Returning to a new 'normal'

Life after breast cancer means returning to some familiar things and also making some new choices. 

The song says "It ain't over 'til it's over," but when you've had breast cancer, you discover that it's not even over when it's over.

After a marathon of breast cancer diagnosis and treatment that may last six months to a year, you can hardly wait to get back to a normal life again (what is normal?)

But the day of your last  treatment or chemotherapy infusion doesn't mark the end of your journey with breast cancer. Friends and family may expect you to get back to 'normal' now that your treatment is over.

Instead, you're about to embark on another leg of the trip. This one is all about adjusting to life as a breast cancer survivor. In many ways, it will be a lot like the life you had before, but in other ways, it will be very different. This is now your "new normal."

Everything changes,from your relationships with your family and your spouse/partner to eating habits and exercise. It will change your life in ways that last well after treatment ends. How do you fight lingering fatigue?

What should you eat to help prevent a recurrence? 

These are just a few of the questions that may nag at you as you make the transition from treatment to a survivor.

Almost 11 mths post chemo, my hair has really started to grow back. It's curly where it once was straight but it's hair. I have eyebrows and eyelashes again. So why am I still so tired? When will I really feel like me again?

You've been hit while you're down so many times: with surgery and anesthesia, perhaps with multiple cycles of chemotherapy, perhaps with radiation, ever likely it takes a long time to fully recover.

Luckily, I've done a lot of research and found that my constant forgetfulness, lack of concentration and general tiredness are all classic symptoms of someone who has had chemotherapy. How long the symptoms are going to last is anyone's guess or is this my 'new normal'.




Debbie

The C-word and a weekend of loss

I was saddened this weekend to hear about yet another young woman who has been lost to cancer, Rebecca Ellison, wife of Premiership footballer, Rio Ferdinand. In the same weekend, we were treated to the incredibly powerful documentary, The C-Word, inspired by talented blogger Lisa Lynch. I toyed with the idea of not watching it, but felt that quite frankly, I owe it to Lisa, and others like her who have used their not inconsiderable talent (that means you, Kate Gross, with your breaktakingly beautiful book, Late Fragments) to educate the world about this hideous disease. What The C-Word managed to do was to bring to life the real horrors of breast cancer. I loved it for its real, unsanitised truthfulness that accurately and gut-wrenchingly represented my experience last year. The physical rigour of having to endure forty-eight hours of violent vomiting; the unrelenting, agonising migraines; the diarrhea; constipation; loss of appetite; burning piles; thrush; a throat so dry and painful it keeps you awake at night; bloating; weight gain; joint pain that makes you cry out; feet so sore you can't even put them on a cushion; elephant-like ankles and crushing exhaustion that makes even going to the bathroom an insurmountable challenge. Then there's the loss of identity, of your hair (and no, I didn't want to try a new hairstyle, I loved my hair and I would love it back), my scar-free body, my eyelashes, my confidence, my strength, my belief in the fairness of the world and my hopes of growing old with my husband. There's the gripping fear that even though this chapter is tentatively closed, with my recurrence odds, there's a one in three chance that like Rebecca, Lisa and Kate, I may not make it. (And the horrible realisation that when the odds for something are 'one in three', people are really excited for you as these are "really good odds").

I feel that we should all watch The C-Word and read Late Fragments. If you've not been through it, but know someone who has, then watch it and tell them that you feel for them and know that what they went through is not easily forgotten. If you've never been through it, then watch it and be giddily grateful that it's them and not you. Either way, we owe it to these brilliant young women to share their legacy. Hopefully a legacy that will result in more women being aware that this is not a disease for old people, for smokers or for heavy drinkers. It's a disease that can affect any of us at any time, and only by being vigilant, can we prevent it claiming any more of us.

Amanda  

I also watched 'The C Word' but a few days after it was aired on tv. On my own.
The last thing Lisa Lynch had expected to put on her ‘things to do before you’re 30’ list was beating breast cancer, but them’s the breaks (her words). So with her life now on hold, and her mind close to capacity with unspoken fears, questions and emotions, she decided to start blogging about the frustrating, life-altering, sheer pain-in-the-arse inconvenience of getting breast cancer at 28.
It's an unflinchingly honest and darkly humorous account of Lisa’s battle with The Bullshit, as she came to call it. From the good days when she could almost pretend it wasn’t happening, to the bad days, when she couldn’t bear to wake up, Lisa’s story is emotional, heartbreaking and often hilarious. 
I pretty much cried all the way through it, on and off, when she was first diagnosed, when her parents were crying and at many other points during the showing of this brilliant portrayal of women like me. It was also very real life for me because she had the same breast involved as me and we both had the same operation (mastectomy & reconstruction).
I have secretly kind of hoped that my friends and family watched this and hopefully have a better understanding of what we actually go through. 
It was also strange watching this and feeling everything that Lisa felt because sometimes it still doesn't seem real and feels like it happened to someone else and not me. 
I was so impressed with 'The C Word' that i've told my husband that he has now got to watch it on his own too.

Debbie

The battle continues

One of the issues I've really been struggling with this year is tackling the usual challenges of life with the added issues of the cancer aftermath. Since everyone loves a good war analogy when it comes to cancer, this one pretty much sums it up for me. Before I had cancer, I was fighting a war on a number of fronts. I had family challenges, was running a business and had two chronic pain conditions to manage. I was just about winning. Then a huge country declares war on you and you end up fighting on a new front. But this war is ugly. It takes everything you've got and throws a whole new concept of psychological warfare into the mix. You just about hold back this new, aggressive army and call a ceasefire. But, then you realise, you can't rest and rebuild, because the other wars are raging on. So now you have depleted resources, a damaged infrastructure and an uneasy awareness that your biggest enemy could attack at any time. It's a hostile new world. My advice? Can I get back to you on that one?

Amanda

Another day another battle

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