The F word….

The F word- FATIGUE.

This word gets thrown around fatigue this, fatigue that. But I don’t think a lot of people actually understand the concept other than another word for just being tired.

Damn do I wish that was the case, to just be tired, like I could nap and wake up and feel fresh and energetic!

This is not the case at all when you’re dealing with real life, full blown fatigue.

Fatigue is like this energy zapper that no matter how many hours sleep you get you’re still flat, its tiredness that’s right to the bone.

The whole body feels like you’ve gone 10 rounds with Mike Tyson. The aches are like nothing else. You can’t walk around without the aches making you limp and feel like you’re 90, at least.

I never really understood the full concept of fatigue until this last couple of weeks. I wish my chemo was more predictable but unfortunately not to be.

Every round is different and besides the constant background noise of nausea my body reacts differently each time. Last Monday I received round 4 of FOLFIRI. One of the worst side effects of Ironotican is known to be fatigue.

Until now the nausea over ruled and over rode everything, being so debilitating. Lucky for me I have (hopefully, you can never be 100% sure how the body will respond to the toxic poison that’s being pumped into it every 11days) found my solution to the nausea and with the help of a combination of drugs and Pure Nutrition hydration drinks, I seem to be coping a lot better with that aspect of the side effects.

Fatigue on the other hand, well that is in a league of its own.

During chemo the body is being depleted of everything, essentially chemo is killing everything in your body, good and bad. Couple that with a bit of nausea and being unable to eat much more than toast the body really is left depleted of most things.

Chemo day is ever 2nd Monday. We walk to and from the hospital as we don’t live far and parking is a nightmare. I usually feel OK on my infusion day. I then get ‘Bruce’ my pump for 48hrs. Last week I during my time with Bruce I didn’t actually feel to bad so along with Mondays walking I backed it up with taking Bruce for a 9.5km run on the Tuesday , a trip out on the bike to Sumner, 31.5km, on the Wednesday before walking to Nurse Maude to get Bruce taken out. Then I thought it would be a really good idea to ride again on Thursday (same ride).

By Friday I was starting to feel pretty achy and sore. I thought it was tight muscles from training more than I usually do on a chemo week so I backed off and did a 5km walk instead.

At this stage walking up and down the stairs was starting to become a problem and my legs just ached like Id run a marathon on no training.

I was making sure I was sleeping and drinking loads to keep hydrated. I was eating as much as I could manage, which admittedly isn’t much more than toast on my chemo weeks and sleeping 12 hours a night.

In my mind I should have been recovering, I took Friday easy, why was everything so sore? Why did it feel like I had been run over by a truck?

I just couldn’t make sense of it or understand, yes I know fatigue is a side effect but isn’t that just been tired? I couldn’t understand why I was so incredibly flat. Like couldn’t move, everything hurt, ached, pain like when you’ve done a 30hr training week but without being able to recover.

I spent Saturday and Sunday in bed or on the couch, I didn’t leave the house. I didn’t go outside, getting up to make a cup of tea was a massive effort (and for anyone that knows me knows I love my cups of tea), I felt lazy, massive guilt over the lack of movement and activities. I always feel like I need to be doing something to justify my existence and ever since I’ve been given a timeline for this existence I feel even more pressure to be doing things, accomplishing goals, or ticking stuff of this ‘bucket list’. I constantly feel like I need to be moving, like if I stop everything will fall apart. If I stop it I’m wasting time, and time isn’t something I have on my side.

Constantly having to fight day in day out just to feel some sense of ‘normal’ gets so overwhelming I don’t know what to do with it. Fighting all the time just to be half of what I used to be is tiring in itself without adding the fatigue and all the guilt it brings on top of that.

Nurse Maude are and were amazing, I got in touch with the palliative care team on Monday and Tuesday I had the pleasure of meeting Moira the lovely physio. She explained that fatigue isn’t something that can be slept away. That this isn’t me being lazy and that in no way should I feel guilty about it one bit.

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She explained about the chemo depleting the body and then on top of that I expected my body to go over 85kms because my bodies always been able to do it. She asked me how I expected my body to do this when it has no reserves that not only is chemo taking everything from me, the fact that I’m not able to get in enough nutrients in, how am i expected to ‘perform’?

I never looked at it like that before. To me my body has always just had to do what its had to do. Unfortunately cancer and chemo don’t quiet work like that.  The body needs love, nurturing and kindness. Yes training for me is my happy place but having depleted everything I’ve left my body with nothing. The aching is the body crying out for rest and looking after.

She explained that during this time I need to slow down. That I need to conserve energy for the important things that I want to have energy for. That if i can do something sitting instead of standing sit. That walking up and down the stairs aimlessly because I forget things is a thing of the past and unless i need to go to the toilet I need to make sure I take everything down with me in the mornings.

I need to slow down. Instead of doing three things at once I need to only be doing one thing at a time. The brain expends the most energy and I’m trying to get it to perform two or three tasks in a row and that I need to just be concentrating on one thing at a time.

That instead of smashing out long rides or running for kms on end that I need to nurture my body and gently ride to a cafe, that a 10km ride is enough, that running 2km while taking in my surroundings is better than 10km ruining the body.

All of this is so foreign to me. I’m used to performing, to be able to have my body go day in and day out doing what its told and recovering like it should.

This is such a far fetched way of looking at life for me and its going to take a bit of getting used too.

Being kind and gentle to my body isn’t really in my make up. I’ve abused it for years. Getting my head around this is going to take time and a lot of work but I’m trying. I’m resting were I can, I’m sitting instead of standing, I’m trying to stop the endless aimless trips up the stairs, I’m conserving my energy for the stuff I really want to do, for the important things, for the important people.

So even though my mind is screaming at me ‘YOU’RE SO LAZY GET UP’,  I’m saving the energy and trying to change my thought process from that to a more kind and gentle tone.

It may take some time but I’m determined to learn to nurture my body, to love it and show it some kindness.

I think we all need to take a second and appreciate what our bodies do for us and learn to give them a bit of kindness and nurturing. To stop being so hard on ourselves and to remember we all do the best we can. Love you cos that’s all you have at the end of the day.

Until next time,

Be kind to yourself and keep smiling,

Britt xx

 

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I be famous……Kinda!

A couple of weeks ago I was asked to be interviewed for an article for The Press and Stuff. It was to bring awareness to Bowel Cancer and the lack of awareness not just in younger people but for GP’s dealing with young people and the huge amount of misdiagnoses that is going around.

Early detection is the best way to have a decent chance at fighting and living through this illness. Without early detection people like me are misdiagnosed for years. This has now threaten my life span on this earth hugely. 4-24 months is not a long time to be told you have left to leave a legacy or an impression in the world.

I took the phone interview and had pictures and a video done for the piece that was both online and in print.

I was extremely nervous about how it would come out and the message it would be sending to a very wide and largely uniformed audience.

It came out on Saturday morning I was extremely proud of how it had come across, the video online didn’t have to many ‘ummm’s’ and the article was very informative both in press and online.

The news article online:

https://www.stuff.co.nz/national/health/109989406/young-cyclist-dying-of-cancer-regrets-not-pushing-harder-for-diagnosis?cid=app-iPhone&fbclid=IwAR0ePyW-g-SAuzpv3RMxCsMoH8yh1c9f_oVRj4suxw0ivwqponm8RxGb4Eo

Please take a read if you have a moment!

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There were 100’s of kind, caring and compassionate people out there. There were also a lot of others who told me I should have seeked a 2nd or 3rd opinion or that I should have not been ‘cheap’ and paid for my own colonoscopy.

Unfortunately I had no idea cancer was even in the realm of possibility let along that I would question a doctor I had the utmost confidence in. I never thought I should have 2nd guessed her to get a 2nd opinion let alone something like a colonoscopy.

There were also a lot of comments about the governments and who’s putting more into health and who isn’t. Yes both the current and former governments are at fault and everyone needs to seriously look at the way we screen for bowel cancer especially, and more so in young people.

In other news:

Since I last wrote I went to

https://www.facebook.com/breesglamourcake/

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This place is EPIC and has the most amazing donuts and sweet treats along with amazing pies (review from my pie guy ;)). It was on my bucket list and will defiantly be a place I go back too!

I struggled a lot with motivation last week even though it was deemed my ‘good’ week. This really took a toll mentally and really brought me down. I went on walks and rode around the park with Cameron while he did his runs.

Other than that I really struggled with motivation, fatigue and just feeling good about myself.

I had chemo on Monday, round 4. I still have 2 more rounds until I am able to get scans to see if the chemotherapy is having any impact on slowing the growth of my cancer. If it is I will continue FOLFIRI for another 3 months. Otherwise I will cut it out and just get on with living my life.

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Was able to walk to and from the hospital.

Tuesday I was attached to Bruce and still managed a 9.3km run! Wednesday before I got disconnected I made the decision to go for a ride and managed 32km before meeting a new friend and having an epic lunch, feeling like I’d known her forever!

To is usually when I hit a bit of a wall with my nausea but I managed to get on my bike today and do 31.5km!

I put this down to my new hydration godsend and help!

https://puresportsnutrition.co.nz/

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They reached out to me last week about their hydration products which are all natural and made in good ole New Zealand. They tried to get their products into hospitals in NZ which is such a shame didn’t take off.

They make a product specifically for nausea related symptoms. Honestly these electrolyte products are epic and I am blown away by their generosity and kindness.

Honestly this is the only thing I have changed this week and really stuck to just using Pure Nutrition’s electrolyte range and I’m out there on my bike in the heat nailing it!

Yeah the fatigue and nausea will probably kick in tomorrow until Sunday but having a at least a couple of good days when you’re excepting the worst is a godsend.

Thank you again to everyone who gets to the end of my blogs and that took the time to read the article and for the kind words that were said.

They really do make speaking out worth it and if I can change something for the better and help someone it makes all of this worthwhile.

Updates:

Relay for life: https://relayforlifeselwyn2019.everydayhero.com/nz/cancer-can-trigirl?_ga=2.237071744.1221091669.1548900486-2037045910.1547763067#

This is our team, the funds we raise are going to the Cancer Society who work completely on donations and do not receive any funding from the government. They have been awesome and got me involved in groups and offered support not just to me but the people closest to me, which I really appreciate from the bottom of my heart. The event is the 16th of March, please feel free to donate to any one of our teammates or to me. Would be greatly appreciated!

Rapha 500: https://give.everydayhero.com/nz/rapha-festive-500-bowel-cancer-babe

is is being put off until I get my scan results so we know where we stand with my health and whether we need to decrease the total kms I do in the 8days to make without putting my body at risk. It is still going ahead and all proceeds go to the Bowel Cancer Foundation. They do amazing work and also completely rely on donations and fundraising to keep them going as the government does not fund them either.

Both challenges are great causes and I feel proud to be involved and apart of both of them.

Until next time,

Keep smiling,

Britt xx

 

The curse of the ‘good’ week…

Last week I had chemo. Its deemed my ‘bad’ week. I have Bruce from a Monday until the Wednesday which limits the things I am able to do. Once hes removed Thursday, Friday and Saturday are generally a bit of a write off with nausea and fatigue.

This all then leads to the ‘good’ week. The week I’m suppose to get things done, the week I ‘should’ be getting out for runs and on my bike.

The week I should be trying to limit my loses from the week before. The week I need to live and make the most of it as my time slowly ticks away in the background and the time I’m loosing to chemo is ‘less’ so because I’m ‘making the most of it’ and doing ALLLLL the things.

And then the reality of my life hits. This golden ‘good’ week comes and the motivation just isn’t there.

The anger, frustration and sadness it causes is immense. I’m tired. I should be doing all the things but I’m tired. I feel frustrated and annoyed with myself and my body.

Maybe its in my head? Maybe I just need to take a leaf out of my own book and just harden up and get on with it. Maybe i’m just being lazy. I just need to ‘try’ harder and ‘do’ better.

Maybe…

But maybe I forget my body is being poisoned on a two weekly basis for 48hours. I forget that FOLFIRI’s side effects are fatigue. I forget the more chemo I do ,the more it will accumulate in my body making those side effects even greater and more present. I forget that I’m sick. I’ve felt like this for so long it is my ‘normal’.

I forget I’m not ‘normal’ (whatever normal is), I forget I have terminal cancer, I forget I have cancer and all i feel is disappointment in myself for not being ‘strong’ enough to just get on with it.

I know I have a lot of goals and challenges I want to do and I sit here thinking of them often. I get annoyed with myself that I am sitting here thinking about them and not getting out and chasing them, that I’m not out there bettering myself, that I’m not out there getting fit and feeling the high you get from achieving something.

If you haven’t already picked up on it I am annoyed, mostly angry, with myself. Why can’t I just do it? Why is everything such a struggle? Why don’t I just get out and get on with it?

And then I remember I have cancer, terminal cancer. But to me that isn’t’ an excuse, it isn’t reason enough to not do it. I remember i’m on chemo, and again that still isn’t enough, its still feels like an excuse to not do the things.

Yes I am hard on myself, I always have been and I have a feeling I always will be.

I have a lot of people reminding me I have cancer, I’m going through chemo, I need to be gentle and kind to myself and my body. And yes if someone came to me in my situation I would say the same things to them.

I would tell them to take it easy, to give themselves a break, to be kind, to rest.

I can tell anyone that. I know how to be compassionate to others.

Compassion to myself? No, I didn’t learn that lesson. I’ve always pushed myself, always been hard on myself, always criticised and critiqued the way I do or don’t do things. I have seconded guessed myself my whole life.

I have never felt good enough, that I’m doing enough. I always need to do more, be more, be better. I don’t rest well, I’m in a constant battle with myself.

It’s hard.

Hard to accept that maybe I do need to dial back, I do need to be kind and gentle with myself, that I do need to rest.

But if I do that what does it mean? Does it mean I’m giving up? And if i give up that easily, does it mean I’m giving up on life? That I’m just existing, poisoning my body week in and week out without any real satisfaction from a life worth living?

I question on the daily about doing chemo again. I feel like with such a limited time in this world that I am wasting such a big part of it to being ill with something I am volunteering myself for. I willingly go every 2nd Monday to have this poison pumped into me.

It doesn’t make sense, I know.

But then again I am not doing it for myself. I am doing it for the people around me. I need them to be OK and knowing I did everything I could medically will help them be OK.

I have scans mid February which will essentially will show if the pain and suffering chemo brings is worth it or if its a waste of time altogether.

Until then I wait.

Trying to come to terms with this being kind to yourself malarkey, hoping I’m helping and making a difference to not only the people around me but the people that read this blog, or follow my Instagram or Facebook page.

Trying to remember something is better than nothing. Doing a 10km bike ride or a 30min walk might seem ridiculous and not worth the effort, it is better than sitting around doing nothing because I can’t go out and run for 30mins or ride my bike for 30km (a couple of years ago it wouldn’t be worth getting in my kit if it wasn’t at least a 90min ride! Oh how times have changed!).

So I guess the moral of this rambling-

  • something, anything is better than nothing.
  • be kind and gentle with yourselves, like you would be to your friends or family.
  • chemo sucks and has side effects no matter how much you try and will them away and pretend its fine and that you’re not sick at all.
  • cancer sucks whichever way you look at it.
  • whoever you are and whatever you are going through stay strong, you got this, I believe in you!

Until next time,

Keep smiling,

Britt xx

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Bit of a background and Intro…..

Hi I’m Brittnea (Britt) Chambers, I’m 32 and I have terminal cancer…..

Yeah a couple of years ago I would have introduced myself in a completely different way.

More like Hi I’m Britt, I’m 30 and I’m a triathlete…..

How times do change!

Anyway I’m Britt, in 2017 I was hospitalized for an appendix mass for 2 weeks in the UK and then was sent home. I came back to New Zealand to sort out a couple of things and the next thing you know I’ve had a major operation, lost 30cm of bowel and told I have bowel cancer.

And just like that my  whole world changed.

Cancer.

What?! Me?! How?! Never! I don’t smoke, I don’t drink, quite frankly I’m boring! I’m fit I train hard and race harder. I eat well (ish), I’m an athlete. No one ever mentioned cancer.

Yes I know I had a change in bowel motions but it was gluten and lactose intolerance right? And the anemia and fatigue? Well obviously its down to being an elite female athlete…… right?

Well that’s what I’d been told for the last 5 years anyway.

I stopped going to the doctor because this stomach pain didn’t show up in bloods or samples, there was nothing wrong with me and it was really all in my head. I was a drama queen and there was nothing to worry about.

If only…..

But you can’t think like that, it eats you up, and really you have to make the most of the time you do have. Only worry about the things you can worry about the rest will take care of itself. No point worry about things that you can’t change, its about moving forward, being positive and making the best of the situation you have been given.

I digress;

Long story short:

I had emergency surgery for a perforated appendix mass on Sunday the 3rd of December 2017. I was in hospital for 10 days. A few days after being discharged I was called by a nurse of my surgeons that I needed to come in and see him.

A follow up I assumed as I hadn’t seen him since the operation.

Cancer. Yes cancer.

Wow.

Everything moved very quickly after those words. I was told I’d have to do chemo and had surgery for a port as I was going to be on a regimen called FOLFOX (5FU an Oxaliplatin; aka the devil). This started mid January last year.

It entailed a fortnightly cycle. I would go into oncology in Auckland on the Monday get a 2hr infusion and then my pump (5FU) aka ‘Bruce’ for 48 hours. On the Wednesday I would go back in and get Bruce disconnected. The rest of the week was hell before the nausea and fatigued died down and then I would have my ‘good week’.

Unfortunately I  only lasted on the Oxaliplatin for 6 rounds. The side effects of neuropathy were to great and could lead to permanent nerve damage. I endured chemo for nearly 9 months when my body had just had enough and I was back in hospital and taken off chemo.

I had scans in August in Auckland and told I was ‘cured’! There was nothing to worry about, I was not sick and they had more important people to deal with who were sick and were actually on chemo.

This plus a few other factors lead me to make the move down to Christchurch. I was going to stay down here and try get my head back together and get fit again, get my life back.

But I was still sore, and I was still tired. It would be 2 steps forward 10 back.

Its just the chemo, its side effects, you’ll be fine, you’re better, there’s nothing to worry about, your bloods are good, yes your anemic, but you’re a female athlete.

To many things, to many coincidences.

Two trips to the doctors on consecutive days and the insistence of one of my biggest supports I was sent for a private ultra sound the Wednesday afternoon. Public wasn’t an option as it would have been weeks spent waiting and this had gone on to long now.

A call from the doctor the next day that I needed to be admitted to Christchurch hospital for urgent CT scans. There was nothing wrong with me right? I was told I was fine, I was cured! This was obviously just a precaution.

The 9th of November changed my world (if it could have been changed anymore!). After two CT scans I had a hoard of somber looking doctors, surgeons and nurses come into my room. I knew it wasn’t going to be great.

You have peritoneal disease.

What?

Peritoneal disease. It is a rare, advanced and aggressive form of cancer. It is usually only found in its advanced stages where there isn’t much that can be done.

Worst case you have 4 months, best case 24 months…….for what?

To live.

To hear that changed everything. Things people worry about or take for granted all go out the window. What someone might think of you, you just don’t care anymore, worrying if you’re fat or skinny, ate this or that, none of it matters anymore.

You have 4- 24 months to fit in everything you’ve ever wanted to do with your life. All those things you thought you had time for, you don’t. All those big buck list items you had time to get fit for and to achieve are gone. All those people who cause drama and bring you down are cut.

The only thing you have time for now is what can be done. What you can achieve. The people that love and support you no matter what. You find out the people that stick by and are 100% incredible and then those who just fall down the wayside, but you don’t have time to mourn or worry about those losses, they aren’t worth it.

You only have time for people that bring you closer to the sunshine and believe me those people are worth their weight in gold. I feel very lucky with the people I get to share my life with now.

Currently I’m back on chemo. This isn’t a cure. Its to hopefully slow growth and prolong quality of life. I’m not after quantity, I want quality and I want do do all the things that I can still do.

I’m on a similar regime called FOLFIRI (5FU and Irinotecan), fortnightly cycles with Bruce back for 48hours a time.

I get CT and PET scans mid February to see if its helping slow growth. If it is I will stay on chemo for 6 months if not I’ll come of it as the nausea, restlessness and fatigue with this regime are brutal.

I’m hoping for closer to 24 months than the 4 month mark as I have so many things I want to do and achieve before my time is up.

I want to raise awareness for bowel cancer in young people. If I can help just one person to get checked and not have to go through what I have had to go through that’s a win right there.

I want to inspire and motivate people. Show them that even though you may feel like you have nothing to smile for you have every reason to smile. To show people that no matter what you can get out there and do what you want to do.

If i can do it so can you.

Follow me on some of my crazy adventures and challenges I have lined up for myself, while I try check of a bucket list the size of  my room and make as many happy and memorable memories during that time!

Some challenges to come:

 

Until next time,

Keep smiling

Britt xx

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