Tag Archives: patient

Hospital Cheer…Thursday Doors.

Welcome to Another Thursday Doors.

This week’s Featured Door is attached to the Respiratory Investigation Unit at Royal North Shore Hospital, Sydney.

When you think about having a Merry Christmas, the last place you want to end up, aside from the local morgue is in hospital. That also applies to the weeks leading up to Christmas where it seems like the rest of the world is floating in bubbly and doing the Christmas party circuit, while you’re shuffling from appointment to appointment. That’s not all bad if it’s all routine, good news and you can wipe all that off your radar.

However, it doesn’t always work out that way. Six years ago, after my auto-immune disease flared up again and was resisting conventional treatment, I found out that they were bringing out the big guns and I was having chemo for Christmas. Yet, while this might seem like the worse Christmas present EVER, we actually viewed it as a blessing, a heaven-sent answer to prayer, and not a curse. They could do something.

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I wasn’t intending to revisit this journey today for Thursday Doors. Although I had lung function tests followed by an appointment with my lung specialist, I was intending to focus on my apres-appointment trip into the city (Sydney) where I photographed oodles of intriguing, eye-catching and even historic doors.

However, before I sorted them out, I wanted to acknowledge the efforts hospital staff have made to brighten up the place, trying to lift your spirits through what are often very traumatic, bleak and desperate times. News you don’t want at any time of year, but especially not at Christmas. Bad things aren’t allowed to happen over Christmas. That should be written into the fine print. Moreover, you wouldn’t be the first person to try to sue God either. Do you remember Billy Connolly in The Man Who Sued God?

Anyway, when I turned up for my lung function tests today, they’d decorated the doors for Christmas and clearly I had to take a photo for Thursday Doors.

I still remember when I walk out of those doors when I was first diagnosed with the fibrosis, and was absolutely distraught. My kids were only seven and five at the time and obviously needed their Mum. I felt bad if I was even five or ten minutes late to pick them up from school, and it was incomprehensible that I wouldn’t be there to pick them up at all. I left the lab with a single tissue and ended up in the hospital chapel sobbing my heart out, and there wasn’t a single tissue in the place. As hard as that tissue tried to cope with the deluge, it was overwrought. I ended up having to sneak back into the hospital toilets, get myself together and buy some tissues. I distinctly remember saying I had hay fever. What a duffer. A year or so later, when things deteriorated, I burst into tears in the hospital shop and the pink ladies rallied around me with such love. They were beautiful.

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Christmas Decorations in the Northern Cancer Centre. I think they’re Santa Kangaroos.

Anyway, as I mentioned, my specialists decided to treat the flare up using a chemotherapy drug called cyclophosphamide, which then introduced me to the Northern Cancer Centre on level 1 for my treatments. While I was there, I found out they had a resource centre and I came across a series of work booklets put out by the Cancer Council. These were really helpful for dealing with those really hard questions around death and dying, especially for families with kids. I was mentioning these booklets to a friend recently and that’s what brought me back to lvl 1 today. _DSC7625

Christmas Raffle at the Northern Cancer Centre downstairs.

Having photographed the doors upstairs, I asked the staff if I could photograph their Christmas decorations. I felt like a bit of an idiot, but I wanted to back up the doors upstairs with a another example of how the hospital was getting into the Christmas spirit. Anyway, much to my delight, they upped the anti and asked me if I wanted to have my photo taken in their elf frame. Being an irrepressible extrovert, of course, I jumped at the chance. It was a lot of fun.

 

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Before I head off and while we’re talking about the hospital’s Christmas celebrations, when I was there on Tuesday, a jazz band was playing the foyer and it’s something they’re doing during December. I couldn’t thank them enough. I’d actually just been to see a friend and it was an emotional time. So, it was really therapeutic to listen to the beautiful music and feel soothed. It was so thoughtful!

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Well, I realize that talking death, dying and hospitals is a rather gloomy subject at this time of year, when I reflect that I’m still here six years later and in reasonable health, it actually becomes a celebration. A good news story which might touch somebody else’s troubled heart with a touch of hope. After all, as much as we might not want to be in hospital, the alternative is far worse and rather permanent.  So, I’d better close off this Thursday Doors with a huge shout out to all the doctors, nurses, physios, OT’s and support staff who help get us back on out feet and out the door.

This has been another contribution to Thursday Doors hosted by Norm 2.0. Why don’t you come and join us and share a few of your favourite doors. It’s a lot of fun and helps you see parts of the world you’ll never get to visit.

Best wishes,

Rowena

Playing Doctor and Patient.

After yesterday afternoon, I’ve concluded that playing doctors and patients is over-rated. That as much I enjoyed playing it as a kid (and without any kind of innuendo), that it’s no fun in real life…especially when your child has had an accident. All of a sudden, you need to be the strong one, her rock, when you’re nothing but jelly. You can barely breathe. Yet, your alter-ego is supportive, loving, encouraging.She’s holding her hand, exuding calm, while you’ve completely freaked out.

Yesterday afternoon, our daughter was walking back from the station when she walked into a pole quite hard. Her glasses cracked and the edge of the lens sliced into the edge of her eyebrow. It was a nasty cut and needed immediate medical attention.

Meanwhile, I was stuck in the queue at the supermarket. All I needed, was a carton of eggs, but I’d grabbed a few things while I was there. Of course, every man, woman and dog had the same idea.So, that’s where I was when my daughter had her accident and a complete stranger found her and stopped to help.

When I rang her from the queue, her little voice was sobbing. Her glasses were broken. Her head was bleeding and she was at the medical centre. Meanwhile, my husband calls. Our son had rung him and said she’d been taken off to hospital.

Forget Friday 13th. Fridays seem to be bad luck around here. Two week’s ago, we were at Emergency with our son.

Unconsciously, I switched gears faster than formula one driver, Sebastian Vettel. Mummy was on the way, siren blaring. I was given a superhero’s welcome. Mummy was there to save her injured baby bird.

Ouch! The cut was nasty and obviously needed stitches and I started wondering about plastic surgery. Ow! My baby!

The staff at the medical centre were beautiful and so caring, looking after Miss like their own and the woman who’d brought her in, had done the same.

Yet, we weren’t going home yet.

The wound needs to be stitched and Miss doesn’t want to be stitched.

She’s terrified and shaking like a leaf.

Then, the doctor starts talking about “numbing” the area.

Note she doesn’t mention the “n” word and silly me starts thinking she’s talking about applying some form of cream you rub on.

We’re given our options. She could get stitched up there or we could could take her to Emergency where they could also give her happy gas to ease the process. She was also told that numbing the area was going to be very painful but it would only last 10 seconds. We’re talking a needle under the eyebrow.

It was a grueling couple of minutes while she decided and fortunately, she decided to stay put and be brave. I asked her if she had her slime with her, which she could hold to calm herself, andwas relieved that helped. Like fidget spinners, making and fidgeting with slime have become a craze.

Four stitches later, we were on our way. On the way to buy her an ice cream. I’m a firm believer in food therapy. Then, we picked my husband up from the station. He could drive home, and I could pass the baton. Dad was in charge, and I could fall in an exhausted heap.

This morning her eye was all swollen and she could barely open it up. It wasn’t too purple, but purple enough.

This incident has also highlighted the possibilities with her travelling a long distance to and from school. I am also wondering whether I should be meeting her at the station again. It’s only a short walk to the shops and you’d think nothing could happen, but evidently it can and it has. However, it’s also important for her to gain independence and stand on her own two feet.

Of course, things could have been a lot worse. It’s terrifying to think how close the gash was to her eye, but it wasn’t. Yet, it was still traumatic. I still feel shaky inside. Indeed, I had a big sleep today. Wrapped myself up in my blankets and quilt with the electric blanket on. I desperately needed to shut the world out for a bit. Put myself on the charger.

I might be on call 24/7, but even Mummy is human.

Have you ever had an experience like this as a parent? What is your story?

xx Rowena

 

Finding A Magic Pill.

Good news! Our daughter has mild gastroparesis or delayed gastric emptying and no signs of coeliac disease or diabetes…phew! She has been prescribed periactin, which as far as I can see through a quick Google search, can stimulate the appetite in underweight people. I am also looking at her diet to boost her intake and she’s also having a food replacement drink.

So it’s looking like I’ve got all the bases covered…including having to grind up the tablets at the moment. She had a really good try at swallowing it but she just couldn’t even swallow half or quarter of a tablet. I was like this as a kid myself and I remember my poor mother grinding up tablets and mixing them with honey. It seems what goes around comes around.

I don’t think we could have had a better outcome from yesterday’s appointment. I was stoked, relieved, so very thankful and would have been doing the Happy Dance if I wasn’t feeling physically and emotionally drained. I still feel like I’ve been runover by a steamroller or squashed by that very heavy, metaphorical elephant. It was a long day and I did the 1.5 hour drive home admittedly via the deli in Wahroonga where I procured some top shelf gourmet mental health food: Double Choc Brownies and a gooey cinnamon bun. Cinnamon scrolls are a rare breed in Australia or at least gooey ones like this are. Wow, it was good!

Driving home, in some ways, the whole scenario felt like a huge non-event. Oh! It’s just mild gastroparesis and we were told there was essentially nothing they could do to treat it but we have this pill. Yet, this doesn’t negate that she’s underweight, a picky eater and was once again feeling sick after breakfast this morning. It doesn’t cancel out the extreme stress we’ve had with a child who can’t or won’t eat and ends up with low-blood sugar and gets cranky. I’m sure this isn’t going to magically go away by just clinking my fingers, either and it hasn’t!!

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

All of this is what people call “a journey”. However, when I think of going on a journey, doctor’s surgeries, hospitals, waiting rooms are certainly NOT on my itinerary. No! That’s not a journey. It might have its moments of sunshine but it’s still a perplexing quagmire and “journey” just doesn’t convey the intensity of those moments when bad luck, despair, pain and sorrow converge and attack. The bullets are flying. You’re madly scuttling for cover…any kind of cover just as a bomb goes off. Although you emerge from the battlefield unscathed without a scratch on the outside, you’re certainly NOT at the Teddy Bear’s Picnic either!!

If only life could be a continuous Teddy Bear's Picnic!

If only life could be a continuous Teddy Bear’s Picnic!

Here’s The Teddy Bear’s Picnic performed by Bing Crosby: https://www.youtube.com/watch?v=IrvkHAxnjzI

Don’t get me wrong. I’m as positive and the next person but it is what it is. Even when you come through the battle unscathed, there are still those invisible scars on the inside because you know what might have been. It didn’t happen but you went there in your mind and you knew. You saw. You anticipated but somehow found a U-turn.

So getting back to the elephant in the room…

It’s still with us and hasn’t gone away but it has very much shrunk and I hope become more manageable. As we left the doctor’s surgery, I picked the much deflated elephant off the doctor’s desk and brought it back home and it’s now sitting in my china cabinet alongside my vintage teacups. The elephant in the room is no longer looming overhead and intimidating me like a stand over man. It’s shrunk back down to size and I’m so relieved.

My next challenge after all these tests and appointments, is to convince our daughter that the elephant’s under control or at least will be in time. She is very much in the early stages of coming to terms things and this process is intensified through lack of food. As much as we might want things to go back to “normal”, she needs to be given the the time and space, understanding, compassion and acceptance to deal with this in her own way and I’m pretty sure that once she does that, she will start getting better too!

After this afternoon, I say: “Bring it on!!”

Thanks once again for your concern, encouragement and support. It means the world to me!!
xx Rowena

PS: Bex Powders used to be known as “Mummy’s Little Helper”

Why Stay Calm, When You Can Really Panic???!!!

Keep Calm and Carry On might work well if you’re a rock or the proverbial brick. However, if your passions are somewhat more easily aroused and your blood starts to boil and explode despite going to your happy place or bathing in the Pool of Siloam, welcome to the club. Feeling rather aroused, agitated and more of an Incredible Hulk than a Bruce Banner, I have tried going to my happy place of calm. Indeed, I’ve tried locking myself inside and throwing away the key. However, I keep returning to turbulent seas, which are much better depicted by  Munch’s The Scream. Indeed, if only I could scream, I’d feel better.

The reason I’m feeling all wound up and tense is that our daughter will be having tests next week to investigate some issues with reflux and being underweight. She will be having a barium meal and endoscopy to check things out. These tests aren’t difficult, traumatic or life-threatening and neither are the potential issues we’re investigating. Miss is largely well and energetic but she barely eats and is about half the size of many of her average-sized peers. If this is who she’s meant to be, that’s great. I would love to be almost that lean and she can be the real fashionista. However, there are a few ripples that concern me…as well as my gut intuition.

Dr Suess

All the same, I’m still wound up and agitated about it all and feel like something sinister is running after me and I just want to whack it on the head and destroy it completely…a bit like Basil the Rat in the final episode of Fawlty Towers.  https://www.youtube.com/watch?v=mv0onXhyLlE

I'd love to put an ad in paper and get rid of my health issues.

I’d love to put an ad in paper and get rid of my health issues.

Where is a good cannon when you need it?

Of course, it didn’t help when the doctor’s secretary called out of the blue offering me an appointment “tomorrow” and then the doctor telling me he can do the endoscopy next week. I know I said it was urgent before Christmas but after being in the deep freeze for so long and not thinking about it, suddenly it’s all systems go and I’m struggling to defrost. Despite my best efforts to self-calm, I am well and truly freaking out!!

You would probably imagine that after all my medical issues and treatments, that our daughter’s tests would be a walk in the park. I’ve had brain surgery twice, chemo, an arterial blood test. I have lung function tests where they even block off my breathing for a second or two. Hey, I’ve even given birth to two children, albeit via the zip. I also had blood transfusions every 3 weeks for 5 years where they probed around through dry river beds and often had a few jabs before they found a decent vein…ouch! I also had my teeth cleaned at the dentist lately, which was probably more painful than any of this. My teeth, like the rest of me, are over-sensitive.

Oh yes! When it comes to medical trials, I’ve definitely earned my stripes. I am very, very resilient!!

However, there’s a huge difference between being the patient and being the patient’s Mum.

No parent likes seeing their child experience any kind of discomfort or pain but for me, there’s also this sense of responsibility. An awful, sinking feeling that I’m leading my precious, baby lamb to the slaughterhouse, especially as we’re not even 100% sure that there’s a problem. Of course, that would be the ideal outcome. We don’t want them to find anything. However, that also raises the question of whether the tests were needed in the first place and whether I’m putting her through all of this for nothing.

If only I could add this to the barium meal, Miss might drink it.

If only I could add this to the barium meal, Miss might drink it.

I mean getting a child to swallow the barium meal when she’s been known to refuse to chocolate cake is going to be no mean feat. Indeed, Dad will be coming with us for moral support. It reminds me of an old ad for Quik we had as a child: “Drink it Freddy! Drink it!” www.youtube.com/watch?v=-P-OFW3ZDB4

Am I just being an overstressed, over-anxious Mum? Am I so used to being overweight that seeing ribs on someone else seems odd and verging on starvation just because I’m so well padded?

Moreover, while we’re on the subject of overly anxious parents, Munchausen by proxy syndrome (MBPS) comes to mind. MBPS, which is also known as “medical child abuse,” involves the exaggeration or fabrication of illnesses or symptoms by a primary caretaker. It was named after Baron von Munchausen, an 18th-century German dignitary known for making up stories about his travels and experiences in order to get attention. “By proxy” indicates that a parent or other adult is fabricating or exaggerating symptoms in a child, not in himself or herself.

However, when it comes to attracting medical attention, I don’t need anymore.

I don't think hospital was on Dr Suess's list.

I don’t think hospital was on Dr Suess’s list.

Moroever, I’m with Dr Suess. When he wrote: “Oh the places we can go!”, he wasn’t talking about hospitals or doctors’ waiting rooms!

All these things aside, our daughter’s refusal to eat does put quite a lot of added strain on family meals. Under duress, she’ll eat a Weetbix for breakfast. For years, her sandwiches have come home from school untouched, day after day, year after year. She eats an amount of food the equivalent to two match boxes for dinner and often complains about feeling full or sick. Even as a baby, she refused to eat and her weight has hovered around the bottom 5-10% most of her life. The fact that she has remained on the same trajectory and is relatively healthy and active are very encouraging but there’s still this nagging doubt.

I just need to make sure. Know I have covered the bases but not put her through exhaustive, unnecessary testing. Despite my uncertainty, I do think that when you have concerns as a parent and that uneasy feeling in your gut, you need to put some trust in your own judgement and intuition. Investigate. Ask questions. My daughter’s doctor also thought there was enough evidence to take the next step and refer us on. After all, these symptoms are concrete, measurable and aren’t the product of my over-active imagination…the stuff of a medical, fantasy novel published by Hypochondriacs Anonymous. To be honest with you, I’d much rather be a hypochondriac than really be sick.

To some extent my approach, has been informed by my own experience. When I was around 25, I was diagnosed with Dandy Walker Syndrome (DWS), a variation of hydrocephalus or fluid on the brain and had brain surgery to insert a shunt to treat it. Our best guess explanation for DWS was my difficult birth. There were times where I’d had various tests and we came close to working things out but we always missed the next definitive step, which would have given us the answers.

I have often wondered how different my life would have been had the Dandy Walker been diagnosed as a child. Growing up, I always felt “different” and I think I always knew there was something and I really did try to work out what was going on. I turned to psychology to try to unravel these inner mysteries when in fact, the problem was organic, structural and all in the plumbing. I was teased and bullied and all but destroyed at times and it would have been helpful to have understood what was going on. Since I had the surgery, my coordination also improved and I could have been spared a lot of heartache.

On he other hand, I was very independent and  I traveled quite a lot with that harbour in my head. I traveled quite a lot within Australia, usually travelling on my own but meeting up with others on the road. All this travel culminated in a trip to Europe in 1992, after my parents gave me a 12 month open ticket for my 21st birthday. I stayed in Europe for 9 months, mostly living and working with a family in Heidelberg in Germany. To be quite frank, I doubt my parents would have funded that if they’d known about my head.

No! No! No! That would never have happened. I would have been way too precious. Wrapped in more layers of bubble wrap than a fragile porcelain doll, I would have been protected, sheltered and to be honest…as stunted as a bonsai. Not that all parents of children with disabilities closet their kids and when they do, perhaps not without due cause but having a shunt in your brain is a fairly major thing for a kid and they are renowned for blocking and being temperamental…particularly in years gone by. We’re not talking about having a broken toe. Brain stuff is at least potentially major.

I know my life would have been very different.

Perhaps, it is this awareness that even serious medical conditions can bubble along seemingly under the surface for many many years while only causing intermittent trouble, that has caused me to be vigilant with my kids’ health. That’s not to say that intuition is always right and that your worst fears will turn into reality but it is a reminder. Serious health complications can have relatively subtle symptoms (at least at the start) and prevention and early diagnosis can be life-saving.

That said, as I head towards our daughter’s medical tests, I am hoping that it’s all nothing or just something simple and easy to accommodate. I’d much rather be an anxious mother than having a sick child. Wouldn’t you?!!

By the way, thank you so much for listening and I would welcome your thoughts.

xx Rowena

PS I’d like to share Ronovan’s post on boosting your positivity. I need to revisit this myself: https://ronovanwrites.wordpress.com/2015/02/18/positivity-negativity-be-gone/