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

#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