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Feeling Ostomistic
Friday, June 15 2018

Today has been a massive day, I have been running around from appointment to appointment between the cancer centre getting my port flushed and bloods checked to getting my long overdue hearing check done. As part of my promise to spend time this year doing things for self care and prioritising me, this appointment was on the list.

I felt rather relieved to have finally had the appointment, moreso for what came next.....

I knew I had hearing loss in my left ear and knew it for a while, part of putting off the appointment to getting them was out of fear for the cost. Ever since I was 18 (2009) when I had the cysts on my brain I noticed hearing loss then, something to do with the pressure in my head, which has only gotten worse over time. Then when I had chemo I noticed with most things about my health, that it deteriorated more, so I feel for my neighbours as the TV is always so loud but I also feel for those I have hurt because they felt I ignored them or the conversation or that I was rude because I sat in silence.

☟☟☟☟☟☟

But today I went and had my test and found out that I was eligible for free government subsidised hearing aids that I needed to pay $45 a year for batteries and servicing.

So today I got fitted and chose the colour and style, then in a fortnight I will get them as they have to be ordered - they will be fitted and I will be shown how to do it myself and then I have them for a fortnight to test run and make sure they will do what I need them to do.

If after a fortnight I am happy with them I accept them and they are mine.

It was a little overwhelming being told that I am eligible for hearing aids, not from a vanity perspective or worried for my looks, but because I can finally hear again and not miss out on conversations or pretend I understand and can follow along.

It gets so exhausting if I go to a family function or a social outing, even just a dinner date with Russ, if there is too much noise I can't hear and it gets tiring trying to focus as well as focus on not being in pain, and I tend to just sit there not saying much and can be labelled as rude, but it is just so so hard.

So I almost cried when I learned that I could be hearing in a matter of a fortnight.

I am hopeful and excited, I have needed this for so long.

I am not upset or worried, I am just grateful for our health system and that there is subsidised hearing aids that don't do fancy things but do just what I need and that is okay, would have loved to have gotten purple but Russ found a colour that would blend in with my ear and hair so won't stand out too much.

So I am okay, I am just grateful for all the new possibilities coming my way.

I learned years ago to never take hearing for granted and have been grateful I still had hearing but was just hard to hear in one ear.

So if ever you felt I was ignoring you or being rude, I most likely just couldn't hear you.

Posted by: Talya AT 11:47 pm   |  Permalink   |  0 Comments  |  Email
Monday, August 24 2015

I recently had a brain MRI as I was experiencing recurring symptoms I had when I was first diagnosed was arachnoid cysts on my brain in 2009, so as the symptoms had returned (the headaches, hearing loss and vision issues) I thought it was best to have a repeat MRI. The scan confirmed that the cysts that had been fenstrated (drained) back in 2009 had returned and were as big as they were then, and after consulting with my brain surgeon we agreed to monitor it for 6 months as this is the least of my conerns right now health wise.


My most recent MRI scan showing my brain (yes I do have one) and the cysts

So I had a reader message me after my scan, sharing that she too was going to have an MRI but she was feeling a bit concerned as she didn't know what to expect as she hadn't had one before, so she asked if I could share my experience and any tips to help her prepare.

What to expect when you need an MRI scan
& how to prepare for one in 10 easy steps!

What is an MRI machine?
MRI stands for Magnetic Resonance Imaging, and according to Better Health Channel it is a scan used for diagnostic imaging that uses a magnetic field and radio waves to help view what is going on inside your body, but is more commonly used to look at soft tissues (such as organs, and muscles) that don't show up on an X-ray.

An MRI also takes high resolution images of soft tissues and the picture is more clearer than a CT or X-ray.

How does the proceedure work?
You will be asked to lay on the scanning bed, which moves and slides you into the MRI tunnell. Sometimes (depending on what part of the body is being scanned) they will strap down or put a cage around the area so you don't move that part of your body, reason being if you move at all the images become blurry and you may be asked to re-do your scan. When I had my brain MRI they put this cage/mask over my head and secured it to the table so I couldn't move.

Some scans can take up to an hour to complete, and the tunnel you slide into is very small and it is normal to feel a bit claustraphobic as well, but there is an intercom inside the tunnel and you're given a button to press if you need to speak to the imaging technician.

The machine is also very loud (can be compared to that of a jackhammer), so you may be given ear plugs or ear muffs to wear. Some machines also have headphones that play music.

How much does a scan cost?
As the MRI is a specialised pieces of equipment it is also very expensive to run. Depending on the reason for the scan or where you're getting the scan done at can influence the price of the scan. Medicare (is the system we have here in Australia) bulk bills in some cases, but most of the time there could be an out of pocket expense. But it is best to ask when making your appointment what costs will be involved. One MRI I had in 2009 cost $685, so it is best to check up front.

Some places may also allow you to pay the gap and charge the rest to medicare, but as I mentioned before it is best to check with medicare and the imaging place what costs will be involved.

Can anyone have an MRI?
While most people can have an MRI, it is always best to check with your doctor or the radiologist if you have any concerns. While it is considered a safe procedure, some people may not be able to have the scan if they have a pacemaker or any implant, any metal in their body (that can't be removed) or people who are pregnant. It is always best to check with your doctor though if you have any concerns.

How to prepare for an MRI in 10 steps:
#1. You will be asked to not have anything to eat or drink for at least 4-5 hours BEFORE the scan, but this can vary depending on the part of the body being scanned or the time of day. It is important that you follow the fasting guidelines to ensure the best result of your scan.
#2. Allow at least an hour for the scan, and allow for additional time involved if they are running behind schedule or if you have paperwork you need to fill out.
#3. Remove all piercings and metal from your body, if you have any internal implants or metal objects it is best to tell someone immediately BEFORE having your scan.
#4. You may be asked to remove all clothing and put on a hospital gown, this is incase there is any metal on your clothing such as your bra, studs on your jean pockets or a zipper etc.
NB: Wear comfortable loose fitting clothing that doesn't have any metal to avoid having to strip down into a hospital gown, but not all practices will let you wear your own clothing either, so always ask. But I always wear tracksuit pants and a loose t-shirt when I have any scans.
#5. Turn your mobile off or to aeroplane mode before your scan
#6. If you find yourself feeling claustraphobic in confined spaces, it is best to tell someone before your scan. They can sometimes offer a sedative or anti-anxiety medication to help you relax. Otherwise if you know how to meditate and if it helps relieve your anxiety you can practice that.
#7. If you have an iPod or phone with music on it they may be able to play this for you and you can hear it through your headphones. The machine can be really loud with a lot of banging and clicks (sounds like a jackhammer).
#8. If you don't wish to listen to music and want to try to meditate or have a nap bring a set of ear plugs.
#9. Pack some panadol if you're prone to headaches which are brought on by loud noises to offer some relief after the scan (consult with your doctor first if panadol is right for you)
#10. It can be quite cold in the scan room, so bring a pair of socks to wear on your feet to help keep you warm. You may be offered a blanket too.

ONE thing I like to do after my scan, is to go for a nice lunch or coffee with a friend. Not only does it help ease the anxiety I feel while waiting for my results to come back (can be a couple of days) it also is nice after having had starved all day prior to the scan.

These tips are based on my own experience of having multiple scans, and I am sharing to help you in the lead up to your own scan. The scan isn't invasive and no need to be scared of the scan. But it is perfectly normal to be anxious about the results, I know I usually am (especially when waiting to review my tumours).

As always, if you're needing to ask a question you can always connect with me through email or via facebook. Please remember I am no Doctor, so it is always best to consult with your physician as your first point of contact. I am only sharing my experiences on this topic.

You may also like the following topics:
* PET scan and what is involved
* CT scan and what is involved
* Thyroid biopsy and what to expect
* Breast Mammogram, biopsies and what to expect
 

p.s If you find my tips and blog helpful, please take a moment to vote for my blog in the Heritage savvy bloggers competition. With your help I (and if I win) I am starting a new support website (and app) to help other young people who live daily with a chronic illness. By taking a moment to vote not only will you be helping me to help others but I am confident that this website will change the lives of many (and if you're in Australia you could win $100). Please remember to confirm your vote via clicking the email they send (check your junk/spam too).

 
Posted by: Talya AT 06:48 am   |  Permalink   |  0 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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