Sunday, July 31 2016
For those who have been following along through my mirco-blogging on my Facebook page would know that I recently (about a month ago now) entered into the care of Palliative Care and that my chemo and treatment options stopped.
I will write about that on my blog shortly, just been hard finding the words to say.
But since then I have wanted to make a point of living life and not just existing like I have been, especially while I was on chemo. It was making me so sick that I really didn't feel like myself anymore and I spent a lot of time in bed or on the lounge and I was just existing.... and I really wanted to experience new things and make memories.
So the week after my treatment stopped I went away on a Canteen over 18's camp and had a ball!
When I got back it was school holidays so I had my 14 year old sister come and stay for the week. I wanted to have such a fun filled week planned that I wasn't really looking after myself and resting (especially after such a big week with the canteen camp the week prior). But I found a chemist that was offering FREE makeup lessons to teenage girls in the school holidays, and she really enjoyed learning about how to apply a natural makeup look perfect for school. The next day we went and got pampered with manicures, pedicures and facials (I had never done these before). I even took her to brunch to my favourite spot by the waters edge, and that night we went to Hogs Breath for dinner and she said it was the best steak she had ever eaten!
Then it was time for her to go home, and when she got picked up my other sister (15 year old) got dropped off for her week to stay.
I felt so guilty while she was staying with me, as I was so tired from the previous two weeks, that all I wanted to do was mostly rest and take it easy. She was okay with it as she was enjoying the quiet and break from all the other siblings. I organised the makeup lesson for her too, and the chemist even had a VIP beauty night which we went along to and she won the lucky door prize! I also took her to brunch, but didn't take her to be pampered, frankly I couldn't afford it again (I did buy her something as a consolation prize).
It was nice having my sisters stay with us, they were both so helpful and willing to help me around the house or help me if I was trying to walk or climb stairs... we didn't want them to go home, it was nice having a youthful feeling in the house.... but mostly I was loving having company of a day and someone to talk to and not being lonely while Russ was at work.
So last weekend was our 6th wedding anniversary and we decided to go away for a few days and stay at a cabin at South West Rocks. We dropped my sister off at her house on the way, then we went Pokemon hunting for an hour or so and then we checked into the cabin and had a nap. I was so exhausted! The cabin was rather nice had 2 bathrooms which were rather spacious (just what I need and prefer) and it was right by the water's edge.
We went out to dinner that night to celebrate my brother's early 21st birthday with all the family and had a rather nice meal, then we went Pokemon hunting again, this time with my siblings. We had our 11 year old brother with us, but we lost track of the time and soon was 10PM and there were messages from mum to get him home as he had school the next day (whoops). But he was loving it.
Then we had a nice sleep in the next day (Monday) and decided to go to Port Macquarie to lunch (all you can eat buffet) and then go for a huge walk and pokemon hunt.
Palliative Care hired a wheelchair for me to try and to help me get out and about more for walks with Russ and to make things less painful for me.
I was rather nervous using the wheelchair for the first time, was worried people would stare or laugh. But people smiled and nodded, and I was holding both mine and Russ' phones and catching the pokemon... I have the two phones at once skill down pat.
Our walk was about 2 hours and I think we did 4km or so in total, Russ was feeling rather tired and I was starting to get in pain so we decided to head home while it was still daylight.
Right where our car was parked in Port Macquarie there was a wall with painted angel wings, and a sign that explained what it was about. You are to stand in front of the wings and take a picture and upload to social media using the hashtag #ifweallhadwings and it was to raise awareness of a NFP (not for profit) in Port that helps to alleviate the financial stress for someone undergoing cancer treatment. Here is my picture below.
So we headed home (well back to the cabin) and ordered Chinese for dinner and had a nap... I didn't realise how late it was and I had promised my siblings that I would help them with assignments and it was 8PM when I realised the time... so we called around to my brother's to give him his birthday present and see him before we headed home, then a quick pokemon hunt and it was bed time.
I started crying when we were in bed, as I hadn't felt so alive and happy like I had those past few days and I was dreading going home the next day... I was trying to convince Russ to stay another night in the cabin but he said we really couldn't afford another night. He said if my nan would let us stay at hers that we can stay another night, I could see mum and the kids a little more and have dinner with them and then I could catch up with one of my oldest and dearest friends the next morning for a cuppa before we left.
So my nan said "of course you can stay" and so we did.
When we left on Wednesday we had to make sure we left Kempsey by 10AM as I had to be in Coffs by 12PM. For months I had been looking forward to Turia Pitt coming to Coffs and speaking, and it is something on my bucket list to hear her speak and hopefully meet her. I just think she is so incredible with what she went through and how she doesn't let anything get in her way of achieving anything, she sets her mind on something and works her ass off and she makes shit happen... I had a few friends hear her speak and spoke of how incredible and inspiring her talks were.
So I went along to her talk (along with my nan and her sister) and we had a nice lunch and then Turia spoke. She made us laugh, I know I cried, but she really inspired me.
and guess what...
Afterwards I got to meet her! I asked her to sign a copy of my book (her book she wrote) and told her that it was on my bucket list to hear her speak and she said "well mate I am fucking honoured".
I walked out of there trying so hard not to cry, not sad tears but really happy elated tears you have when something you have wanted came true and I was just so full of emotion and excitement... she really is remarkable!
So that brings us to Wednesday night and I was so exhausted I went to bed early and woke the next day with the flu, Russ was sick too and only returned to work yesterday. I felt better yesterday (from the flu) but was in bed dealing with girl issues... it has been over a year since my last period and it returned yesterday and has been rather painful... so I have been pretty much back in bed since Wednesday night.
But my pain is a bit more controlled now, just taking pain meds more regularly and it is helping a lot.
So that is my recap of the month that was July, was a crazy busy month... next month might be as crazy (we hopefully get the keys for the new house... IF IT IS FINISHED urgh it is taking forever) but I am in LOVE with my new kitchen.
Thanks for all the support and for following my journey.
Saturday, July 30 2016
I am sure by now you have heard of Pokemon Go, the gaming phenonemon taking over the world.
If you haven't you might be living under a rock, as it is this game that was released about 3 weeks ago and has so many people playing and socialising just to play the game... heck it is even tricking you into doing exercise!
My husband started playing the day it was released here in Australia, and I only started playing it 7 days ago (and I am already up to level 15, half a level behind my hubby who has been playing for 3 weeks).
When I was younger I loved watching Pokemon on TV and even played on my gameboy advance, so when it was released I knew it would be pretty awesome to re-live some pretty fun childhood memories (afterall, you're never too old to be a kid).
But two of the reasons I was so delayed in signing up and playing Pokemon was 1. I have a bit of an addictive personality 2. I can be pretty competitive but 3. It is hard for me to get out and go walking/driving on my own and I didn't want to be stuck at home feeling down and disappointed that I was missing out, which in the end I was feeling that way anyways so I created and account and started playing.
Boy what fun it has been this past week though!
We went away (my husband and I) for our wedding anniversary and stayed close to where my family live, so we got to go Pokemon hunting with my siblings (which was a lot of fun) and we even went to Port Macquarie for the day where we went for a massive walk (4km in total) and my husband pushed me in my wheelchair, then we got home on Wednesday and went for a 3km walk through the botanical gardens here in Coffs Harbour (there is so many Poke stops and pokemon there).
But the highlight for me has been waiting for my husband to come home each evening and we go searching for an hour or so for the Pokemon, it gives me something to get out of the house.
It has become a fun thing that my husband and I can share and do together, and we are having so much fun!
HOT TIP: Before you start playing do your research (google search) for articles on tips, tricks and resources to help you play. I wish I had of done that before I started playing so I could fully understand how to get the most out of the experience.
But over my week of playing, I have come across some ways to help you not only play better but also to play safely.
#1. Find a friend to be your Poke' buddy
#2. You will find more pokemon in more populated areas
#3. Use caution and common sense when playing especially at night
#4. Invest in a portable phone charger
#5. Unless you plan on battling your Pokemon get rid of unessential items
#6. Berries can help you to catch a pokemon
#7. Capture as many Eevee's as possible
#8. Capture every Magikarp you find
#9. Save your lucky egg for a bulk evolving spree
#10. Use the incense to draw Pokemon to your location
These are just a short list of tips and tricks I have used to not only play efficiently but safely, but you can google 'Pokemon Go tricks' for a lot more hints. But if you have any hints or tricks you have used and isn't mentioned above simply leave a comment below (or join the conversation over on our facebook page)
Most of all have fun but be safe!
Wednesday, July 13 2016
[this post may contain spoilers, proceed at own risk]
I was watching Winners and Losers last night (the second episode of what will be the final season) and I felt rather annoyed by a particular conversation that seemed to have been missed on the show.
Jenny found out that she was pregnant (was a surprise/shock) and that she later learnt that it was ectopic.
But there should have been a conversation with Jenny and her husband about their options they have for planning or 'safer planning' for a family when she carries a genetic cancer gene mutation.
We learnt earlier in the series that her mum and sister both had breast cancer, then Jenny discovered that she too had the gene and she opted for the double masectomy... I always thought the writers did so well in those episodes that followed her diagnosis and surgery and that Melissa Burgland conveyed the emotion really well, I especially felt that I could relate.
But I felt really disappointed watching it last night that there was nothing mentioned about speaking with a genetic counsellor regarding family planning or anything.
I just know with my genetic cancer gene mutation that I had to consult with so many doctors and specialists BEFORE we were to start trying for a family, and to really know our options and risks going forward. Options for us included IVF where there is a test that can be performed on the embryos to see if they have the gene mutation.
I just know for me, a big responsibilty I felt was that I didn't want to be careless and knowingly pass on this gene knowing what my family (dad and sister) along with myself have gone through, and there would be that stress and worry of not knowing if they inherited the disease until they were at an age to be allowed to be tested... I am not judging those who have the disease and have children knowing the risk of passing it on, but I just know for me I would find it too hard and stressful knowing that I had options available to me.
I just think that the writers should have added in a discussion of some sorts and work with reputable sources to encourage awareness and to talk with someone (either her partner/family/specialists) about the risks or safer family planning.
I know it is just a show and it is fiction, but they did their research in the doctor prescribing a single dose of methtrexate to treat the ectopic pregnancy, but surely they could have done research about family planning when you have a known cancer causing genetic mutation... and that is where I felt the show really let me down.
It would have been nice to watch the show, and watch how the conversation would go and know somehow that I wasn't alone in my conversations with my husband/family/specialists about planning for a family with this disease.
Will be curious how the story pans out... but given it is the final season we may never know if the gene stopped with her or if she passed it on to her future offspring.
Speaking of offspring, I am LOVING this season!
Monday, July 11 2016
Canteen is an organisation (charity) that provides support and help to young people (like me) aged 12-24 to help them on their cancer journey. You might have heard about Canteen through their National Bandanna Day campaign that runs annually each October.
When I was younger I had a beautiful little sister who was fighting her own intense cancer battle, and canteen helped our family out with support and ever since then and after my sister's passing we continued to support Canteen through their National Bandanna Day, our way of saying "thanks for the support".
It wasn't until after my dad died in 2012, that we realised that Canteen was there to help us through our dad having cancer and then dying, we thought it was just for people who had cancer and didn't know we could join too.
It was a few days after my dad's passing and my siblings weren't coping, so I looked into signing us up and a short time later we went on a 'New Member's Camp' where we weren't the only new kids on the block.
What I didn't know at the time was that I had found a place where I belonged and could turn to when I needed support... I also didn't know just how much I would come to rely on Canteen.
After the camp I kept in contact with the staff at my local division and accessed the counselling support.
Late 2012, I was told that I had early signs of bowel cancer and that I required my bowel to be removed in the coming months. I turned to Canteen for help and support as I made the decision to have my bowel removed and live the rest of my life with a permanent ileostomy.
Because of my surgery I didn't go on any programs during 2013, mostly out of anxiety around living with a stoma but also I was in and out of hospital with pancreatitis that I just kept missing out, which again happened during most of 2014. I was going on an over 18's program but instead was in hospital the day before camp started.
During this hospital admission they did a scan and found there was a tumour, I then travelled backwards and forwards to Sydney for consults with specialists and having scans done.
Canteen were fantastic, the staff touched base with me each week and when they were in the local area they would invite me to coffee to see how I was going.
I decided to say thank you to Canteen for their support and organised a Halloween themed high tea fundraiser, which was an absolute blast and success raising $1200 for Canteen and is an afternoon that guests still talk about.
Then in early 2015 I had a PET scan and it showed my tumour had now doubled in size, I had a new tumour growing and that I also had thyroid cancer.
I turned to Canteen a lot during this year, and I was involved a lot as a camp leader or helping to plan different programs (even though I wasn't able to attend for health reasons). I offered up my graphic design services and would design different flyers and posters or invites for camps, I loved not only having something to do but to help in my own way of saying thanks for being there for me.
I actually just got home from an Over 18's program, and I am so glad that I went... During the past fortnight I was told my chemo was to be stopped and that there were no more treatment options going forward and that palliative care were called in to help manage my pain and symptoms and to help me feel more comfortable.
The past fortnight has been extremely tough to deal with, and I just really needed to escape and get away and just talk to people my own age with their own experiences... to talk with peers who 'get it'.
I had so much fun on the program, and despite being in a lot of pain I really enjoyed myself. The staff were amazing going above and beyond to help me, and the member's who attended were so kind and accepting.
To be honest, Canteen is the one place that I feel accepted and valued and not judged, and I think that is why Canteen works so well.... it is a safe place for you to explore your feelings and dealings with your cancer journey and you are surrounded by people who are as well.
I honestly don't know how I would have gotten through and navigated the last few years without the support and help from Canteen, and for that I will always be thankful and appreciative of all the times that Canteen was there when I needed them.
I age out of Canteen this year, so that was my last camp. I still plan on keeping in contact with the staff and offerring my graphic design services. But I have made some amazing friendships through Canteen that I will continue to cherish and keep in contact with.
If you are a young person aged 12-24 in Australia, or know someone who is affected by cancer (whether it be themselves, their parent or sibling who was/is sick) please let them know about Canteen by clicking this link.
Tuesday, July 05 2016
When it comes cancer and sharing your story/journey, there is always someone who either seems to know the cure for cancer or has some advice for you... commonly it is telling you what you're doing wrong and somehow making you feel that you are to blame for it (having cancer).
Quite often I am told if I don't eat sugar and avoid it then my cancer will stop growing and will go away.... or that if I wasn't fat then I wouldn't have cancer.
Another piece of 'advice' I got a couple of months back, was that if I LOVED my cancer unconditionally that it will be unwanted and will just go away.
But what was rather upsetting recently was advice not given to me, but to my little 15 year old sister.
My sister has the same genetic cancer causing gene (FAP) that I have and that my dad had (that is killing me, and killed him)... so you can imagine how hard it would be at her age knowing she has a 100% chance of bowel cancer and has seen her dad and older sister sick from the disease.... it would be rather distressing not knowing if she too would experience what my dad and I experienced.
My sister went on a recent school camp and was asked to share her story in front of her peers, teachers and also to an audience of people attending at a church.
She gave her story and at the end a gentleman stood up claiming to be a doctor and told her "if you avoid red meat for the rest of your life you will never get bowel cancer".
My sister came home all excited and filled with hope. She said to me and my mum "guess what mummy, I am now a vegetarian as I was told by some doctor on camp that IF I never eat red meat again I won't ever get bowel cancer and be cured".
My heart just sank and broke, here she was filled with hope all because someone told her advice that they shouldn't have... regardless of what you eat, if you have this gene you will get bowel cancer.
I had to fight hard to hold back my tears as I told her the reality... I watched that bubble literally burst and it broke my heart.
She had hope... but it wasn't the right advice to be given... he doesn't know our story, he doesn't know our gene and hadn't consulted with our many specialists who are specialists in the field for a reason.
All she could keep saying was "but he was a doctor".
But even doctors should know when to keep their opinion to themselves.
But bless her dear heart, she plans on studying hard to become a scientist to find the cure for cancer.
If you are talking to someone and you are about to give advice of the latest 'craze' going around, please refrain from offerring unwanted advice as the damage can be a lot to someone who is vulnerable, scared and is looking for hope.
Just look at the fall out from Belle Gibson telling people she cured herself of brain cancer, WHEN SHE NEVER HAD CANCER TO BEGIN WITH.
Just remember, words can cause damage... and starting or ending with 'Just sayin' doesn't make it any less of an insult or offence.
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