Working through Cancer

Words Used About Cancer

Words used about cancer

Words used about cancer

Battle, survivor, suffering, brave …

These are a few of the words used about cancer and to describe people with cancer.  You may hear these being applied to you if you’ve been diagnosed with cancer and you’re currently going through treatment.

You may find yourself using them when referring to your own treatment or talking to others.

As far as I was concerned, I was never having a ‘battle’.  Maybe a minor skirmish but there were and still are, many people going through real or metaphorical battles, who were in a much worse position and some of them  really were being ‘brave’, especially anyone who’s received a secondary diagnosis.

I also heard comments such as “I hear you’ve been ill” – well I hadn’t been ‘ill’ as such – even once diagnosed I was feeling fine.  It was the treatment that made me feel ‘ill’.

Having come through the other side, I also don’t like the word ‘survivor’.  After the initial diagnosis and shock I never doubted that I would ‘survive’ and having had surgery and treatment it was just a process I had to go through, not something that I necessarily needed to ‘survive’.

Be aware of how you talk about cancer and the words you use.  They may be relevant, they may not be what the person wants to hear or how they’d describe it.

If you find it difficult to know what to say – just ask.  If you don’t like the words people are using – tell them.

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
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Lumps and bumps – get them checked

Breast self-examination http://ehp.niehs.nih.g...

Every woman should know how to check her breasts, just as every man should know how to check his testicles (and breasts too).

You know you’re own body better than anyone else, so being able to notice when something is different or doesn’t quite feel right is the best indicator to get yourself checked out.

There’s plenty of information available on getting your breasts checked – how and why you should do it.

NHS UK – how should I check my breasts?

Breast Cancer Care – signs and symptoms

WebMD – breast cancer and breast self-exam

CoppaFeel – plenty of info on how to check and you can set an SMS reminder to check regularly.

If you’re not comfortable or confident checking your own, get your partner to check them for you or ask your doctor or nurse at the surgery.

Not all lumps and bumps are going to be cancer – 90% of them aren’t but if your worst fear is ‘cancer’ and that’s what stops you from going to the doctor – JUST DO IT.  Putting it off is not going to make it go away – whatever ‘it’ might be.  If you need treatment of any kind – better to start it sooner than later.  If it’s benign, a cyst or nothing to worry about – then your fear is put to rest.

Be Aware – mammograms are not 100% accurate, as I found out when a second tumour was only discovered in my left breast after surgery.  In my case there were other visible changes, so I wasn’t too surprised.  They are also less reliable if you have denser breast tissue and certain types of cancer are more difficult to detect.

If in any doubt get yourself checked.

Breast self-examination (Photo credit: Wikipedia)

 

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The Jolie Effect

Angelina Jolie at the premiere of Alexander in...

Angelina Jolie has been in the press again to tell her story of elective surgery to prevent cancer.

First she had a double mastectomy two years ago when she learned she had the BRCA gene mutation.  Now she’s had a her ovaries and fallopian tubes removed in another decision to reduce her risk of cancer still further.

What I love is that she’s made the decision (difficult as it may be) and just got on with it with the minimum of fuss.

She’s also raised awareness of the disease, it’s risks and treatments.  As with her previous decision I’m sure there will be a lot more women saved from cancer by understanding more about their risk and options.

It’s a scary decision to make but if you knew you had a much higher risk of getting breast or ovarian cancer would you make it?

Angelina Jolie (Photo credit: Wikipedia)
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This time last year … radiotherapy

Radiotherapy machine

 

This time last year I’d just had my last radiotherapy session.

My final day of lying on the cold and uncomfortable platform with my arms up over my head.  It wasn’t that bad really, just the room was pretty cool (for the machine’s benefit) and you did have to stay still while actually being zapped and there was usually a lengthy wait before even getting there

Itching like mad where the radiotherapy was being directed and a slight reddening by the end of the 15 treatments despite liberal application of E45 cream – the only one they recommended.  It’s also surprising, as the treatment itself is relatively inoffensive, how tired you become.  And the tiredness hits a peak about two weeks after the treatment finishes.  Not nearly as tiring as chemo.

 

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Did you know – the cancer gene

There are so many things you discover when you actually have to go through any form of surgery or treatment that you probably didn’t have a clue about before.  Well why would you?

Did you know that if you have a certain gene you have a greater risk of getting cancer?

There are two genes known as BRCA I and II (pronounced bracker).  If you have either of these genes your risk of getting breast and/or ovarian cancer is increased by 45-90%.  It’s more prevalent in the Ashkenazi Jewish population, which is why they’ll often ask you your ethnic origin.

If you have one or more female relatives who’ve had or died of either cancer, you’ll also be offered the test.  It can be passed down to both men and women.

Some people don’t want to know and will still refuse the test even if they know they’re at risk.  One mother I know has the BRCA gene but her daughter, who has young children doesn’t want to be tested – at least not at the moment.

Others will want to know, so that they can make a decision about their future.

Treatment can be fairly drastic but it could save your life.

http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/risks/breast-cancer-genes

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Chemotherapy and hairloss

IMG_0559

Newly shaven

One of the most potentially devastating and traumatic side effects of chemotherapy is hair loss.  Particularly for women this can be what they fear the most.  The loss of their crowning glory.

I did lose most of my hair – I found it to be a positive experience and actually came to love my new bald look – even though (as I lost my hair over the winter months) it was mighty chilly!

I was emotionally prepared to lose my hair from the start having shared stories, seen photos and discussed the impact with friends and my support group.

I think I was more concerned at the impact on family and friends of seeing me bald.  I did do a double take each time I looked in the mirror and saw this bald woman looking back at me!  It took a while to get used to.

But it does grow back!

Within a few months you’ll have a short, close cropped look and after a couple of years (all being well), you’ll hair will be back to normal.

And now – a year after my chemo finished, I have to say, I think my hair is better than it was before.  It certainly came back slightly darker – it was the grey hair that hung on in there while the rest was falling out in handfuls.  I didn’t get the chemo-curl which I’d been hoping for.  My hair has always been fine and straight, so a curl of any sort would have been another novelty.

I actually love my new shorter haircut, so much easier to look after and if it hadn’t been for the circumstances, would never have gone this short before, never mind being bald.

My advice would be:

  • prepare yourself for the most likely outcome – you will lose your hair.
  • accept it as a short-term loss.
  • you may be one of the lucky ones who doesn’t lose their hair.

You have options:

scarves, hats and caps to keep your head warm and to add a bit of style.  You’ll be surprised that some people hardly notice your new headgear (or perhaps they were too polite or too afraid to ask).

wigs, suit some, not others and can give you your more ‘normal’ look.  Also an ideal opportunity to try out a new style or colour.

cold cap – works for some not others. As most of the people at my support group who’d used a cold cap had lost their hair anyway I didn’t even consider this option and besides, I didn’t want to add 2-3 hours to my chemotherapy each time, to say nothing of the incredible painful process of freezing your head each time.

I did get my hair cut short before it all fell out as I wanted it to be easier to manage and have less hair to full out.IMG_0527

It started to fall out a week or so after my first chemo and had pretty much all come out after the second session.

It was then that I got my head shaved as my thinned, wispy scalp was not a pretty sight to behold and having my rapidly thinning hair left on pillows, cushions, in hats, on clothes and clogging up the plughole was annoying.

The unusual experience of being bald was amazingly freeing – saved money on shampoo, conditioner and hair products for several months!

Admittedly my hair care has always been of the wash it and leave it approach.  Certainly saved time in the shower and just needed a light oiling to keep my scalp healthy.

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Don’t hide your head in the sand

Many people who are diagnosed with cancer have had the symptoms for a while but either from fear, apathy or simply ignorance haven’t done anything about them.  Many of the recent TV campaigns are highlighting some of the most common symptoms.

By putting off the diagnosis not only are you putting your health and possibly your life at risk but you’re also delaying getting the right treatment.

If you have any symptoms that persist for more than a reasonable amount of time or that go away but come back, get them checked out.  Better to find out that it’s nothing serious and you can stop worrying and stressing or to find out what it is and get the right treatment.

Most people’s fear of cancer is that they’re going to die!  These days I’m pleased to say, that’s not always the case.  However, the later the diagnosis the more difficult it may be to treat – especially if the cancer has spread.

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World Cancer Day

The stats now show that 50% of us will get cancer at some time in our lives.  (Ticked that box.)

We’re living longer and diagnosis is getting better all the time, so although that can sound like a scary statistic more and more people are surviving cancer.  50% will survive ten years or more after their diagnosis.

The word ‘Cancer’ strikes fear into most people who hear it or are given the diagnosis but it’s certainly not the death sentence it once was.  The earlier it’s detected the sooner and the more successfully it can be treated.

There are things you can do to help reduce or delay your risk such as changing your lifestyle – regular exercise, improve your diet – less red meat and processed food, protect your skin in the sun, stop smoking – the biggest preventable cause of cancer.

Find out more here:

Why are cancer rates increasing?

Show your support text UNITE to 70200 to donate £3 to Cancer Research UK.

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What do I say?

It’s difficult to know what to say when you learn that someone has cancer. Whether it’s someone close to you or a friend or colleague.

Many people try to boost the person up and will be super positive around them. There are always positive stories about people who have beaten cancer and are still alive and well, years later. I heard plenty of those. Equally, there are those who end up with secondary cancer and don’t survive.

Other people will give them the concerned, ‘poor you’ face and tell them they’re being ‘brave’ or just avoid them because they don’t want to feel awkward or just don’t know how to react or what to say.

Platitudes, sympathy and positivity are all very well and each of us will need and want to hear different things.

If you don’t know what to say – ask.

What do they need? What can you do to help? How are they feeling? Yes, daft question, as they’re probably feeling crap but if they’re honest enough to tell you how they really feel it can help just to be able to open up and talk about it.

Be supportive and be there for them. Be the person that spends time with them or takes them off for the day so they can just feel normal for a few hours. Talking about normal ‘stuff’ stops them thinking about themselves and what they’re going through.

Some people will withdraw and just want to have close friends and family around them. Some people will really value the support and offers of help from anyone and everyone.

Let them know you’re thinking about them, even if you’re not able to be there for them.

 

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Tamoxifen – yes or no?

I’ve just had a call from someone who is wondering whether to take Tamoxifen or not.  I’m sure this is a question many people ask themselves, especially as being on Tamoxifen is a long-term commitment – 5-10 years.  Not as long as some people, who have to take any number of drugs through their whole lifetime.

Tamoxifen is prescribed as hormone therapy for those who’ve had oestrogen positive cancer to reduce the risk of the cancer returning.

There are tales of the terrible side effects of this drug.  Many people come off it after a couple of years as they can’t cope with the side effects.  I don’t advise reading the side effects warnings on the leaflets and assuming you’ll get them all – you’d never end up taking any drugs if we did this and then where would the pharmaceutical companies be …

I’ve been on Tamoxifen for about 8 months so far.  I have a few niggles and potential side effects but those might be as much due to the other treatments I had as the drug itself.  Yes, I get hot flushes, I don’t sleep brilliantly and my bones ache but that started when I was having chemo and after surgery.  I’ve found that if I take my tablet in the morning I’m less likely to get achey bones or fidgitty legs in the evening or at night.

It’s a personal thing.  Everyone will react differently and you may or may not experience one or more of the more common side effects but until you start taking it you won’t know.  There are things you can do to help your body – like adjusting your diet or taking supplements.  I’ve also read that different varieties of Tamoxifen may have different side effects, so if you do have a bad experience you might find switching to a different version might help (ask your doctor or oncologist).

Ultimately the decision is up to you.  Depending on your age, the increased risk of not taking it may be something you’re not too concerned about.

Long term effects of Tamoxifen – The Guardian

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