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

Recurrence roulette

It's a few days until my first mammogram - almost one year to the day since my diagnosis. With Triple Negative Breast Cancer the chances of recurrence in the first two to three years are pretty high - reports settle on between 20% and 40%, and the prognosis is significantly poorer if it comes back this soon. This is largely because there are few targeted therapies for TNBC, unlike the hormone treatments for other types. So, to me, the mammogram is a bit like having a gun pointed at you with three or four blanks and one or two bullets in it. It's scary. There's also the challenge of being told by well-meaning friends and family to 'be positive' when truthfully there's absolutely nothing you can do to change the outcome. It really is all down to chance. So, what can we do to manage this fear? I've done a lot of work on relaxation techniques, read a lot of books on living for the moment (the Power of Now is a good one, as is anything by Brene Brown) and talked openly with friends. My advice is to talk openly to someone who's had cancer. It's impossible for anyone who hasn't been in your shoes (or bra in this case) to understand how you feel, and friends and family want to say something to help you and don't want to think about losing you themselves, so it's hard to be truly honest with them or for them to be truly honest with you. I think that confronting how you feel and being pragmatic without being 'doom and gloom' is probably the best bet. If it's back, you can deal with it then. If it's not, you can celebrate wildly...until next year!

Amanda

It's scary, I'm not going to lie

Warning: your hair might grow back ridiculous

Many people advised that my hair might grow back curly. Others said that it could come back a completely different colour. Few predicted that I would be working a full-on 70s Northern Soul vibe only a few months after treatment. My initial joy to have hair at all has now been replaced by wry confusion at this untameable barnet. I am on my first 'big' holiday after treatment. Having a truly marvellous time. However, my 'hair' has taken on a personality all of its own. Formerly straight with a slight kink and a light mousey colour au naturel, it is now a very dark brown, almost black and almost afro. In the mornings I style it to look as pixie-crop-like as possible. Then throughout the day it grows vertically and curls up on itself until it looks like it belongs to someone else entirely. No-one would suspect that I had cancer only a few months ago, but they were right when they warned..it could come back curly. And...most of my eyelashes fell out again annoyingly. I would suggest that you give them about six months or so to recover before subjecting them to too much beautification, and as for the hair..embrace it...or start a 70s tribute act.

Amanda

What I could look like without 'product'