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

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

Rip it up and start again

So after the last doctor’s visit, Mum had another phone call.

Apparently it’s too dangerous to start radiation right away, because the hole the shrinking tumour has left means that the pressure may be too high and she could potentially burst a vessel.

Now the doctors have had a chat (did I mention, this new lot is AMAZING, they actually talk to each other like real people) and decided the best thing would be to operate and take out the affected wing of her lung so that the unaffected side can expand and take over. Now let’s rewind a few days and Mum told me they weren’t sure that what they diagnosed at the other hospital were really Mets. They weren’t in her liver, those lesions were left overs from a previous bout of liver disease, and the ones in her hip either weren’t there or had gone completely.

Now this bit is where it’s crucial, because if they managed to shrink it enough to be operable, and it’s contained to one side, now if she doesn’t have mets anywhere… Technically speaking this would mean she’d be cancer free afetrwards, right? Since this wasn’t an option when we first got the diagnosis, my head is spinning a little.

Either way, this surely is good news?

Can someone more savvy explain?

Rip it up and start again

OK, Next Adventure

Mum has finished her chemo treatment (for now) and went through another thorough test cycle. Good news: It looks like there are no mets in her hip (there are lesions and they don’t know if there were mets and they’re gone or if they come fromsomething else) and what they thought were mets on her liver weren’t. Great news! Tumour 1 in her lung has shrunk by 3/4 and the second one is smaller too. Best news we could have hoped for really. Now she’s about to start her radiation treatment. Doctor says they’re zapping her 25 over the next months.

Does anyone know about side effects and if there’s anything I can do to make her more comfortable?

OK, Next Adventure

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?

trying not to be angry

When you have a family member with late stage cancer, nerves can wear pretty thin.

 

Every time the phone rings you think it may be about them. Every time it doesn’t ring you think something happened.

 

And when your family member has stage 4 lung cancer after decades of smoking multiple packs of cigarettes, well: It’s really hard not to be mad at them or play the blame game.

And most of the time, I’m pretty good at this. The other day though I said something I regret. And I’m sorry about this. But here’s what happened:

 

I was on skype with mum and dad. They were talking about all the stuff he eats and dad said he ad to go and buy some supplies.

 

Talk came to potatoes and mum explained she wouldn’t buy the super market ones because they’re sprayed with some stuff that could give you cancer and that she’s always paying attention to this sort of thing.

 

I replied that coming from someone who smoked 2 packs a day for over 40 years, that was a bit rich.

 

Look, I know I’m in the wrong. But I’m also hurt that she pretends like giving a fuck where your potatoes come from when she didn’t give a fuck about her smoking and what impact this had.

 

She told me she was upset with me, that she, after all, has to live with the consequences of the mistakes she made.

 

But it isn’t just her, is it? We all have to deal with the consequences of this, we all have our lives on hold for the foreseeable future and we all suffer from her cancer, even if we don’t have it.

 

I just wish sometimes she had cared about the bloody smoking as much as she did about these potatoes.

trying not to be angry

#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