So you have cancer ... what do you do now ?

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So you have cancer ... what do you do now ?

I think I'm done thinking about cancer for a while.  It's been a tough year.

 

Before retiring, I thought I'd come here and post an overview of my experiences in case it helps anybody coping with a new diagnosis of cancer.

 

First up:  it isn't the end

I was diagnosed 9 months ago with an invasive squamous cell carcinoma in my mouth.  Inoperable.  They gave me six months to live.  Devastating.  Horrible.  I have three little kids, one of whom is autistic !  What do I do ??   Before getting into any of it, take a deep breath and consider this:  my initial survival chance was 60%.  Sixty percent.  Today, about 9 months later .... I'm cancer free.

Cancer is no longer a (death) sentence.  It's just a word.

 

Learn to compartmentalise

I think that being able to separate things in your mind is a vital skill.  Imagine boxes with labels, and keep the different thoughts and strategies where they belong.  Try hard to keep mental discipline and keep your thinking productive.  What do I mean ?

Okay .. say you're a parent.  You were a parent before the cancer, and you're still a parent now, it's largely separate to your cancer.  Try to keep those matters separate in your mind.  Keep cancer in it's own little box, and deal with it when you are strong and ready to fight the good fight.  Try not to bring it down and pick through it at 3 oclock in the morning.  Imagine yourself as a professional boxer, training for a bout - only deal with the cancer stuff when you're strong and ready to face it, and keep the warm and happy stuff positive and a source of strength.

 

Be selfish

If something in your life is not working, or if you need help .. ask for it.

People are basically good.  If you communicate your needs to them, your needs will generally be respected, and people will try and help where they can.  What you need to do is adopt an immediate and ruthlessly selfish attitude.  "I deserve all the help I can get in this fight .. but what do I need... ?  Privacy ?  Company ?".  Think about what you want and need and mentally prepare yourself to put those needs first.

 

Decide how you feel about numbers and anecdotal experiences

There's a lot of data out there.  My survival rate was 60%, adjusted +20% because my cancer was P16+, +2% because I have a spouse, etc etc.  If those numbers encourage you, then research them (scholarly articles on pubmed are the best source in my opinion - also your doctors).  If the numbers frighten you, then cover your ears and sing "ring around the rosey" any time you THINK somebody may be about to mention a statistic.

Same goes for people's comments and experiences.  Do you find comfort in reading about the good & bad experiences of others ?  Get on your computer all hours.  Does reading about other people suffering and surviving frighten and bother you ?  Firmly turn off the computer, just try and stay away.

 

Own your disease.  Collect information where and when you want it.

If the well-meant questions and advice of others distracts you, or worse, upsets you, TELL the people.  You can be firm and respectful at the same time, but this goes back to "be selfish", you're in the fight of your life and you need support from others.  If they think they're helping but theyr'e actually hindering, tell them "thank you, I know you mean well, but I need you to refrain from that please, it is distracting for me and hurts my morale"

The same strategy applies to your doctors .. if you get upset and prefer not to know .. take a proxy with you to the meetings and you can switch off.  Don't ask the hard questions, put your future & faith in the hands of the doctors.  On the other hand, if you need information and take comfort in it - ask the questions clearly and carefully until you get an answer you understand and are satisfied with.

 

If info you are given sounds iffy, get a second and third opinion

For me it was the dieticians, I personally found them to be misinformed to the point of negligence.  They insisted I don't lose weight during treatment, and my priority was to be calories, Calories, CALORIES.  Nonsense.

The science didnt support it. I was overweight and could afford to lose weight with no impact to the clinical outcomes.  My priorities should have been:  hydration, nutrition, protein, calories (in that order)

But the nutritionists get a broad advice for patients to maintain weight .. and if you are underweight or at your peak weight it's important .. for fatties it's irrelevant.  For people with swallow and taste problems it can even lead to later food aversion issues!  Anyway, it was horribly bad advice, and I regret listening to them for a few weeks before following my instinct and actually researching the science.

Trust your gut. If it doesnt sound/feel right, get a second opinion from an informed source that you trust.

 

Try to keep yourself entertained / distracted

Do you like computer games ?  Great, be ready to play for a six hour stretch starting at 2 in the morning.  Do you read voraciously ?  Cool, make sure you're stocked up with all the reading material you can handle.

There will be times when you wake up in the early hours of the morning.  There's pain, or mental distress, or vomitting or something ... whatever it is, you do your best to alleviate any physical symptoms .. but ideally you have some distraction ready to keep the time moving by.

If there's a God, (s)he has a peculiar sense of humour .. when you're having great fun, time flies by too fast .. but when you're suffering, when you're in physical pain, the seconds stretch out in front of you like a desert - a sterile and uninviting landscape that seems to go on forever ......

So it's pretty good if you can compartmentalise, turn off your stress/worry, and go and play a game of World of Warcraft (or whatever floats your boat!)

When/if you beat this disease, it won't be overnight.  Even with a surgical solution, you're going to have stretches of worry and uncertainty.  If you're taking radiation and chemo, you'll have physical suffering over a number of weeks ... I can't overstate how great it is to have a handy distraction.

 

Quick summary of my experiences

OK, so I was diagnosed in September of last year.  Late stage advanced disease, started in my tonsils and had progressed to both lymph nodes.  Tumour was large and inoperable, it was starting to abutted the jaw and soft palate and before long would start to obstruct my airway.

Being a SCC of the head and neck, and being P16+, radiation is the most effective treatment solution.  I looked at all this literature about supercharging your immune system, but although it made a lot of sense (as a direction for future science), today it rang of quackery if not outright scammery.  I elected to undertake orthodox therapy.

I was uncertain about getting a PEG tube inserted .. I was worried about the surgical risk.  In retrospect, that tube was a godsend, without it my suffering would have been much more profound.  During the late treatment phase I became PEG dependant for six weeks.

The first month of radiation and chemo was quite tolerable, but the side effects accumulate -- over a 7 week course of treatment, it only started to get bad around week 5, in summary I had:

- nausea, constipation and water retention (from the high dose cisplatin chemo)

- pretty unpleasant soreness and burns on my neck (radiation)

- internal inflammation and soreness from the radiation (spitting & vomitting & retching hurt quite a bit)

- horrible mucositis (phlegm everywhere) causing heaps of spitting and vomitting

- loss of sense of taste (this happened almost right after the first round of chemo)

- rancid taste dysgeusia (everything in your mouth tastes like poison - even your own saliva tastes rancid, it's horrible and makes eating a joke)

- final weeks & post-treatment:  burns were bad, had to get daily dressings, had to carry a vomit bad around everywhere I went

- post treatment:  when you finish radiation and chemo, the first months that follow are actually WORSE than everything that came before it ... the side effects compound .. but it's somehow worse because treatment is over and you're not getting the daily contact and support from the professionals.

- 3 months after I had a PET scan .. it was inconclusive, I was devastated.  Doc said "could be inflammation, could be cancer, you have so much damage and inflammation it's impossible for the scans to tell the difference.  We need to re-scan in 2 months"  (in my heart of hearts I was sure they didnt get it all and I was going to die)

- 2 months later, I got the all clear

 

You can get through this.  Good luck.

 

 

 

2 REPLIES

Re: So you have cancer ... what do you do now ?

Hi

Thank you for your post. I have been diagnosed today with stage 3b cervical cancer.. I really appreciate your information under First up:  it isn't the end. 

 

It is just what I needed to read so thank you! 

 

And congrats on your progress 

RJG
Occasional Visitor

Re: So you have cancer ... what do you do now ?

Fantastic post. 

 

I have stomack/oesophageal cancer. My treatment is considered curative rather than palliative. This makes it so much easier to take a positive approach to the chemo and pending resection op. I too compartmentalise things and deal with the details when I'm ready. This means taking a notepad and my partner with me to every appointment. I can jot diwn notes and research them later when I am ready to absorb the information. 

Again, great post and best wishes for your continued journey. 

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