The language of cancer

As a 'brave' 'survivor' who has 'battled' cancer and won by 'staying positive', I find myself reflecting a lot on the language of cancer. If I'm completely honest I hate it! I hate the inference that I am in any way in control of the outcome of cancer, and find it a little disrespectful to those who have died. I don't for one second believe that 'staying positive' will mean that I am one of the lucky ones who won't die of this disease, nor do I believe that those who have terminal cancer are in some way responsible for their condition. I also don't think I'm any braver than anyone else, just that I've had to experience something that was horribly challenging, physically and emotionally and I got through it. Cancer treatment is really rough on those who have to experience it. It's also rough on those who love the person who's going through it. But it's an indiscriminate and random disease. Of each ten women who were diagnosed with triple negative grade 3 breast cancer like myself (and now Carol McGiffin), six of us will be around to tell the tale in five years' time. It won't be the brave ones who make it, or the most positive, it'll just be as random a selection as those of us who got it in the first place.

I think that people who have experienced this shouldn't be made to feel that they can't be truthful about their feelings in case they're not being positive and then are less likely to make it. I want to feel that I can be positive some days, and wail and cry and complain on others. I hope and pray that I will be one of the lucky ones. But if I'm not, then I haven't lost a battle, or my spirit. I can still have been brave and positive. But I will simply have been unlucky.

And, who knows, with all the developments in cancer treatments, maybe it will be even more of us that can share our hatred of the language of cancer in five years' time. Even better, perhaps it will be such a distant memory that we won't even notice!

Amanda

Along those same lines, there may be times when friends or relatives try to reassure you with comments like “God doesn’t give us anything we can’t handle,” or “God must have a reason that this has happened.” Yes, really, I've had these comments!! 

Sometimes these words might make us feel better – we want to believe them! But sometimes they have the opposite effect. While people say these things with the very best of intentions, if you are struggling with spiritual doubts, the thoughts and feelings invoked by such comments might only add to your stress.

Sometimes people say these things because they just don’t know what else to say. You may feel very annoyed and even angry. Sometimes this can be a good topic to talk over with another cancer patient.

 Amanda and I have had many a laugh at some of the comments we've received, including people who can 'guarantee' that the cancer won't come back.

How do you respond to such comments? Cancer is a battle you just don’t want to fight.

Debbie

See what I did there

Lumps, frights and cold sweats - life after cancer

A mere seven weeks after my clear mammogram results and cancer reminded me of its constant presence in my life. After Christmas, like half of the UK, I developed a hideous cough and flu-like symptoms. I battled on, as is my usual way, but couldn't fight the nagging (and often melodramatic) fear that this could be something more onerous. Three weeks on and the cough had cleared, but a gripping pain in my left breast, aggravated by innocuous activities such as sneezing, lying down or turning, prevailed. I went to the local walk-in centre, and due to my history, the resident Doctor checked my breast. I was instantly chilled by the "I'm sorry to have to tell you this..." line and the 'brace yourself for bad news' sympathetic face and the news that I had a 2-3 cm lump which was hard with irregular edges. I was absolutely gutted, even more so than last time oddly, fearing the whole hideousness of going through chemo again far more than the possibility that the cancer could be terminal. I booked an appointment with my breast care surgeon straight away and was seen within two days. During a jovial round of appointments in which I was pummelled by two handsome junior Doctors, examined by my surgeon, covered in jelly, inspected by ultrasound and then went back to the experts, I was told that it was benign. I was beside myself with joy and honestly felt like I was given huge reprieve. Particularly since many of my contemporaries are still bravely facing the challenge of enduring chemo and facing a poor prognosis. So my tip would be...be vigilant, but don't panic. Go and see a specialist as soon as you can and don't worry about wasting anyone's time - that's what they're there for.

Amanda

Only when you've been through cancer can you truly relate to the fear and anxiety that arises when you're about to have your annual mammogram (first one since B.C for Amanda and I).
Yes, well meaning people will tell you to 'stay positive' and 'you'll be fine' and 'you won't be that unlucky to get it twice'...I didn't realise that luck came in to it when I got it the first time?
I had my mammogram two weeks ago today (05/02/15) and two days ago, I received a phone call from the Breast Care Nurse to ask me to go back to the hospital for an ultrasound. She said my mammogram was clear but I needed an ultrasound as this is how my original cancer was picked up.
Amanda can verify that part of my brain didn't believe the nurse and I convinced myself that she was lying just to get me go back for the ultrasound. She wasn't!! My ultrasound was clear too but the anxiety and nervousness I felt having the ultrasound was very real. I can now breathe and relax and hopefully get on with my life until I'm thrown back into 'the zone' when I next have a review or examination.

Debbie

I'm sure this achy ear lobe is cancer...

One thing to be prepared for is assuming that every little ache and pain is the big 'C' on it's way back to steamroller your life. I was determined not to be like this, but I have to admit, I have been. Since Christmas I have had a horrible flu bug that has kept me awake at night with violent coughing and vomiting and made me feel utterly dreadful. Pre-C I was very rarely ill, despite being a chronic migraine sufferer, and this bout of illness sent all sorts of unwelcome thoughts into my mind. I worried that my immune system was so compromised that I would always be ill from now on, and had a nagging fear that this was lung cancer and my time was up. Logically I know that this was nonsense. And, if lung cancer was this easy to treat with cough medicine, millions of sufferers the world over would be partying. But you can't quite eradicate all of these kinds of thoughts from your mind with logic alone. My solution was to talk to other cancer friends. One reckoned her arm pain was bone cancer, another that her headache was brain cancer. Both, fortunately turned out to be false alarms. For some though, similar symptoms were an indication that the cancer has returned and they are in treatment. Again, the majority of people will have lots of moments like this that turn out to be just normal minor illnesses, but when viewed through Cancer Glasses seem to be completely ominous. It's important though to be vigilant about any changes to your body, and anything that lasts over three weeks, get checked out. You can then celebrate when it's 'only' flu!

Amanda

Mammogram clear (for now)

After the 'five weeks to wait for my mammogram results' debacle, I turned to my breast care nurse for help. I explained that the wait would be agonising and would ruin my Christmas and that of my family and loved ones. She spoke to the oncologist for me and within 48 hours gave me the amazing news that my first mammogram was clear. I was absolutely thrilled, relieved and about a hundred other emotions I couldn't even name and went on to have a wonderful Christmas. I have to say though that a number of the ladies who were diagnosed with primary breast cancer at the same time, or in some cases, secondary breast cancer, have not had the same good news. Many people have the misguided view that it is in your control whether cancer comes back or not. They confidently tell you that staying positive, relaxing more and living healthily will do the trick. Of course, all of these things are great, and may certainly have an impact. But the truth is, those women who now have terminal cancer, or who have died, did all of those things too. They were just horribly unlucky. The majority of us will get through this thing, with the joy and added wisdom that such an experience brings. Others will not, and my thoughts are with them as they face challenging times ahead.

Amanda

Hair update - seven months on

When my hair started to grow back, I was desperate to know how long it would take to look good again. For a while it was passable (and as Debbie will confirm anyone who loves you will maintain that you have never looked better) and then I hit a hair crisis. Just before Christmas (six months after treatment), I saw an old college tutor of mine who said, "What on earth have you done to your hair?", and a 6-year old friend of the family declared that I looked just like her Grandmother. I stormed to the hairdresser and demanded that she give me extensions there and then. She gently refused but suggested that I go back to blonde and wait until March to have the extensions when my hair would be long enough to cover them. I conceded, and she dyed my hair a light blonde, didn't touch the top at all and cut the sides. She then shaped it into a spikey do so at least it looks now like a bold intention rather than a sneaky aim to get pensioner's rates on the bus. I'm not a huge fan, but I do feel lots better. It's also growing at a real pace now (still vertically and still super curly) but it's about two and a half inches long on top, so hang on in there!

I'm now almost 8mths since the end of chemo and am six weeks hair growth 'short' of Amanda's hair so whenever I see her, I look at her and know that in six weeks time, my hair will be just like hers.
Mine is very curly and dark and also growing upbank but I actually like it and don't think I'll have long hair again. Let's face it, once you've been bald, any sort of hair is welcomed.
Debbie

Dealing with anger

Throughout my entire cancer 'journey' I haven't felt angry or even particularly sad. Until this weekend that is. I had my first annual mammogram on Thursday. Last year when I was diagnosed, I went private. During my mammogram, the radiographer reviewed my scan there and then, told me I had three lumps, one of which was worrying, and that I had to go for a biopsy the following day. In the NHS, I was extremely surprised to learn that the person doing the mammogram is not trained to read the scan and that there is a FIVE WEEK waiting time for it to be reviewed by a radiographer. This now means that I am set for another horrible, stressful Christmas. This for someone reason has unleashed in me a complete fury! I am absolutely enraged and have so far shouted at both my parents and my husband. Three days later and I am still furious. I have even told my husband to tell people not to tell me to 'be positive' as although they are entirely well meaning, I don't think I can bear to hear that the odds are good (they're pretty terrible), to put it out of my mind (I wish I could but I can't), that everything will be all right (it hasn't been so far) or that of course I should have known that you have to wait for results like they did for their *insert random body part here* test (I feel like five weeks for a wrist X-ray is tolerable, but five weeks to see if you are going to live or die is intolerable). So this isn't the most positive of posts. I do feel though that at least if you know what to expect, you can mentally prepare yourself for the length of the wait. I also think that it's not the most terrible idea in the world to give calm, positive, brave Amanda a few, well deserved days off. Anger is unpleasant for the person experiencing it and the people who have to bear the brunt of it, but it's far healthier to express it than to bottle it up. So let it out, and the people you love will understand. And if you can afford it, do what Debbie and I did, and ease the pressure at a relaxing spa day!!

Amanda


I haven't had my follow up mammogram yet, I've been told that mine will be in February which means it will be 14 months after diagnosis.
Unlike Amanda's well meaning (but not really) friends, I actually do know how she must be feeling.
I can't say to her 'don't worry' or 'put it out of your mind' because I know in two months that I'm going to be in the same situation as her and waiting a possible five weeks for the results of my first mammogram post breast cancer/chemo.
Only people who have been in our situation can truly know how we feel. It's not just waiting around five weeks for results, actually we've got to live this for the rest of our days.
Before BC, any aches and pains were brushed off as exactly what they were, just aches and pains. Now with every ache and pain comes that shadow of doubt.
Amanda and I have both agreed that actually, we both feel really well, we both look really well and cancer/chemo is becoming a distant memory. And then we're thrown back into 'that life', routine reviews and mammograms and it all becomes real again.
I do think that for any woman who has been through breast cancer/chemo, we should be able to have our mammogram results quicker. Again, until you have been through it then how can people possibly understand how anxious and sick the waiting makes you feel?

Not happy to be waiting, but I am waiting

For goodness sake - avoid buses!

The odds of being hit (and killed by a bus) are 13 million to one. This is interesting since people seem to be convinced that this is going to happen to them. When faced with my prognosis, which is around a one in two (worst case) to one in five (best case) chance of not being around in five years, people think I will be reassured by the thought that they may get hit by a bus. Unless the people I know are particularly poor at road safety, it's scant consolation. Conversely, the odds of winning the lottery are one in 14 million, so that's slightly more consoling (although winning the lottery and then being hit by a bus would be most unfortunate). It's so tricky for people to face their mortality, and indeed, that of the people they love, so this helps them to rationalise what is really a horrible prospect to have to think about. When you're faced with these kinds of odds, there are masses of positives - you truly learn to appreciate the people you love, waste less time on silly worries and grasp opportunities you may not have otherwise taken. With cancer, you also get to hear how people truly feel about you, which is wonderful, uplifting and incredibly humbling. So I guess you have to take the rough with the smooth. What I would recommend is telling people that you remain positive about your future, but that it's something you need to come to terms with and deal with in your own way. And perhaps suggest that they look both ways before crossing the road!

Amanda

Getting hit by a bus outside the Cancer Centre - a statistical nightmare