8 things having cancer has taught me

Adapted from http://www.huffingtonpost.com/annie-buckley/lessons-from-cancer_b_4248090.html

I recently read a Stranger’s blog post which was essentially the Top 12 things she had learned throughout her cancer journey. I found I really related to it so thought I would have a go at doing my own Top 10 list, but in the end I only came up with eight. Here they are:

1.       Don’t sweat the small stuff. When you are feeling really wound up about something, step back and ask yourself is it really that important? What would happen if this thing did or did not happen? Does it really matter?

2.       Nothing is as important as people. We cannot exist in a vacuum and we cannot live this life alone. 

3.       People are generally compassionate, vulnerable, complicated and, most of the time, trying to do the right thing. Give people (and yourself) a break.

4.       In the face of tragedy, no one thinks they know the right thing to say. And maybe they don't, but if you're the recipient, listen for what's helpful and let the rest go.

5.       One thing I have found over and over during this challenging time is that I am incredibly grateful for so many things. Take time to sit back and enjoy the world around you.

6.       Everybody is different and every illness has its own path. We can learn from statistics and data, but we can never know exactly what someone else is experiencing.

7.       It's possible, but not necessary, to cram a whole lot of things into one day. (I know from experience, and likely you do too.) But what if we all did a little bit less, a little bit better, and enjoyed it all a whole lot more?

8.       Get/have at least one of the following: income protection insurance, serious illness cover or life insurance. Although money is not the be all and end all, when you unexpectedly find yourself out of work, not having to worry about money can be a saving grace. If you can avoid adding financial woes to an already very stressful time then why wouldn’t you? And none of us think it is going to happen to us – I sure didn’t.

That’s it from me this week.Til next time.........

The week that was

Unfortunately since my last blog, I have had an eventful couple of weeks. The Sunday night following my last chemo round I ended up spending the night vomiting and woke the next morning with a 38 degree temperature. When undergoing chemotherapy, a 38 degree temperature is enough to cause a little panic amongst medical professionals as the chemo itself leads to a weakened immune system meaning that you do not have the ability to fight off infection the same way a well person can and things can go downhill pretty quickly. So this lead to a trip into Wellington Hospital ED and even though the waiting room was chocka-block I was seen within minutes of arriving at ED and was hooked up to IV antibiotics and fluids. After several hours I was transferred to the Cancer Ward and spent the next two nights there under close observation. I bounced back pretty quickly, and the worst part was probably that we quickly had to sort out alternative arrangements for the kids for school and preschool pick ups, drop offs, night time routines etc. Bryan and my parents managed to sort all that out, but it really does cause quite significant disruption to everyone's already busy lives that they could do without. Me on the other hand, just had to sit back, rest, and let others take care of me.

At this point I would like to take this opportunity to pass comment about the fantastic level of care I have received since diagnosis. My multi-disciplinary team (medical oncologists, radiation oncologists, surgeons, nurse specialists etc), have been outstanding, as has every other doctor, nurse and radiologist I have come across. Shame I can't say the same for the hospital food, but you can't win them all :o) One of the meals I had during my most recent stay was so bad that I regret not taking a pic of it and posting it to Facebook! All I will say is that runny scrambled eggs, lumpy yet runny mashed potatoes, mashed carrots and soggy cauliflower should NEVER be served together.

On the same day I became unwell, leading to the hospital admission, my hair started falling out. Initially it was quite similar to a change-of-season malt, but over the next couple of days the rate of hair loss accelerated so that by Tuesday it was coming out in small handfuls, and when I washed it later that morning I was getting large handfuls of wet hair coming out. By the end of my shower I gathered it up and put what looked like a small furry animal into the rubbish bin. That's when I decided I had had enough and it had to come off. So on Wednesday morning whilst still in hospital I asked the lovely Health Care Assistant (and resident hair cutter) to give me a #1. Lovely.

A week on, I am still shedding quite a bit of hair, but at least it is short so much less distressing than getting handfuls of long hairs, and at least its not clogging up our shower or vacuum cleaner. I am also aware that some people experience total body hair loss, so that may be coming. The upside will mean no more shaving my legs  :o)  the downside could be loss of eyebrows and eye lashes  :o( Time will tell.

As noted in an earlier blog, this hair loss was not totally unexpected, so I had been to see a "wig lady" a few weeks ago and purchased a lovely looking wig not dis-similar to my own hair at the time. The main difference being it has a few highlights and I figured it would save me big dollars at the hairdresser. For the first couple of days post head-shave I wore the wig in public, and then took it off when I got home as I was much more comfortable without it. When in public I felt like people were looking at me like "we know its a wig - you are not fooling anyone!" and on top of that, it felt like a toasty warm hat and the weather here had been (quite unusually) stinking hot. So I decided to ditch the wig. I figured if I was ok with it then why should I care what anyone else thought.

At first I was a bit worried about what my kids would say, but they both thought my new hair cut was so funny because I had a boys haircut. So we had a laugh and said silly Mum with a boys haircut. They also knew when I was wearing the wig that it was a wig and don't seem to care either way.

Since posting a photo of myself with my bald head on Facebook I have been inundated with compliments about how good I look, which I find quite comical as I never received that kind of attention when I had hair! Regardless, I understand people are just trying to be supportive and it gave me the courage to ditch the wig in public. I get a few odd looks when out and about but I figure people who know me will get used to it, and people I don't know don't matter.

The worst encounter I have had since going bald happened to be with, of all people, a cancer society volunteer (!) at the Cancer Day Ward yesterday when I was there for round 3 of FOLFIRI. The conversation went something like this:
HER "Ohhh your hair is growing back!"
ME (feeling a bit crook from the chemo so a little less patient than normal): "No, its actually falling out"
HER "Oh you should sort yourself out a wig"
ME "Um, yeah, I have a wig but I don't feel comfortable wearing it"
HER "Why is that? I'm sure you will get used to it! There are some really natural looking ones now."
ME "Yes, but I still don't want to wear the wig. It feels fake."
HER "Oh well, there are some head covers you can get from the cancer society that are actually pretty trendy"
ME (steam now coming out my ears, refraining from swearing at her as I am sure I know the hats she is talking about and I suspect her version of trendy and mine are quite different) "Mmmmm hmmm. I will look into it."
Thank goodness for her she took the hint and moved on at this point. I am not sure why, but she didn't seem to be able to grasp that I prefer to go natural. If I am comfortable with my GI Jane look (as one of the young registrars referred to it as) then I don't know why other people should have a problem with it. Rant over.

Lets's hope this round of chemo is less eventful than the last. Til next time......

The ups and downs of this roller coaster ride

Now that I have given a brief outline of the last 15 months, I thought the next step might be to delve into some of the nitty-gritty detail. This is a story about the highs and lows (and highs and lows) of my cancer journey so far and about how everything is relative.

Like any good story, it has a starting point, lets call this "normal." Life was just chugging along with its minor ups and downs, but to be fair, life was pretty good. Bryan was happy in his job as Acting Manager of a team of Analysts at MED, I had just started a new job (attempting to make the move from Government to the Private Sector) and our kids were happy and settled at their preschool. 

Obviously, the first blow was the initial diagnosis, however once we got our heads around that and into treatment and the mindset that this was only going to take a year and then "normal" could resume, we figured that everything was going to be ok.

The first phase of my treatment involved six weeks of radiotherapy which meant a 25km daily trip each way into Wellington Hospital. Initially I had a bit of a moan about this as we seemed to have a perfectly good hospital (Hutt Hospital) a mere 6 minutes from home. However, after talking to other regulars in the waiting room who had traveled much further than I had (as far North as Waikanae and Martinborough and as far South as Nelson) I stopped moaning and counted myself pretty lucky to live so close to Wellington Hospital. After all, this whole business of treating cancer is pretty expensive and specialised, and as a result there are only 6 cancer centres in NZ. 

On the surface radiotherapy didn't seem so bad. Treatment would usually only take about 20mins (if they were running on time) and all I had to do was lie still on a bed in the correct position for about 5mins. Done. On alternate days I would see either a nurse, a dietician or my Radiation Oncologist just to make sure things were tracking along ok. After the first 3-4 weeks things started taking a toll. My bowel was quite upset about being struck repeatedly by high energy beams and over time this led to extreme fatigue, nausea, loss of appetite and mild burns to my skin. I also had to deal with the fine balance between constipation and diarrohaea on a daily basis. The dieticians were set upon me as weight loss is apparently not a good thing during a course of radiotherapy as they need you to  be exactly the same size and shape for each dose so that the beams hit the same spot each time. Must say I was a bit bummed that they were so unhappy with a 2kg weight loss as I was personally stoked  :o)  All that aside, things were turning a little pear shaped towards the end which meant I needed to have a blood transfusion to bring my blood cell counts a little bit closer to normal. Following that I soldiered on, dragged myself over the finishing line and called that part one done. 

Good news followed, which seemed to make it all worthwhile, and that was that my primary tumour (which had been 8cm x 2.5cm at diagnosis) was "gone." There were no traces of it on MRI or PET, however on the advice of my surgeon and wider multi-disciplinary team, I proceeded with an Abdomino-perineal (AP) resection. 

So the high = radiation worked. The low = I still needed to have a large portion of my large bowel (including my rectum) removed and would now have a permanent colostomy bag.

Surgery followed in late November 2012. The high would have to have been waking up to the news that the surgery went well and they were happy they got good margins (ie clearance around the tumour site). Lab analysis in the days that followed also showed that there had been a couple of pockets of cancerous tissue near the primary site which were also removed, so surgery had been a good call. The low part was when I was told about the spread to my liver as this was not expected and I had a feeling I knew what that would mean for my prognosis.

The recovery from surgery was hard going. I was in hospital for 7 nights (which I hear isn't that long to be on the surgical ward but it felt like more than long enough to me) and recovery at home took about 6-8 weeks. I had a sore bottom for about 2 months, but was happy to be able to take myself off pain killers a couple of weeks before starting chemo as my preference is to be drug free as much as possible.

Just prior to starting chemotherapy I had another CT scan to establish a baseline or starting point to measure the impact of the upcoming chemotherapy. By this time (Jan 2013) the liver tumours had grown big enough to be seen on a CT scan and it showed that I now had multiple liver tumours (too many to count) and they were spread all throughout my liver. 

The first round of Xelox (Capecitabine plus Oxaliplatin) was horrific. I wasn't comfortable in bed, or sitting up, the room spun. I couldn't focus on the TV, or concentrate long enough to even read an email, let alone a book. When I caught a glimpse of the news I found it overwhelmingly distressing. My emotions were totally screwy. Each day went on far too long. Relief came in the form of sleeping pills, and then on about day 4 when my district nurse swapped the Metaclopromide out of my anti-nausea cocktail and added in Domperidone and Nozinan. With the new anti-nausea combo I was able to function again, and I really appreciated what a good day felt like after that. Thank goodness, the following 7 rounds were less eventful now that my anti-nausea combo had been sorted.

There were two side effects of Xelox that hit me the worst after that. The first was the nerve damage it caused to my extremities (fingers, toes and nose) and the second was a horrible taste disturbance that meant everything I ate for about 10 days tasted awful. Nothing seemed to help. The cold sensation I experienced from Xelox was bad enough that on the day of chemotherapy I could not hold a standard knife and fork to eat - they were too cold. I had to use plastic or a kiddie knife and fork. It also meant I couldn't prepare veges for tea (for about a week) as the cold water running over my hands quickly turned painful, and then numb if ignored. Hanging washing was similar. I had to drink luke-warm tap water or hot drinks, otherwise my throat would threaten to seize up. Horrible stuff, but at least it worked.

So the low = horrible side effects. But the high was that after 8 rounds of Xelox my multiple and widespread tumour mets were "gone" and there was no new disease. 

Great news, but received with some trepidation as I have learnt during this journey that even though CT, MRI and PET scans have their uses, they cannot be solely relied upon to detect cancer as they cannot detect abnormalities at a cellular level. So even if it looks like all the cancer is gone, it probably isn't. It only takes one cell left behind (which cannot be seen with the naked eye) and off it goes again. The sole purpose of a cancer cell is to multiply at all costs, and unlike other (healthy) cells in our bodies, they do not self destruct when things go awry. Some Biology 101 there for you.

So, following the news that my cancer was "gone for now" (July 2013) I was put onto active management which basically means a follow up at 2 months, then 3 months, then 4 months depending on how you are going. Unfortunately at my first check up 2 months later the CEA level (a cancer marker) in my blood was back up to its pre-chemo level so I was sent off for another CT scan to see what was happening. I was pretty bummed at this stage as I knew what it meant and had been hopeful for a longer chemo break. In retrospect, there had also been a mental shift during my 2 month chemo-holiday where hope had turned into an expectation that it would be longer. I think I was also holding onto a hope of being in the 1-2% category where chemo actually does kill all the cancer cells. But this wasn't to be.

By the time I got my CT results I knew what they were going to say so I was not shocked to hear that the next step was getting a portacath put in and 8-10 rounds of FOLFIRI would follow. The good news (and we usually can find the good in amongst the bad) was that at that stage my oncologist didn’t feel there was a great hurry to start, so I managed to add another 6 weeks to my chemo holiday. I was thankful for that as it meant I was able to have the school holidays at home with my kiddies without the interruption of chemo, and we headed to Christchurch and Ashburton for a few days to catch up with friends and family down there.

I was supposed to have my port put in the first Friday of Term 4, but the day before that I ended up in ED with a 39 deg temp and severe abdominal pain. Needless to say the port op had to be postponed and I had a couple of nights stay at Wellington Hospital. I recovered quite quickly from that and the port went in a week later, the day before I had my first round of FOLFIRI. I had my second round yesterday (well, I’m still attached, but you know what I mean) and so far so good. I am finding it much more tolerable than Xelox so am very grateful for that. 

So far I have been able to keep my own hair, however unlike Xelox, hair loss is a common side effect of FOLFIRI so my oncologist seems pretty adamant I will lose it this time. So far I have not had any obvious signs of hair loss, but I guess time will tell.

At this stage I would like to touch briefly on the whole issue of living with a colostomy bag and harp back to "everything in perspective." I must admit that living with a colostomy bag is not as horrific as the idea of one. On the whole it has just meant always being prepared (and having to dispose of little bags of poo), and that is something you get used to when being out and about with a baby or toddler. In a strange way parenthood had helped prepare me for living with a colostomy bag.

My next blog is going to focus on the concept of "no man (or woman) is an Island". Obviously this has been a tough journey so far, and no doubt to come, however I would not have been able to make it through without such helpful and supportive family and friends. More to come on that though so I will save it for another day.

Take care, and look after eachother.

The curiosity of my academic and professional pursuits

One thing that I find a little intriguing, given the nature of my current situation, is the academic and professional path I have found myself on. When I was a child, I didn't know what I wanted to be when I grew up. As I made my way though High School and even University, I didn't really know either. I studied Science and Maths as that is what I was good at and what I enjoyed, and ended up with a Bachelor of Science in Microbiology even though I knew by then that I didn't want to be a Microbiologist. I learned about cell biology, genetics, bacteria and viruses, and a bit about cancer. This prompted an interest in Health which lead me to post graduate study in Public Health. I learned about the health of populations, health risks and health statistics. Now I am one of them.

In my professional career I have been a Health Researcher, where I learned more than most people will ever know about the effectiveness and side effects of certain pain relief drugs (of which I have now tried many). I worked with ACC Treatment Injury and Medical Misadventure data for several years where I learned the names of just about every medical procedure under the sun and what could go wrong with them. I learned terminology I never thought I would come across again. Now I am surrounded by it.

In recent years I worked with the National Data Collections at the Ministry of Health where (amongst other things) I extracted data from the Cancer Registry for researchers to analyse. I'm in there too.

And now, I work for the Cancer Team at the Ministry of Health. My current role enables me to feel like I am making a real difference to others who are also affected by cancer whilst still utilising my health and data skills and experience. At times I step back and wonder how this all came about. 

Til next time....

Where do I begin?

Well, this is something I never thought I would be doing. When I was diagnosed with Bowel Cancer 15 months ago, several people suggested that I should document and share my journey. My reaction to that was along the lines of "don't be silly, my story is nothing special.....and what would I say anyway?" However, as time as gone on, I have changed my stance a bit and as I lay awake in a post-chemo haze one night I decided that now is the time. I have been touched and inspired by other people's cancer Blogs so hope that in some little way I may be able to do the same for someone else that might be going through a similar ridiculous journey. I also understand the curiosity around what its like to live with this kind of diagnosis as it is so far removed from most people's reality.

I decided to call this Blog "Just another Cancer Blog" as there are literally thousands of cancer Blogs out there. With each of us having a one in three risk of developing cancer at some stage in our lives, I still maintain that my story is nothing special. I guess a point of difference is my young age, however my new social circle includes several others like me so it probably feels like it is more common than perhaps it actually is. And in relation to my last objection to writing a Blog, no doubt I will run out of things to say, but here goes.

On 9th August 2012, at the age of 33, and on the way to work one random Thursday, I was diagnosed with Stage 3 Bowel Cancer. The weirdest part of this absurdity was that I have always considered myself to be in excellent health. Apart from having my Tonsils and Adenoids removed when I was a toddler and a couple of minor sinus surgeries in my teens and twenties, I had largely avoided hospitals until this point. I hardly even had cause to visit my GP, other than countless trips back and forth for the kids. I probably saw him once a year to two years if that. Looking back, in the couple of weeks leading up to my diagnosis I was more tired than usual but I had put that down to starting a new job. I also had a niggling discomfort in my back passage that turned from discomfort to pain within a few days which, along with a few other unsavory symptoms, prompted a trip to the GP. I was fortunate enough to see a colorectal specialist two days later and he was able to diagnose me on the spot (thanks to modern scope technology). The next two weeks were a blur of procedures and scans to nut down the exact extent of my illness. 

Tears were shed and it was fair to say Bryan (my husband) and I were in a state of shock but also being the pragmatic people we are, just focused on what appointments we had each day and where we had to be when. We also had two young children at home (Zach was about to turn 5 and start school, and Paige was 2.5) so going through the motions each day at home to keep things as normal as possible for them was very important to us. We also decided early on that we had two choices - to cope or not cope. We agreed that if we decided we could not cope then the fall out would be far worse than the alternative. So on we went.

Once the definitive diagnosis was reached, the plan was to have six weeks of daily radiotherapy (coupled with Capecitabine, an oral Chemotherapy), a six week recovery period, extensive bowel surgery in late November, another six week recovery period and then six months of Chemotherapy (Xelox) given 3-weekly.

Back then, I truly believed (based on what the docs had told us and what I knew about my disease) that this was going to be a journey lasting approximately one year, and then we could get back to "normal." One year out of our lives was going to be a bit of a bummer, could have done without it, but at least its only a year yada yada yada. However, everything changed on 26th November 2012. During my surgery my surgeon discovered that even though no liver metastases had been detected by MRI or PET scan in the week prior to my surgery, my liver was indeed riddled with small tumours. I was no longer considered a curable patient, I had now been moved into the "Palliative" category and was told the median survival for people in my situation was 2 years. 

It is now almost one year to the day since then, and I am still well, and even though I still have tumours in my liver, (thanks to Chemotherapy) they are no bigger in size or number than they were a year ago and there is no new disease. I never accepted that I only had 2 years, and I still don't. I see it as a goal to reach, and then exceed. Anyone that knows me is hopefully having a giggle about now. I also feel inspired by a new friend who has made it to the 5 year mark against all the odds and is still fighting. If I can get to 5 years then I will be getting close to 40 and my kids will get to have their Mum that bit longer.