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

All I want for Christmas

Mum has now started her second round of treatment and is sounding almost normal. By that I mean pre diagnosis. Her voice is almost back.

She told me she’s been eating a lot for her standards, so it all sounds really promissing.

 

I also booked another flight home as flights are cheap in January.

 

Best news however had Dad, who said the doctors are fairly optimistic, and that all things going according to plan, she may be home for Christmas. We’ll need to get her a carer for when she’s at home, but that’s the smallest issue. I just really hope she can be with us for Christmas eve.

 

Fingers Crossed!

All I want for 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

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

Cake day and small mercies

And once again I’m back home to see Mum. This one at least was a scheduled visit and not a panicked last minute trip hoping for the best.

she already sounded much more like her old self when I spoke to her on the phone this week, but before going in I wanted to speak to her doctor to make sure I know what’s going on. Chemo has caused her blood cell levels to drop so she’s getting infusions. Now I have been told this is a GOOD sign, because it means it’s doing something. She also confirmed that she gets the impression it’s working from how much she recovered already, but it’s early days and they’ll know more in the next few days.

Luckily her appetite has come back and asked if she wanted something, I could tell from her face that there was something but she didn’t want to ask about it because she never asks for anything.

 

“how about cake?” She did pull her cake face. “Hmm not sure I mean yeah something sweet would be nice and maybe some coffee”. So dad sprints over to the cafe and comes back with a massive slice of sponge cake. If the speed of her getting that cake down is any indicator, we’re on a good way 🙂

 

 

Cake day and small mercies

Overwhelmed

Due to her bad state on Friday, I didn’t want to run any risk and caught a flight on Saturday to see Mum at the hospital.

I thought I had managed to deal with this but seeing her so weak and unable to care for herself really brought it home that we haven’t got much time left.

She’s better than the previous days and taking well to the chemo (as well as you can really) but she can’t walk by herself and talking is a big effort.

 

Yesterday I went to see her by myself as Dad had some errands to run.

My parents had separated when I was ten and after some difficult years, have managed to become close friends again. In fact most people who saw them would think they were a couple still.

“Can I ask you something?” she goes. “Sure?” “You know I was thinking. I still love your Dad. Do you think I can tell him? Or will he think I’m silly? I don’t want him to stop seeing me, I mean everyone thinks we’re a couple anyway so why not?”

I told her to absolutely tell him.

“Haha look at your Mum! Like a schoolgirl!” she giggled and I cried.

 

So it happened that my Mum after all these year told my dad that she still loved him and he just went “I know stupid, if I didn’t I wouldn’t be here”.

He’s very German.

Then the two of us went to speak to the doctor. There’s no sugar coating it: we won the shit bucket in the shit tombola.

Her cancer is a very aggressive type and has already spread to her liver and her bones. One tumour sits near an artery and is causing circulation issues.

If the chemo doesn’t work, we’re fucked big time.

I’m going back Thursday eve and am dreading to find out whether its working or not.

 

 

 

 

 

 

 

Overwhelmed