 6am. Consultant do ward rounds between 8 and 9 and then it is time to get up.
As you can see sleep is broken at best and this assumes you can get back to sleep quickly.
Rotary Ward at William Harvey Hospital were very good at trying not to wake you up. I have woken a couple of time to find my feed bag had been changed without me having woken and the lights are turned out and for routine checks the nurses come round with little torches to ensure you are disturbed as little as possible.
Guy's hospital did things a little differently. Even thought I was in a side room the door was never fully closed so I always had the light from the corridor shining into my room. But what they do is they give you a welcome pack when you are first admitted and the two most important things in that welcome pack are a pair of ear plugs and a sleep mask. These are invaluable at ensuring a good nights sleep.
Considering how cash conscience Guy's were in everything else they did (more on this in later posts) this one little thing did make all the difference.
Sorry Rotary but this round goes to Guy's 1-1 for now.

Thursday 7 May 2015

Let's hear it for the boys

Having watched the Lisa Lynch biopic on BBC this week I was impressed by her strength and the amazing way she handled her illness. I am sure no one who watched that would have felt any different.
But how many people spared a thought for her husband. Here is a young man who early on in his marriage has to cope with this horrible illness and potentially the loss of his wife. With few exceptions he was strong and held it together for her. He was there whenever she needed him and what outlet did he have? What support did he have?
Having suffered from a long term illness myself I know I could not have coped without the support of my husband. He has been there through all the hospital appointments, the surgeries and the many time I have had to cope getting back into home life.
He puts up with my rants and and my rages, my highs and my lows. He calms me down and cheers me up.
Without him I would not have made it this far never mind the thought of making it through the next six months.
So let's us give a cheer for our support network and make sure on the good days they know how much you appreciate them. For on the bad days they are all you've got.

Sunday 3 May 2015

Confusion in the NHS - Well for this patient anyway

Recently I spent a lot of time in my local NHS hospital - Wiiliam Harvey in Ashford. Due to issues and complications last month I had to spend two weeks in Guy's Hospital in London. I could not believe the difference in the two hospitals and I'm guessing you'll be surprised by which I thought to be the better.
The thing that has struck me the most was the differences between the two hospitals when it comes to discharge.
With William Harvey my consultant wrote me a sick note signing me off work for an allotted amount of time. He said if I needed more I could go to my GP and get a continuation but that in his opinion I should be feeling well enough for work by the end of the sick note.
Upon discharge from Guy's hospital I asked for a doctors note. 'Oh no we don't do those here,' said the nurse. 'You need to go to your GP.'
I have been discharged from hospital on a bank holiday weekend. On Tuesday morning I need to get myself to the GPs surgery and sit amongst people with colds and other transmitable diseases just to get a sick note.
When I eventually get into see my GP I need to explain the surgery and ask for a sick note. I am not sure how she is supposed to know how long I need so I am guessing she will give me a note for a fortnight and then I will have to repeat the process in 14 days time, assuming I can get an appointment. Oh and I have to do all this having had part of my larynx removed and not being able to speak.
This is taking up my GP's time and exposing me to unnecessary risk of infection all within days of being discharged from hospital. I would love to know how at anyone at Guy's hospital can think this is a good use of NHS resources when a doctor could have written this note out for me during his rounds on the day of discharge.

One - nil to William Harvey I think, don't you?

Keep checking out the blog for further posts on how William Harvey know a thing or two about patient care.

Saturday 28 March 2015

The cobbles of remembrance


I had been enjoying the hot Sunday afternoon, lazing in the sun. They were having a birthday party next door and Cheneice was over there and Jim was away on business for another week. It wasn’t often I get to sit and do nothing but today was a perfect day to do just that.

So far I had worked half way down a very weak jug of PIMS and I was had almost finished the Jackie Collins that had been sat on my bedside table for the last few months.

I had heard a few screams from over the fence but that was kids being kids. Besides Marjory was watching them all and she was far more capable than I ever would be. I think she had a couple of the other mums helping her and as long as that lush, Emma Marchbanks, wasn’t there they would all be sober.

‘Mummy, mummy.’ I heard a voice that changed in pitch as it called out. Knowing it was my Cheniece but praying it wasn’t, I closed my eyes.

‘Mummy, look at me.’ I slowly opened my eyes to see my daughter’s head appear over the top of the fence and then vanish behind it again. Seconds later she appeared again.

‘Cheniece, what are you doing?’ I called as I slowly rose from my sun lounger.

‘Daniel has a trampoline. He got it for his birthday.’ She called back, still appear above the fence every few seconds.

‘And where is everyone else?’ I asked, now standing on tiptoe to see over the fence and realising my daughter was alone.

‘They are playing pass the parcel but I lost in the first round, so I came out to play.’

‘Cheniece, those things can be dangerous. You need to have someone to watch you.’

‘Well you can watch me now, can’t you?’

At that point Marjory appeared and saw me staring over the fence. ‘Way to keep an eye on the kids Marjory. Should you not have a net around this thing?’

‘We ordered one,’ Marjory rushed down the garden steps to stand close to the trampoline and my still jumping daughter, ‘but it didn’t turn up in time and I couldn’t not let them use in today. Could I?’

‘Well keep an eye on her will you.’

‘Of course.’ Marjory turn to Cheniece. ‘Time to come in now, we are about to start the birthday tea.’

‘Fantastic,’ shouted Cheniece as she seemed to jump higher in the air one last time and land on the ground, not the trampoline.

I looked at Marjory and before either of us could move Cheniece had run off back inside the house.

The relaxation of my afternoon spoilt, I went into the house and decided to tidy round ready for Cheniece’s return.

Before I knew it the clock in the lounge chimed six o’ clock and I grabbed my keys and headed next door. I was four steps out of the front door before I realised that I had forgotten to put any shoes on. All afternoon lounging around the garden, followed by a few hours mooching around the house I had not bothered to put anything on my feet. I looked down, looked at the house and then looked at next door. It was a smooth concrete path right up until Marjory’s driveway which was made up of old fashioned cobbled stones. ‘Sod it,’ I thought, and continued towards next door and collecting my daughter.

A couple of sharp stones made me reconsider my rash decision but I was nearer Marjory’s than home by then so there was no point turning back.

I walked onto Marjory’s driveway and felt the cobbles under my feet. I walked four steps before I stopped dead in my tracks. I could hear the noise of an engine turning over and suddenly I was twelve again.

It was a day the same as any other and I had been out all day playing with my friends on our bikes, swimming in the canal. All things health and safety don’t let kids do these days. I had got home at six and was surprised Mum hadn’t been standing out on the front looking for me. My trainers were hanging round my neck tied together with their laces and I dumped my bike at the street end of the drive and started walking towards the house. As I walked up the drive I could hear an engine running but couldn’t see any cars in the street. I couldn’t work out where it was coming from.

I got to the front door and pushed the same as always. But the door didn’t move. I jangled the handle but nothing. I pushed the bell and still nothing. Where could Mum be? She was always here and she would never have gone out without me.

I walked passed the front of the garage towards the back gate and as I did the noise of the car engine got louder. I looked out into the street and there was still no sign of the car I could hear. I got to the back gate and pushed the latch down. The gate opened easily and I headed into the back garden. As I walked down the back passage I looked at the back door to the garage and realised the noise was coming from in there. I pushed the door and it swung open.

The smell was something I hadn’t ever smelt before and the garage was engulfed in a dark cloud. The engine noise was louder than anything I had ever heard. Why was the car engine running? What was the hose pipe doing? I slowly walked to the car and tried to open the door. Through the smoke and the haze, I could make out someone was sitting in the driver’s seat. I started coughing as I pulled at the car door. It was locked. I pulled and pulled and pulled. I don’t know what I expected to happen. I was coughing harder now and breathing seemed to be something I had to think about.

I suddenly realised I needed help and I tried to run towards the door. It was like running through treacle. The door to the garage was open and I could see the sun streaming through, but it didn’t seem to be getting and closer. My breath was getting heavier and I was coughing too much to take deep breaths.

As I collapsed on the floor, the light from the door clouded. As if a cloud had tracked across the sun at that precise moment. There were voices but no noise I could make sense of.

 

‘Mummy, Mummy,’ Cheniece was clinging to my neck and I was lying on the floor.

‘Are you okay?’ Marjory ran from the front door and bent down to be level with me. ‘What happened?’

‘Nothing I must have just had too much sun I guess,’ I said smiling at Marjory and kissing my daughter on the top of her head as I slowly picked myself up.

 

That night as I was tucking Cheneice into bed she lifted her little hand and stroked my cheek. ‘I love you mummy.’

‘I love you too my sweetheart.’ I smiled and lifting her hand kissed it carefully.

‘Daniel’s party was great and he had two grandma’s there. Why have I only got one Grandma?’

I looked at my daughter carefully. She was so insightful sometimes. ‘Shall we have a story before you go to sleep?’

‘Yes please. George and Dragon?’

‘Of course.’

Sunday 22 February 2015

You wait months for a PEG – and then two come along at once


Those of you who have been following the story of my PEG will have seen my previous two posts:


As described previously it looked like my first PEG had embedded itself into the lining of my stomach after only fourteen days. The general protocol with a PEG is that after fourteen days the PEG should be pushed a short way back into the stomach and rotated. This shouldn’t be done any sooner as the tract needs to form between the stomach and the outside world. Any sooner and there can be complications with the internal layers not knitting together properly and there is the chance of infection.

Last week I had an endoscopy to check that the bumper really was embedded. This has to be the worst thing I have experienced since becoming ill. As I lose the ability to breath if I am sedated and laid flat the endoscopy had to be done whilst I was wide awake with just some numbing spray for the back of my throat. I felt as though I was going to choke as what has to be the largest camera in the world was pushed down my throat. At one point I thought I would throw up, and wearing a month guard and with a camera in my mouth I was not sure where the vomit would go, except back into me.

I cannot praise the nurses highly enough. The one with me kept talking to me, assuring me everything was okay and keeping me as calm as she could while the camera went down. Once the camera was down it was not as bad. Until the camera is brought out and then you have to go through the whole gagging process again.

So we now had confirmation that the PEG was embedding but that for the time being it was still working. I was told to continue using it until I could return for a new PEG to be fitted under general anaesthetic five days later. If at any point I was in pain through using the embedded tube I should go to A&E. This did not fill me with joy as so far this had always meant a four hour wait to then meet a doctor who knew nothing of PEGs and who couldn’t help me.

So I then arrived at the hospital five days later to have the new PEG fitted. The plan for the old PEG? Well they would try and pull it out but if that didn’t work then they weren’t sure what to do.

I had been nil by mouth since 10pm the night before. With a Trachi getting dehydrated can cause coughing and a lot of discomfort. There were three people waiting at 7.30am to see the same doctor and I was the last to be called. I finally went into surgery at 12.30pm. I know there is a list and therefore we can’t jump the queue but at the very least they could have let me have some water or some I.V. fluids rather than leaving me fourteen hours without anything.

Finally I was taken into the theatre and put to sleep. Imagine my surprise to discover upon waking that I now have two PEGs.

It took five hours for the registrar to arrive and to explain that they had been unable to remove the old PEG put hadn’t cut it off and left it in. She couldn’t explain why as the doctor who completed the surgery had already left the hospital to go on holiday.

The next day I was in a considerable amount of pain. I was sent for an x-ray and then doped up on Tramadol. The nurses were going to come and clean the wound and show me how to care for it, but unfortunately they were too busy, so left me with two wounds encrusted in dried blood for another day.

The day after that I was sent for a CT scan and when that didn’t explain the pain they decided to send me home with some pain killers. I have still not spoken to the doctor and there has still been no decision made as to the way forward to stop the second PEG from embedding in my stomach wall as the first did.

The treatment so far has very much been ‘well the first PEG shouldn’t have embedded, so we’ll just hope the second doesn’t.’ I have a doctor who was more intent on leaving for his holiday and who has left no instruction as to then next step with his junior doctors or his registrar. He is going to ring me tomorrow but I won’t be holding my breath on that phone call!

So keep tuned for the next instalment of how not to fit a PEG and remember if you have the choice stick with an NG tube.

Friday 13 February 2015

Me and My PEG – two weeks in


Two weeks ago I wrote a blog about the difference between NG and PEG feeding tubes from my point of view. If you missed it the link is here.

After that blog I was asked to update people as to how I was getting on once I was used to the PEG.

I decided to wait until it had been in two weeks as after two weeks the PEG has to be advanced and rotated. What this basically means is that the bumper on the outside of your skin is released and the tube is pushed back into your stomach and rotated through 360 degrees. This is to ensure that the internal bumper is not attached to your stomach lining.

I am not sure why you have to wait two weeks but that is what is recommended.

So as of yesterday I was getting ready to write this blog and talk about how I was no longer in pain with the PEG. How it is easier to shower. How I look more normal, no longer having a feeding tube sticking out of my nose and how I can have water whenever I like as I no longer have to check the location of the tube using a pH test.

That was what I was going to write until the nurse turned up to advance and rotate the PEG. The problem you see is that after exactly two weeks the PEG won’t advance. Yes that is correct, having done everything I was supposed to do the PEG has managed to get stuck in my stomach lining any way. This could never have happened with an NG tube.

Because of this I got to spend four hours in A&E waiting for an endoscopy nurse to try. The thing is no one in A&E knows what to do. You can’t blame them. My tube not rotating is neither an accident nor an emergency but the ridiculousness of the NHS dictates that I have to go there first to get treated.

When I finally got seen the nurses from Endoscopy where very caring and concerned but they still could not get the PEG to rotate. The doctor who fitted the tube also turned up and could not get it to advance. And that is where we left it.

Today I am going for an endoscopy so they can try and pull the tube from the inside of my stomach. If this doesn’t work they will just fit another one and leave the one that is embedded in my stomach lining there for the rest of my life. Oh and by the way there is no guarantee that the next PEG won’t do exactly the same thing.

So yet again can someone explain to me why PEG’s are so great and NG tubes are so dangerous?

Saturday 31 January 2015

NG versus PEG feeding tubes – This patient’s view


For the last two and a half months I have been fed through an NG tube. For the first two weeks much of this was done for me by the nurses at my local hospital and I had time to observe and get used to the feeding regime. For the last one and a half months my consultant has been trying to organise switching me to a PEG. For various reasons the procedure kept getting moved and finally on Thursday I had a PEG fitted under general anaesthetic. On Friday I returned home and now have to manage feeding myself with a new system that I have only seen used once in a hospital setting.

Everyone I spoke to assured me that the PEG was far better and easier to care for than the NG tube but having managed with the NG for nearly three months I have my doubts and I am not sure I would have switched if I had known then what I know now.

In an attempt to put things into perspective here are my pros and cons for the two systems.

NG tube

Pros

1.       It enters your body through your nose and a new stoma (hole) does not have to be created to accommodate its insertion

2.       It can be tucked discretely behind your ear and therefore doesn’t get in the way when not in use.

3.       The way my tube was set up there were two taps which could be used to insert feed, meds and water into the tube. This meant if you need water during you feed your could stop the feeding pump and flush water without needing to disconnect anything.

4.       Tap water can be used to flush the line and for ‘drinking’.

5.       If the NG falls out a new one can be inserted into your nostril relatively easily. It is uncomfortable but the hole is already there so no cutting new ones is needed.

Cons

1.       The tube has to be taped to the side of your nose and possibly to the side of your face to ensure it doesn’t fall out. This tape leaves your face sticky and difficult to wash and has to be replaced every few days.

2.       The tube coming out of your nose means everyone knows you have one – although if you’re looking for a sympathy vote this is actually a pro.

3.       In order to use the NG tube your first have to check it hasn’t moved. It is possibly that it could slip into your lungs. This is unlikely, but possible, so every time your use the tube from scratch you have to aspirate. This involves drawing fluid from the tube and testing it on a pH strip. The fluid should be stomach acid and should turn the strip red. There are a number of problems with this:

a.       Sometimes you can’t draw any fluid. In this case it is recommended that you lie on your left side and wait. Hopefully in about twenty minutes you should be able to draw some fluid.

b.      You draw fluid but it turns the pH strip blue. This could be for a variety of reasons but it means you cannot use the tube as you cannot be sure that it is in the right place. Again you are recommended to lie on your left side and wait, trying again later. If this still doesn’t work there are a number of ways to check the tube is in the right place but they all involve a trip to the hospital.

 
PEG

Pros

1.       It can be tucked down your trouser leg when not in use. Hopefully it will not get tangled in my trouser when they need removing but this has yet to be seen.

2.       You do not need to aspirate to check it is in the right place and it is sticking out the side of your stomach – there is no place else it could go.

3.       No one knows you have one.

4.       My throat needs to heal so being fed through a tube which isn’t going through your throat is a good thing.

Cons

1.       It goes directly into your stomach and therefore a hole has to be cut through your stomach lining to the outside world. This hole has to be cleaned and maintained – by rotating the tube – to ensure the tube doesn’t get embedded in your stomach lining.

2.       My tube only has one tap. In order to take on water whilst feeding I have to stop the feeding pump, remove the line and then flush water. This is not a difficult task but does require at least three hands in order not to have to put anything on a surface that may not be totally clean.

3.       I have been advised to use sterile water as the PEG misses out some of your stomach.

4.       It the PEG gets pulled out I need surgery to refit it.

5.       My PEG is very long and dangles down by my knee. This seems too long and has the chance that I may roll onto it in the night or sit on it during the day and displace it. I have been told I can cut it but I am not sure about this. If I do it wrong, it is surgery to get a new one fitted.

6.       Currently my PEG hurts. This is mainly because I have had surgery and a hole cut into the wall of my stomach less than three days ago. I am assuming this will stop soon.

7.       After fourteen days you have to push the PEG in, twist it round and then pull it back out again. This is to stop the thing holding it in your stomach from embedding in your stomach lining and sounds relatively straight forward. However, you have to make sure that when you pull it out it is in EXACTLY the same place as when you pushed it in. There are marking on the tube to help with this. I didn’t really understand the consequences for not doing this right but I do remember it sounded bad. Back to google for me on this one.

8.       The PEG has to be cleaned daily and checked for discharge and rubbing behind the plastic plate that holds it to your stomach. If it gets infected you need to contact a medical professional straight away.

 

I know I have only had my PEG two days so I still am getting used to it, but I do not yet see how it is so much better than an NG. Yes there are things you have to do to look after an NG which are difficult but it seems to me there are just as many things that have to be done to a PEG, and with a PEG if you do it wrong you need surgery to put it right.

Do you have experience of either of these devices? How did you find them? Did you switch between the two and if so which worked better for you?

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