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.
- 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.
- 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\
- 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.
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?
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?
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.
I can’t lie. I have been absolutely dreading the holidays this year.
Earlier last month, when we found out about the diagnosis, I really wasn’t sure there’d be much to celebrate at all and I was more than scared about the build up.
But every now and then somebody throws you a bone and in this case it means that Mum is well enough to come home until the 29th.
She’ll be released on the 23rd, the day I get back and has already been busy thinking about what I shall cook for her when I’m at hers. She can walk around with an aide but obviously there’s no way that she’d be able to take care of herself.
I’m so so happy we get to spend the week together like this.
Dad already has a shopping list with things she’d like to eat so that I can pamper her when I’m there.
And now even grumpy old me feels a bit festive.
Mum has now started her second round of treatment and is sounding almost normal. By that I mean pre diagnosis. Her voice is almost back.
She told me she’s been eating a lot for her standards, so it all sounds really promissing.
I also booked another flight home as flights are cheap in January.
Best news however had Dad, who said the doctors are fairly optimistic, and that all things going according to plan, she may be home for Christmas. We’ll need to get her a carer for when she’s at home, but that’s the smallest issue. I just really hope she can be with us for Christmas eve.
Once again I was back in the homeland to see Mum. Because the Christmas markets are a big draw for tourists, tickets are prohibitively expensive at this time of the year and all I could manage was a one night stay this time.
Mum has been a bit better. She is still very weak and can’t walk, but at least the cough has eased up a bit and her voice is better. She’s still not eating a lot but at last she manages a little.
I sat with her for most of the day yesterday when all in a suden she looks at me.
“… can I ask you something?”
Of course she can!
“You know I really fancy some licorice. You know the coated ones from Haribo?”
In short I bought her two bags and not much later she was happily munching away. So pleased I found something she liked and wants to eat.
Next week she’s getting her second round of Chemo and I hope it’ll be easier on her than the last one.