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

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?

A sad reminder that Stigma kills

Professor dies of lung cancer after doctors dismiss illness as ‘purely psychological’

A university professor died of lung cancer after doctors repeatedly dismissed her year-long illness as “purely psychological”.

Read more here

Medical staff and everyone else need to be educated that Lung Cancer does not only affect smokers in old age, but can strike anytime, anywhere.

The only prerequisite to get Lung Cancer is to have Lungs. The rest is playing with odds.

 

A sad reminder that Stigma kills

Some good news

I just came across this article about Samantha Mixon, a 36 year old who had been diagnosed with a stage 4 Lung Cancer.

 

Samantha is a great example of why you shouldn’t give up hope to beat the odds, and she’s now subject of a case study to help others achieve the same great outcome:

Read more about her story here:

http://www.11alive.com/story/life/2015/11/27/lung-cancer-piedmont-atlanta-hospital/76440764/

Some good news

SCLC Clinical study

Cancer research UK are currently running a trial for Olaparib.

 

Sadly, Mum doesn’t qualify (treatment hasn’t been 3 cycles yet and won’t be until cut off)

 

They are looking for patients who have responded well to their chemo treatment.

 

If you or someone in your family fits the profile, please sign them up to the trial, it may make a world of difference even in the short term, and will help find a better way to manage the disease going forward.

 

Please get in touch with them:

0808 800 4040

or contact them here

SCLC Clinical study

On early detection

I risk sounding like a broken record but:

 

Early detection is everything, as Dr Jesme Fox explains here

“Ideally, we would like to see a national lung cancer screening programme in place, like those for breast and cervical cancer, for research shows this could potentially increase the chances of detecting the disease earlier, ultimately saving lives. As there is no such programme currently in the UK, we rely on people visiting their GP if they notice symptoms like shortness of breath, chest pain and persistent cough. Chances are they won’t have lung cancer, but if they do it may be still curable.”

I’m  not even surprised that we don’t have this, but we really really need it. It could save the lives of your loved ones.

On early detection