I am still here.

Well it has taken me months to sit down at the computer and also to log back into this blog account.  I had always hoped that this blog was going to be a short lived affair.  One that I thought would have been of no use to anyone.

20 plus months down the track with Stage 4 Bowel cancer and having treatment.  I realise that maybe, I might have some knowledge that might help others.

This post may be short or long.  As I have so much to talk about.  I am not even sure if anyone still follows this blog anymore.

The reasons why I stopped blogging.

  • I thought it would be short lived
  • Can’t work out how to log on from my phone, so I can upload photos.
  • I am boring.
  • Friends that I have known who blog have passed away.

Why have I started blogging again.

  • Stage 4 cancer is scary.  No matter what type of cancer. Every little bit of information is seeked when we are facing/living with this cancer.
  • I am coming to the end of current treatment and I should share my journey.
  • I am going to be somewhat in a weird head space after treatment finishes. The time between stopping treatment and just waiting to see if the cancer comes back.
  • And I am pretty dam amazing,  well with the help of my amazing Oncologist Dr PC. I am still here and I have been in remission now for over 12 months.
  • I am currently going through a grueling brutal six weeks of 24/7 chemo and radiation daily.  My Normal friends do not understand what we go through to fight this cancer.  So if I can help others along the journey and give hope that we can thrive with Stage 4 cancer.

So this is where I am at, at this very moment.

Late last year and early 2017, I felt like I was losing a lot of my Stage 4 friends.  It was a reminder of what my outcome could be.  It takes every strength to not give up hope.

Dr PC also encouraged me to blog.  There are so many of us Stage 4’s out in the big cyber land.   Some the journey is too painful to share.  Some need hope and some just get on with life and not want to revisit.

I was floating between getting on with treatment and hoping that there would come a day that I would be told.  In a positive way, that my treatment is ending, with a date because I am still in remission.

That day is finally coming 19th May, 2017.

Not bad for someone who was told she would be on chemo for the term of my life.

While I do not think I have a death sentence anymore and my days seem less filled with dread of having Stage 4 cancer.  I do still feel right at this moment I have hope but I have a life sentence.  It is just lurking, waiting to come back and hit me the moment, I finally let my grip go long enough to start living my new normal life.

I promise I will post again and fill you in with my treatment details and how life in general is now going for me.

Never give up hope.

 

 

 

 

 

 

Still in Remisson – Stage 4 Bowel Cancer

I had my Catscan last Friday.  Which was the same day 12 months earlier that I had my colonoscopy and found the tumour.

I was a little bit worried about having it done on the same day.  The whole superstition thing.  Anyway,  the receptionist told me that my GP and oncologist would have my results later that day.  Knowing that my Oncolgist was away until Wednesday 21/09/16.   Which is my one year cancer anniversary.  I snuck into my GP and got my results.

All clear and normal.  Although I have a fatty liver.  But that is mostly due to chemo and the fact that I can only stomach unhealthy food most of the time.  Due to chemo taste buds.

So I am happy – Yes.  I am still reserved because I need to get to five full years at least without the cancer coming back.  I believe that the Vectibix immune therapy is what is keeping me alive or killing off the cancer.

But today and for the next 2 1/2 months I will live without fear.  Then I will have two weeks of being scared again just prior to scan time.

 

 

Struggle Scan Anxiety time

I can’t believe that I am still here.  I am still battling this cancer beast. I am still fighting with my emotions.  The disappointments but there are plenty of highs and new found friendships.  Loss of new friends to cancer too.  That has been hard. But I am still here.

This week marks 12 months since my colonoscopy, and finding out I had a tumor. I didn’t know this week, 12 months ago that it was cancer.  No one had mentioned the cancer word.  It was the following week.  When I was having a CT scan.  That the lady doing the scan informed me.  “I was there to see the cancer had spread”.  I still to this day remember the day clearly.  I also remember the fear that suddenly surged through my veins and it wasn’t just the CT imaging fluids, going through the IV in my arm.

I remember chatting about how I had Cervical cancer (early stages) in my 20’s.  That surely this was just the same.  Early stages or even maybe she has me mixed up with someone else.  However, as the appointment came to an end.  This lovely lady shared with me that she had just gone through breast cancer treatment and wished me well on my journey.

Shit was about to hit the fan…… I just wasn’t aware that I was going to hit rock bottom of shitfullness of my life again.  I am strong.  I have always bounced back from being dealt crappy cards in life.  But I have always managed to come up again and do better in life, learn from my mistakes.

However, with Stage 4 Colon/bowel cancer.  You can hit rock bottom but you have no control coming back up for air again.  Your life is in the hands of Doctors.  It’s now becomes a new life of scans, blood test, fort nightly chemo and feeling vile after disconnection, It is appointments with specialists and waiting for the next round of scans, appointments blah blah blah… It’s just been 12 months of the same, same but different.

Positives:  I am back at gym.  Although it might only be 3 times in two weeks.  I am still going.  I have booked a holiday with my family next month and will be taking a break from Chemo for two sessions.  That scares the hell out of me.

I am struggling with scan anxiety this week.  I am struggling with lack of contact from friends and family.   To the point now I am no longer making the effort.  It hurts too much from past things in my life.  To keep feeling like I am not good enough or my cancer is too much for some to handle.  So if that’s why they have pulled away.  So be it.

I need to be happy and not invest anymore emotional time into people and relationships that do not value me.  I have the type of personality that always wants to please others even when they have treated me poorly.

I wished that I didn’t have this burden of cancer on me.  One thing that has come from having this and hitting a brick wall in life.  I can see life more clearly now.  All of the muddled up stuff from before.  Has gone.  I can see things for what they are or were.  And highly doubt that I allowed for things to happen in my life now without changing them.

There wasn’t a lot of self-care going on with myself.  I had put everyone’s else needs before my own.  Hey, don’t us parents tend to do that.  Many Mums.  Go for days without looking properly in the mirror.  Because we are just to dam busy looking after everyone else.

I hope that I can beat this cancer.  I hope that I will be around to see the cure for Stage 4 bowel cancer.  I hope that I will be the one cured of bowel cancer.  I have way too many things to still do in life and my son needs me still.  Plus I have way too many people to still piss off or tell them how I really feel.

 

 

 

 

 

I am still here

So sorry to anyone that has been following my blog.  As I have said before.  I always thought that there was no point to my blog as may cancer would be over and done with after 6 months.  So here I am now 10 months out from finding out I had cancer.

Its one year since I left for Thailand to “find myself”.  Gosh I really miss that place.  Yes, its sure is on my bucket list to do.

I have been struggling the last few weeks.  I had another PET and CT scan about a month back.  Bloody hate those things and this was the first time I asked hubby to come with me as I was just too scared.  I had to drink that God awful drink for my CT scan.  I think they forget that us missing bowel people, struggle to guzzle down a huge sippy cup on blargh.

Anyway way my results are still clear.  No evidence of active cancer. But that doesn’t mean,  it’s not sitting waiting, to jump somewhere in my body and start eating away at me again.  I have struggled because, I thought that I would be coming off chemo.  If I had been Stage 3C still.  I would be finished chemo and getting back to my old life.

I have found cancer very lonely.  Between the days of feeling sick. To the days I feel well enough to get out and about. But my skin looks like a cross between measles and a teenagers acne face.  I don’t get out a lot.  With the chemo I usually finished my third day on a Friday.  So the next few days I “Chemo Crash” and its a waste of days with my family as I am just feeling so vile.

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The lovely oncologist has told me I will need to be on chemo for at least another 12 months.  That the IV chemo of Panitumumab, Leucovorin and Fluorouracil.  It’s not fun. It’s not a walk in the park.  But I guess it is what is keeping me alive.

I had a breakdown in his office when he told me I had to stay on chemo.  He thinks I am not mentally well.  Who the hell can feel mentally well, with the roller coaster I am on, at the moment?  I mean, I have gone from Cancer all gone – To Stage 3C to Stage 4 to Remission in under a year.

The thought of dying and leaving  my son, Husband, friends and family.  Brings me to a crying mess at least 3 times a day.  Yes, I know we are all going to die one day.  However,  knowing that our life is going to be cut short at any time due to this vile cancer.  Knowing that the end will be painful and drawn out.  Is not something,I am coping well with.  Who would?

I have had so many plans when I was well.  I felt like I was just getting my career sorted out. Money sorted out and life sorted out.  I know none of that means much when you are sick and looking at Stage 4 Cancer.  I am truly grateful in one way for the way it has made me look at life now.  I can’t take a fancy car or a clean nice house with me.  When I die. None of that makes sense.

While I am alive, I also feel like I am wasting away.  Wasting each day as I have no job, can’t do hobbies because my hands are stiff from chemo. My feet are infected and blistered from the chemo.  So walking is not a great thing.  Although I am trying to do more of it now. So I have this dark hole.  I am a people person.  I need to be doing things and being around people.  Sadly the days I am well don’t always fit in with other people’s plans.  I have also found who are my tribe, my people who visit, call and make plans with me. I have also found that people who I have been for in the past and people I thought loved me.  Make no effort at all.  I am sorry if this offends anyone reading my blog.  But its true.  Yes,  I understand that sometimes people had tried earlier on and I needed to deal with the shit issues I was going through.  But come on its been nearly a year.  That’s my whinge.  I have it off my chest now.

So what else has been happening.  Sorry for the long blog post.

I had my Birthday after getting out of hospital and just having around of chemo.  My bestie took me out for a unbeliveable lunch at a new Yum Chow that has opened near my house.  The food was amazing, I could taste most things. However the crazy thing was. I was hanging to eat steamed pork buns. My all time favourite treat when I was well and had taste buds.  By the time they came out. I took one bite and it tasted vile.  I hate you tastebuds, I hate you!   It was a really lovely day with some shopping and fluffing around.  Still have issues with needing a bathroom as anything in.  Needs to come out quickly with limited bowel and bowel cancer.

I find with food.  If there are too many flavours. My tastebuds can’t handle it.  I was very proud in my previous healthy life.  That I could handle just about the hottest curries and chillies around.  Now plain boring old packet taco seasoning is too much for me to handle. Just yesterday, I had a Salsa’s california burriotto.  (Salsa’s is a food chain store in Australia).  I don’t ever remember it being hot.  But it was so spicey to me.  Like it was the very first time I had eaten something spicy.  Two bottles of water later my mouth had calmed down.

Crazy – I always thought that cancer only changed people in the ways of loosing hair and loosing weight.  Sadly there are so many more side effects…. Depending on what cancer you have and what treatment you are having.

 

 

 

Another Kidney infection

Well I ended up back in hospital last Tuesday. Its always in the evening when things go to shit around my place.  I had not been feeling good. The day started shit with Brodie and I arguing.  I felt terrible dropping him off to school upset.But we have had too many days off from school due to school refusal.  Its not like he wants to spend the time with me. He will just go into his room and play on his computer.

After school drop off I head to the hospital for my blood work before chemo.  I hit a massive pot hole and smashed my tyre. In tears I had to call Andrew to come and fix it.  Wasted $200 the council wipe their hands of any costs.

So I took myself off for a coffee and a juice.  Not sure if the wheat juice shot had anything to do with it and my coffee was flat cold. So I just wanted to curl up in a ball and cry.

I think just the whole day and not feeling well.  By dinner time I suspected I had a bladder infection.  After dinner it was so bad I was bleeding.  So called Dr P and he admitted me into hospital.   I have to say I don’t mind hospital but this time around I was admitted into a non cancer ward and they forgot about me.  I got in at around 8:30pm I was still waiting for pain meds at 2am in the morning.  It was handled pretty poorly.

Anyway…. I am off to see Dr P shortly.  I should have been having my scans this week but due to being in hospital and chemo.  Chemo was also delayed…..It has really hit me hard this session (yay number 15)….. NOT!

I have had some serious dark thoughts and wondered why I even bother with the chemo.  Yes,  I know its killing off the bad guys and extending my life.  But I am not really living like the normal life I had before cancer.    I wish I could be working and have energy etc.

 

 

 

 

Blood work day

Boy I am struggling with today.  Tomorrow will be round 14 of chemo and back on immune therapy as well.  I hate having to sit in the chair. Going from feeling like I am going to sleep to feeling like I am going to vomit up.

Today was tough for me.  Maybe hormonal.  I am not sure.  My numbing patch for my port didnt stick on.  By the time my lovely nurse stabbed me with the nail length needle.  I could feel it going in.  Then my port was blocked.  I did take an anxiety tablet today.  But nothing helped.  Then my port was blocked but she finally got it clear.

While sitting their, I try to remind myself that there are people doing it harder than me.  I often get people telling me “But you have hair and you look so good – You dont look like you have cancer”.  However, this morning I did look unwell.  My nurses all asked me if I was OK several times.

I do feel like crap.  To be honest I am just simply over it all.  I ask myself why did I not push my GP harder and earlier for a colonoscopy.  I would be stage 3 and probably finished this toxic shit every two weeks.

I am often told.  “Oh well you can’t turn back time”.  That is true but sometimes I’d like to wish.   I watched the poor souls having their treatment today.  Looking at the pain and how uncomfortable they all where when the toxic crap was going into their veins.  I hate that feeling.  It will be me again tomorrow and thats when the tears started. At first I didnt feel them.  The joys of chemo.. Not feeling the tears by the time I got out to the carpark and into my car my face was wet with tears.

There I sat having a “Why me moment”.

Why the good people get cancer the ones that want to live.

Why not the druggies, the dealers, the ones in jail who have hurt people etc.

On my journey….. I have met so many beautiful people who are loved and needed on earth.

I have met families of lost ones to this shit cancer.  Who shouldn’t have lost their beautiful children, husbands, mothers, brothers and sisters.

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