From one survivor to another
There are a multitude of books available in stores nowadays written by medical scientists, doctors and nurses alike, who all have ample experience in the field of Oncology. They have written these books to help people like you and I, who have no choice but to plunge into the unknown and terrifying minefield that is breast cancer. I have great admiration for these professionals, who have dedicated themselves and made it their life’s work, to try and help people who have been struck down by this cruel and insidious disease. It takes a special breed of person to remain calm and focused, while dealing with emotionally volatile patients and family members everyday, who find themselves unexpectedly thrown into the midst of a health crisis.
On top of that they still find the time to sit down and put pen to paper, or fingertip to keyboard if you will, to document as much information as they can in order to help us make informed choices that are right for us as individuals. They do this so that we have as little chance as possible, of regretting any decision that we have made regarding treatment in the years to come, and rightly so.
Although I absorbed many of these books like the proverbial sponge and found them inspirational and comforting in my dark hour of need, it also made me realize that there are very few books on the market that address the subject of breast cancer not just from a medical stand point, but also an emotional one, coming from a woman who has already embarked on that journey. One who can sympathize and empathize with the traumatic ordeal that you are going through right now.
Being a three time breast cancer survivor myself who has had to live with the constant presence of this disease for 11 years now, it is my wish to provide a beacon of hope, emotional support and guidance providing useful tips on how to navigate the seemingly endless blur of doctor and hospital visits. Cutting through all the medical jargon is paramount at a time when all the information that is being thrown your way can become completely overwhelming and when even worse, misunderstandings can take place.
I have learnt through bitter experience, that it is better to adopt a no-nonsense approach to the daunting prospect of treatment, and how to go forward from there. This may sound borderline brutal I know, especially given that you are extremely traumatized and emotionally fragile right now, but in order for you to get the best possible care and treatment, you cannot afford to sugar coat anything.
Having said that, I must be honest with you in saying that you are embarking on a long and arduous journey. There will be many ups and downs where you will experience days of triumph, and others of despair and helplessness.
The really good news is that scientists are making ground breaking progress every year with regards to research, and discovering new and improved ways of treating breast cancer. Mortality rates are clearly going down as more and more women are becoming increasingly aware and educated about this disease and are beating the odds and going on to live much more fulfilling lives.
I am here to tell you that you can do the same. Millions of women have overcome breast cancer and recovered completely. Others like me have had no choice but to come to terms with, and learn to live with the disease. There is a clear advantage in all of this though, in that you automatically gain more meaningful insight into how life should really be lived and appreciated.
You are on the path to discovering this valuable lesson, and once you have emerged on the other side, you will be stronger and wiser for it.
In the chapters that follow, you will find helpful and candid advice on how to deal with your diagnosis and treatment. We also cannot forget the psychological, emotional and spiritual side of you that is so vitally important to nurture at this time in your life. I will also discuss nutrition, and cover the controversial topic of food laced with insecticides and pesticides, versus organic food and other products that are available on the market today.
As a veteran in this field, I know only too well that, quite apart from taking great care of your body through all the challenging treatments, if you pay close attention to your mind and spiritual wellbeing as well, you will prevail in the end.
I will also go in depth into the genetic versus environmental debate and list some of the hazards that constantly surround all of us, and how you can take steps to minimize your exposure.
I truly believe that it is only a matter of time until we find a cure for breast cancer.
Until then, we will continue to put one foot in front of the other, keep our chins up and never give up the fight!
My prayers and best wishes are with you and your family in this trying time.
Important note: The information in this book is not meant to replace any advice or medical care that you obtain from your health care team.
Nothing can ever compare to the blinding shock and horror of receiving a breast cancer diagnosis. The moment the doctor hands you that piece of paper and says, “I’m so sorry but it is cancer,” (a key phrase many of them use), your life is irrevocably changed forever. You are forced to stare your mortality straight in the face, and any previous misconceptions of invincibility that you so dearly clung to for most of your life, go flying out of the window. You find yourself having to reassess your entire life, and everything that you have stood for. Your body suddenly becomes like a stranger to you; the sworn enemy.
The first thought that starts to tumble around in your mind over and over again like a washing machine stuck on an endless cycle, is that you’ll pinch yourself and wake up any second now, only to discover to your great relief that this is just some horrifying nightmare playing itself out after all, things like this don’t happen to you! It always happens to somebody else.
Most people wrongly assume that if breast cancer doesn’t run in their family, then they cannot get it either. What we do not always realise, is that somebody has to be first. There doesn’t necessarily need to be a family history.
There are genetic tests available that test whether you have a genetic predisposition for breast cancer, which are called the BRCA1 and BRCA2 genes. These belong to a class of genes known as tumor suppressors. Mutation of these genes has been linked to hereditary breast and ovarian cancer.
What has to be kept in mind however is that hereditary breast cancer accounts for only 10-12% of diagnosed cases. Most breast cancers are caused by environmental factors, which is a very unsettling prospect I know.
Whether you do have yourself tested for these genes or not is a very personal choice and one that you need to give a lot of thought to. The results of these tests could have untold consequences for other members of your family, and testing is expensive with many medical aids being loathe to pay for them. Ultimately it is a question of being able to live with the results and being able to handle the repercussions.
‘I thought long and hard about whether I wanted to go through with the BRCA1 & 2 testing. In light of the fact that I had breast cancer and so did my mother, I wasn’t sure whether I wanted to know what my daughter Mia’s probabilities were. I wasn’t sure whether I would be able to carry the guilt and I didn’t know how she’d react. I was afraid she would become paranoid or even worse, that I would become paranoid for her. I think I made the right decision in deciding not to be tested. It is a very expensive procedure and all my doctors advised against it. My sister Linda decided to do the tests which turned out negative, however, the results proved inconclusive as just one short year later she too was diagnosed with breast cancer. I don’t think that anybody can rely on the results of these tests 100 percent.’
Lara Berlot – Breast cancer survivor
What a lot of people also forget, is that men can also get breast cancer, although they account for only 1% of diagnosed cases.
The fact that 80-85% of breasts lumps that are detected prove to be benign, lures many people into a false sense of security.
On this note I have a confession to make. I never practised self breast examination. I was always aware of the fact that it was important but to be honest, I took my health for granted and never realised or thought that I could ever get breast cancer, especially given the fact that it doesn’t run in my family. I always thought that it was a disease for other, more elderly women, but I couldn’t have been more wrong. I also had fibrocystic breasts which does make it more difficult to detect lumps, but is no excuse for not doing monthly checks and getting to know how your breasts normally feel. What many women don’t take into consideration, is that if they don’t examine their breasts every month and get to know how they should normally feel, and a lump does develop, then they won’t know if that lump is anything out of the ordinary or not. Many women go on to be diagnosed with stage II and III breast cancer because of that. Many are embarrassed to admit that they have never examined their breasts on a regular basis, and even more embarrassed that they didn’t actually detect the lump themselves, but that their partners did. More often than not, it is the partner that actually finds it, and realises that it isn’t normal and needs to be seen to. My husband was the one that urged me to go to the doctor in the first place, because the lump that he felt on the side of my left breast was new. I would never have known the difference and sought help otherwise.
As it turned out, I was one of the unlucky 15-20% where the tumour was in fact malignant.
With the fear of putting you off certain food groups, the best way to detect a lump in fibrocystic breasts is to look for a frozen pea amongst cottage cheese.
This brings me to the subject of misdiagnosis, and the fact that I narrowly escaped it, which many women are not lucky enough to do.
My general practitioner sent me for a sonar after I consulted her about my lump. Of course, the sonar came back negative. In the case of detecting breast lumps, sonar’s and X-rays can be highly deceptive. I don’t know why they are even considered as a diagnostic tool. Luckily my doctor had the good sense to refer me to a breast surgeon, and urged me to take it further just to make sure.
Even if you are fairly certain that it isn’t breast cancer, do not leave it there. Go and see a breast surgeon. Although a mammogram or even a fine needle biopsy seems very extreme at the time, it could save your life. It certainly did mine.
What also needs to be considered is that the younger you are, the denser your breast tissue tends to be, which makes it more difficult to detect a tumour even with a mammogram. Some doctors support a fine needle biopsy as the ultimate diagnostic tool, and in certain instances I agree with them.
Despite the overwhelming fear that engulfs you right now, there is one thing that you need to realise. You have not been dealt a death sentence!
I know that may sound very easy to say, but unless you are in the very advanced or terminal stages of the disease, where all that your doctor can do is just make you comfortable, there is hope.
As I mentioned earlier, scientists are making incredible headway and constantly breaking new ground with regards to finding new and improved ways of treating breast cancer. Although mortality rates vary they have clearly gone down, as more women than ever are surviving this disease, and going on to live more fulfilling and meaningful lives.
Ten years ago lying in my hospital bed, I emerged from a six hour anaesthetic and morphine induced sleep, only to find a nurse sitting on my bed next to me holding my hand.
My family had no idea when I was going to come around, and so they had popped down to the canteen to catch their breath.
She smiled down at me, introduced herself and then went on to tell me a very inspirational story that proved invaluable to me and my recovery.
She had been diagnosed with breast cancer and was a complete wreck. The cancer had widely metastasised and the doctor didn’t hold out much hope for her. He told her that she had less than a year to live.
For a few weeks after that, she refused treatment and shut herself up in her bedroom and wouldn’t come out. She had no idea how she would ever be able to face her family and friends ever again. Without realising it at the time though, she did herself an enormous favour. She allowed herself to cry, scream, rant and rave. She threw things across the room and cursed God while she was at it. Then eventually one morning she woke up, and it was as if her whole mindset had suddenly shifted. She no longer felt the shock and devastation that had plagued her for so long. Lying in her bed, she took a very courageous step forward. She decided that she was going to fight this cancer with every last breath that she had, despite what her doctor had told her. At the same time, she decided to hand it over to fate, and go on living what was left of her life to the fullest. That way, when the end came, she could at least say that she had tried her best and at the same time, would have no regrets with the sound knowledge that she had at the very least done things her way. She went over to her desk, and made a bucket list of all the things she was determined to achieve before her time came. She opened the curtains and let the sunshine stream in, and then went and showered and got dressed.
The nurse then said something to me that changed the way I saw the situation forever.
She said “That was eleven years ago.”
That was the moment when I realised that no matter how insurmountable my obstacles seemed, that I would be okay in the end. Hearing that story also allowed me to let my guard down and let my emotions take over for a little while. It created the much needed space to grieve and allow myself to swallow this very bitter pill that had been shoved into my mouth against my will. I had to stop putting my husband and three little girls before me, and allow my survival instincts to take over and put myself first for a change. That was when my flood gates finally opened.
‘Breast cancer is not a death sentence. It changes your journey in an unexpected way, but not necessarily in a bad way.’
Dr Grace Edwards – Breast cancer survivor
It may not seem like it now, but you will eventually stop reeling from the shock of your diagnosis, and that is when you will want to be strong for your family. As a daughter, wife, mother and sister, you won’t want to show any emotion for fear of upsetting friends and family, especially your children, but the truth is that you owe it to yourself. It is a vital part of coming to terms with your diagnosis, and maintaining your well-being.
‘I think I cried for the first two months every day. I thought the tears would never stop and just when I thought I’d composed myself it would take the smallest thing to set me off again. I was a mess, but what I did manage to do was accept and embrace the emotions and to let it all out, which felt so much better than holding it in. Eventually it got better and I was able to sit down and tell friends and family, and then I was the one holding out the tissues for them.’
Lara Berlot – Breast cancer survivor
I would wait until I had tucked the children in at night, and then use my husband who also happens to be my best friend as a buffer and sounding board. I would close the sitting room door so that the children couldn’t hear, and then talk and cry it out. If during the day I found my emotions starting to overwhelm me, and the children were around, I would give them something to keep themselves busy with for a short while, and go and lock myself in the bedroom and scream and sob into my pillow.
I chose not to tell my children at first until I was sure that they were completely ready to hear it, as they were only 4 and 2 years old respectively at the time. If they had seen me go off the way I did and didn’t understand why, I had no idea how it would affect them psychologically and emotionally and I was not prepared to take the chance.
I have to tell you in the same breath too, that for about a week after my diagnosis, before I had my mastectomy and found out that the cancer had not spread, I could not bear to look at my children, let alone hug them and look after them. My heart was breaking in two at the possibility that I would never get to see my daughters grow up, get to see them graduate from school, or see them get married. My husband had to take additional leave from work just to look after them, while I lay curled up in my bed holding my own private pity party. It was only after I heard that the cancer had not spread that I could embrace them again.
If you still have small children, you might find the same thing happening to you too. It is part of the grieving process, but I would say that if it goes on for quite a prolonged period of time, then it can become unhealthy because from there it is very easy to fall into an even deeper depression. I would advise that you seek counselling if it lasts for more than a few months. In the meantime, make sure that someone is looking after the children for you, so that you have the time to take care of yourself first. You will be no good to your children if you are depressed and anxious most of the time. Children, no matter how small they are, are very perceptive and your feelings will rub off on them, making your life even more difficult than it already is. Very young children will sense that something is wrong and, not understanding the situation or being able to articulate their feelings, start acting out.
Even after ten years, my daughters (now 16 and 14) still ask me repeatedly if I’m okay, if I so much as flinch.
As difficult as it is, we need to teach our children that death is a natural part of living and that it is just a small part of a much bigger spiritual journey that we are on.
Explaining your diagnosis to your child/children
In general children are very resilient and their reactions and how they cope with your diagnosis may very well pleasantly surprise you. If your children are of school going age and are old enough to understand, it is important to tell them about your breast cancer diagnosis in simple terms that is easy for them to understand and will prevent them from becoming completely overwhelmed. It is better for them to obtain all the information from you rather than a teacher or friend at school who could very well blow it up well out of proportion, scaring your child even more. Give your child little bits of information at a time and use the same terms consistently. Let you child guide you by answering any questions he/she asks you. Although there are certain basic things that your child needs to know right away, keep in mind that they also often ask questions only when they’re ready to hear the answers.
Simplified child friendly medical terms
Intravenous tube – A special tube that puts water and medicine in mommy.
CBC (complete blood count) test – You could explain that blood has three parts to it. White blood cells fight off germs to protect your body. Red blood cells work hard to carry oxygen to your whole body. Platelets help you to stop bleeding when you’ve hurt yourself and they form a scab. All these parts float around in plasma and a CBC is the way that doctors can look at your blood and count these different cells to find out what is going on in your body.
Chemotherapy – Medicine that is specially made to make mommy well again. It is a liquid that goes through a special tube into mommy and it also sometimes comes in the form of a pill.
Radiation – A way of killing the cancer cells by using very strong but invisible x-rays.
Biopsy – A way that the doctor can check to see what is wrong inside mommy’s body which will tell the doctor how best to make mommy better again.
Surgery – The doctor will make an opening in mommy’s body to remove the cancer.
Mastectomy – The doctor will remove or take away mommy’s sick breast where the cancer is.
Reassuring your child/children
- Tell your child/children that nothing they said or did caused you to get sick.
- That you are not sick because they did or said anything bad or wrong.
- Assure them that cancer is not something that a person can catch like a cold or flu, and that you cannot pass your disease on to anyone else.
- Tell your child that you don’t know why you got sick and that even the doctors may never know why either.
Faced with the news of your diagnosis, your child may associate your cancer with the threat of dying. It may happen right away or it could take them a bit longer to reach that point. They may start asking you questions right away or maybe in the weeks or months to come. Avoiding these questions about death and not discussing the connection with your child won’t protect him/her from potential anxiety and fears. As uncomfortable and difficult as it is, it is necessary to ensure that children understand what death is and how your disease can affect your life as well as theirs.
Listen to your instincts as a parent. You know your child better than anybody else and you will find the best way to explain everything to them as best as possible, according to his/her developmental level of understanding.
Helpful responses to questions
- ‘Some people do die from having cancer, but many people also get better and live to be old and I fully intend to be one of them.’
- ‘The doctors and nurses are doing everything in their power to help me get better, and lots of people who get my type of cancer has lived for a long time.’
- ‘Right now the doctor says that I am doing well. If that changes I will let you know.’
It is very tempting and a lot easier to use euphemisms when it comes to discussing death. Always use the word ‘die’ and avoid using substitutes such as ‘deep sleep’ because this phrase can cause a child to become fearful of sleep and even worse, to think that you have died when all you’re doing is having a power nap.
Tell you child ahead of time what is going to happen next so that nothing catches them off guard and causes them even more stress and begin to think that death could happen at any moment. Let them know that it is okay to be sad and cry and encourage them to voice any future concerns or fears with you and that they must never feel as though they are burdening you. This will prevent them from internalising their feelings; internalising can cause a whole host of problems that can arise over time. Let him/her know in no uncertain terms that you are both going to get through this together.
Your child will also ask you various questions many times over, to the point where you will fear losing your patience, but take a deep breath and just explain it to them again. They also need clarification on certain points and in addition it is their way of reassuring themselves.
Try to keep your normal everyday routine on track as much as possible to provide as much stability as possible for your child/children.
Before you go into hospital provide your child with a familiar object like one of your lightly worn T-shirts that still has a bit of your scent on it, or a photo of yourself that your child can keep close to them or on their bedside table.
If your child asks you something that you don’t know the answer to don’t be afraid to say, ‘That is a good question, but I don’t really know. Let me find out the answer to that one for you and I will let you know the moment I find out.’
Before your child visits you in hospital it’s imperative that he/she is prepared for what they might face when they come to visit you. Perhaps dad can explain that there might be special medicine in a bag that’s going through that special tube and into mommy that is helping her to feel better. Some children are fine in the hospital environment, while others don’t want to visit at all. If your child is reluctant to make an appearance, then keep the lines of communication open because talking about it is very important. Some hospitals arrange short tours in certain areas of their facilities to familiarize children with the hospital setting to put them more at ease. If your child is still adamant that they don’t want to visit, then don’t force him/her to. Rather keep the invitation open even if it is repeatedly turned down, and encourage conversations over the telephone instead until you’re ready to return home.
If your doctor prescribes chemotherapy and you’re going to lose your hair, there are things that you can say to put their minds at ease before the time.
- ‘The medicine that I need to take is very strong and it will make my hair fall out, but you must not worry because it will grow back I promise.’
- ‘I may start to look different on the outside but I’m still the same person on the inside.’
‘It was especially hard for me to tell my daughter Mia as she was only 10 years old at the time, but was still well aware of what cancer and its side effects were from watching my mother battle breast cancer for so many years. I decided to be very open with her at all times and to keep it simple. I didn’t hide anything in the hopes that she would have a better understanding of what was going on. I don’t think we can underestimate a child’s logic and thinking and time after time, she was the one that taught me so much in the way of coping.’
Lara Berlot – Breast cancer survivor.
You also have the very difficult task of contacting relatives and friends to tell them of your diagnosis. It is very important for you to also realise that breast cancer is not just your disease; it is going to affect the entire family. Believe it or not, after spending hours with the phone glued to your ear, you will start becoming numb and surprisingly stoic.
I am afraid that there is no way to use euphemisms in a situation like this. Everybody has a different way of breaking this kind of devastating news, but there is actually no other way of doing it except by just putting it out there and getting it over and done with. In an abrupt 360 degree turn, you will amazingly find yourself counselling and comforting other very emotional family members and friends, as your nurturing instincts kick in, and you try to reassure everybody that you will be okay, because you want to cause them as little worry as possible.
‘I was misdiagnosed twice, so finding out that I did in fact have breast cancer was a huge shock. I am a very calm person so I decided to tell people calmly, and face to face wherever possible.’
Dr Grace Edwards – Breast cancer survivor.
If you are anything like me, and don’t like people fussing over you, then I’m here to tell you that all the reassurance in the world won’t help. Family members will be banging your door down to get in and help you with whatever they can, and you must let them. Allow your best friend to come over and do a few dishes and run the vacuum cleaner around the house. If you feel that you need a breather then ask your husband to take the kids to the park for a while, so that you can have a few quiet hours to yourself to gather your thoughts. Relinquishing control and letting other people help you for a while will do you the world of good and allow you to be an even better wife and mother. You need all the rest and relaxation you can get. If you push yourself too hard, depression and anxiety can set in causing even more problems.
‘My partner and I had a complete transformation in our relationship. I was always the stronger one in charge, but by suddenly not being able to be, it gave him a chance to stand up and take over. By allowing him to take care of me it taught me the gift of being able to receive, which was very new to me.’
Lara Berlot – Breast cancer survivor.
Unfortunately, you will also find out who your real friends are, and who are not. Sometimes ‘who are not’ is a strong term to use, because you may have a really good friend that starts to pull away when you’re in the throes of treatment, just when you need them most. Some people cannot handle a situation like this and find it very awkward to talk about the big ‘C’. He or she might also be distancing themselves, because they may be very afraid of losing you.
The best thing to do to put that person at ease, once you feel up to it and you’re having a good day, is phone them and ask them to come over. Tell them that you will be alright and that you don’t mind talking about your illness.
Say, ‘Okay, what do you want to know, I’ll tell you everything. Let’s talk about this.’
On the other hand, there are those that choose to turn around and walk away, and that don’t want to be contacted again. As hurt and confused as you may be, remember that it is in a case like this that people show their true colours. Maybe that person is not worth it after all. You need to focus on surrounding yourself with loyal and supportive friends, who have a sense of humour and who make you laugh. They should lift your spirits and nurture your soul. There are a number of ways that you can prevent some rifts from forming and break the ice at the same time.
Talking to your friends about your breast cancer
- Let your friends know that they can speak openly and directly with you about your breast cancer, or alternatively that you’re not quite ready to broach the subject just yet but that you’ll let them know when you’re ready to talk things through.
- Ask them to keep calling you even if you don’t always answer the call or feel like talking.
- If you can’t see your friends ask them to stay in touch through phone calls, texting, letters or email’s.
- Tell your friends that sometimes all you need is just for them to listen.
- Remind them that even though there have been some changes to your external appearance, that you are still the same person on the inside.
- Ask them to keep inviting you to events, even if you don’t always attend.
- If you can’t go out, ask some friends over and watch a movie or just keep each other company.
- Ask a friend for their help with meals, running errands, transportation, shopping or hospital visits.
- Encourage them to share their feelings with you. That way they will feel much more at ease.
Helping a friend through a breast cancer diagnosis and treatment
- Often it is best to just listen rather than talk all the time. Take cues from your friend as to when the best time to speak is. Patience is the key. If you feel the need to ask questions, make sure that you phrase them in the most sensitive way possible and remember to also talk about familiar and everyday things too.
- You have to respect her need to be alone at times and if she takes her anger and frustration out on you, try not to take it personally.
- Although it can be very tricky, try to be as present and supportive as you can, while keeping things as normal as possible. With breast cancer at the forefront of her life in every respect, she’s going to crave a sense of normalcy at times. Being flexible and supportive is often the best and most effective approach.
- It’s understandable to experience fear, anxiety, anger and disbelief in the face of your friend being diagnosed with breast cancer. Communicate your feelings to her but try not to become too emotional and overburden her in the process. If you find that you can’t keep your emotions in check then take some time away from her to calm yourself and try again another time.
- Your friend will need your physical as well as emotional support. Offer to run errands, care for the pets or to drive her to appointments or to take the children to school or pick them up. Let her know that if she needs any help that you are there for her but keep in mind that some people have a hard time asking for help and surrendering control.
- Keep eye contact and listen attentively. Don’t give her the impression that you’re rushed and never leave abruptly.
- Giving advice that isn’t asked for can cause unnecessary pressure. Listen first before offering to fix things.
- Avoid phrases like ‘I know what you’re going through’ or ‘I know how you must feel, because unless you have been through a breast cancer diagnosis yourself there is no possible way you can know how she’s feeling. Rather say, ‘I can’t imagine what you must be going through right now, but just remember that I am always here for you.’
- Once it has been confirmed that your friend does indeed have breast cancer it is tempting to say to her, ‘Everything will be fine’, but it is best to leave that one well alone too, because the reality of the situation is that you have no idea what the outcome will be. She will see that as a frivolous comment and withdraw from you thinking that she cannot express her true concerns with you.
- You may be compelled to rush in and attempt to try and make everything okay, but most of the time it’s better to pause and rather listen to the suggestions of others and to your friend’s health care team.
- If you are one of those that tend to internalise the pain and guilt that they’re feeling, speak to someone that you trust or a counsellor to find some sort of resolution, otherwise the situation will eventually get the better of you and you won’t be emotionally equipped to provide support.
Remember that everyone makes mistakes at times and you may very well end up saying something wrong or let something slip that was a seemingly innocent comment at the time. Don’t be anything other than yourself.
Update 10th August 2015: My book has been published and is available in paperback and kindle at: https://www.createspace.com/5468310