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Feeling Ostomistic
Saturday, July 02 2016

I had my scan a month ago to check on my tumour growth and if it was responding to chemo or if there was any new growth. The scan showed a couple of new developments and one massive surprise.

I found out that my tumour was stable and showed no new growth or shrinkage (the surprise).

The two new developments were that I have a 17cm mass on my ovary and I also have 2 large blood clots (Pulmonary Embolisms) in my lungs.

I was called back to the hospital that day and taught how to inject myself with clexane needles twice a day. I was in shock and rather upset and my amazing husband took over and has since been giving me my twice daily injections.

I was so shocked as it was an incidental find and if it weren't for the oncologist bringing forward my scan by a fortnight I could have died... and as much as I thought I was okay and at peace with it....

Turns out I am not ready and that I still have so much life to live.

I thought maybe I did something wrong, but my doctors reassured me that I didn't. Apparantly the chemo and cancer combo can lead to blood clots due to my blood not clotting right... the only symptom I had experienced was a cough and shortness of breath.

So I have to have my injections twice a day.. my husband comes and gives me one in the morning before he leaves for work (along with my thyroxine medications) and then the other is at night before bed. I need to have these injections for at least 3-6 months.

Some tips if you need to have clexane injections:
#1. I find being jabbed in my thigh hurts a lot less than my stomach... maybe it is because my stomach is so sensitive from the tumours but it hurts a lot for me.

#2. Find an area that has more fatty tissue so you can kinda pinch the skin, I find the fattier part of my thigh hurts less

#3. After you receive the injection gently rub the area or tap on and around your thigh, it helps to relieve the pain and I don't know how but it just really helps to relieve the sting.

P.S if you are experiencing chest pain that is new or shortness of breath that is also new, please don't hesitate in seeing your doctor or presenting to the emergency department at your local hospital

 

Posted by: Talya AT 06:01 am   |  Permalink   |  0 Comments  |  Email
Tuesday, November 10 2015

One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.

Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.

I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.

This is what happened yesterday and the lead up to it.

Friday 06.11.15:
I went for a CT scan of my abdomen for a suspected fluid leaking into my abdominal wall and possibly the reason I had fevers and have been in hospital since Wednesday night. The scan was to also compare my tumour growth and check on the tumours to ensure that those hadn't yet turned septic and were the cause for worry.

The doctors confirmed that either there is a new tumour to the right of my stoma or that it is a cavity that is filling with fluid from my bowel or stomach and needs to be drained. Surgery was discussed but they decided to do an ultrasound on Monday to get a better view of what is going on.

Monday 09.11.15 1PM AEST:
I went for an ultrasound and the radiologist came in and said "that isn't a fluid cavity that is a tumour and without knowing this patients prior history I suspect it is a desmoid tumour". He turns to me and says "I am sorry you have a large tumour 10cm x 11cm".

I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.

So I broke down I couldn't stop crying and I was freaking out that there is a tumour somehow in between two other tumours and my stoma and where on earth is it fitting and is my stoma going to be okay, will I be okay, does this mean my death is looming nearer than I expected? These were all questions running through my mind then the biggest freak out of all was "I can't die just yet, I am too young".

I was howling (literally) uncontrollably and couldn't stop crying. I needed support I needed someone to tell me I was going to be okay... I called my husband at work and my mum who came and sat with me and brought me a drink and some lollies.

Monday 09.11.15 3PM:
My doctors came in, first my bowel surgeon who was talking to me about my tumours and explaining how sometimes they can die from the inside out when chemo is involved and that the centre is liquid and can become septic.

Then my oncologist and his team came by and he asked what had me so upset. When I told him he replied "I am so sorry for all this upset caused but someone told you the wrong information, you don't have a 'new' tumour you know it is there it is the big ball under your skin at the top of the stoma". I was all confused and said "Wait whaaaaaat?"

He replied "it is new on the scans you've had here at the hospital, but not new on the scans that you had back in August which is why I asked your husband to bring them in, I am so sorry someone told you you had a new 4th tumour but you still only have the three."


My tumour the "new" one. To the left of the image is my belly button, my stomach normally would end there but that is how big the tumour is.. see it resembles a ball!

I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.

They saw how fragile I am and have transferred me over to the private hospital for a few days respite to help me recover, regain my strength and collect my thoughts again.

Lesson learnt... don't freak out until you know all the facts

To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).

Much love to you all x

Tell me in the comments below, a time where you freaked out before knowing all the facts

 
Posted by: Talya AT 10:57 am   |  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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