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:
#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
Sunday, April 10 2016
We know that chemo can be toxic to ourselves and we can get sick, but did you know that it can make those around us sick too if they are exposed.
Before I started chemo, I was invited to attend a chemo education session where I learnt things about treatment, nutrition and what it means to be cytotoxic.
When you have chemo you are considered 'cytotoxic' for the next 7-10 days. This means that your bodily fluids such as urine, tears, sweat, saliva, semen, poo and blood contains chemicals that can be toxic to others if they are exposed to it. They can be near you and not get sick, just as long as they don't come into contact with your bodily fluids.
So when you have chemo it is important that you be mindful of what you're doing to help protect those around you.
Here are 10 steps I take to ensuring the safety of others around me when I am cytotoxic
#1. Double flushing the toilet with the lid down
#2. Try and use one toilet for my use only
#3. Don't share drinks/cups
#4. Don't share food/utensils
#5. Use condoms if having sex even if it is just oral
#6. Double line your garbage bags when disposing your stoma bags
#7. Make sure you have disposable gloves handy
#8. If you are holding a newborn
#9. Wash soiled items seperately
#10. Wash your hands and make sure others do too
Thursday, December 17 2015
November (like October) involved not as much chemo as I would have liked and meant more time spent in hospital.
NOV 3RD, 2015: Had chemo today, was the first day in 3 weeks that I have had it was also Melbourne Cup day. I felt rather seedy the following day(s) and rather tired. Even the blandest of foods I couldn't stomach and wasn't until a few days after chemo that I actually ate something. I actually ended up being admitted into hospital on the 5th of November with fevers and suspected infection somewhere. I had a CT scan which showed my tumours haven't shrunk but they hadn't grown much.
NOV 10TH, 2015: No chemo today as I was in hospital
NOV 17TH, 2015: Had chemo today, was the first day in a fortnight I had chemo. My mum picked me up early and we went and had lunch by Mangrove Jacks, it is this really lovely restaurant situated on Coffs Creek and is majestic.. such a tranquil spot! Was rather funny at lunch there were these seagulls in the water being chased by big fish, the poor birds were paddling their little legs as fast as they could to get away!
My port bled today for the first time in ever, which had me excited that maybe all the issues of my port were behind me. I did wake this morning to a bunch of sweet texts from my sister (14) and brother (18) wishing me best of luck for chemo. I am loving the family support recently, it is reasurring knowing you're not along in this huge battle.
I started some new medication today, my oncologist prescribed me lorazapam which I am to take the night before chemo, the night after I have had chemo, and the day after I have chemo which will hopefully help keep my body calm and works well with my other medications he gives me during chemo like ondanzatron.
I had fevers a couple of days after chemo, but with some panadol I was able to manage the fevers at home, but have been sufferring bad with kidney pain and migraines.
NOV 24TH, 2015: Didn't have chemo today, they tried to use my port but it wouldn't even flush saline through! I went and had a portagram done, which is a scan of your port to see if it is working and turns out the thing is blocked! I have to come back on Thursday (26th) and have a procedure done to unblock it.
I decided to wear my storm troopers headwrap to chemo today along with my Dior lippy I got from Look Good Feel Better workshop (loving the pink!). I got a lovely compliment from the volunteer today, she said "you always look pretty with your hair wraps". A compliment from a stranger always makes you feel better.
NOV 26TH, 2015: Today I am having my port unblocked. It is a surgery that requires the doctor to make an incision into my groin and going in through the artery he can feed a cable up past my heart and chest and to my neck where my port is and unblock it. The surgery went well and was a success and the port started bleeding back. The surgeon also was able to reposition the port so it wasn't sitting so high up.
I woke up half way through the procedure and it was rather bizarre just laying there not able to feel anything but know that you are being poked and prodded.
Once I was awake, I had to stay in bed for an hour to reduce any complications post surgery and then I was allowed to sit in a chair, have a sandwhich and wait for a couple of hours before I could be discharged.
The incision site was rather sore for a couple of days and chemo will be scheduled for next Tuesday (1st Dec).
Even though it is month two of this chemo saga, it is only something like 4 days (cycles) I have had of chemo because of all the interruptions such as surgeries, port not working and being in hospital. Here's hoping things go a bit more smoothly next month... I am a bit anxious about Christmas and hope to be able to spend it with my family.
Monday, November 16 2015
Hi and welcome to Chemo Diaries: My experience, which will be a monthly series of posts written like a diary about my experience as I undergo chemo. This is the first month post and is also for the month of October, 2015.
Thankfully there is heaps of information out there to help understand the type of cancer treatment you need and how it will effect you. I have found CanTeen have some great resources for helping me to understand what to expect from my cancer journey (even booklets on fertility after treatment). Other great places of information I have found are from the Cancer Council as well as the chemo education sessions I attended at my local cancer centre.
As I read in the Canteen booklet "Your guide to dealing with cancer ages 16-24", chemotherapy (chemo) is one of the more commonly used methods to treat cancer and it works by using drugs called cytotoxics to kill or slow the growth of cancer cells. As explained in the booklet (and from my own experience) chemo also kills your good cells too, making you feel very sick, fatigued, and also why you lose your hair (I am yet to experience hair loss). I also experienced really painful mouth ulcers recently (was so bad I couldn't eat, read more about that below).
Initially I was planned on having monthly doses of Caelyx but after a severe (almost-died-reaction) to it my oncologists decided on weekly doses of Methotrexate and Vinblastine combination to try and shrink these tumours, and as my oncologist explained "to help give me relief to enjoy each day".
I didn't go into chemo with the expectation that one day I will be cured and tumour free, I know that isn't my reality and I don't want to have unrealistic expectations. But I just want my tumours to shrink enough so I can FINALLY be pain free and enjoy what is left of my short life. I have so much I want to still do (read about my happy list here) and I hope to be well enough one day to travel.
My experience so far:
This concludes my first month of chemo experiences ranging from my portacath surgery to starting two different chemo regimes and as my husband said to me recently, "I know it is horrible right now, but the sad thing is you will get used to feeling like shit... just imagine when chemo is all over and you will look back and think 'It is good not to feel that crappy'. If anyone can do this, you can".
I love that he has so much faith in my strength, although I constantly wonder and feel like I am not strong enough to do this.... my husband is like my own personal cheerleader! I don't think I could have done this without his support...
One month down, just 11 more to go!
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.
Monday 09.11.15 1PM AEST:
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.
Monday 09.11.15 3PM:
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.
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
Friday, October 16 2015
Earlier this month on the 2nd of October, I travelled the three hours south of Coffs Harbour to Port Macquarie where I had an operation to put in my portacath (port for short) for ease of use/access during chemo.
I just realised how funny that I had to go to Port to get a port (HAHA).
I spoke with a couple of friends who I met through Canteen that have gone through treatment and I asked them how they got their chemo. One said she first had it via a drip in her arm then got a port put in and loved it, and my other friend had a Hickman line.
I had met with the vascular surgeon and he showed me the port I was getting, which was this awesome metallic purple Power Port and given purple is my favourite colour I thought that it was the coolest thing ever, although my doctor thought I was weird given that you won't see it as it is under your skin... but knowing it is there and that it is purple is all that matters!
On the day of the surgery:
The night after surgery:
How is the port accessed?
It turned out the needle was defective, so they tried a new needle and it worked using the head turned far to the left and coughing tricks.
I have since had my port accessed multiple times during chemo, but also for fluids when I have presented to the Emergency Department with dehydration and fevers.
For more information on ports and if it is best suited to you or your chemo regime speak with your oncologist or your chemo nurse who can provide you with booklets and information.
Saturday, September 26 2015
NB: This post contains raw emotions
I am sitting here writing this approximately 3 days out of having my first round of chemo, and if I said I wasn't shitting myself, I would be lying and quite possibly with my pants alight.
You see, even though I have known for a while now (little over 3 weeks) that I would be needing chemo I thought that I was okay with it and had accepted it, and that I was ready, but the more meetings I have with my oncologists and chemo nurses and waiting for vascular surgeon to put in my portacath and the more involved this process gets, the more overwhelmed I get.
It all started earlier this month, I went to Sydney and met with my oncologist to review my beastly desmoid tumours, and it was concluded that it was time to try chemotherapy to shrink these tumours after all other options had been exhausted.
My oncologist told me I would be needing to have a drug called Caelyx, which is predominately used to treat breast cancers but has had some clinical trials where it has been effective in the fight against desmoid tumours.
So I left the Sydney appointment with the relief of knowing that I can have chemo back home and would need to organise a local oncologist, which I first met with on the 17th of September. In this meeting I was blown away with how thorough he was and he knew EVERYTHING about my history and I was really impressed with how much research he had done into my rare tumours and disease.
It turns out that the chemo that I NEED to save my life comes at a price. You see, the drug currently isn't on the PBS (Pharmaceutical Benefits Scheme) and is $6,000 AUD per dose of chemo, meaning I would be needing to come up with $36k, which I don't have.
So I called my Private Health Insurer, who told me that "we only cover chemotheraphy if done as an inpatient and if it is on the PBS, unfortunately we can't cover your chemo". I was so upset and started considering what my options were.
My oncologist presented three options to me, these were:
By this point it was a Thursday and I was told that I had until Monday to make my decision.
After talking at length with my husband and family, and writing a pro's and con's list I decided that we will go with option 3.
I got a phone call on Tuesday morning from my oncologist to say that the drug company has responded and approved 3 initial treatments and pre-approved a further 3 more, so 6 treatments in total!
I was so relieved I was crying and calling my husband and family to tell them the great news, I felt like I had won the lottery! Honestly!
Because of how rare my disease and tumours are, if this drug works for me then it might help other people with the same disease and options, and might provide some hope to those who feel all has been lost.
While I am so appreciative for the chemo being supplied, I am trying not to get my hopes up ..... if it doesn't work I really don't know how I could cope if I felt that all hope is lost, as it stands I am petrified of my future and what my life will entail for the next 12 months, and I am just praying that this works.
My husband and I have attended chemo education sessions, so we know what to expect and what is involved, just being only a few days out of starting chemo I am shitting myself, and finding myself feeling rather anxious, angry and scared.
... If I click my heals together 3 times and imagine a secluded beach in paradise, with Ryan Gosling serving me cocktails while topless, will I be transported there?
...CLICK.... ......CLICK....... ......CLICK......
Maybe it only works if you're wearing glittery red heels?
P.S I need your help! While my chemo is being generously supplied, I am struggling financially with all of the other medical costs (scans, medications, specialist consults) as well as getting to and from chemo and trying to manage life in general, things are a bit tight..