Things they don’t tell you about cancer

As my mother’s (and our’s I guess) shitty cancer story is coming to a close, I thought it may be worth clearing up a few misconceptions about the disease that somehow get perpetuated by entertainment media. Let’s face it, the truth would make bad television.

  1. There was something wrong before diagnosis and the doctor just confirms fears  This one is a big one. Many cancers (Lung Cancer is a prime example) will only show   symptoms in the very late stages when a cure is out of question. This is why going for check ups is important. If you have family history, if you are at risk due to lifestyle, tell your doctor. Also listen to your gut feeling if a diagnosis doesn’t seem right, go and get a second opinion. Yes it’s scary, but treatment at early stage is infinitely better than knowing there isn’t much you can do and you’re just playing for time.
  2. Despite Treatment you will be able to live a relatively normal life 

    I mean sure, it’s totally possible you feel well enough to start a career as a drug baron, but honestly, most chemical treatments will knock you sideways. I guess sleeping a lot, not being able to eat because of nausea and bouts of diarrhea make for bad television. The biggest realisation to me was that the best way of helping is not by big gestures, but by doing little things, like making food she could eat, clean, do the washing etc. As I live away, I tried my best to come home at least once a month for a long weekend. In the meantime Dad and the others were worth their weight in gold and then some\

  3. Its a steady decline once the diagnosis is final 

    If they made a truthful film, it’d be called “Cancer It’s complicated” First: No doctor worth their salt will give you an estimate these days. They certainly didn’t with Mum and as frustrating as it is, they are and were right: There’s too many ifs and buts and too many things can change while in treatment. I mean look at the blogs I linked to. Some of these people have been living with their cancers for years and are still going strong. So many new options have come into being since their diagnosis that it’s completely transformed options. Sadly, in mum’s case we’re dealing with SCLC, which hasn’t yet had the same breakthroughs some NSCLCs had but that doesn’t mean they can’t come.                                                                                                                            Doctors did give a prognosis to my godfather (lymphoma) which said he had a 90% chance of survival and guess what, he was in the 10%. It’s irresponsible imho to make such claims, because you never know in which group you fall. Second: Cancer isn’t linear. In November mum was in such a bad state I thought that was it. She was struggling to breathe, in and out of consciousness and quickly losing weight and lung capacity. But then treatment kicked in and a couple of months later she could be back home by herself. The day she collapsed was the day after she had a final consultation after radiation therapy with the docs telling her she was in such a good shape, they could suspend treatment for a month  and that the spots they treated had gone. We had made plans for her birthday only to find out a day later that it was all in vain as the brain mets had turned her brain into mush. Now the best thing I can hope for is that she won’t be in this state for too long.

Feel free to add anything else I missed, I’m sure there’s plenty.

Things they don’t tell you about cancer

Disappointed

Roy Castle, the one UK Lung Cancer charity there is, just published a new blog post about women and lung cancer.

Great! I thought and started reading. Now I wish I really didn’t.

 

I get that the author is new to the topic, but fuck me that was just lazy.

Of course it’s all about smoking again and the notion that if people don’t smoke, they don’t get lung cancer. We know this is wrong of course and it’s a fucking smack in the face to people who never smoked.

 

Call me crazy but I expect better from a Lung Cancer charity.

They went through all the hassle of examining the correlation between the different working habits of women during and post WW2 and smokibng, but completely failed to assess weather exposure to chemicals (seriously, ever heard of asbestos?!) could play a role here.

 

Nope, of course it’s all smoking (and that’s basically saying if you smoked, or worse are still smoking, well then you’re just stupid and don’t deserve better).

 

The only reference to other causes has been thrown in here “Although not all lung cancer sufferers are smokers, if we can help younger generations to say ‘no’ to cigarettes and ‘yes’ to healthy lungs, then we will be well on the way to beating lung cancer for good. Cut Films, our anti-tobacco youth engagement project, has been a crucial component in spreading the word to young people.”

 

Well, fewer people than ever smoke. Yes it’s crucial to prevent people from smoking, but with numbers ever decreasing, be it because people are more informed of the risks or because the price of cigarettes has become prohibitive (both important) I just wish for ONCE people would say “hey maybe we need to do more awareness around funding, maybe we need to do more about educating about other causes so people who never smoked go and seek out help before it’s too late, maybe we raise awareness so doctors don’t dismiss patients who present symptoms but never smoked as crazy”.

 

But maybe I’m just crazy to expect better from Roy Castle Lung Cancer charity.

 

 

 

Disappointed

It’s starting to feel a lot like Christmas

I can’t lie. I have been absolutely dreading the holidays this year.

Earlier last month, when we found out about the diagnosis, I really wasn’t sure there’d be much to celebrate at all and I was more than scared about the build up.

But every now and then somebody throws you a bone and in this case it means that Mum is well enough to come home until the 29th.

 

She’ll be released on the 23rd, the day I get back and has already been busy thinking about what I shall cook for her when I’m at hers. She can walk around with an aide but obviously there’s no way that she’d be able to take care of herself.

 

I’m so so happy we get to spend the week together like this.

 

Dad already has a shopping list with things she’d like to eat so that I can pamper her when I’m there.

 

And now even grumpy old me feels a bit festive.

It’s starting to feel a lot like Christmas

Kids and grown ups love it so

Once again I was back in the homeland to see Mum. Because the Christmas markets are a big draw for tourists, tickets are prohibitively expensive at this time of the year and all I could manage was a one night stay this time.

Mum has been a bit better. She is still very weak and can’t walk, but at least the cough has eased up a bit and her voice is better. She’s still not eating a lot but at last she manages a little.

I sat with her for most of the day yesterday when all in a suden she looks at me.

“… can I ask you something?”

Of course she can!

“You know I really fancy some licorice. You know the coated ones from Haribo?”

In short I bought her two bags and not much later she was happily munching away. So pleased I found something she liked and wants to eat.

Next week she’s getting her second round of Chemo and I hope it’ll be easier on her than the last one.

 

 

Kids and grown ups love it so

swings and roundabouts

Mum had another x-ray and we were told that the cancer is shrinking. Whilst this is great news, it doesn’t mean it’s going away. It only means it’ll kill her a little bit more slowly and in the best case it’ll mean she’ll be around long enough for another trial we may enroll her into (fingers crossed!).

 

At the same time she’s still struggling to eat and she’s getting infusions. Her voice has gone and breathing is a struggle so phoning her is more and more me calling her to tell her I love her than having a meaningful conversation, and I’m fully aware this won’t get any better.

As if it wasn’t bad enough that I beat myself up over being away, I am going on a company trip today. Normally it’s an occasion I am looking forward to, but this year I’ll mostly feel stressed and worried and guilty.

swings and roundabouts

Worries

Remember this Post from Thursday? Where I’m writing about how things are going a bit better for a change? Well looks like I jinxed it.

 

Yesterday and today have been really bad days for her. Too exhausted to speak from a lack of sleep caused by her coughing up all sorts of gunk all night, you wouldn’t believe that picture has been taken only two days ago.

It’s scary what this disease does to people.

When her cough got really bad, I looked for a nurse to ask what’s going on. All nurse fuckface had to tell me whilst munching her cake was “well you know the diagnosis, it’s not going to get any better”. Thanks shithead, I hope when your kids have to deal with a situation like this, the nurse that deals with them has more empathy than you.

But speaking to the doctor hasn’t made things any better: Basically weakened from chemo, she’s contracted an infection. Her lungs are so incapacitated, that they were struggling already. If things get worse, they may have to put her in an artificial coma and we were told she won’t recover from that as her lungs are so damaged they won’t manage.

If that wasn’t bleak enough, I don’t know.

In addition, due to the local Christmas markets, which each year draw a big crowd of tourists, ticket prices have sky-rocketed where flights aren’t sold out already. Spontaneous trips over the weekend have now become a real worry, not that I needed more of that.

 

 

Worries