Birthday Blog

I always find birthdays mark a good point to evaluate the last year. To be fair its been a pretty good one! I’m very happy to report my health staying stable…ok its not perfect, but hey, it never will be! I’m maintaining a status-quo and that’s sounds good to me!

I guess the big change over the last year has been my new job. I say new, I’ve been in the role 10 months, so it isn’t that new, but I haven’t written about it yet so its new to my blog! Last year I left my comfort zone on the chemo unit to become a breast cancer clinical nurse specialist (CNS). I loved my job on CDU and it was such a hard decision to leave, but 10 months on I can say it was definitely the right move. I was ready to learn something new but also find it is far less physically demanding, and my stress levels are at much safer levels!

So what is a breast cancer CNS? Its really hard to put into words! We support women with breast cancer when they are diagnosed, through their surgery, through chemo/radiotherapy/endocrine treatment and beyond…whatever that ‘beyond’ may be. We provide information, emotional support and a ‘link’ between all their different treatments. We are their constant. We also support a genetics clinic, where ladies with the BRCA gene mutation come to hear their options (be it living with their cancer risk or having their breast removed as a preventative measure). We then look after them if they choose to have surgery- a major decision that is a bloody brave thing to do. I have SO much respect for these women! The job is crazy hard. I have learnt SO much in the last 10 months. I could talk to you about receptors, margins,  FEC-T, risk percentages, implants, seromas, palliative care and how on earth do I tell my kids. More than this though I have learnt so much about how to talk to people…or not as the case may be. Its a cliché but being comfortable with silence is a skill, one I had to develop quickly. Communication really is the key to EVERYTHING!

Of course at the same time I have started a dissertation module for my top-up degree, as you do. Good timing  huh! I’m writing about how to support older women to choose to have breast reconstruction following mastectomy. Its pretty interesting stuff, honestly!

Add to this the ongoing pressures of being a working Mum and, well, I think I’m doing pretty f’king well 🙂 I’m upright and awake and making through each week with a smile on my face (most of the time). I juggle childcare, homework, housework, hospital appointments, work, study and yes, I’m shattered but could I have done this a year ago? probably not, so yay to me! I have even started to make time to exercise- and have tentatively signed up to taster session for dynamic flow yoga…eek!

Ryan is turning into a pretty super human being. Ok, he is no angel, and has one hell of an attitude on him, but he is also loving and energetic and happy. His ‘behaviour’ issues at school amount to not wanting to sit in his chair and being over enthusiastic in sharing his many many thoughts with his teacher so I’m not stressing. He is bright and is on track for being ‘above expected’ in all areas by the end of the year so must be learning something!! he’s an awesome ninja at his MMA class ‘ninja school’ and is amazingly focused on progressing his ninja skills (much to Daddy’s joy!!)

So yeah, I’m kinda proud of the last year. I feel like the Crohn’s journey has taken a back seat. I pop a few pills everyday, endure a few stoma leaks and occasionally vomit for England; but I’m living rather that surviving so I’m pretty content. My life may not be exciting, I can barely stay awake past 9.30 pm and rarely socialise, but I have my awesome family around me and that’s all I need to smile. I never was a ‘socialite’ anyway!

From this….                                                  To this!!

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Junior doctors…my 2 cents…

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I have so many reasons to support the action of the junior doctors in regards to their proposed new contract. I have met many docs in my journey as a nurse and as a patient. I have seen doctors cry, I have seen them angry, I have seen them numb through being too tired to carry on. What is evident in all cases is that these are the emotions of people who CARE. Our doctors are not money grabbing socialites after a few extra quid…they have chosen to work for the NHS, to devote their time and expertise to those patients needing support. They could have gone into private practice, or taken their skills abroad where the financial rewards are greater. But they haven’t. This strikes shows they care about the quality of the care they can provide to those of us who need it and that they just want a viable option to be able to keep doing what they do, provide a good level of care, and be able to support their families.

The NHS already works 7 days a week, just not at full capacity. Surgery happens on a Saturday, scans take place on Sundays, walk in centres are available 24-7. 7 day service is inevitable…but doing so with no extra resources is just stupid. In my unit we have looked at relieving the pressure during the week by working Saturdays…but one of the first things to be discussed was the impact it would have to pull staff from the week to work weekends…it doesn’t help anyone to just move the problems to another day without being able to keep staffing at an adequate level during the weekdays. Who does that help? No one? If we can see this in our little unit, why on earth can’t the folks at the top? Its just plain common sense.

It angers me the way the media are playing both sides, promoting the blogs of those doctors speaking out whilst at the same time smearing them as moneyed philanthropists. Oh no, a doctor took a week off to go on holiday, how dare they! I’m sorry Mr Hunt…how long to MP’s take for their summer hiatus? Where did you holiday last year? Don’t paint people as the bad guys because they dare to use their well earned leave for some proper rest! Tires staff make mistakes, exhausted staff will make more. Its that simple.

Of course it would be wrong to paint a picture of all doctors as well meaning, self deprecating saints. there are good and bad eggs in all professions. I have met them all. I remember an on call surgical reg making me cry by telling me there was no way I could have a post op infection because I was less that 24 hours post op. I knew the signs, I’d been there before and if he’d dropped his textbook arrogance for 5 minutes to look at the facts in front of him his answer would have been different. I did have an infection, and started antibiotics the next day (thanks to a nurse pushing for it- big props to my profession!) I also remember a lovely spr who, after several failed attempts to get a cannula in me by many people, for an urgent CT scan, took the risk of coming in the room with me to push the contrast dye into my central line, then leg it out the room before the xrays started. that’s above and beyond and I’ll always appreciate that act of kindness to get me what I needed.

Something I have learnt as a healthcare professional is things do not always go to plan. You can have your working day perfectly planned and prepped but human beings are unpredictable. A 30 minute treatment can turn into 4 hours of tests, or an emergency call if that person is unwell. Joining the management team on my unit I have learnt that you cannot and should not keep staffing at a bare minimum because it only takes one of these unpredictable events to throw everyone off target…god forbid 2 unforeseen events happen at once because resources may just not cope! Spreading our already exhausted doctors across more days with no budget to increase the workforce just wont work. people will be left in pain, others may die and, despite the government being accountable for this it will be the doctors who feel the burden, who cry for the loss and that pain caused, because they are the ones who CARE.

So I support the strikes, and I hope the voices of the nation are heard and the current plan is scrapped. A new plan is needed, one made WITH the medical workforce and agreed as safe. I fear if this doesn’t happy many of our medics will leave the NHS for fear of being left in an unsafe and unethical situation, and to be honest, who could blame them?

It isn’t safe, it isn’t fair. Save our NHS!!!!!!!!!!!

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Fan fiction..with difference!!

Sat at home feeling poorly…but once again the wisdom of the gybo folks has got me through the worst of it. So, here is a piece of ‘Get Your Belly Out’ inspired fan fiction (emphasis on fiction..this is not my diagnosis story!!)

Dedicated to the wonderful founders, admin and belly friends who support each other through thick and thin.

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She sat on her bed feeling the comforting burn of the hot water bottle resting against her abdomen. The warmth it provided was the one thing that eased her pain to bearable levels. In front of her lay a plethora of leaflets, booklets, advice cards serving no purpose other than to make her head spin and her nausea to abound. She lay back, closed her eyes and took deep breaths, trying to lull the rising wave of fiery bile that threatened to consume her. Her mind drifted trying to make sense of the last few days.

‘I’m sorry, please explain that again…I just don’t understand’.

‘Crohn’s disease. That’s what has been causing all of your symptoms. Its all there in the leaflets, if you taken them home to read you’ll understand much better. Come back in a few days and we’ll discuss treatment options.  I’m fairly confident we can resolve this without the need to resort to surgery, but we can see how we go and review in a few months. Right, go next door for your bloods, and here is a sample pot…we must see your calprotectin levels. Oh and make follow up on your way out. Ok? ok’

Feet on autopilot she got up and walked from the room, following her instructions to a nurse who told her ‘just a small scratch’ before stabbing at her arm several times. ‘Oh dear, you really don’t have the best veins do you dear! Try to drink more before you come next time ok? ok.’ No time to tell her that she did drink lots, but its all dwelling in the 3rd floor bogs after a nasty cramp attack on the way here.

She stepped out into the fresh air of the hospital car park, drinking in the coolness to steady her. She shoved the stack of literature into her backpack and ran for the comfort of home. It took 2 days to pluck up the courage to read any of it and even then her brain couldn’t process what it all meant for her. Alien words like ‘illeostomy’ ‘immunosuppresant’ and ‘elemental diet’ overwhelmed her. The only part her brain could focus on was that crohn’s is an incurable illness. Incurable. Was this ii, was her life over? She had so many plans, what would she do now? Hot burning tears cascaded down her cheeks, her stomach churned and cramped and the familiar gripping pain took control. She fell to the floor winded and lay clutching her knees to her chest until the pain dulled to a throbbing bruised ghost of its former self. She crawled to the bed and fell into a fitful sleep punctuated by nightmares of hospital rooms, surgeons knifes and a life lost to bitterness and pain.

Its amazing, she thought, how alone you can feel whilst surrounded by people. She had returned to the doctor accompanied by her partner, who now seemed too distant to touch. He squeezed her hand as the dr described medications, liquid food and treatment plans but she felt numb. She listened and and nodded, she took the prescription slip and picked up the pills, but deep down she was lost. Incurable. The word haunted her, twisting through her thoughts like a python squeezing the joy out of everything. Her family tried to reach her, but how could she explain? How could they understand? Simple pleasures such a eating were now reduced to a medicinal bottle of gloop yet the pills made her so hungry she could cry. How can anyone else comprehend such a feeling?

In amongst the pile of leaflets she suddenly spotted a beautiful purple ribbon design and dug the sheet out from the tower of papers. There was something different about this one, she remembered picking it up in the waiting room because the design had caught her attention. ‘Get your belly out’ it said, a support group for ibd sufferers on facebook. On facebook? These people must be young like her. Maybe, she thought, maybe I should have a look.

What she found she had never expected. Hundreds, no thousands of people suffering the same way she was. More than that, there were people living their lives with her illness, not existing but living. Amazing. As she scrolled through the posts her eyes stung, but these tears were different. she wept with relief. A huge burden lifted that she was not alone, she was not disgusting and she could read about people in relationships, with children working and playing and enjoying life to the max. She saw pictures of bellies big and small, with bags, with scars, with purple ribbons tattoed on them. She smiled.

It took a few weeks for her to feel confident to post on the board saying hello and telling her story. She was immediately rewarded with a host of friendly faces saying hi, sharing their stories and welcoming her into the family. For that’s what they were, a family. Sharing the dark and the light with these people who just ‘get it’ helped her reconnect with her own family. No, they could never understand how she felt, but they could try. She took her partners and and felt the warmth return to her heart. she sobbed, he sobbed, they embraced and the walls fell away.

‘Incurable’…maybe, but she was in this fight for the long haul and she was ready to tackle it with an army of beautiful bellies beside her.

Humbled and inspired

Well…I have to say, at this very moment I’m a little bit in love with my job 🙂

On Sunday the very 1st UK Cancer Survivorship celebration happened at Guys. These kind of celebrations have existed in the states for about 20 years but never caught on here. The main event of the day was a fashion show, with patients, family members and even some staff strutting their funky stuff on the runway. Along side this there was music, information stands, games, face painting, and a ‘tree of hope’ for people to place tributes to those who didn’t make it through their cancer journey. At the end of the day we had a live handover to the survivor day in Baltimore, USA via video link. The whole thing was very moving and it was an absolute privelidge to be involved.

Myself and colleagues from the day unit and our outpatients department  hosted a ‘CDU/OPD’ stall at the event…the requirement was for it to be upbeat, interactive and fun…a challenge when you work in the chemo department. how on earth do you make chemo fun?? Well we did our best…

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We had pictures of all the staff on the unit (which made me possibly the most hated woman on CDU in the process..nurses do not like being photographed!!), a giant drip stand for people to hang their experiences and thoughts about the service on, and a scalp cooling challenge..with cupcakes as prizes!

For those that don’t know, scalp cooling is a system used by some chemotherapy patients to reduce the hair loss they experience. Its a silicone cap full of ice cold coolant (minus 5) worn throughout each treatment. Its reduces the atrophy of the hair follicles and therefore prevents hair loss….in theory. Sometimes it works, sometimes it doesn’t. Multiple factors effect the success rate, not least being the patient’s ability to tolerate the cap. Its cold..I mean really cold. Like having an ice cream head ache continually for 3 hours.

Something many patients have said is that they wish their relatives could know how it feels. This is what happened on Sunday. patients partners, sons, daughters, staff and anyone brave enough to try it got to feel just how uncomfortable wearing the cap is. If they endured 3 minutes they got a cupcake. I wasn’t sure how it would go down, but actually lots of people were brave enough to try it.

Loads of staff from the 2 units came and joined in on the day. It was wonderful to see everyone pulling together for such an inspiring event. It was nice to see colleagues out of uniform, and having fun. I feel it really did help us to bond and feel happy together as a team.

We managed to come 2nd in the best stand competition winning ourselves some prosecco and choccies..so we must have done something right!!

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By the end of the day I was well and truly shattered…being on my feet for 8 hours and not thinking to stop and drink meant I felt pretty ill by the time I got home. I don’t really think I have recovered fully yet! But it was really worth it.

I’ve been floating round on a high since then..but in stark contrast I attended a funeral today for one of our patients. She had been a patient of our Queen Mary’s service ever since it started so we had got to know her very well. She was an endearing and generous person who became such a known face that she was almost part of the team. She sadly passed away from her cancer 2 weeks ago, and will be missed by many, not least her doting sisters. It seemed like the right thing to do, when we received the invite, to attend the funeral to show how loved and respected she was. It just so happened I had leave booked today- so it was meant to be. the funeral was beautiful and her sisters were so grateful we made the effort to attend.

I have never attended a patient’s funeral before. I guess the small, local Queen Mary’s service has allowed us to get to know patients better and to provide a proper holistic service to them. It is not something I would do regularly, but for someone with a special place in my thoughts, it seems like a good way to show they were more than just a hospital number to us.

So, it has been an emotional few days. Nurses are often portrayed in the news as uncaring people who care more about their paperwork than the patients. Who are ‘too posh to wash’ and don’t value basic human rights. These last few days have proved to me this could not be further from the truth. I am surrounded by colleagues who genuinely care for people and who give their all to ensure patients receive proper dignified care. My unit cannot be unique. there are thousands of good care providers out there who are living under the shadow of government enforced cuts, bad press and increasing demands and STILL make the time to hold a patient’s hand when needed, to offer words of comfort and go above and beyond to ensure people get exactly what they need.

This is why, today, i love my job.

To all my fellow nurses I send a virtual hug.
To all my fellow patients, I ask you to just give an extra ‘thank you’ to the people who look after you..because the only people it really matters from is you. The patient.

My IBD day blog….

Hi gang!

So everyone in the IBD community managed to post a fab world IBD day blog yesterday..except for me! I was at work, hmph! So it may be a day late, but here is my contribution!

Yesterday was indeed world IBD day…a day to raise awareness and try to add some funds to the pot. It was great to see everyone pulling together to flood social media with purple pics, belly selfies and all things IBD.  really does remind you what can be accomplished when the team pulls together! Several public buildings around the UK (and abroad I believe) joined in by lighting up purple..how amazing is that! Its just a little sad that our own capital city failed to take part. I did contact the London Eye, but they said no 😦

Messy big linky below to the CCUK site with pretty pics of purple buildings!!

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It makes me feel all fuzzy and warm inside to read so many people’s stories and discover their journeys with Crohn’s. It is interesting  how many are very similar to my own, but others are so so different. I have learnt about complications and spin off illnesses that I never knew existed and I have come to realise that my lot ain’t so bad. I have SO much to be thankful for! One of those things is my amazing IBD team. Being at St Marks, I realise now, is a privilege. I have at my disposal an IBD nurse specialist team..a whole team of them! Some, people don’t even have 1 nurse specialist to go to. It means when I call, they answer. if I have a problem, they help. I had no idea that this level of care is lacking elsewhere. It has shocked me to find fellow sufferers may have NO NURSE AT ALL! That seems criminal to me, and really highlights that the ‘postcode lottery’ still exists. Ok, so I had issues with the inpatient care I received. it wasn’t great..but it wasn’t through lack of care, it was through lack of staff and resources. (An issue I expect to see get worse, not better over the coming years). Overall my care is amazing, and I am so grateful for that!

Now in fitting IBD style I spent the day ‘prepping’ for one of the many lowlights of suffering with Crohn’s…..scope day. *shudder*. Oh yes, having downed a quick ‘light lunch’ at midday I then had to banish all real food from my diet, followed by the harrowing ordeal of taking meds to make the world fall out of your arse..or in my case into your bag. Its pretty horrendous. In fact I’m pretty sure the ingredients are similar to the stuff used to de-limescale kettles!! ‘citric acid’ features highly in both products and it has the same crazy fizz going on! Lovely! My scope isn’t until 3pm today, so I’m using this blog to distract me from the hunger pangs! ****drifts of into a daydream about coffee and muffins**** Where was I????

Although I do have not note, that following the prep and being completely empty I can say my belly doesn’t ache at all for the 1st time in months! Kinda worrying that the only way to be pain free is to having nothing in me…hmmm, lets hope today brings some answers!!

In other news…we have a mini-holiday this weekend, hurrah!! We are heading to Camber Sands with my Sis and the troops to enjoy a couple of days of relaxation (of sorts) fun (of sorts) and sunshine (heres hoping)! Even if the weather is foul the caravan park seems to be filled with cheesy kids entertainment, and if the munchkins are happy we’ll be happy. I may have packed a bottle of wine to ease the process along too for the adults 🙂  Huzzah! It couldn’t come soon enough, to be honest. I’m pretty damn shattered, work is hard at the moment, Ryan is being a bit difficult, and I just really need some time out!

Anyway..I’m gonna sign off..sorry its ma bit short and uninspirational….My brain isn’t functioning properly due to lack of food..or more accurately lack of caffeine..normal function shall be resumed soon!

Sending big love to everyone xxxxxxxxxxxxxxxxxxxxxxxxx

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balls, bags and a bit of boogie!

Hi peeps,

I find myself starting another blog post by apologising for a distinct lack of writing in recent weeks. I’ve been busy! Turns out that even 9 months post surgery my energy levels have not got back to normal. I’m now starting to doubt they ever will and have come to terms with the fact that tired beyond belief is just gonna be my natural state. Full time work + crazy 6 year old +studying+ actually trying to have some fun = seriously knackered me!

I should be at work today..instead I am at home hugging a hot water bottle. I had a barium follow through xray yesterday which was rather unplesant! The actual xray was fine and showed my small bowel is healthy, as is the join where they closed my illeostomy, yay! Unfortunately the minute the barium hit my mini colon I was in pain…by this time I was home, but to me it shows my continuing problems are colon related…an issue I can discuss when I see my consultant in a couple of weeks. So I’m sat here mainlining warm fluids and hugging my hot water bottle, despite it being really warm today, in the hope I can make the passing of the barium yuckiness less like being in labour!!!!!!!! Ouch!!!!

Anyay, onto the point of my post! I have a couple of things to discuss, lets start on a positive. On March 28th I spent the evening surrounded by a bunch of amazing inspiring beautiful people. It was the 1st anniversary ball for the #GetYourBellyOut campaign. I was really nervous about going, I’m not the most sociable of people and find being in a large group torturous. From the minute I arrived I was overwhelmed by just how friendly and supportive everyone was. We were all there for the same reason, we all struggle with, or love someone who struggles with, the same illness and have all gained something amazing from the campaign. It was so nice to be able to hug the founders (well 3 of them at least) and say a proper thank you. I met so many people I have chatted to on the forums and was truly overwhelmed by the whole thing. everyone had made a huge effort to get dressed up and we were, if I do say so myself, a beautiful bunch of people!

See for yourself!

DSC02419 The beautiful founders of the campaign, Sahara, Gem and Lorna (minus a very much missed Victoria). Love these ladies and have so much respect for them!

DSC02430 So much so I accosted them where possible for hugs!!

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One of the highlights was Corinne performing her wonderful charity Single ‘Just A Part Of Me’. Not a dry eye in the house! Beautiful!

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https://www.youtube.com/watch?v=EXUAKFEPOCk&feature=youtu.be This is a link to a video made on the night. If you fancy buying the single just follow the itunes link on the video. It really is a beautiful song 🙂

I left the ball feeling content, happy and very much inspired to keep on the fight to raise IBD awareness and funds for CCUK to help progress towards a cure for this awful disease. In fact I came home and signed my little family up for the CCUK walk in June….I’ll be posting a justgiving page in the next few weeks! 🙂

Isn’t it amazing what a difference can be made when people come together for a common purpose? think how much we could change this world if we all had the determination of these girls!

Unfortunately my high from the ball has been somewhat dented by a seriously awful advertising campaign.  The centre for disease control in America has produced a shock tactics add to encourage people to stop smoking. It highlights the risks of bowel cancer, and uses a woman talking about the worst part being having a colostomy bag. Its an awful advert that anyone living with a colostomy will find degrading and offensive. I’ve put the link below if you want to see it…

https://www.youtube.com/watch?v=CH227AouFEw

It makes me mad that we can work so hard to raise awareness and increase the self esteem of those living with a stoma, only for an ad like this to set us back. I get it, they want to shock people into quitting smoking, but 2 seconds of thought into the effect on those with a colostomy for a variety of other reasons would have made them change their approach. or maybe they just don’t care. Its disgusting.

 

Ok, so I’ll stop ranting now (well for a little while anyway). Spring has definitely sprung and it really does lift my spirits to see the flowers start to bloom and the garden come to life. We built  a raised bed in the garden at the weekend to try and make our veggie growing more successful this year. I still hold onto the hope that if we grow our own veggies Ryan might actually eat them. Time will tell!

Love to you all,

Cassie****

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pain the a*se

Pain. Now there is a topic.

I’ve been thinking a lot about pain recently, and what a personal, individual experience it is.

I honestly believe that no two people experience pain in the same way. I think how we feel pain is shaped by our past experiences, genetic factors and our emotional state. It is such a hard thing to quantify- How can we research and document pain when it relies on someone describing what they feel…this in itself is subject to so much variance and interpretation that any scientific definition of pain must be flawed.

For example…if I asked yo to describe and apple you would all tell me something different. Similarly, if I stuck a needle into your thumb (which I promise I wont) and asked you to tell me exactly how if felt, your responses would vary. the exact same amount of pain administered provokes a very different feeling for that person. maybe one of you has had a bad experience with needles and the fear of what I’m doing amplifies the pain. Maybe another person has a stinking headache at the same time, so the pain of a pinprick is nothing by comparison and diminishes the effect. It is all open to interpretation. I can approach two different patients and cannulate them in the exact same spot with the same type of needle and have one barely flinch and the other hit the roof and scream. (I stick needles in people for a living..yes, i have had people scream and cry at me..it isn’t pleasant!)

This is why it bothers me to see people being judged on their experience of pain. I have a pretty high pain threshold. I’m pretty sure this is down to years of forcing myself to function whilst experiencing hideous stomach cramps..you learn to push the pain to the back of your mind and to dull its effects. I can sit and endure endless attempts to get cannulas into my veins, or to get blood out of them, and barely flinch because I’m used to it…but I would never use this as an excuse to belittle someone else’s pain. Just because I can endure it doesn’t mean someone else can…that is not to say I’m better than them, just different. equally that person may handle an emotional burden much more elegantly than myself..its all about personal strengths and weaknesses.

I remember in my student nurse days reading the WHO anaglesic ladder…a prescriptive model for how to escalate pain meds for patients. You start at the bottom with paracetamol..if that doesn’t work you step up the ladder to a stronger med…if that doesn’t work step up to opioids etc… (ok, so I can’t remember the specifics, but that is the gist). As a student nurse I thought it was great, a clear model to help guide me to make the right choice when helping to ease someone’s pain. I look at it now, as a more experienced practitioner and a very experienced patient and see it as a shackle, rather than a guide. I’m sorry, if I stagger into a&e with abdominal pain and someone hands me a paracetamol simply because thy have to start at the bottom of the ladder they are likely to find that pill shoved somewhere rather unpleasant! If I have got to the point of actually agreeing to go to a&e we are waaaaay past the paracetamol stage. If i tell them It wont work I want my opinion respected as I KNOW my body. they don’t. End of.

I am sick of hearing stories of health care professionals belittling patient’s opinions, or doctors and nurses with an ‘I know better than you, I have a qualification’ attitude. I strongly believe that a patient knows their body  best and it they say no that wont work then we really need to listen to them, respect them. RESPECT- thats the real key!! If we have a rational adult discussion about why they feel it won’t work we can come to a joint decision on the best course of action. Together.

I guess this is forefront in my mind as I have been experiencing some pain again recently. I thought it was gone..it isn’t…but I live with it, I function. Am I 100%? no…but I’m getting by. The pain is nothing compared to what I have dealt with in the past. its a minor annoyance its like my bowels are saying ‘hi, we’re still here, we thought you’d forgotten about us so we’re having a little squash and a squeeze to remind you we’re here’…as if I could ever forget about you my beautifully flawed dysfunctional gut!!!

I was on the bus the other day and a lady sitting behind me was ranting and raving about her sore elbow..she’d banged it on the pole in the aisle as she staggered to her seat and decided the whole bus needed to know she was in agony. I judged. I sighed and huffed and thought she was a numpty..but then it got me thinking…who am I to deny her feelings. She clearly is experiencing pain, or she wouldn’t feel the need to shout about it. Just because I don’t think that qualifies as real pain, doesn’t mean it isn’t there. I think more health care professionals need to stop and think before judging another person based on their perception on what is an acceptable level of pain. ‘you’ve had 2 co-codomol, you can’t still be in pain’…well yes, I am, do you think I’d say so just for fun? clearly your idea of high jinks is very different to mine. Id like to be pain free please..that would be fun?!

Ok..so someone is now going to reply about professionals having to be careful about enabling drug seekers who say they are in pain….you know what, these people need help too..just a different kind of help. All I’m saying is maybe we need to consider that everyone is different and experiences pain, love, sorrow, joy in a very different way. Once we accept that, surely we can all do a better job?
So thats my thought for the day….sorry I have rambled. Just needed to be said.

One more thing….I have a very talented friend who has written and recorded a song. How cool is that?! Even better its a charity single for the #GetYourBellyOut campaign. Even better, its really rather good!! I defy you to listen and not well up!
Its only 79p on Itunes so I ask anyone who reads this to please, spend a little money on a very good song for a fabulous cause…Thankyou 🙂
japom

Ramblings……

So, fatigue is kicking my butt today…what better time to get down to some writing!

I got a new book. A friend posted about it on a forum and it looked like fun so I got one. its called ‘trash this journal’ by Keri Smith. The idea is to open it at a random page and do what it says! Things like ‘lick this page’ ‘crack the spine’ collect W’s here’…ok, sounds a little inane when written like this, but it has forced me to do things my controlling brain is not comfortable and I think this is good for me!! (having said that, i still haven’t been able to bring myself to crack the spine!!!) its only n recent years that i have decided I have slight control issues. my husband would probablly be the 1st to nod knowingly when I say that. I like to have a plan. I like things to go according to that plan. I don’t ‘do’ spontaneity! I’m that person who knows on Monday what her weekend will look like. I send my hubby email at work that start ‘so, on Saturday we can go to homebase to but those shelves, then go on to the park so Ryan can run round. i think I’ll make ham sandwiches for lunch, then in the afternoon we can…….’ So to be told by my book to ‘roll the ournal down a large hill’ gives me palpitations!

 

Still, its good to challenge ones nature and push yourself past your comfort zone..isn’t it?? I’m trying to do this at work. I need to relinquish some of the control over certain aspects and take more of an active interest in others. As deputies we are going to be taking on more people management stuff in the next few months. This is way beyond my comfort zone. I might have to tell people off! I might have to be the disciplinarian! oooh no! I struggle to do that with my 6 year old!! Its going to be a challenge…but hey, whats the point in always doing the things that come naturally? *dons stern gaze*

In other news, my health still isn’t great..back to pain and limited diet for now…so fed up of soup already!!!!! My team at St marks are fab. ok so the inpatient care there is dismal, but the outpatient care is astounding. i emailed my IBD nurse Thursday to say i was having a hard time, I had a loooong call back on friday with the promise of a plan by the end of this week. Today i get another call, after a discussion with my consultant, and am being booked in for scans. I also was given the reassurance that if anything gets worse in the meantime they are only a phone call away…and i believe them! My IBD nurses are a-ma-zing. Nothing is too much trouble for them, and they always follow through with their promised actions…something that is alarmingly rare in the nhs! I hope that I have the same impression on my patients. i try to never promise something that is un-achievable or give false hope…sometime a ‘I have no idea, but i can find out’ is much more reassuring than a load of waffle that is clearly bull!

 

Today…on my rest day from work…I have laid aside my plans (well, most of them) and am sat on the sofa, under Ryan’s lovely tractor blanket, drinking tea, watching telly, and writing on here. yes I have logged into work emails once…ok twice, to check on my day tomorrow, and I have cleaned the kitchen…but believe me that is restful for me!!

So I’m going to sign off..having not really said much! lol! Time for a quick nap before taking the young one to his swimming lesson..oh joy!

 

Love and hugs xxx

new beginnings…

Hi Gang,

So…its been a crazy few months which hasn’t left much time for blogging, which means there is lots I’ve been wanting to say that I’ll try to squeeze into one post without sending anyone to sleep!!

Christmas happened. That was fun! Now, I think I’m a bit of a stress junkie because, despite coping with going back to work and everything else, I decided it would be nice to do lots of homemade goody pressies. Which meant  lots of planning and lots of cooking! Now, it was all worth it to see how much these gifts were appreciated…but my word did I stress over it all…have a lookie at what I made…

Chrimble cakes..fed with plenty of brandy 🙂

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homemmade hampers…1st one was for mys sis and her Hubby, which had chutney, pickled onions chilli salt, chilli oil, a golden ticket (We’d bought each other theatre tickets so we can all go see Charlie And the choc Factory) and a couple of bought items.

 

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2nd hamper was for my Mum…Chutney, chilli oil, chilli salt, ginger chocs, mug painted by Ryan with hot choc and marshmallows inside…and a few shop bought bits.

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Then, of course, I made a few things for us!! Homemade mince pies (vegan friendly…sadly the filling is from a jar!) and elderflower wine, which is yummy!!!!

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I’m not quite sure where I found the time or energy to do all this….but it does explain why I haven’t had time to blog! I find making stuff therapeutic. No matter how hectic things get it is really relaxing to disappear into the kitchen and create something. Ryna helped with a lot of it and I think he really enjoys it too …ok, he enjoys licking the bowl and eating ingredients as we go, but thats part of the fun! I remember fondly baking with my Mum when I was young….seeing your cake or biscuits come together and smothering them in icing always was, and shall always be, an absolute delight 🙂

So, work, well, what can I say! I can’t say I have found it easy…but I can say I am enjoying being back. I love being back with the patients and contributing to their experience of our service. it was lovely to have collegues and patients say I’d been missed, and great to still have people come to me for advice and not assume I’d forgotten everything in 3 months off! It is, unfortunatley, really stressful, and I’m finding it hard to disconnect from that stress when I get home. I almost wish I couldn’t access my work emails at home because on my ‘rest’ days I’m logging in to check everything is ok. We have set up a small satellite service at another local hospital and I have picked up the lead on it. Its a lovely unit to work on, but a great responsibility to ensure it runs safley and smoothly…quite a burden to carry. I had a wobble that I was the wrong person to lead on it, that I wasn’t good enough, especially as i’m still not 100%  but, after a few words with the powers that be, I have realised my main fault..not admitting when I need help. As a junior sister of course there are going to be aspects of running a new service that are out of my control and, to be honest, above my pay grade to deal with. I have to learn that there is no harm in admitting I need advice and help from time to time…those of you who know me well will realise that this is a challenge for me!!!!!!!! I’m working on it!!

 

My family are still my strength. Ryan is blossoming into such a gorgeously conscientious young lad. I’m so proud of him. Ok, hes a typical 6 year old who finds farts hilarious and thinks kicking me on the bum is acceptable play fighting and his bedtime issues are getting worse instead of better..but we’re dealing with it, and the happy times far outweigh the hard times (and sometimes, I’m even wake enough to enjoy them!) I wonder what my hubby would say if he were writing this blog, if he’d say it has been a hard year coping with an ill wife, a boisterous kid and a full time job..but his year also has featured promotion at work and discovering that his son is old enough to share his passion for computer games..so it hasn’t been all bad!

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So..my Crohns…yup, not a post goes by without a mention of the ‘c’ word. Its worrying me. For a few days now I have had familiar rumblings…a dull aching pain, slight nausea, very loud grumblings…and it worries me, of course it does! In theory all the affected bowel has been removed, but we know this means diddly squat when it comes to crohns..because its a cheeky disease and decides to set up shop elsewhere when it has been evicted! My other worry is strictures…bloody stupid strictures..they have been the bain of my life since my 1st surgery. So surgery removes the diseased bowel, but where they rejoin it together scar tissues can form, which narrows the bowel where can tighten and get stiff and cause partial or full blockages. Very painful and often they have to be removed, which can cause more stricures to form..vicious cycle! I feel like I may have one developing. the symptoms are very similar to ones I’ve had before…but for now I am choosing to dismiss this thought and believe that actually..I’ve just eaten too much Christmas cake full of dried fruit, which I’m struggling to digest. Its plausible, for now, and if in a month things are the same I’ll re-evaluate. I’ve learned that the head in sand approach achieves very little, but its hard to change the habit of a lifetime!!

of course, this’blip’ pales in comparison to the plight of many fellow sufferers. SO many of the people I have come to care about greatly on the #getyourbellyout forum have been very poorly of late..winter seems to be a bad time for many of us, I know most of my lowest points have been arourd the festive season, and my heart goes out to them. Despite this we have reached a HUGE milsestone this week. the campaign has passed the 20k mark…yes, MORE than twenty THOUSAND pounds has been raised by a group people brought together purely by the desire to raise awareness of this horrid illness. How fan-bloody-tastic is that? Do we need any more proof that power of the people can have an effect. Its mindblowing, and with a 1st anniversary ball planned for March I have hope that this is really just the beginning…I feel this group can do amazing things for awareness, for charity and for each other..as long as we all stick together and remember why we are all there. thats what a support group is for, right??

 

So yeah, 2014 has been a bit crap. Its been dominated by illness, surgery, tiredness….but I have made some lovely new friends, realised that I am a valued member of the team at work and kept my family plodding on…with a very happy smiley young lad who displays much more confidence and vigor than I have ever had..so thats an achievement!

I raise a glass and smile at what this next year will bring. it wont all be easy, but I’m gonna make every second count. if there is 1 thing I have learnt in 2014 its never take anything for granted..because who knows what tomorrow will bring?

 

Love to everyone xxx

good day..bad day…

Soooo, again, its been a while! It takes a lot of brain power to sit and write coherent sentences…brain power which seems to be evading me at this present time. I think I left it on the train somewhere, if you find it please return it, I miss my brain!

Anyway, I thought I’d post about the good and the bad of recent weeks! I’ll start with the good.

On Saturday I met up with a friend to go to the BBC Good Food Show. I’ve never been to anything like it before, but was keen to give it a try. I’m so glad I did! It was a loooong day and utterly exhausting but it was so much fun! We arrived at about half 10 and went staight to the ticket stand. We already had a ticket to see Mary Berry and Paul Hollywood, but wanted to see if we could get tickets for Tom Kerridge’s show too..we could, which surprised me! We also managed to get fab seats (I’m guessing now most people didn’t want to hang around until 5pm as by then we had kinda had enough) Whilst booking these we were asked the rather silly question ‘do you like wine?’ ummm, d’uh! who doesn’t! They had spare tickets to a wine tasting and were giving them away free, good start! So at 11am there we were looking at a wine tube map and tasting everything from Riesling to Shiraz . It was actually really interesting, I learnt a lot about why I like the wines I do..and  broadened my horizons a little, so it wasn’t just a case of ‘wahay free booze!’

20141115_114925 quick plug for the creator of the map. Its a brilliant idea. Each stop is a different variety of wine so you can go to one you know you like and see what is similar, where varieties cross over and make an informed choice when trying something new. genius! more details here.

So from here we had to leg it to the theatre for our slot to see the Bake Off gurus (Mary Berry and Paul Hollywood). They didn’t bake..but they did cook a fab main of chicken with spinach and a lemon posset pud. Yum. The banter was fab (interestingly Paul H was much more comfortable with the chit chat than Mary B) and it was an enjoyable 30 mins..even from our seats way way at the back!!

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Then it was time for shopping!!!

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There were sooo many stalls packed into the hall, most of which were giving out samples! I have never tried so many different cheeses, chocolates and tipples ever. I really enjoyed looking at and trying different things. I had my 1st taste of macaroons…of which there is no photographic evidence because they got scoffed by myself and the boys the second I got home!! I was amazingly restrained with my shopping, although I do regret a few of the things I talked myself out of buying..oh well, there is always next year! By this point we were both shattered. The hall was busy and hot and oppressive so we took refuse outside in the fresh air. All the samples had made me a little queasy and I was very grateful for the gush of soothing cold air as we stepped outside! Then it was back in one last time for the Tom Kerridge talk. Which was fab! He has a natural banter and made everything look and sound so easy!

20141115_170518As you can tell from the pic we had fab seats…only problem was I was so tired and it was so warm I wanted to fall asleep!! How embarrassing right at the front!

All in all it was a fab day. I came home with some lovely goodies, a belly full of samples and having had a good catch up with an old friend. Perfect!

20141115_201008 my haul! (mini liqueurs, cold press fruit/veg smoothies/posh tea/xmas cookie cutters/star plungers/muffin mix for Ryan/spices…oh and macaroons in my belly!)

Of course it all had more significance for me because in years gone by this would have been a depressing day out looking at things I couldn’t eat or drink! Yes, I made myself a little nauseous trying too much rich food but I didn’t spend the day in the loo, or in pain, or sat in the corner watching others have fun…progress huh! up yours Crohns!

The only downside is the day seems to have killed of the little energy reserves I had. I am SO glad to still be on reduced hours at work because I am already struggling and it is only Tuesday! Shame there is no caffeine in that haul of goodies!!

 

So that was my good news. Bad news is, once again, IBD related. As if it wasn’t a difficult enough illness to cope with image wise, I now have to deal with my hair falling out. 😦 This has been happening since the surgery, but has stepped up a gear in recent weeks. Even Ryan comments on finding Mummy’s hair everywhere around the house!  It is really distressing!

I feel like a hypocrite. Part of my job is to counsel patients before starting chemotherapy treatment and one of the most frequent questions is ‘will I loose my hair?’ and more than half the time the answer is ‘yes’.  I then have to tell them not to worry because it will grow back..even though it may look completely different and that the treatment is more important. Its just hair. JUST hair….and now I sit here with tears in my eyes because I can’t face the idea of loosing my own hair. I am told it is a stress response, that it should start to come back in the next few months and ‘don’t worry, its just hair’. I had no real idea how emotional hair loss can be. I guess as a curly haired ginger it has always been a huge defining factor for me. People constantly comment on the colour, the thickness, the luxuriousness of my hair..so to loose it is a huge deal. I am embarrassed to be so upset because I am not a vain person, l don’t judge people on their looks so why should I be bothered by mine? However I try to rationalise it, it does matter and it is upsetting and the one good thing to come from it is that I will approach the subject in a much gentler way with my patients. lesson learnt..can I have my hair back now please karma?? So..now I’m off to invest in some hats. The weather is getting cold and I can feel it on my bald patch! Brrrr!

 

I also have to say I feel awful moaning as I know some beautiful people going through a really rough time. As you know I am part of the #getyourbellyout campaign. Although I have physically met very few of the people I feel so close to them as we all understand what each other are going through and everyone is so so supportive. It really is a beautiful community. Because its a group of IBD sufferers people inevitably get sick. Really sick. It breaks my heart that I cannot fix things for them. I have got to know some of the strongest most amazing people and feel genuine sadness to see any of them in pain or suffering. It really brings home to me why we need to keep trying our hardest to raise awareness get people to understand that IBD is not just a tummy ache. I see people fighting for their lives (and that isn’t me being dramatic) people having their dreams crushed an struggling just to make it through each day. I see this and I am so grateful that I am coming out the other side of my ordeal and can see some kind of normality returning to my life. Yes I feel like crap today, I want to curl up in my jammies and sleep for the next month,but I CAN drag my ass out of the house when I need to…so I should be content.

Much love to any bellies reading this..can’t wait to meet you all at the anniversary ball next year!!

 

belly1

 

 

 

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