All dressed up... again!

Waiting...

Two weeks ago I went again to the hospital for the "breast surgery: the sequel", almost one and a half years after the first big surgery.
There's nothing nice about having surgery: I felt nervous and anxious. I was hungry and tired (hadn't eaten and hardly slept). I felt vulnerable and sad.
It all became very real when the surgeons (I had two this time) came in to make the markings on my skin, one made his marking in black, the other in green. After that, the same ritual starts: the anaesthetist comes to ask the usual questions, the phlebotomist draws some blood, the nurse makes sure I am well and gives me a fancy hospital gown, very white compression socks, anti-slip green socks (health and safety!), disposable panties (sexy!) and a non-matching robe. So pretty! Luckily S. thinks that even in a hospital gown I am still the prettiest girl ever (love is blind!).
It is the fourth time I have surgery in this hospital and I almost feel at home there. The room is nice, with two big windows, it is quiet and comfortable. There is a closed balcony with sofas where patients and guests can go to read and relax. The nurses and staff are just amazing, when they heard I was in the ward they came to say hello and wish me luck. They are really nice people and they treated me very well, as always.
I was then taken to the operating theatre where the anaesthetist and his assistant were waiting for me. The anaesthetist had some difficulty finding a suitable vein. My right arm cannot be used (to reduce the risk of lymphoedema) and my left arm is still recovering from the chemotherapy induced phlebitis. Against his will he ended up putting the catheter into a vein in my hand. Before I had time to count until five, I was asleep. I woke up from the surgery in pain and the first day was a bit rough but the surgery went well and I am doing fine now, recovering fast and without complications (I'll spare you the gory details).
I am at home, on sick leave for about three weeks. I can't do much so I read and watch movies with my mother. Not a bad life!
I try not to think much about what I went through, about how I look and how I will look like in the future. Emotionally I feel weaker than before, I feel tearful most of the time and I am always making a huge effort to stay positive, smile and enjoy life.

Thank you all for your support

Here are some pictures of the Cancerkin Hyde Park walk last weekend.

It was fun and we were lucky enough to have some sunny spells and no rain at all.

And no, I wasn't wearing a tutu...

Has it really been a year?

One year ago I was panicking, crying and afraid, I had no idea what was expecting me and I had no idea how I was going to deal with it.
It is hard to believe that a year is gone already.
Although I don't feel safe from recurrence, I am not always thinking about it either.
If breast cancer is most likely to recur within the first two years after diagnosis, I am happy to say that I survived the first one year without any bad news. I am not a big fan of statistics but it makes me feel good to think that I am half-way.

Sponsor me, your donation is going to a worthy cause. Help me reach £1000!

http://www.justgiving.com/Gisela-Antunes

Raising money for a great cause‏

I'm taking part in the Cancerkin - Hyde Park Walk 2011 on 19/06/2011 to raise money for Royal Free Cancerkin Breast Cancer Trust and I'd really appreciate your support.
As some of you may know, this has a special meaning to me. Last year I was diagnosed with breast cancer and the support I received during treatments was vital. By raising money I hope to help other breast cancer patients like me to get the same amazing support.
Cancerkin is a charity dedicated to providing information, treatment, supportive care and rehabilitation for patients with breast cancer and support for those close to them. Cancerkin offers education and training for health professionals, students and volunteers and undertakes and collaborates in research into breast cancer and benign breast disease.
It's easy to donate online with a credit or debit card - just go to my JustGiving page:
http://www.justgiving.com/Gisela-Antunes
JustGiving sends your donation straight to Royal Free Cancerkin Breast Cancer Trust and automatically reclaims Gift Aid if you're a UK taxpayer, so your donation is worth even more.
I hope you'll join me in supporting Royal Free Cancerkin Breast Cancer Trust.
Your donation is greatly appreciated. Thank you.

4 months after chemo

During the holidays I decided to stop wearing a scarf and show my newly grown hair. I haven't had a haircut yet, this is how it is growing. I can't wait to have enough hair to have a proper haircut. 

Did I do this to myself?

I can’t get over the ‘why me’ phase. Every day I ask myself what could I have done differently. I can’t change the past but maybe I can try to influence my future.

What are the downsides of eating well, exercising more, and reducing stress? None, right? So why don’t we all do that? I always thought I lead a healthy life, but apparently I have exposed my body to some cancer causing chemicals or other factors that made me develop cancer. I will never know what caused my cancer, maybe it was the polluted air in London, the fact that I didn’t manage to have any children (although I tired), or because I took the pill for so many years. Was it because I didn’t eat organic, or because I had a stressful life? Was it because I am tall? A woman? White? Apart from nutrition and fitness, all the rest seems pretty much out of my control. Should I have exercised more, eaten less or healthier? I was never fat, I always exercised, I cook at home and don’t eat processed food, I eat plenty of fruit and vegetables and never had any health problems before. In fact, I never realised how healthy I was, how fit I was and how happy I was, until this happened.

If our body knows how to fight cancer, I am determined to help it with a better diet, exercise, less stress and less exposure to carcinogens. By doing this I will not only feel like I am in control, I will increase my chances of leaving longer cancer free.

Doctors don’t tell patients to exercise more, be thin, eat healthy, avoid carcinogens and reduce stress to build natural defences against cancer. All is focussed on early detection and treatments, not prevention. This is wrong.

I read somewhere that breast cancer incidence has increased by more than 50% over the last 25 years. This is quite alarming because, although treatments have improved significantly and the survival rates have increased, not much seems to have been done to prevent it from happening in the first place.

I don’t think it is random luck (or lack of it!), it is the environment we live in, the modern life-style we lead, that are disrupting our hormone balances. The chemicals we breathe, eat and drink are acting as carcinogens.

Presently my biggest fear is to have recurrent or secondary cancer and I want to make sure I do what I can to stay healthy for the rest of my life but it is very hard to do so when I don’t know what exactly made me have breast cancer in the first place.

Pesticides, plastics, the pill, stress, etc are all hormone disruptors that can mimic the role of oestrogen and stimulate the growth of hormone sensitive cancer (like mine). It hasn’t necessarily been proven that oestrogen can cause breast cancer, but high levels of oestrogen can stimulate the growth of the cancer cells. That is exactly what Tamoxifen is supposed to do: block oestrogen receptors.

Having an oestrogen receptive cancer is in a way good, it means that there is an extra treatment available, Tamoxifen, which is proven to be effective. However, although Tamoxifen may increase my life expectancy, it definitely decreases my quality of life. I have been taking it for about two months now and the side effects are just getting worse and worse. A good night sleep is something I don’t know the meaning of anymore and having menopause symptoms at my age makes me feel old, too old. Having hot flashes during hot weather is just horrible. I have many techniques to make it more bearable, such as having two glasses of ice on my desk at work, that I can hold whenever I feel a hot flash coming; I have a Chillow which I definitely recommend, it helps me cool down during the many night sweats I have each night; I sleep with a very light duvet and the window open when possible, I dress in layers and only cotton and I take sage capsules. Unfortunately I can’t take Black Cohosh, Agnus Castus or any of those herbs, because it may interfere with the Tamoxifen and may increase my oestrogen levels.

Why is our body so complicated?

Call me paranoid, but I started using glass containers instead of plastic, I try to use only BPA free plastic, I rarely eat canned food (apart from the odd bean or tuna can), I use organic beauty products without parabens, I eat organic, I avoid dairy products and red meat, and I eat as much antiangiogenic foods as I can (antiangiogenics stop the growth of tumours and progression of cancers by limiting the formation of new blood vessels). Some examples of these foods are strawberries, blackberries, raspberries, blueberries, oranges, grapefruit, lemons, apples, pineapples, cherries, parsley, garlic, nutmeg, turmeric, tomatoes, pumpkin, green tea, kale and dark chocolate.

I went from not wanting to read anything related to cancer to reading everything I can about it. There’s a lot of contradictory information available, and not enough or inconclusive studies available, this makes it a lot more complicated. What I try to do is to find guidance that makes sense to me, that seems logical and harmless.

But sometimes I think that reducing risks means nothing because I know a lot of people who live under constant stress, smoke, drink, don’t eat anything fresh, organic or unprocessed, are overweight and don’t exercise and never got cancer.

What not to say to a breast cancer patient

In difficult situations I never know what to say to people and very often I can’t find the right words and end up saying empty sentences and maybe even making insensitive remarks. So, I understand that sometimes, although well-meant (or not), people may say the wrong thing.

I’ve made a short list of the things I think people should not say to a cancer patient:

“No one knows when they are going to die. I could be hit by a bus and die tomorrow.” F***! What crosses people’s mind to talk about death to someone with a serious illness? Honestly... Do you know how I feel most of the time? Like if I’ve been hit by a bus, not once, but over and over again. It is true we all die of something at an undetermined date, but being faced with your own mortality after a cancer diagnosis is different.

“So, did the treatments work?” Unfortunately there isn’t a blood or urine test that can confirm that. Cancer can be as small as a single cell and undetectable in a scan. So, let’s see, if I die of cancer it means it didn’t work.

“Fatigue? But you don’t look tired.” I don’t think most people understand what it is like to be uncomfortable in your own body for almost a year now, not being able to sleep for almost five months now, not having energy to do simple things and feeling generally weak.

“You look great for someone who went through what you did.” Or even worse: “You look great, you must be feeling good.” Don’t assume that. Just because I am not crying all the time, I am wearing make-up and colourful clothes, able to laugh and tell some jokes, it doesn’t mean I feel great. I may look good (considering what I’ve been through!), but it feels like crap at times. And how is a cancer patient supposed to look like anyway?

“Look on the bright side, you will get a boob job for free.” First, I was happy the way I was before. Second, have you ever seen reconstructed breasts after a mastectomy? Obviously not. Do you like the way your nipples feel? Well, I wish I could feel mine too. Breast surgeons and plastic surgeons are geniuses and in some cases artists, but breast reconstruction is not the same as breast augmentation. And there's no bright side in loosing part of your body.

“I know how you feel.” Do you really? It’s ok to show sympathy but unless you went through exactly the same, you have no idea what it is like. When I hear this, all I feel is loneliness.

“God has a purpose in all this." "Pray to god." or anything related with god. Don’t assume I am religious. If god exists it is being quite cruel at the moment and I don’t see the purpose of that. I haven’t done anything wrong. If god has a plan, it is a pretty screwed up plan in my view. I prefer to rely on real things like medicine, family and friends. I don’t think people get cancer or any other serious disease for a reason, it is just a consequence of a series of factors.

“You’re so lucky you have so much free time.” Well, let me tell you, if I could choose between working and being sick, I would rather work 60 hours a week.

“My aunt, cousin, sister, brother, uncle, mother, neighbour or whoever died of cancer.” Why are you telling me this? I am scared enough as it is. And save the horror stories about the treatments, recovery and recurrence for some other time.

“Everything is going to be all right.” How can you know that? Even my doctors don’t know that. By saying this, people just make me feel guilty for being worried, sad and afraid.

“You have to stay positive.” Don’t tell me how I should feel. And if I am not positive? Am I disappointing a lot of people? Is positive a synonym of denial, anger, depression, anxiety and panic? No, I don’t think it is and I am sorry to disappoint you by saying that I feel all these as well.

“Your hair will grow back.” Don’t state the obvious. I live in the present not in the future. Have you ever tried feeling attractive and self-confident without hair?

“I love short hair?” Do you really? Then shall we go together to the hairdresser so you can copy my hairstyle?

The hottest April 6 on record

Today was the hottest day of the year and I was lucky enough to be off. I love and need sun. A sunny day is the best anti-depressant I know. Apparently the hottest place in the country, according to the Met Office, was St James’s Park here in London where a temperature of 23.6C was recorded. Not bad for April.
It's a shame I cannot sunbathe, my skin is still too sensitive after chemo and radiotherapy, otherwise I would have been in the sun all day. Sun, please stay!

Can't face it, literally!

Last Friday I had a routine appointment with the breast surgeon. I took the opportunity to complain about my right arm which has been a bit achy and slightly swollen lately. I was afraid it could be lymphoedema but he quickly dismissed my concerns. However, he raised a new one. I have a suspicious looking mole on my back. He took measurements, made some notes and said we would keep an eye on it. Well, he will keep an eye because it’s right in the middle of my back, where even with a mirror I am not able to see it properly. I didn’t really think much about this until now. I decided to do what doctors keep tell me not to, I went to “Dr. Google” for information. Apparently women with breast cancer have a higher risk of developing melanoma. Great, another thing to keep me awake at night! It is most probably just another mole, like any of the hundreds I have, but I have to admit that today I spent some time trying to turn my head back as much as I could in order to see the famous suspicious mole. Completely useless, all I got was a stiff neck and eyeball pain. As a last resort I made S. describe in detail how the mole looks like. He refused to take a picture of it claiming it would only make me even more paranoid. Paranoid, me?!

What makes a good day

Life after cancer treatments

Sometimes I have the impression that some people think that because the treatments are finished (not counting with the hormonal treatment, which in fact also has pretty annoying side effects) and because I normally say that I had cancer (in the past tense), that I am supposed to be positive and back to normal. But having cancer is not like having the flu. When you have the flu, you feel miserably sick but then you recover and get back to normal, without any consequences. With cancer it doesn’t work that way. There are physical, psychological and emotional, financial, social and work related consequences, everything is affected.
Physically, treatments leave behind fatigue, sleeping problems, induced menopause, discomforts caused by surgery and chemo, peripheral neuropathy from chemo, aches and pains, nails and hair loss.
The psychological and emotional effects of cancer and treatments are more complex. I can think of fear, anger, worry, frustration, sadness, anxiety, loss of self-confidence, grief and guilt. With these ones I can deal with, the worst part is being able to find a good balance between uncertainty and hope. I will see my doctors more often than I will see some of my good friends. And each doctor’s appointment triggers a series of emotions that start with fear of recurrence and hopefully end with relief and sense of security. And the emotional consequences are extended to my husband, family and close friends. They too worry and feel anxious.
Financially, being away from work for such a long period has a direct impact on income and having had cancer may also have a long term impact on my career. On top of this, insurances and mortgages will become harder to get.
Socially, I feel very often that people don’t understand me, some people don’t know how to behave towards me, I don’t know how to behave around new people and very often I worry about the changes to my appearance and about what people see when they look at me. I think they don’t see me, but the sick me.
Going back to work requires physical and emotional strength and I really admire those who can work during treatments. I know now that I went back too early. I feel completely overwhelmed, I am way too tired and emotionally weak. I definitely suffer from chemo-brain, I can’t concentrate, or talk and write at the level it is required.
I know that with time I will settle back into my old routines, getting out more, exercising more, and enjoying things in general more. Days are longer and weather is getting better, this helps. I am going to start stepping out at Baker Street station and walk through Regents Park back home.

Hope

For people like me, that had cancer and had to undergo chemotherapy, once treatments are finished all we want is to go on and lead our normal lives. Normal for me a year ago included starting a family, unfortunately chemotherapy, which is in many cases potentially damaging to the ovarian function, has reduced my chances of ever having children to virtually zero. It is cruel and hard to accept, and although infertility is not a life-threatening condition, I find it in a way worse than cancer itself. Before chemotherapy started I did what I could (or what science and medicine offered me) to save some of my eggs, it wasn't as successful as I had hoped and I wish I had read this a year ago: http://www.lifeonice.com/index.php?option=com_content&view=article&id=47&Itemid=27
It is possible to have ovarian tissue frozen and then implanted back once all treatments are finished. It is a new and little-known technique with only a few successful cases, but it sounds promising and I hope it can be developed and used in the future to help women in child bearing age that are diagnosed with cancer and have to deal with infertility.
It has also recently been in the news that new studies have shown that taking Tamoxifen for five years is more effective than taking it for shorter periods of time. It has even been suggested that it should be taken by women at risk of developing breast cancer as a preventive measure. I am more and more convinced that despite the terrible side effects (and I can tell you they are not pleasant at all) I will take it for the full five years. Even if that means that I will be 41 by the time I can even think of having the embryo implanted and try to conceive. There's no point in taking risks, becoming a mother (although with only one embryo I know that my chances of getting pregnant are less than 0,5%) and then falling ill again, it does not sound like a good plan to me.

Working against me

Going back to work has been a lot harder than I thought. I can't concentrate, I feel exhausted, anxious and insecure. The first week was ok, I was acclimatising. The second week was a nightmare, I felt less than the others, observed, slow and incapable of performing. I burst into tears every night and I couldn't even explain exactly why. I was so convinced that going back to work would shut the cancer door and open the normal life door, but things are not that easy, are they? I carry a heavy load on my shoulders everywhere I go and I don't seem to be able to let go. This week I gained courage and I asked to continue working reduced hours for a couple of more weeks. I'm letting myself down, I'm angry and I really wish things were different.
One thing I promised myself when I learned I had cancer was that I wouldn't get a depression. It's bad enough as it is, the last thing I need is to have to deal with a depression. But I can see it coming: lethargy, insomnia, irritability, sadness, crying, unable to have fun, lack of initiative. I can't let that happen, I don't want to look back one day and see wasted time. Today I went to see the psychologist who thinks I am not depressed, just being too hard on myself. She gave me a couple of tasks I have to put in practice during the next week, let's see if I manage to do it. One thing she said stayed on my mind: do what you feel like doing and not what you think you should be doing. Do what gives you pleasure, not what you think you should be doing. The problem is, I don't know anymore what I enjoy doing and most of the times I don't feel like doing anything, talking to anyone or going anywhere. All I want is for things to be like they were before. Nothing else.

Unsettling

Not what I had planned

6:45am: the alarm goes off – Oh no, time to get up already! Don’t feel good, was awake the whole night, have a headache and no energy to move. Snooze.

6:54am: the alarm goes off again – first attempt to get up. Unsuccessful. Snooze.

7:03am: the alarm goes off once again – second attempt. Feeling light-headed. I ask S.: "Do you think I can stay at home today, I don’t feel 100%?" Answer: "Of course, listen to your body and don’t feel guilty." I move closer to S. to cuddle up.

7:15am: feeling guilty I get up and have breakfast. Still not feeling well. Back to bed.

8:00am: up again. I decide I should make an effort. I’m worried my boss and colleagues will think I am lazy. “Are you crazy, your wellbeing comes first!” says S.. I get annoyed but I know he is right. Still, in a spirit of contradiction, I try to shower. Damn it, it’s true, I can’t wet the stitches. So I get even crankier. Finally I tell my boss I won’t make it today.

8:30am: back in bed feeling moody, sad and not well.

10:00am: managed to sleep one hour. Listening to Antena 3 and reading in bed.

I still think I should be in the office, not in bed. So much for wanting to get back to normal. Life sucks!

Bye bye P

It is time to say goodbye to my portacath. It's been with me for six months, it was one of the best things that happened during chemo (it made treatments so much easier) but it is now time to get rid of it. One less thing to bother me and make me feel weird.
Today I am going to have the implantable chest port removed, under general anaesthesia, which makes me feel very nervous I don't know why because it is a simple procedure, that should last no more than half an hour. The fact that I have to fast doesn't help, the surgery is at 3pm, by then I am going to be so hungry and grumpy. It's not even 11am yet and my stomach is already glued to my back! I can see already the sign on my bedroom door saying "Nil by Mouth". Cruel!
Having to go to the hospital, wear a gown, and everything else that comes with a surgery, makes me feel vulnerable and reminds me of cancer. One thing that makes me feel reassured is that it's going to be done by my breast surgeon, who I know well by now and who I like and trust a lot.
I hope I wake up feeling well tomorrow and able to go to work. What an odd week, I just started and I am already off sick again!

A new start

I had such a warm welcome at work yesterday. Everyone came to say hello, give me a hug and a smile. We even had cake! It was great. I was afraid it would be awkward and that I would feel uncomfortable but after a couple of hours it felt like if I've never been away. There are two new faces in the team but apart from that not much seems to have changed. I need to do lots of reading to catch up but I am motivated and pretty sure I will feel at home in no time.

Organised as I am, I planned in advance how I would answer eventual questions. I understand people are curious but I don’t want to talk too much about it, give too many details or give vague answers that will lead to speculation. I feel good and that is what people need to know.
I am happy I work with nice people.

Hi ho, hi ho, it's off to work I go

Tomorrow is the big day, I am returning to work after being off sick for many many months. I feel like if it is my first job, or a bit like if I am going to be the new girl in class. But at the same time I am super excited and can't wait to go back.
I am worried that I will not be able to do my work anymore, I know that I can't concentrate as before and that I am still very tired. And probably a lot of things have changed since I left. It's going to be a challenge, more like a whole new beginning.
Not everyone is aware of the reason why I was off sick for so long and I hope I am not bombarded with questions, I am not sure if I feel like talking about it over and over again. Once they see me it will be clear that I had chemo, I am still wearing a scarf which says enough I believe.
Today after spending a couple of hours in the sun reading, I went for a massage, a facial and a manicure (to hide these horrible yellowish-brown decrepit nails!). I feel great. I needed to have a relaxed day.

Changing focus

Lately I’ve been experiencing what feels like the worst PMS of my life. One minute I think everyone around me is great, the next minute I realise how annoying people can be and I don’t just get irritated, I scare people by turning blue and blowing up, not without first saying  a couple of nasty things. Even I know this is irrational, but it is totally out of my control, really, it is. I have to first count until ten before opening my mouth these days. It feels at times as if my body and mind are not my own. The worse part of the treatments have ended, the prognosis is good, spring is coming (soon I hope!) and life goes on. An action plan is needed. So, let’s be rational:
Problem: tired body and exhausted mind, crazy hormones, loss of self-esteem, pains and aches
Cause: cancer and treatments
Solution: change focus, rest, exercise, eat well, have fun and take pain killers
After almost nine months of focussing on cancer and my health, I am now ready to change focus and start living a more normal life. It is going to be hard, at least for now because there are still so many reminders - aches and pains, annoyances, my physical appearance, worries, doctor’s appointments, etc - that don’t let me forget what I’ve been through, but I want to stop thinking of myself as a cancer patient and enjoy life as before. “As before” and “normal life” will now have to be readjusted to a new reality. Nothing will be like before, I know, but I have to find a new “normal” and get on with life.