30 September 2010

Sign the Science is Vital petition

Because I believe research is absolutely crucial, I am backing this campaign. You can find out more about the campaign’s objectives on their website: http://scienceisvital.org.uk/aboutus/

You can sign the petition too:

http://scienceisvital.org.uk/sign-the-petition/

If you have trouble signing, please try a different browser (Google Chrome worked for me) or email petition@scienceisvital.org.uk with your details.

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Linha de Apoio

29 September 2010

Look Good... Feel Better

I just got home from a “Look Good... Feel Better” session. I have to admit it exceeded all my expectations. I wasn’t very convinced about it at first, I thought it would be a bunch of silly women talking about make-up. But no, I was very wrong, it was a group of very nice and cheerful cancer patients who, just like me, want to feel and look as normal as possible.

For someone like me who hardly ever wears make-up and doesn’t even have lipstick or eyeliner these workshops are of great value. Beauty consultants taught us how to choose the right skin products and make-up according to our skin type and showed us how to put on make-up. I loved it and I definitely feel better now. I am a bit disappointed there is no perfect way to draw natural looking eyebrows, but I learned some very useful tricks. I still have my eyebrows and eyelashes, but for how long I don’t know. Without eyebrows I will lose my facial expression and it will be even a bigger giveaway that I am going through chemotherapy.

Going through cancer treatments must be the most difficult times in our lives and knowing we don’t look good is demoralising and it definitely lowers our self-esteem. I don’t like looking in the mirror and seeing a pale-greyish-bald head looking back at me.

I will for sure wear more make-up and more often too.

On top of the free skin care and make-up lesson we all received a gift bag with lots good quality products in it.

It is a wonderful initiative that has for sure a positive effect on cancer patients.

Look Good... Feel Better is a charity set up by the Cosmetic Toiletry and Perfumery Association that helps women cancer patients to manage the visible side effects of cancer treatments. It holds free skincare and make-up workshops with volunteer experts. http://www.lookgoodfeelbetter.co.uk/site/flash/pdvdpreview.swf

27 September 2010

Wear it Pink

Chemical phlebitis

It is one more of those things that can happen with chemotherapy. I got phlebitis from the chemo drugs.

My wrist and arm veins got an irritation caused by the Epirubicin, one of the chemo drugs. The phlebitis is causing an annoying pain and my arm veins look brownish-red and swollen, so much that I am going to the clinic to have it checked.

25 September 2010

Dr Juice

The best buy of my "cancer era" was a juice extractor which I use every day to prepare the most delicious juices. My favourite juice is made with carrots, apples, celery, beetroot, lemon and ginger. It is called Dr Juice because it contains vitamins A, B1, B2, B3, B6, C, E and K, beta-carotene, calcium, iron, magnesium, manganese, phosphorus, potassium, sodium, zinc, folic acid, malic acid, soluble fibre, natural sugars, natural fats, organic natural water and an amazing amount of anti-oxidants. http://www.juicemaster.com/recipes/juices/dr-juice

24 September 2010

Is it possible to prevent breast cancer?

It makes me feel angry that no one can tell me the causes of breast cancer and why is it so common. I know cancer is caused by the mutations in DNA that can make normal breast cells become cancer, but what leads to these mutations is unknown.

Despite the increasing number of breast cancer cases and the increasing number in younger women, why aren’t we able to prevent this awful disease? And why haven’t the treatments improved? Why can’t the chemotherapy drugs distinguish between cancer cells and normal cells? Why do the treatments and not the disease itself have to cause the pain and debilitating effects?

Breast cancer must be the most “advertised” form of cancer, there are breast cancer campaigns happening all the time all over the place, everyone recognises the pink ribbon, there’s plenty of awareness, but is it just making people aware of its existence? Or trying to prevent it?

Early detection improves the chances of finding the cancer in a curable stage and improves the chances of a successful treatment and I know how important that is because I was diagnosed at an early stage.

But if we all know that regular exercise, healthy diet, healthy weight, avoiding alcohol, not smoking and limiting exposure to carcinogenic substances can reduce the risk of breast cancer, why isn’t this made the central message of every campaign?

Lifestyles can be changed and improved and there are a lot of things each one of us can do towards that, but I am still not convinced that just this will guarantee a cancer free life.

Details

I was diagnosed with multifocal invasive lobular breast cancer, stage 2B, grade 3, ER-positive, HER2-negative. Trust me, it sounds worse than it is. My prognosis is good :)
Only 10% of diagnosed breast cancers are invasive lobular carcinoma and it is more common in women between 45 and 55 years old. Again, I don’t fit in so why me?

23 September 2010

22 September 2010

Superfluous items

Shampoo, conditioner, brush, blowdryer, hair bands, clips, elastics,...
And at risk of becoming superfluous: mascara, tweezers, hair lightning cream, body wax,...

21 September 2010

You’re spoiling me!

Everyone around me has been so amazing I will really miss it once all this is over.

I am aware that my cancer hasn’t just affected me, it has affected my family, friends and colleagues in some way too. And everybody has been exceptional in giving me emotional and practical support.

I am happy :)

19 September 2010

2 down, 4 more to go

Thursday I had the second chemo session which left me pretty much unable to do anything. I felt so sick I couldn’t move or eat. At night I got so worried I asked S. to call the chemo nurse to ask if feeling that nauseous was normal:
“Do you have fever? - No.
Do you have sharp pain in any part of your body? - Apart from a throbbing headache and a very upset stomach, no.
Do you have signs of extravasation of the drugs in the cannula site? - No.
Do you have difficulties breathing? - I’m breathless but I can breathe.
Take more anti-sickness tablets and try to relax and sleep.”
Well, I was hoping to hear something more along the lines of: we have here exactly what you need, take this and you will feel great again. But no, there was no magical solution. I was left wondering if after so many pills I was still feeling sick, taking more pills wouldn’t just upset my stomach even more. With some effort I managed to relax and fall asleep. I know stress plays a big role in these situations, and maybe I was panicking, but I never felt that sick before and was hoping there was something that could be done.

Friday I woke up feeling slightly better and managed to go to the appointment with the oncologist. She thinks I am doing remarkably well which is always nice to hear. Later I was again hit by extreme exhaustion and a general feeling of unwellness.

Saturday was a day to forget: got out of bed to lie down on the sofa and from the sofa to the sun bed in the garden and then back to the sofa again. Today I feel pretty much the same, with up and downs which makes me believe I am slowly getting better. Sometimes I think this is more than I can handle and I feel that it’s emotionally taking its toll.

But not all is bad. After the chemo on Thursday and because my hair situation was only getting worse, S. shaved my head. What a relieve! It looks so much better. It is less than 1cm long and it looks really cool (if we ignore the odd bald patches!). I discovered I have a nice head shape, normal ears and now instead of seeing a horrible hair situation in the mirror, I see a nice shaped head with a nice face. Having my head shaved was the happiest moment of this week.

15 September 2010

One day to go

Tomorrow morning I have my second chemotherapy session and I do not look forward to that. From what I understand the side effects can be cumulative, they can increase in intensity and number. Last time, during the first week, I was constantly nauseous, tired and lethargic, had a sore mouth, lost my appetite and had terrible headaches. The second week was better, I was feeling very tired, with absolutely no energy, but able to go out and have some relaxed fun. During the third week I started feeling normal and eating well, just very anxious and sleeping a bit more than usual. The only thing that ruined this week was the hair loss and having a very sore scalp. I don’t think I will be able to wear the cold cap this time, not only I have lost a significant amount of hair but my scalp is so sore I can’t even touch it.

Today I am going to the clinic for some pre-chemo blood tests. After that I plan to go to Le Pain Quotidian in Marylebone High Street and enjoy some delicious bread. Bread has been excluded from my diet but I allow myself a couple of naughty sins a week.

14 September 2010

A Flashback: the surgery

I went to the surgery quite calm, waited patiently for the doctor to come and draw all kind of marks on me, for the nurses to make all necessary tests and for the anaesthetist to ask me all kind of questions. My sister E. and S. were with me, they held my hand and made me smile while waiting. It was extremely hot that day and I couldn’t eat or drink. I was hungry, thirsty, tired and anxious. And of course slightly grumpy. I had to put on a hospital gown, deposable panties and white compression stockings, I looked very sexy! And there I went, walking along the hospital corridors, with the Macmillan nurse trying to cheer me up. E. and S. accompanied me all the way to the grown floor almost to the operation theatre and waved at me through the door window. I liked that.

Before the surgery I had a radioactive dye injected into my breast, near the tumour, in order to identify the sentinel lymph node, which is the first lymph node to receive lymphatic drainage from the tumour and the lymph node the cancer is more likely to spread to. My sentinel node was in the chest, above the breast, and was removed to be sent to pathology. During surgery the surgeon did a test to identify possible cancer cells and decide whether or not to remove all axillary lymph nodes. In my case it was not needed, my lymph nodes are clear.

The operation theatre was full of people: several nurses, the surgeon and his assistant, the anaesthetist and his assistant, a trainee nurse and the Macmillan nurse who stayed there chatting with me until I fell asleep. Back in my room, when I fully woke up from the anaesthesia I saw three familiar faces and felt very happy and safe: E., S. and my old friend J.. With support like this life is so much easier. That night I was feeling so vulnerable that I asked E. and S. to stay with me until I fell asleep.

I accepted the changes quite well, a lot better than I thought I would. The only time I cried was due to exhaustion, anxiety, discomfort, having everyone around me telling me what to do and realising I was unable to control my own time and life.

I chose one of the best surgeons I could find and knew I was going to be fine. I chose to have an endoscopic (keyhole) mastectomy in which the breast tissue is removed through a small scar in the breast. I was very happy with the results and didn’t feel disfigured at all. There are certain tops and t-shirts I cannot wear because it shows that there is something missing on my chest, but most of the clothes look as good as before.

Although I never felt pain, the recovery was hard and unpleasant. I had drains for five days after surgery, had to sleep always in the same position, couldn’t sleep more than one or two hours in a row, couldn’t move my arm and couldn’t bathe on my own. Everywhere I went I had to carry the drainage tubes and bag, which was funny because since the first day I enjoyed going to the hospital gardens for walks, to get some fresh air and sun. And there was I, in my pyjama carrying my disgusting drainage bag with bloody tubes sticking out from under my top.

The hospital staff was very caring, always had the right words at the right time, helped me with everything and made sure I was going home feeling as good as when I went in. And I did, almost!

I try not to think about the big picture but to focus on each step of this fight, I try making decisions aware of the risks, weigh the options and choose the best for me. I have been receiving so much support I will never be able to thank people enough. I hope they are all aware how important it is for me to know so many people are sending me positive vibrations.

13 September 2010

I wish it wasn't happening

Before chemotherapy started my oncologist warned me I was going to lose my hair. 90% chances of losing my hair, she said. Optimist as always I thought I would fall in the 10% that do not lose their hair. I couldn’t be more wrong. This weekend it started falling out and today it is a mess, hair absolutely everywhere. I have so much hair that although it is falling non-stop for three days I still have a full head of hair. Very thin and flat, true, but still enough to cover my head. Not so sure how I will look tomorrow, at this speed I might as well just shave it all off. I think I will wait for J. to come over tomorrow and ask her to help me get rid of what is left.

The oncologist also told me it would be a good idea to get a wig before chemo started so I went to some wig shops and I tried several styles: natural and synthetic, dark brown and light brown, long and short, but it feels fake and I do not feel like myself with a wig on. I decided then I would not buy a wig and would wear scarves and hats instead. I got some nice scarves and thought I was ready to wear them but now, the idea of not having any hair and having to cover my head is so horrible I just can’t look at myself in the mirror with a scarf on.

To make things worse, S. had to travel this week and he is not here to give his lovely hugs and kisses, to tell me how beautiful I still look and to help me hide my disastrous hair situation with scarves.

Luckily my mother is here and that prevents me from panicking.

Yes, I cried this morning because I felt so miserable and unhappy. It is harder than I though.

Cancer is a bitch and losing my hair just makes it worse.

11 September 2010

Today is a sad day for me

My hair started falling out. After showering today I noticed the shower drain was clogged with hair and the bathroom floor was covered with hair all over. Hair everywhere! I just hope it falls out gradually instead of in clumps. And I hope it falls while I am at home and not outside in a restaurant or museum. And I hope this is just hair thinning and not total hair loss. I really really really don’t want to lose my hair.

09 September 2010

Being tall

I know it is a pointless exercise but I want to understand why I got cancer and what I should have done differently to prevent it.

One of the advices I got from the Macmillan nurse was “do not Google breast cancer because you will find a lot of unreliable information”. Of course I did look it up on the internet and I still do. Lately I’ve been reading about the causes of cancer. The amount of rubbish is amazing but sometimes I come across interesting information. Such as:

“If you are taller than average, you are more likely to develop breast cancer than someone who is shorter than average. This may be due to interactions between genes, nutrition and hormones, but the reason is not fully understood.” From NHS Choices website

Well, that is something I could not have done differently: tall mother + tall father = tall daughters!

One thing I also learned is that there is a lot more research done on how to treat cancer than on what causes cancer and how to prevent it. My opinion is that it must be more profitable for the pharmaceutical companies to sell drugs to treat cancer than invest in research to prevent cancer. It makes me very angry.

Lifestyle is for sure a risk factor, but I cannot completely avoid breathing polluted air, eating fruit and vegetables full of pesticides, eat meat and dairy products full of hormones and consume all kind of products full of chemicals.

I eat more organic food now, drink soya and goat’s milk, avoid meat, eat loads of fruit and vegetable rich in anti-oxidants, do not eat processed food, avoid refined sugar and try to use more natural skin products. I know there are still a lot of things I can change, but will that actually help?

Fatigue

“Fatigue (also called exhaustion, lethargy, languidness, languor, lassitude, and listlessness) is a state of awareness describing a range of afflictions, usually associated with physical and/or mental weakness, though varying from a general state of lethargy to a specific work-induced burning sensation within one's muscles. Physical fatigue is the inability to continue functioning at the level of one's normal abilities. It is ubiquitous in everyday life, but usually becomes particularly noticeable during heavy exercise. Mental fatigue, on the other hand, rather manifests in somnolence (sleepiness). Fatigue is considered a symptom, as opposed to a medical sign, because it is reported by the patient instead of being observed by others.”      From Wikipedia

08 September 2010

A flashback: cording

After the second surgery, and as a result of having some lymph glands removed from my armpit, I developed cording, which is not only painful but very annoying because it limited (a lot) my arm movement. It felt like having a very tight cord running from the axilla towards the hand, pulling my arm down, making it very stiff. The tissue was so tight it was visible to the eye, under my arm, exactly like a stretched cord. When I complained to the surgeon, he referred me to a physiotherapist who massaged my arm and stretched the cords until I regained full arm movement. It took several weeks, but I can now finally move my arm normally and without pain. I still can’t lift heavy weights and I have to be careful not to get infections in this arm, but the improvement is so big I feel like new.

06 September 2010

Side effects

The side effects I am experiencing are quite mild, but all together rather unpleasant.
Before the chemo when the nurse was going through all possible side effects and how to manage them I started panicking and felt like crying. It sounded horrible and the only thing I could think was: what am I doing here? Why do I have to put myself through this? Fortunately I am one of the lucky ones, unless the side effects get worse after the next session.
The list of possible side effects is long and in some degree I am experiencing them all:
Reduced immunity (so far no infections)
Bruising and bleeding (no bleeding luckily)
Anaemia
Nausea
Tiredness (I should say fatigue or exhaustion)
Hair loss (none up until today and hopefully none what so ever until the end)
Sore mouth
Taste changes
Irritation of the bladder
Loss of appetite
Skin changes
Nail changes
Throbbing ear pain
Heartburn
Headaches
Damage to heart (I hope none)
Infertility (very likely but hard to know yet)
Constipation and diarrhoea (not at the same time obviously!)
Bone pain

Brave as a tiger, strong as an ox

My blood counts are normal. It makes me happy to know I am healthy.
I feel “fresca que nem uma alface”, “rija que nem um pero” (not going to translate, it doesn’t really work in English!).
I am ready for the next session, give me more!
If it wasn’t for this annoying cancer, I could say I am a healthy person. Up until now that’s what I used to say. Not anymore!

05 September 2010

More tests

Tomorrow, which is day 12 of the first chemo cycle, I am returning to the Harley Street Clinic for a blood test to check my blood counts (red and white blood cells and platelets). If the counts are too low I may need a blood transfusion and possibly to delay the next chemo session. I’ve been following a very healthy diet, going for walks every day and I feel relatively good - although I admit I look a bit pale and feel very tired – so, fingers crossed, the results will show I am not anaemic and the treatment can continue as scheduled.

04 September 2010

Worries

I am completely obsessed about my hair and I am constantly checking if it started falling out. It is so not me! I am normally very relaxed about my looks and up until recently I could accept the idea of going bald quite well. But now, my level of panic is increasing and I cannot stop thinking about it.
I bought silk pillowcases, wash my hair very gently with ph neutral shampoo, don’t blow dry it and don’t comb it (which is easy now that is so short).
So far it seems to be ok, but every time I see a single hair I get nervous.
My whole physical appearance is changing: my skin is turning grey with some brown patches, I have dark rings under the eyes, I am losing weight and my lips are not pink anymore. In general I don’t feel too bad, I expected worse, but I guess my poor body is fighting a big battle right now.