All aboard... next stop.....

Well its been a bust few days, so I haven't been on here to update what's been happening....

On Wednesday I finally stopped my course of both Chemo and Radiotherapy - Yay.... one major milestone done.

hopefully my last every dose of Chemo!


Its funny how I've got into such a habit of traveling into town every day to get zapped that on my first day not having to drive in I felt I was missing something... no having to control my road rage with dumb drivers during my 40 minute commute to the hospital (I think I actually progressed past road rage to having full fledged Tourette's!) , or finding a park or walking past the giraffe .... yes there is a giraffe outside the hospital...... chocolate fish to anyone who can tell me where it is.

Cancer has a way of becoming a full time job - taking drugs, organising visits, going to treatments, picking up prescriptions, fending phone calls, applying creams, gels and other lotions to skin....  the list goes on, and this happens on a daily basis... on top of my usual job (yep.. I'm still working), and trying really hard to fit in such things as picking up Miss 7 to take her to swimming etc. I am sooo lucky I have a fantastic partner who (among other things... the list is huge) picks up all the other pieces, wrangling small child, shopping, cooking, coming to my "big" appointments and putting up with my melt downs ohhh and randomly buys me stunning jewellery.

So what have I been doing since Wednesday?... the big question may people keep asking me is if I'm feeling better... well, hate to break everyone's bubble by letting people know this, but sadly things are actually scheduled to get worse after the final treatment...and yep they have. The principle of the radiotherapy is that it keeps working and "building up" for a period of time after the actual doses stop. This means that for the next 10 or so days after the treatment stops I will continue to get side affects and they may (and will get worse).
This has meant that I have already been back to the hospital for a check up due to some of the side affects relating to my skin breaking down getting worse (and also getting an infection).... this has meant that I have had my pain relief upped (apologies to the poor person whom rang me this morning to be greeted by my best zombie impersonation), which has also meant a decrease in the amount I can work and drive etc. My side affects have also caused my mobility to  greatly decrease (thank you hand-foot syndrome you can fuck off soon, you are no longer on my friends list!), and stupid skin breakdown.

Why does Morphine look like lollies????

there goes my hand modelling career

Not the best photos but for reference my hands are usually normal in colour, currently both hands and feet are bright pink in colour.

 



I should also make it clear that despite this week having some all time lows, there have been some really good moments.....

• I won a 1 hour pamper session at a beauty salon in the city through a monthly draw at the Cancer Foundation.
• On Friday I went to the Look good Feel better workshop... wow this is a fantastic organisation that works with women whom have cancer. They provided trained volunteers that help pamper the women, by giving them make overs, and what's even cooler is that you get to take home all the make up you use! although I wasn't sure about going at first (not physically looking like I have cancer can make me feel rather uncomfortable around those who physically look unwell), I had a total blast, it was nice to feel normal again, in a room full of woman with cancer, not once did anyone mention being unwell, or being controlled by it... it was nice to be around others going through similar things and be just like everyone else.

 

• I FINALLY finished my chemo and Radiotherapy - that in itself is a major up!
• The longer I am off the chemo drugs the better my hands and feet are getting.
• Realising I am not alone..... although I am not feeling this way or have felt this way since my diagnosis as I have a fantastic group of people around me. It is really reassuring to know that no matter how bad my skin looks, or how gross the things my body is doing to itself look or sound, or how bad I am feeling (physically and emotionally) I have people around me that don't care about how I look, they haven't run a mile, or made excuses or have been frightened off.

 

I know things will get better, its a waiting game.... I don't know where my journey will take me and what stops I will need to make on the way, but what I do know is that I am learning such lessons about myself and those around me that wherever this journey ends up I will be making the most of what I have learnt... I will also be in forever awe of the friends and family I have that have been part of this journey...  so all aboard this is going to be one adventurous road trip.......

 

 

till next time...

RAG x

 



 

 

Two to go!!!!!!!

As of today I now only have 2 more radiotherapy treatments to go!!!!! Wednesday is my last day for chemo as well!!!!  needless to day there will be a bit of a party on Wednedsay (ummm by party I mean a lot of cake and icecream being eaten! and maybe a nana nap).

MMMMMM nana naps..... my saviour.... I'm very quickly becoming a nap ninja (I'm proud to say I can actually sleep sitting bolt upright!). Over the last week I have noticed that I am needing to sleep more, and its funny my body is telling me this.... this I have to confess is the reason I haven't posted in the last week... I'm just going to say I was practicing my ninja skills :-)

I plan on updating you all more later in the week, until then I'm off to master my ninja skills....

take care
RAG x

"I'm sexy and I know it..."

".....When I walk in the spot (yeah), this is what I see (ok)
Everybody stops and they staring at me
I got passion in my pants and I ain't afraid to show it, show it, show it, show it...

I'm sexy and I know it...."

I'd like to thank the band LMFAO for producing one of the most annoying and yet catchy tunes ever!

So about now I bet your wonder exactly how much drugs I'm on right now or how bad my Chemo brain has got as why I'm quoting bad song lyrics....

The answer my friends is related to an event that took place 12 months ago, and where I wish I was right now. Every year at this time, a hardy (and possibly mildly insane) group of mountain bikers take to the 6 and 12 hour Day Night Thriller event.
This event involves both solo riders and team riders riding a set loop for either 6 or 12 hours - trying to ride as for as long as you can in the hurt box.
For the past 2 years I have been one of them, choosing to ride for 6 hours as a solo. This year I was aiming to try my hand at the 12 hour solo. So where does "I'm sexy and I know it " come into this?
Well at the start of last years race (at the start of a very long 6 hours on a bike).. what song should be blasting at the start line... and remain firmly embedded in my brain for the entire race??? you guessed it! "wiggle wiggle"

Cancer sucks... so not only am I not sucking it up and riding in the hurt box (yep I'm a little insane by actually choosing to do this), but I'm not allowed to ride my bike at all at the moment.

A lack on bum on seat time is rather frustrating, especially since the weathers been so great recently... I am seriously on the countdown to getting back on the bike.... fingers crossed my skin heals fast after the Radiotherapy finishes!!!
With a lack of direct bike related activities I have been spending a fair bit of time looking at bike porn on the internet (FYI to all you non bike people reading this, this DOES NOT involve some weird sex thing with bikes.. its just about looking at cool bike stuff... like food porn but with wheels and helmets) and races to do for next year.

I've now set myself some goals.... Cancer sucks and its controlling so much of my life at the moment, so the goals I've set (watch this space they will be revealed in due course) take that control back...
Included in those goals is to do the 12 hour solo ride this time next year.... so roll on the pre race carb loading at Hells Pizza, and the post race victory/ recovery (Oh shit I just completed 12 hours) cheese cake on the finish line! better start dusting off those cowbells for the finish line.

watch this space people... cool things will be happening......

RAG x x x

Two weeks and counting!

In 2 weeks time I will have finally finished both my Chemo and Radio therapy. Weirdly a part of me is really excited about this, whilst another part of me is totally dreading this.

Excited, because it means that this part of the journey is coming to an end, and I can start to focus on getting back to health (my body is starting to take a bit of a real hit at the moment) before I get sliced and diced in early November.

Dreading..... because it means that the next two weeks (and 10 days after it) will involve all my side affects intensifying, and to be honest my current tolerance level of managing them is starting to breakdown as much as my skin is.

They say that the last two weeks are the worst, and I'm beginning to understand what they mean... there will be a party when I'm finally drug free!!!!

The one thing I can not complain about is the support I have been getting, from friends, my co-workers, my family and from the hospital.  Every little thing helps (from the FB messages, emails,  txt-its great coming out of getting zapped to find messages on my phone!, care parcels, smiles, cups of tea being made for me, coffee invites, offers of holiday homes, offers of babysitting, random/ sneaky rib grabs/ tickles at the supermarket -yes I knew this person really well... so this doesn't sound so creepy!), and means the world to me!
If your reading this you are one of these people.... thank you!

So as I sit here and think of whitty and profound things to write, all I can say is that if I can say one positive things about having cancer, it would be its made me realise who my real friends are.

Friend are those "cool kids" whom you want to hang out with and most of all they want to hang out with you!

thank you, my friends x

The double down effect

The aim of Chemotherapy is to kill the cells in the body that divide rapidly (this is one of the characteristics of most cancer cells)… yay for killing cancer cells, however the down side is that it also kills good/ healthy cells – boo. Which means that despite doing an awesome job of taming the dog so to speak, it also causes a variety of other side effects that are less than desirable.

Radiotherapy is used to control cell growth, it does this by damaging the DNA of the cancerous tissue, this is pretty cool… die cancer die! The down side of this is that it can’t discriminate between good tissue DNA and cancer tissue DNA (and sadly I’ve been told this damage to my DNA will not give me X Men powers).  Getting a ionizing radiation beam zapped onto your body leads to a few other logistical issues… to get to my mass, I am required to lie on my stomach so the beam can be aimed at my pelvis area. This means that pretty much all my healthy organs/ tissues in that area are going to get a solid microwaving. To try an  spare normal tissues (such as skin or organs which radiation must pass through to treat the tumor),  the radiation beams are aimed from several angles of exposure to intersect at the tumor (BINGO… found it!) which provides a much larger absorbed dose there than in the surrounding healthy tissue. Now it doesn’t take a brain surgeon to work out that despite the precise lining up of the rays, there is going to be some collateral damage… yet again yay for killing cancer, and boo for side affects.

 

Having a combination of both Chemo and Radio leads to the prospect of double side affects (about as much fun as the nutritional content of a double down burger).... some overlap, and others take on their own characteristics... oh the fun....

 

Whilst I don't look sick*.... and some days I feel a bit of a fraud having cancer when I'm feeling so good, but then there are other days where I'm feeling bloody awful.... its not the mass that is painful or makes me sick, its the side effects that  are the least pleasant part of this process.
**NB ~ despite what movies and the media want everyone to believe, not all people with cancer look like they are on their death beds 24/7

lets list some of the potential side affects (of both Chemo and Radio)... I currently am only experiencing 8 out of 12 so far... let hope it stays that way.

• skin breakdown around the treatment area (splitting, general soreness... think sunburn crossed with paper cuts)
• hair loss (FYI I'm lucky, the treatment I'm on means I will keep the hair on my head and face.... any thing below the belly button is a goner).
• hand-foot syndrome
• tiredness
• V and D's
• nausea
• stomach pain (due to the radiation nuking the small / large intestines)
• early menopause (medically induced menopause is the formal term)  
• dry/ gritty eyes
• changes in taste
• sore mouth
• decreased immune system
• the list can go on...

So as I try and focus on the good days, I have got a lot of help to manage the bad (keep in mind I'm still working 40 hours a week... I've been told I have got a pretty good "work/ poker face")... DRUGS... they rock, but are funny things... whilst they give me relief for some of the side-effects, they then create their own side-effects, and sometimes I feel a little chicken and egg...

I have an amazing team of people looking after me... they all work so hard to keep me going and moving forward at a time where you could easily curl up and go back to bed.

Teams are only as fast as their slowest member... that would be me when it come to this team.... whilst I might be slowing down,  the rest of my team is helping me push forward and I am more than grateful for that... while I might be slow, I am planning on putting in a stealth attack at the end....... watch this space!

take care peeps
RAG x x x

PS.... today is another milestone... I am now just over half way!!!!!

Nobody sings songs about cancer of the anus

Todays blog title is brought to you by my beloved other half (if you haven't already guessed, we share a very similar disturbing sense of humour).

random fact time..... songs written about cancer, or feature the word cancer in the lyrics (the things you do when your bored (not that that happens much).

My chemical romance - Cancer Lyrics 
 NB... peeps this is a ripper of doom and gloom

Various artisits singing - Just stand up (to Cancer)
Get your pom poms out with this little ditty... there are several more like this... picture Live Aid styles but about lumps, bumps, chemo and hair loss

Randy Stonehill - Lung Cancer
As positive as it sounds, down to the description of the other health risks of smoking... RANDOM

Sufjan Stevens - Casimir Pulaski Day
Well up on the doom and gloom front

Nirvana - Heart Shaped box
debate is still going as to if the cancer reference is about actual cancer or actually about Courtney Love (either way being inflicted by either isn't fun).


So anyho, the point of my blog today.... well nothing really, just like a lot of things, there is no real point to it other than it just is.... but I bet you smiled about at least one things written there.

Smiling is good, it means there is light and life.... so often Cancer is seen as doom and gloom, I guess that is what sells movies, books and bad songs (leaving Nirvana out of that list tho).

I plan on changing this, well at least as much as I can, Cancer sucks, yep, it has the potential of not ending well for many people, stats for different people and different cancers vary, not everyone is the same. I do want people to know that not everyone with Cancer has a one way ticket.

One thing that has really changed my view of people with cancer (its very different being on the other side of the label) is that over the past couple of weeks of going in and out of the hospital and being around the Radiotherapy department, is that everyone smiles at one another. Its not that we are happy to be there, or that we are happy to have cancer, its about being there for each other, and that knowing that the other person is most likely feeling as shitty and crap as you are, that a smile (no matter how big or small) is one way they can acknowledge that your not alone.

Smiling is good..... do it more and often....

OK so enough randomly rambling for the night....

Night x