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

#LCSM Chat 1/14

And the first proper chat was heald yesterday. I once again want to give a brief summary of people’s contributions.

Q: T1: What question(s) would you like studied to improve the side effects of #LungCancer treatment? #LCSM

A: T1: More research on early palliative care and lung cancer to hopefully improve implementation #LCSM @lungassociation

T1 More research on help for lack of appetite to help ward off cachexia if possible. #lcsm

@aboutlungcancer

  • This is a VERY important point. The first two cycles mum went through were horrendous because she couldn’t eat a thing and lost a lot of weight. Which obviously makes recovery harder.

T1: Targeted chemotherapy: What genotypes benefit from chemo and which do not? Would be nice to spare chemo if it does not help. #lcsm @allen_lee_

Q:T2: can we reduce morbidity and improve recovery time with PT and pul rehab before surgery? #lcsm

A:  T2: Rehab post of for patients. ALL heart patients have it. Physical and pulmonary #lcsm @lcsmchat

T2. Need more solid studies on relationship of length of stay to outcome and satisfaction. Also need for readmit. #lcsm @brendonstilesmd

As someone who couldn’t profit from surgery, I don’t really have anything to add here, it’s a topic I don’t know much about.

Q: T3: What strategies can we study to improve screening and diagnosis of #LungCancer? #LCSM

A:T3. Entry point is critical. Why don’t (or why do) PCPs screen? Are some eligible patients excluded and why? #lcsm @brendonstilesmd

As Lung Cancer seems to run in the family, and the doctor said it may not be smoking related despite her 2 pack a day habit, I can’t lie: I’m shit scared. Screening would be reassuring.

Consider lung cancer as possibility #lcsm @terribirdy

T3: physicians quit assuming. Don’t smoke? Oh, you’re just out of shape. #lcsm @johnlpender

Well yes, too many people are being fobbed off because they don’t fit the accepted profile (Ie heavy smoker in their 60’s)

T3:Add family history as reason to screen. #LCSM @teamplh4lisa

Oh god yes.

QT4: What methods can we study to improve the delivery of #LungCancer care? #LCSM

A:T4 question of over-treating. When is wait and watch appropriate? #lcsm @jillfeldman4

T4 Use email, online labs and test results. Respond to patients when reporting side effects. Reduces stress and panic #lcsm @terribirdy

This should give you a brief overview. I can really only comment on a couple of these but as stated, I think offering better screning and not dismissing LC as a possible diagnosis are some major points.

#LCSM Chat 1/14

Things not to say to people with cancer (or their relatives)

It kind of sucks this even needs to be said, but there are things you really shouldn’t say to people who have been diagnosed with advanced cancer (or their relatives).

The recent #chatfredhutch hashtag has brought some pretty terrible stories to the surface, but here are a few I had I could have done without:

“Oh at least they caught it early!” yeah, stage 4 isn’t early. It’s pretty much the worst bit of news they can give you.

“Medicine has come such a long way!” – not with Lung Cancer, and especially not with her lung cancer or any metastatic cancer for that matter.

“I’m sure your mum will be fine” No. She won’t be.

“Carol from the gym has it and she’s doing fine” I will bet my arse that Carol from the gym has not got stage 4 Small Cell Lung Cancer, and I can guarantee you my mum will not be at the gym doing fine any time soon or at all. At the moment I am glad she can slowly walk with an aid again.

“Did she smoke?” Unless you ask other cancer sufferers if they always washed their new clothes, ate too much red meat, drank too much, stayed up too long, dared to have parents with shitty genes this is 100% none of your bloody business.

 

And here’s a few others have experienced:

 

 

 

And of course this piece by @double_whammied:

https://www.fredhutch.org/en/news/center-news/2013/10/what-not-to-say-to-a-cancer-patient.html

 

Things not to say to people with cancer (or their relatives)

2016, I think we got off to a bad start

It’s been a bit quiet here, and I’m sorry about that. Sometimes life gets in the way.

 

Mum has been doing amazingly well and the doctors were so happy with her, she could come home over the holidays. I was back with her so I didn’t really feel like blogging and then I returned home and had lots of catching up to do. And since she keeps doing fine it feels a bit strange to keep writing about her cancer, because it’s a lot less upsetting to pretend nothing bad is going to happen for a bit.

But of course bad things will happen. Lemmy was a reminder of that. Bowie was a reminder of that and now also Alan Rickman.

Those three have hit me hard. All three seemed to be so sudden, all three pretty much the age of my parents and all three in their own way were a massive influence on me.

And of course they are an inevitable reminder of what’s to come.

So I guess I can’t really escape from it and may as well spend more time here again.

 

This weekend I’m back at Mum’s again, she’s doing so well she can do a lot of things by herself again like cooking, laundry etc but I’m still glad I’m going to spend time with her.

If anything, 2016 has really made its point that tim is precious.

 

2016, I think we got off to a bad start

SCLC treatment news

Small Cell Lung Cancer hasn’t had any breakthroughs yet in the same way that NSCLC had recently, but there are encouraging news nonetheless.

As it happens, it has been shown that chemoradiotherapy can extend the survival rate of elderly limited sufferers of SCLC.

As it says in the article:

“Elderly patients who are candidates to receive [chemotherapy] should be strongly considered for [chemoradiotherapy], which appears to confer a large additional OS advantage beyond that achieved with [chemotherapy] alone,”Roy H. Decker, MD, PhD, of the department of therapeutic radiology at Yale University School of Medicine, and colleagues wrote.”

www.healio.com

SCLC treatment news