Another Day, Another Eyelash!

Now that chemotherapy is finally over I’m reflecting on how fortunate I am to live in a country with a comprehensive health care system. Since July I’ve received thousands of dollars worth of world class care and pharmaceuticals and the personal cost has been under $1,000. Surgery is still to come, and there will be some expenses there, and then radiation could cost anything up to $2,500 but I’m also being treated as a private patient. I could have been treated for free if I’d chosen to do so.

It’s been a hectic week with my 52nd birthday, Christmas the next day, and then a party on the 27th to thank my unofficial support team of friends and family that have stepped up while I was having chemo. In my mind I differentiate between ‘gratitude’ and ‘thankfulness’. Gratitude for me is a process of reflection whereas thankfulness involves actively expressing my appreciation to other people. Both are important. We called the party “Thanks for the Mammaries” and my daughter organised this hilarious cake.

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Yes, it was just a bit creepy cutting into it and I was spontaneously driven to slice out the corresponding tumour site and hurl it into the garden, much to everyone’s amusement. As I type this there’s the remains of the cake, a now sad and partially eaten breast, sitting under glad wrap on the kitchen bench. Hmm. Better finish that off today.

I’ve got a three week gap between my last chemotherapy session and the surgery to remove the tissue from my breast where the tumours used to be. I say this hopefully. While my oncologist is confident of a full pathological response, we won’t really know until the post-surgical pathology how successful we’ve been. The challenge now is to stay happy and well and not to start digging a mental hole for myself. The shovel for this hole sounds like this:

“I am not getting any chemotherapy drugs and if there are still cancer cells left in my body then they are going to start replicating between now and surgery.”

And like this:

“What if there are still cancer cells and in the next three weeks the cancer metastasises and I end up with tumours in my bones, or my brain or some other part of my body?”

And like this:

“AAAAAAAAAAAARRRGGGGGGGGH!

I am responding to these unpleasant thoughts by reminding myself that I had a very early, very good response to chemotherapy.  I’m also remembering that it’s only three weeks and while that’s the doubling rate for the original tumours it’s reasonable to assume that any residual cancer cells aren’t going to have the time to become substantial, and hopefully there are NO residual cancer cells anyway and wouldn’t that be great and hold on to that thought…………

I’m also chanting my favourite dealing-with-cancer mantra: I’ll cross that bridge if and when I come to it.

Realistically, I have no choice. I can’t go straight from chemotherapy to surgery because I need the delay for my immune system to bounce back. And boy is it bouncing! My hair seems to be trying to set some kind of record for growth. It’s recently occurred to me that perhaps the reason chemotherapy patients spend so much time obsessing about hair is that it’s a very good way to stay distracted from many of the far more frightening things we could be thinking about. So I massage my head, check the length of my fine, white hair, gaze at my strange, male-pattern  baldness and smile at the first signs of regrowth and when I’m bored, I check my eyebrows and eyelashes. Last night I tried to clean off some eyeliner only to discover I was rubbing at five or six genuine, black eyelashes. I suspect only people that have lost all their hair can really appreciate how exciting a single eyelash can be.

I had an interesting conversation with one of the breast care nurses at the chemo cottage. When she asked how I was coping I told her how lucky I’d been. She told me that I haven’t, in fact, been lucky. “You’ve had all of the same side effects that everyone else gets. The difference is your attitude. Things that other people complain about, get distressed about, you just shrug your shoulders and see it as proof that your drugs are working.”

Which brings me to my other favourite cancer mantra: It’s better than being dead!

Yesterday we took a friend to lunch at a wonderful restaurant on a river where the only way in is by boat. A woman came up from the wharf and sat down in a vacant chair at our table. She started crying and explained that she’d recently had half her lung removed because of cancer. She was finding the shortness of breath distressing. We talked about cancer for a while, as you do, and then I said, “It seems to me that no matter what else is going on it’s still better than being dead.” She sat up as if I’d pinched her, smiled, wiped her eyes and said, “Of course. That’s true isn’t it!” We spoke a bit more about enjoying every day, being in the moment, making the most of it and really thinking about what all of those ‘survivor’ clichés mean. I think it helped. She caught my eye a few times during the afternoon to smile and give me a ‘thumbs up’.

If both of us had been diagnosed ten years ago there’s much less chance we would have ever had that conversation. The advances in cancer treatments continue to improve survival statistics. Recently a technician told me that my father’s cancer, bladder cancer, doesn’t kill anyone any more.  I know that people that get cancer ten years from now will receive much better treatment than us. How wonderful. It really is only a matter of time before this disease is conquered and it’s great, in the gap between chemotherapy and surgery, to remember that for many, many people a cure is possible right now.

And when all else fails I count eyelashes.

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Metal Mouth Madness

I’ve been lucky. The dreaded ‘metal mouth’ that so often accompanies chemotherapy has waited until the last four weeks of my treatment to descend. Up until now I’ve been able to eat well and enjoy my food. Suddenly everything tastes like I’m licking a cast iron frypan.

A quick consultation with doctor google and I discover that the cause of this condition (known medically as dysgeusia) is unclear. I suspect it’s related to the peripheral neuropathy that kicked in around the same time. It makes sense to me that if the nerve endings in my mouth are being damaged in the same way as the nerve endings in my hands and feet then my sense of taste would be affected. Of course, it might just be coincidental.

What’s clear from my research is that we all react differently. There is no ‘ideal food list’ for metal mouth and everyone needs to find their own strategies for coping with it.

I think the biggest issue is poor nutrition.  I’ve had stretches of feeling like I don’t want to eat anything and then, when I finally find something that tastes good, I over-eat. Some of the foods that taste really good are not healthy options. I can’t live on salted chips and dark chocolate! There has to be a better way.

Here’s the tips I’ve found on the internet:

  • Maintain good oral hygiene – brush your teeth before and after each meal.
  • Choose and prepare foods that look and smell good to you.
  • Eat small, frequent meals.
  • Do not eat 1-2 hours before chemotherapy and up to 3 hours after therapy.
  • Use plastic utensils if food tastes like metal.
  • Eat mints (or sugar-free mints), chew gum (or sugar-free gum) or chew ice to mask the bitter or metallic taste.
  • Substitute poultry, eggs, fish, peanut butter, beans and dairy products for red meats.
  • Marinate meats in sweet fruit juices, wines, salad dressing, barbeque sauce, or sweet and sour sauces.
  • Flavor foods with herbs, spices, sugar, lemon, and tasty sauces.
  • Chilled or frozen food may be more acceptable than warm or hot food.
  • Try tart foods such as oranges or lemonade (this may be painful if mouth sores are present).
  • Avoid cigarette smoking.
  • Eliminate bad odors.
  • Eat in pleasant surroundings to better manage taste changes.
  • Save your favourite foods for when you finish treatment
  • Increase your fluid intake.

The tip about maintaining good dental hygiene is sound, but I really think brushing six times a day is obsessive and impractical. It’s also likely to wear your gums down if you’re not very gentle. I have found that using my toothbrush to clean ALL of the inside of my mouth, including my cheeks and tongue, really seems to help. Perhaps it’s the action of stimulating the nerve endings. When ‘metal mouth’ is particularly bad, giving your mouth a good clean might help.

I haven’t found that eating during, before or after chemotherapy makes a lot of difference. I often crave sugar or salt within half an hour of treatment. We’re on the road home when this happens so I carry little tubs of fruit and a brand of snacks called ‘Mary’s Gone Crackers’ that I get from the organic shop. They’re made with linseed, so they’re high in omega 3, and they’re low in fat. Unlike a lot of similar products, they really are as satisfying as chips but they’re also as more-ish.

I haven’t found that switching to plastic utensils makes much difference. I’m still using my metal water bottle too. My brain knows that it’s not either of these things causing the metal taste and switching won’t solve the problem.

I can’t stand mints. The combination of mint and metal is awful but it might just be me. I do find that dark chocolate pushes back and so does anything salty. One of my best discoveries has been bananas as a snack food. A nice, tart apple works for me too.

Soda water has been so useful that I’ve bought one of those systems to make my own and I keep several bottles of it in the fridge. With or without a squeeze of lemon juice it’s great for hosing down the iron taste and a healthier option than chocolate.

When it comes to advice about marinating, spicing or switching proteins I’ve had mixed success. Some curries are a treat and others are inedible. Cinnamon seems to be something of a miracle and I’ve had one meal where just adding some cinnamon to the curry transformed it. Worth a try, particularly if the other option is to bin it. I’ve also found that fresh herbs can lift the inedible into the acceptable category, especially chopped parsley, chives, tarragon and thyme.

For categories of food, it’s Italian and Lebanese that are working best for me right now. Anything tomato based with lots of herbs (pizza, pasta with sauce, lasagna) is so delicious I feel as if I’m descending into a food-fuelled frenzy. When you haven’t been able to enjoy much of anything, finding something delicious is very exciting. Last night my husband collected Lebanese take away that was also a delight.

I love food. In my pre-cancerous days one of our favourite things was to dine out. Fine dining or just the local Indian, we love it all. We also love to cook beautiful food for ourselves or to share with our friends. Not being able to taste things has been a shock, but it has given me a new appreciation of how important good food is for me, and what a wonderful source of enjoyment it will be when my taste buds return.

In the mean time, I’m doing the opposite of what I’ve always done. I usually prefer to savour my food, to give it the attention it deserves, and to do nothing other than share good company while I do. What’s working best for me at the moment is distracting myself while I eat. I read or watch television. I find that cook books and cooking shows are a great way to remind me of the pleasures of food, to stimulate my appetite and to distract me from the mundane metallic taste that accompanies almost everything.

I’ve found it helpful to think ‘tomatoes’ instead of ‘metal’. The two tastes are so close, and somehow redefining it as tomato flavoured makes it much easier to cope.

I’m really conscious of paying attention to good nutrition. I know there’s a school of thought that says, “Hey, you have cancer and your appetite is chemotherapy’s handball so just eat whatever the hell you want!” but if I’m going to give my body the best chance of beating cancer then food is part of my arsenal. So much research on nutrition points towards the impact it has on all aspects of our health, including the ability to prevent cancer and to help the body fight it. While I have ‘metal mouth’ I’m eating by numbers; making sure I get enough macro and micro nutrients to nourish my body.

Like so much of this treatment, the key for me is in the head game. If a temporary loss of taste is the part of the price I pay for killing cancer then it’s a small price. My drugs are working. My body is fighting and my nerve endings are casualties.

Only a few more weeks to go.

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Christmas: If You Can’t be Merry be Bright

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It’s coming on Christmas.

There’s the usual insane rush to the shops and the grumbling about getting together with people unliked, unloved and unimpressive. There’s the cheesy ads with perfect, laughing families as a stark contrast to what, for most people, is a very different reality.

Personally, I enjoy Christmas. We buy a decoration each year that has some sort of relevance; a car the year Zoe learnt to drive, an embroidered crown from Oxford for our big trip together, a high heeled shoe for the year she finished high school. This makes putting up the tree an absolute joy as we take out the decorations and remember. This year we included her beautiful live-in boyfriend, Stuart. He’s a skeptic and an atheist but I think he managed to enjoy it. Graham, as usual, was honorary grinch but he did manage to be present, and even to hang a couple of decorations. I think we’re starting to get to him.

On Christmas day we won’t go into any kind of frenzy. I like to say ‘It’s just lunch’. Graham’s parents are joining us and bringing ham and oysters. We’re lashing out on lobsters this year because they’re my favourite and when you’ve had a cancer diagnosis it’s suddenly important to eat your favourite things when you can. In anticipation of me being tired, Zoe’s stepped up to take care of salads. My dear friend, Cat, will be here for the week. She’s an amazing cook and will no doubt whip up something brilliant. Two of our close friends, Murray and Pam, will be joining us after their traditional family brunch. It’s going to be great.

My Mum was invited to join us but has opted to spend it with a friend that’s about to move out of the area and my sister. My sister and I don’t get on. We had a serious falling out several years back that resulted in me, after much soul searching, breaking off most contact with her. But truth be told we have never been close. Our childhood was distinguished by horrible, hurtful fights with both of us treating each other badly. As adults it seemed impossible for us to be at the same table without there being an argument. After one particularly unpleasant Christmas day, where I paid for all the food, spent three days preparing it, shared it with my family and endured a horrible argument I decided, as I was doing the cleaning up on my own, that it was time to redefine Christmas.

Just to be clear, I never said I wouldn’t spend Christmas with her, just that someone else could organise it. Having all that work and cost rewarded with verbal attack left me tired and angry. Life is too short. We’ve had two or three family get togethers since then, mostly for my Mum’s sake. After the last one she said, “I think I need to just accept the fact that I’ve raised three very different children and it’s not a good idea to put you all in the same room.” My brother never takes sides. She was talking about my sister and I.

I don’t bear my sister any ill will. I really do wish her a happy and successful life. I’m just pragmatic about it. The two of us at the same table invariably results in a pointless argument for both of us and the distress of watching us have one for everyone else. Christmas, and life generally, has been a lot less stressful without her in it.

When I worked in child protection I saw the pointy end of dysfunctional families. We’re nowhere near as bad. I’ve seen cases involving incest by fathers, mothers, brothers and sisters. I’ve even had cases involving grandparents. What was often shocking was the extent to which those family members not directly involved would know what was going on and just choose to ignore it. It was as if by playing ‘happy families’ they could make it all go away. For the victims, this compounded the damage done to them. Not only was a trusted family member abusing them, other family members were failing to protect them or, when the abuse was discovered, to get them the help they needed to recover.

These were extreme cases but at Christmas I still see examples of the same kind of selective blindness; people feeling obliged to gather over a meal because of ‘tradition’ or because they fear the consequences of refusing to attend. Spouses and partners forced to endure rudeness or disrespect because their partner wants to join a ‘traditional’ family meal. I understand. It can be much easier to just get through it than to have the fight.

I used to be in this situation. In my first marriage, my husband’s mother made it very clear that she considered me an ‘unsuitable’ person, due mostly to my left wing politics and lack of religious beliefs. I was also opinionated, outspoken and a feminist. None of this sat well. As a well-bought-up private school girl she had a great skill for saying something offensive but wording it in such a way that she could claim ‘misunderstanding’ if she was challenged. “Oh that’s not what I meant at all!” and suddenly she was the hurt party.

I was advised by a very wise friend never to make my husband choose between me and his mother. It’s an impossible thing to ask anyone to do. I got through it my having two things; a time limit and an exit strategy. We would agree before hand what level of behaviour would be a trigger for us leaving early and how we would do that without it being confronting. We never needed to use it but I was ready to fake a throbbing headache and my husband was ready to respond accordingly. We always stuck to the time limit.

My strategy was to pretend I was lunching with a stranger. Have you ever noticed that we are much kinder to strangers than we are to family? I would nod politely, ask relevant questions and keep my opinions to myself, even when the opinions being expressed were offensive to me. Okay. That stuff about poor people totally deserving it did provoke a response but it was a calm and polite response and not the “Are you fucking kidding me!” that first sprang to mind.

Over time a curious thing started to happen. I came to appreciate this woman’s strengths and admired many things about her. We shared a love of gardening and I learnt a great deal from her. She had been a single parent during a difficult part of history and she’d done a great job with her three sons. Ultimately I came to be grateful to her for having and raising my husband to be the kind, compassionate human being he continues to be.

It worked out okay in the end. If it hadn’t I’d have stopped going. I just don’t see the sense in putting myself, or anyone else, through that kind of agony. Why? What does it achieve except another deposit in the bank of bad memories.

We’re trying to make it just another Christmas this year. For a while it looked like it would be my last and, pragmatically there’s still a risk it will be, but we’re not making it about that. It’s just a lunch with great food and even better company.

We don’t do gifts to extended family and this takes a lot of the pressure off. We do silly, funny, meaningful, price limited gifts with Stuart, Zoe and each other. We keep it simple. It’s going to be a very merry Christmas.

But I still spare a thought for those who have lost someone dear to them, those who can’t afford a roof over their heads or a meal with friends, those who have only demons at their table and those fighting serious illness. Christmas can be a difficult time for a lot of people and we always make the effort to clear the house of anything reusable and donatable along with making cash donations to the limit of our budget. I think that’s more Christmassy than expensive gifts.

I also think it’s a good time to think about ways of making this time of year a special occasion with deep spiritual significance, regardless of your religion or absence of it. Here’s my personal list for generating real Christmas spirit:

1. Apologise to anyone that feels you have hurt them (even if you disagree) and ask how you can make amends.

2.Forgive anyone you feel has hurt you (even if they don’t apologise).

3.Be grateful for everything you already have. 

4.If it isn’t beautiful, useful or necessary then move it out of your home. (Don’t donate garbage to charities because it costs them money to get rid of it.)

5.Say ‘thank you’ to anyone that has blessed your life this year with love, kindness, expertise, friendship, laughter or wisdom. Send cards. Tell them face to face.

6.Give money to your favourite charity, or to several. If you still have lots of gift giving in your family then ask people to donate on your behalf rather than adding to your accumulated stuff.

7.Have the conversation this year about how to make Christmas better next year. If that means saying ‘from now on we’re staying home for Christmas’ then do it pleasantly and don’t look back.

8. Have the conversation this year about how to make the gift giving less expensive and less crazy. Graham’s parents give us dinner out and we return the favour. We get two great meals together and no need to buy gifts. For other branches of the family we’ve just agreed not to exchange presents.

9.If you don’t already have a spiritual practice around Christmas then start one. It might be attending a place of worship or sitting around a fire and talking about what was great this year. It might be holding hands and singing or getting everyone to list three things they’re grateful for. It only has to have meaning for your family to be beautiful.

10.Consider hosting an ‘orphans Christmas’ next year. Invite any friends that are on their own either by choice or circumstance and have everyone bring something. In my experience these are the BEST Christmas meals you can possibly have.

If, like me, you’re busy killing cancer this year then there’s a couple of extras for you.

1.Take it easy and let everyone else do the work. Stop worrying that it won’t be good enough and let it be different to how you would have done it. Put your feet up. Point at the spice cupboard. Hand over the recipes.

2.If there was ever a year to have exactly the Christmas you want to have then this is it! Don’t give in to pressure to spend time with people you don’t like. It’s all about you.

3.Stick to your treatment schedule. Yes, it’s traditionally a time to overindulge and a little of what you fancy is surely good for you, but a LITTLE!

4.When your mind starts to lure you down that hole labelled ‘Is this my last Christmas’ respond with things like ‘Couldn’t any Christmas be that?’ and ‘It could be anyone’s last Christmas’ and ‘Shut up and pass the lobster.’

5.Take some time out if you need to. It can be tiring being merry if you don’t feel like it. If you can’t be merry, be bright enough to get out of there.

And finally, here’s a Christmas present from me to you. Here I am on my second last chemotherapy drip. How many to go? Yep. Only one! Fuck you cancer!

P1050918And for an extra giggle, here’e the gingerbread house I made yesterday. Zoe and I made one each. You can tell which is mine, I’m sure.

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Poetry from China

When Breastscreen staff told me that I had triple negative breast cancer my distress was compounded by circumstance. My only child, my beautiful twenty year old daughter, was on holidays in China. It would be a week  before she was home.

I agonised about whether or not to tell her.  My first instinct was to wait and let her enjoy her holiday. Then  a dear friend reminded me that Zoe and are are very close, and the chances of her going a whole week without picking up that something was wrong were slim. There was also the risk that she’d find out via Facebook or through some other means and would be very angry that I hadn’t told her. I decided to tell her. It was the hardest call I’ve ever had to make.

Yesterday Zoe told me she’d found a poem that she’d written after I’d rung her to say “I’ve got cancer.”

She’d forgotten about it and found it the other day when she was cleaning. She read it to me, and we both had a bit of a cry. I think it’s very beautiful, but it did make me so sorry to have put her through all of the distress that comes with this illness.

It was also a great opportunity to see how far we’ve come since diagnosis. Those first few weeks are fraught. Everything is so uncertain. You look at a pair of shoes and wonder if it’s worth buying them; will you live long enough to wear out the ones you own?

She’s given me permission to share it with everyone, so here it is:

The vibration travelling

In waves; through air over cables and the waves and mountains between us

The infinite void between us and

The deafening silence before

Three words

Three words to crumple me

Doubled over in heart-tearing pain

Clutching at nearby objects

In feeble attempt to grasp reality

Grasp familiarity

In the foreign yet too well understood meaning of those three words

Grasping for breath and for answers

Trying to find something to say

Nothing to counter the brevity of those three words

Only emptiness

In the space my mind seems to so readily fill with complex sentences

Only emptiness

In the vast infinity between us

And yet a rush of desperate remembering

Suddenly yields a child-like terror

At not, in this very moment, being held

By the person

Whose essence seems entwined with every fibre of my being

Blue eyes catch mine in unwelcome reflection

Your eyes, essentially

Semi-trailer to the chest for a second time in the stretched out pause – only seconds, infinite seconds

A shock that makes me see

Even over all that sea between us

That you, my perfect, beautiful mother

Are infinite

More than the death that’s a threat from the Big C

Don’t you see?

You are entwined in the lives of all you have touched with boundless wisdom, with kindness

More than genes, it seems

You are an electric pulse in otherwise unlit humanity – live

This is clarity

Three words to change everything

And nothing

But you are infinite.

***********

It turns out that before Zoe had any idea I was going to get a call back from Breastscreen she dreamt I’d had a cancer scare. Just as well I didn’t try to keep it a secret.

From this end, looking back, things are a lot more optimistic than we expected. Having been told I had an uncommon and aggressive cancer with a poor prognosis I am now in a position where my oncologist seems ‘reasonably certain that we’re looking at a full pathological response’, in other words, I no longer have cancer. We’ll need to wait for surgery and a week of biopsy tests on the tissue they take out to be certain but all signs are good. Only two more rounds of chemotherapy to go and then a few weeks break, surgery and radiation once I’ve recovered from that.

A cure is possible.

Neither Zoe nor I knew that when she wrote that poem.

Laughter. Medicine. You know the drill.

I’m at the pointy end of my chemotherapy.

Looking back, the three rounds of FEC were much harder work that my 12 weekly doses of paclitaxel. It’s really just that treatment takes such a long time. I was diagnosed in July and now it’s December. I’ve got two more cycles to go and then surgery in January and radiation for six weeks once I recover from that.

The FEC was three rounds of being hit by a bus. For the first week after treatment I’d be tired and flat and then I’d have two weeks of feeling comparatively well.

The paclitaxel is cumulative. The first six weeks were great and I’ve been accumulating side effects since then. I’ve developed peripheral neuropathy in my hands and feet. It’s the kind of numbness you feel if you’ve been exposed to the cold, that odd sensation where the surface nerve endings have switched off but the underlying ones are still registering. This may or may not be permanent and it’s concerning enough that my oncologist has reduced my dose by 25% for my last two treatments.

My face and my body are puffy and the night sweats have given me a chill to the shoulder that doesn’t seem to want to budge. My mouth tastes like metal and if someone can invent a way to recycle human methane I’m pretty sure I can halve our power bill.

On the upside, my oncologist is feeling confident that we’ll get a full pathological response. That means I don’t have cancer any more. If she’s right, then the chemotherapy has wiped out those nasty tumours and my survival rate is as good as other breast cancers. So a bit of numbness is fine with me. She adds the caveat that we need to keep in mind I had four tumours and a cancer site over 5cm so ‘even if there IS some cancer left it’s still a good result’.

I’m holding out for a full pathological response.

Looks like we’ve got this.

So why am I feeling so tired and flat?

I suspect some of it is just that this is a long haul, the drugs are accumulating and I really need to take the next few weeks to just rest and rest and rest. At the same time, everyone else is hearing the good news and assuming I’m on the mend and don’t need any help. Friends that know warn me that stopping chemotherapy includes coming off the steroids that have helped me to feel so well throughout treatment. It’s likely I’ll have several weeks of feeling like I’ve just run a marathon.

Also it’s nearly Christmas, and my birthday, and I’m expecting to spend most of both on the couch.

Why is it human nature to pull at the finish line? I know that what I need to do now is to look past the final chemotherapy treatment; it’s a milestone and not a destination. Then I need to look past surgery, past the pathology results and all the way out the other side of radiation treatment.

What I really need is a good laugh.

I need to play, and be ridiculous, and spend time around people that love to do the same. Laughter is as good as meditation for putting me in the here and now.

This week I had two friends share posts with me on Facebook that lifted my spirits. If you’re feeling a bit flat they might help you too.

This first one requires a box of tissues and the time to have a good cry, but it will also make you laugh. Wonderful.

http://distractify.com/people/the-tutu-project/

I found this second one hilarious. You might recall me writing about the Look Good Feel Better program where wonderful volunteers help those of us with cancer to feel better by helping us with makeup and wigs. Imagine if this happened at a workshop!

http://www.businessinsider.com.au/the-mimi-foundations-if-only-for-a-second-2013-12

When all of this started we spent several weeks watching the our collection of Big Bang Theory DVDs. It’s time to find something else funny.

It’s time to accept that I’ve finally reached the point where I can’t look after the house, the garden, the shopping or anything else.

Stop.

Heal.

Laugh.

This too shall pass.

 

Lies, Damn Lies and Articles About Chemotherapy Research

I’ve spent a lot of time trawling the internet for useful, accurate information. There’s a lot of rubbish out there.

One of the frustrating things is the propensity for a journalist to put their own interpretation on a piece of research, report something that either ‘cures’ or ’causes’ cancer (when, in fact, that’s not what the research says at all), and for that journalist’s inaccurate summary to then get plastered all over the internet.

This is particularly the case when it comes to chemotherapy.

Most recently, this story did the rounds in various forms:

http://www.cureyourowncancer.org/study-accidentally-finds-chemo-makes-cancer-worse.html

If you don’t have time to read the article, here’s the opening paragraph:

“A team of researchers looking into why cancer cells are so resilient accidentally stumbled upon a far more important discovery. While conducting their research, the team discovered that chemotherapy actually heavily damages healthy cells and subsequently triggers them to release a protein that sustains and fuels tumor growth. Beyond that, it even makes the tumor highly resistant to future treatment.”

WHAT!? Terrifying! My chemotherapy might be causing a more aggressive cancer? AARGGH!!! 

If you were (like so many people) inclined to believe everything you read then this might send you into a panic. My serious concern with this type of reporting is that it might cause people to end their treatment early, or to not start it at all. For some types of cancers this can have serious, life shortening consequences.

In particular, note the use of the word ‘accidental’ and an image of a seriously ill child. Then check out the concluding paragraph:

“This accidental finding reached by scientists further shows the lack of real science behind many ‘old paradigm’ treatments, despite what many health officials would like you to believe. The truth of the matter is that natural alternatives do not even receive nearly as much funding as pharmaceutical drugs and medical interventions because there’s simply no room for profit. If everyone was using turmeric and vitamin D for cancer (better yet cancer prevention), major drug companies would lose out.”

So all I need is turmeric and vitamin D (and to not have done whatever I’ve done to cause my own cancer!) and all that mainstream medical treatment in unnecessary? Hmmm.  Keep this paragraph in mind as you join me on a search for the truth about the research that this highly misleading article pretends to be reporting.

First, here’s another version of the story:

http://www.globalpost.com/dispatch/news/health/120805/chemotherapy-can-backfire-and-cause-cancer-new-study-has-found

Here’s the opening paragraph if you don’t have time to read the article:

“Despite its life-saving qualities, chemotherapy has long had a nasty reputation, known as a necessary poison for people suffering from cancer. But in some cases, chemotherapy is so damaging that it may even backfire and make the cancer worse, a new study has found.”

So, the first thing we notice is that chemotherapy is still credited with being ‘life saving’ and the article qualifies the ‘backfiring’ effect to only occurring in ‘some cases’. Gone is the ‘accidental’ reference but I have no idea why they chose an illustration of someone receiving a vaccination to illustrate the story. This article is an improvement on the SHOCK HORROR of the first, but it would still be enough to frighten you if you were undergoing or considering chemotherapy.

The complication with these stories is that they feed into the common belief about treatments and resistance. We all know that antibiotics can breed superbugs from anything that survives treatment and the staph infections are prevalent in hospitals BECAUSE of disinfectant and not in spite of it. It’s not too difficult to believe that anything surviving chemotherapy would be a more aggressive form of cancer. It just makes sense, doesn’t it?

Stay with me for a bit longer. Here’s another article on exactly the same piece of research”

http://scienceblog.cancerresearchuk.org/2012/08/06/headlines-about-backfiring-chemotherapy-are-misleading/

This is an article about why it’s important to understand exactly what this research set out to do, and what the results mean. The anti-chemotherapy camp keep ignoring one very significant fact; more people are alive today because of chemotherapy. When I was young, hearing that a woman had breast cancer was a reason to start thinking about what you’d be doing to support her family after the funeral. It’s not turmeric and garlic that have contributed to the impressive increases in survival rates. It’s science and the application of that science to medicine.

Once again, the opening paragraphs:

“We spotted some worrying headlines today claiming that chemotherapy can ‘backfire’ and ‘encourage cancer’, making it “tougher to tackle”. We want to make it clear that cancer patients don’t need to be distressed by these unnecessarily alarming headlines, or consider stopping their treatment. In fact, the research from US scientists that sparked the coverage categorically does not show chemotherapy makes cancer harder to beat. Instead, the work gives scientists a vital insight into one way that the body can develop resistance to chemotherapy, and it could help explain why treatment sometimes stops working. But it doesn’t tell us anything new about current chemotherapy treatments – we already know that some cancers respond to chemo while other don’t, or start growing again after treatment.”

This article goes on to explain that the research is good news for cancer patients because it provides an insight into why some treatments that are initially effective stop working, and provides an opportunity to improve chemotherapy.

Here’s another report on the same piece of research, responding to the ‘backfiring’ claims:

http://www.sciencedaily.com/releases/2013/09/130918130504.htm

This article is from a science site and you immediately notice the difference in the style and the content;

“Sep. 18, 2013 — Overactivity of a protein that normally cues cells to divide sabotages the body’s natural cellular recycling process, leading to heightened cancer growth and chemotherapy resistance, UT Southwestern Medical Center researchers have found.”

and then the closing paragraph;

“These new findings are important for two reasons: First, they provide insight into how to extend EGFR-targeted therapy to a much larger group of lung cancer patients, including those whose tumors do not have mutations. Second, they provide a totally new approach to overcoming resistance to EGFR-targeted therapy.”

WAIT! It’s about how we can provide BETTER treatment to cancer patients? It’s relevant to lung cancer? Why didn’t the other articles say that?

Now let’s have a look at one last article, this time from a medical site:

http://www.medicalnewstoday.com/articles/248661.php

And notice the difference in the opening paragraph:

“A new study from the US finds that in the process of targeting and killing off cancer cells, chemotherapy may also spur healthy cells in the neighbourhood to release a compound that stimulates cancer growth, eventually leading to treatment resistance. They hope their finding will lead to better therapies for cancer and buy precious time for patients with advanced cancer.”

Now let’s return to that concluding paragraph from the first article”

“This accidental finding reached by scientists further shows the lack of real science behind many ‘old paradigm’ treatments, despite what many health officials would like you to believe. The truth of the matter is that natural alternatives do not even receive nearly as much funding as pharmaceutical drugs and medical interventions because there’s simply no room for profit. If everyone was using turmeric and vitamin D for cancer (better yet cancer prevention), major drug companies would lose out.”

Can you see why I’m angry?

This type of reporting is irresponsible and dangerous. Just to wrap things up, here’s a link to the actual research:

http://www.nature.com/nm/journal/v18/n9/full/nm.2890.html

Perhaps the difficulty in all of this is that most people have trouble understanding academic jargon. There’s also the problem that you’re dealing with science, chemistry, medicine and a whole lot of language that isn’t in common use. Even so, I have no trouble understanding the gist this sentence:

“These results delineate a mechanism by which genotoxic therapies given in a cyclical manner can enhance subsequent treatment resistance through cell nonautonomous effects that are contributed by the tumor microenvironment.”

Simply put, the results of the research will help doctors to design new chemotherapy that helps to overcome the problem of cells developing resistance to treatment.

Here’s my ultimate summary of the whole issue. Researchers wanted to have a look at why some people develop a resistance to chemotherapy over time in order to determine if there was some way to overcome that, or to minimise the problem. In the course of that research they did actually identify a mechanism by which that resistance occurs in lung cancer. As a consequence, doctors faced with patients developing resistance now have some new ways to treat it and researchers with an interest in this area now have more information and more promising avenues for further research.

Or you could try just taking turmeric.

Because a woman reported last week that it cured her.

So hey, forget science and double blind trials and massively improved survival rates thanks to mainstream medicine, and just put some spice in your dinner.

I don’t pretend chemotherapy is perfect. If it was then we’d have a 100% cure rate with no side effects. What I do know it that it’s the current best available treatment for a whole range of cancers, including mine, and that it provides palliative care for a whole range of others.

Happy to add the turmeric as well on the basis that it won’t hurt me, and it may help, but to abandon a known, proven treatment on the basis of a misreported piece of research? Nope. Not happening.

I suppose the point of this post is to create a record of how just one piece of research can lead to a mountain of misinformation and how dangerous it can be to believe this stuff. If you google ‘chemotherapy backfires’ you’ll find hundreds of articles, all with their own spin and few actually reporting what the research was about or what they discovered.

The real pity is that a story that should have given hope to a lot of people was manipulated to terrify them.

Short Post for a Great Website

Found this site today and I’m posting the link. It’s a lot more comprehensive than most and includes lots of good advice. As always, I include my reminder to check any change in your treatment with your medical staff, but this site has loads of great ideas.

As an example, this link takes you to an alphabetical index of side effects.

http://chemocare.com/chemotherapy/side-effects/default.aspx#.Up-wa6XH1lI

Let me know what you think.