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

The Faces of Lung Cancer 9

Johan Cruyff

 

johan_cruyff_1974c

I really wish I didn’t have to post this particular one because it only happened yesterday (24/03/2016).

 

Cruyff, voted player of the century in 1999, was vital to make the Dutch team a force to be reckoned with in the 70’s, and was a key player for Ajax and Barcelona.

In the 80’s he continued his career as a coach, and led Barcelona to 4 Liga titles as well as several European titles.

He was diagnosed with Lung cancer in October ’15. Having always been a heavy smoker, he gave up the habit in ’91 after a double bypass surgery. He became a famous anti smoking advocate associated with the slogan “Football has given me everything in life, tobacco almost took it all away.”

Just goes to show that sometimes it can get you regardless of what you do to avoid it, and that we really can’t judge those who fall victim to this disease.

 

Johan died surrounded by his family in Barcelona.

 

 

 

 

 

The Faces of Lung Cancer 9

back to square 1

So it turns out that in the meantime, whilst doctors were debating what to do about mum’s tumor, the thing has started to grow again. Aparently this is kind of normal with this type and nothing to worry about. It does mean she will have to go back on chemo though to make it shrink again. After her new doctor went to a conference recently, they have changed her meds cocktail and hopefully this one won’t affect her as badly.

She went into the clinic yesterday to get a port set into her shoulder, as all her veins are ruined after the treatments she recently had.

She’s taken this all really well and is back at home.

Still, having to hear it’s growing again makes me worry, even if she tells me I shouldn’t.

back to square 1

The Faces of Lung Cancer 8

On February 25th it would have been George’s 75th birthday.
George was always my favourite Beatle and he’s written some of my favourite fab four songs. Sadly, he didn’t get to celebrate this day because he’s succumbed to Lung Cancer in 2001.

He and the beatles were the soundtrack to some of my favourite memories, like that time Dad and I were driving back from my nan’s singing along to this:

 

The Faces of Lung Cancer 8

What does it matter…right?

Once again I’m back from a trip to the homeland, one of my monthly visits that now have become a routine. Over the last few month, my bag packing and security clearing skills have gone through the roof!

 

Anyhow. Dad picked me up and as we made our way to Mum’s flat, he’s told me what happened at the latest doctor’s visit.

 

She is ready to start radiation treatment, which is good. In preparation, they will do another full set of scans to make sure they know about everything.

The doctor also had a look at her hospital records and, frankly, was appalled. They gave her too many sleeping pills in too high a dosage and didn’t mention that they are addictive. She took her off them and switched her to antidepressants which apparently work just as well without the addictive factor.The over dosage came from them prescribing sleeping pills the first time she was hospitalised, and then again on the second time, never removing the original prescription.

They also claimed she had a good reaction to the chemo when she is clearly suffering from strong side effects.

This leads to two conclusions: either the hospital is incapable of providing a decent level of care or they don’t give a fuck because she’s in an advanced stage of Lung Cancer.

Either way I’m not happy with this and hope Dad can convince her to switch hospitals.

 

 

What does it matter…right?