Going through chemotherapy is anything but glamorous

Using my oncologist’s words, going through chemotherapy is anything but glamorous. After five rounds of chemotherapy, I feel like there’s very little of the old me left. I have no hair and only about 10 eyelashes and 20 eyebrows left. I have deep rings and new wrinkles around my eyes, pale and dry skin, no cheeks and grey lips. Currently there’s no make-up, hat or scarf that can hide that I am a cancer patient. I have a constant and incontrollable running nose and occasional nose bleeds, usually in the most inconvenient moments. My eyes are always wet with tears running down my face. I am always tired and complaining about something: excruciating bone pain, belly pain, headaches or of being unwell or indisposed. I can’t eat this, I can’t eat that. I am forgetful and repetitive.

Yesterday while washing my hands in the bathroom, I looked up and saw a reflection in the mirror, I looked down again but had to look up once more to confirm that the thin pale tired face I saw was actually me. Chemotherapy is a cruel treatment. It can so easily destroy one’s self-esteem. It’s not just the length of the treatment and the unpleasant, painful and debilitating side effects that are emotionally draining, it’s also having to accept that the image you have of yourself is not the image you see reflected in the mirror anymore.

5 down, 1 more to go

In general it was a chemo session like all the others. The highlight was my friend J.’s visit, which I loved and really appreciated, although my state of stress and anxiety probably didn’t make me the best company in the world yesterday. I wasn’t very chatty. I don’t know why I let myself get so down every time I have chemo. I should be stronger than that. It must be knowing what comes with it: pain, nausea, discomfort, fatigue, fear, worries, hair loss, nose bleeds, headaches, etc.

I normally have chemo on Thursdays, which is a quiet day at the Chemotherapy Day Unit, but this week I had it on Friday, apparently the busiest day there. It was noisy with all the machines beeping at the same time and people constantly walking around and chatting. It made me really tired. I was glad when it was over. As I was feeling relieved to be out of there and still feeling strong, S. and I decided to go for a scone at Le Pain Quotidien and to a furniture shop where we bought a lamp before heading home.

Today I feel ok, just very tired.

One thing is bothering me though, the blood tests show that I am slightly anaemic and I was advised to eat more red meat and other food rich in iron. I hope the levels don’t get any lower otherwise I will be one step closer to getting a blood transfusion. Not really what I need right now.

Have to go, there’s a delicious iron-rich dinner prepared by my beloved husband waiting for me.

Chemo day

Here I am, feeling miserable and sorry for myself. I hardly slept and feel very anxious.

The only thing I can think of is swear words and expressions, in Portuguese which is still my favourite language to swear. I am actually quite amazed at the length of the list of swear words I could put together, but to avoid having to affix a warning such as “Parental Advisory, Explicit Content” I will instead post this: @#*~~ÄßhNDML~Ú!$*@”.

One thing I have to mention is that I had a lovely day yesterday. It was so nice I even forgot about the fact that yesterday the nurse could not find a cooperative vein for the pre-chemo tests and only after four attempts and fiddling around with the needdle for a couple of minutes, which by the way didn't hurt but made me turn pale almost green, she decided to draw the blood sample from the portacath. Wise decision. My veins collapsed completely. As I was stressing a little bit too much these last few days, S. took the day off yesterday and we spent the day together doing only nice stuff: we had a delicious lunch, went to a nice exhibition, had a very tasty dinner and then went to a nice modern dance performance at Sadler's Wells with J., who had the great idea of inviting us to join her. Merci à tous les deux.

Il était une fois... la vie

Do you remember this cartoon? I used to watch it when I was little and I loved it.
I hope Professor Globo and the Police Force are ready for the hard work that is coming... chemo is already this Friday :(

Quantitative Easing Explained by Furry Animals

This is quite a good lesson in the American economic crisis.
A bit monotone but some good humour in here... worth watching until the end.

Fela!

Fela Kuti was an interesting and controversial man. He was a multi-instrumentalist musician, composer, dancer, founder of Afro-beat, protest singer, revolutionary, political activist, polygamist and dope smoker. He founded a commune called the Kalakuta Republic and declared independence from the repressive Nigerian state, and began his own political party: MOP - Movement of the People. For his outspoken criticism of the government and military he was harassed, beaten, tortured and jailed. But above all he was a great musician.

It was with this in mind that I went to see the show Fela!, a Broadway musical. I don’t normally like musicals and this one was no exception. The story was lost and hard to follow and the music was not as powerful as it should have been. The choreography and dancers were great and I liked the fact that the stage was made to look like his Shrine, with the actors dancing on stage and through the aisles, as the stage extended throughout the seats. The actor playing Fela tried to give a dance lesson but honestly, the majority of the audience was white and white men’s hips cannot move like the African booties. I was disappointed because I thought I was going to enjoy an amazing musical event and it ended up being a boring very American show.

Hopefully next week’s concert of Fela Kuti’s son, Femi Kuti, will be a lot better.

Buddha Collapsed Out of Shame

A film by Hana Makhmalbaf who was only 19 years old when she wrote and directed it (Iran 2007). It is an unsentimental film with some disturbing scenes about a little girl determined to go to school. She is heartbreaking. When the film ended I was not sure if I was full of hope or desperate. Worth seeing.

Do I really need chemo?

Several people have asked me why I need chemotherapy and radiotherapy if there are no signs that the cancer has spread. The main reason is because breast cancer can recur at any time, it can come back as a local recurrence (in the treated breast or near the mastectomy scar) or as a distant recurrence somewhere else in the body. The most common sites of recurrence are the lymph nodes, bones, liver or lungs. There are several indicators that can predict recurrence and it is based on these indicators that the type of treatment after surgery is determined. In my case, although my lymph nodes appear to be clear and the tumour was oestrogen receptor positive (which tend to respond well to hormone therapy), the tumour was big and it was a grade 3 tumour (abnormal and faster growing cells) which indicates a greater the chance of recurrence. So, considering all this, the potential benefits of chemotherapy and radiotherapy outweighs its horrible side effects.

I like to believe that all cancer cells have been removed with surgery, but I want to make sure I live healthy for as long possible and that is why I agreed to have chemotherapy, radiotherapy and hormone therapy.

Same same but different




May this year, before diagnosis

  

Yesteday, halfway through chemo











The Way Home

Written and directed by Jeong-hyang Lee (South Korea, 2002), it is a touching story about a spoiled city boy who is sent off to the rural mountains where his grandmother lives. The story, although predictable, is sweet, as well as funny and sad at the same time.

Did you go to the gym today?

Yes, I finally beat my laziness, and went to the gym! Last time I had been to the gym was in August, before chemo started. I know it is important to exercise at least a little, even when I am unwell but apart from my daily walks I haven’t been doing much. Even most of the housework has been delegated to the cleaning lady and to my husband. And it was thanks to S. that I went to the gym yesterday. He has been reminding me daily that exercising would do me good, I know he is right so I stopped using tiredness and sickness as an excuse and went. The oncologist also mentioned that some light exercise could reduce fatigue and so do all brochures about cancer and chemotherapy. I have to admit it made me feel good and I am definitely going on a regular basis now. I promise. I am not going to lift weights or cycle like crazy, but some 15 minutes on the cross trainer, 15 minutes on the bicycle, some arm and leg exercises, stretching and that’s it.

I am so out of shape, I feel like if all my muscles are gone. And I get breathless so quickly. After chemo and radiotherapy are finished I am going to get a personal trainer to help me get back in shape. I always exercised and it always made me feel good. I want to feel good again.

Distant Dreams - Nitin Sawhney featuring Roxanne Tataei

Medical choices

Choosing a specialist in a foreign country is difficult. Before being diagnosed with cancer I knew very little about the UK health system but wanted to make sure I made the right choices for me. I wanted to choose a good specialist and a good hospital. I did some research online and when I came across the profile of my current breast surgeon/surgical oncologist I knew I wanted to be his patient. Going to the doctor has always been something I disliked, very often I don’t feel comfortable so having someone I trusted was essential.

He is one of the pioneers in sentinel lymph node biopsy and the first surgeon in the UK to perform endoscopic mastectomies. I like innovative and skilled people. An endoscopic mastectomy is performed by making a small opening around the axilla through which surgery on the armpit can also be performed (sentinel lymph node biopsy). A small camera is then placed through this opening and the operation is performed under direct vision. The breast tissue is removed via a scar around the areola of the breast. The advantage of this procedure is that there is minimal scarring on the breast with a potentially better cosmetic outcome. However, this procedure is only suitable for patients who have early breast cancer and who have small size breasts (cup A or B), like me. This type of surgery not only leaves minimal scarring but also spares the breast tissue and the nipple.

It took me some time to decide on the type of surgery, but once I did, I had no doubts it was what I wanted. I was very happy with the results and I wish more women could have access to the same type of surgery. Unfortunately in my case I needed a second surgery to clear the margins which meant removing the nipple. After the first surgery, the lab tests done to the tissue removed raised doubts whether the margins were clear. Almost without hesitating I agreed with the doctor to have a second surgery to clear the margins. The original tumour was too close to the nipple and because I have small breasts and not much fat, it was a safer option to remove it.

I chose not to have immediate reconstruction because I knew I was going to have radiotherapy, which may affect the skin and the implant. Sometimes I consider not having reconstruction at all. I feel good about the way I look now and I am afraid that the reconstruction will not meet my expectations. There is a chance I will need to remove the other breast because of the type of cancer I have and the increased chances of having recurrent cancer, and in that case I will definitely have reconstruction. I have finally the chance to upgrade my mosquito bites into Bombay mangoes and even so I am pretty sure I will go for the same model, to make me feel like the old me. But that is something to consider next year: first chemotherapy, then radiotherapy, then eventually another mastectomy and reconstruction. One thing at the time.

Before I was diagnosed, I hardly knew anything about cancer. To start with I had no idea that it could affect my fertility and that I would be under treatments for at least 5 years. Another important medical decision we had to make was whether to have fertility treatment to allow us to freeze some embryos or not. Following my surgeon suggestion and after doing some research, I chose an oncologist who is very active in clinical trials and has a particular interest in young women with breast cancer and fertility related issues. She had no objection to having one round of fertility treatment, so after long consideration and a lot of tears, we decided to go ahead. I am aware that my chances of ever becoming a biological mother are extremely slim, I will most likely never have children, but I want to feel like I am doing all I can to leave as many doors open as possible. It is hard to explain why I want to have a family, but I think it would make me happy and that is enough for me.

With chemotherapy I wasn’t given much of a choice. I could have refused treatment but that only crossed my mind after I realised how hard the treatment is. And even when I am at my lowest wishing I didn’t have to have chemo ever again, I know it is for my own good.

Making choices in difficult situations is not always easy, specially when you don’t feel you are in control of the situation.

Unluckily lucky

In this cancer odyssey, I have been very lucky. I know it sounds strange to say this, but after the big bad news “you have cancer” all other news have been good. I recovered very well from both surgeries. The sentinel lymph node biopsy was negative which indicates a chance of 95% that the remaining lymph nodes in the axilla are also cancer free. Although I suffer a bit with the side effects of the chemotherapy, so far nothing serious has affected me and I always recover well between sessions. I know the journey has not ended yet, but I feel lucky.

Undesired, by Walter Astrada

In India, all women must confront the cultural pressure to bear a son. The consequences of this preference is a disregard for the lives of women and girls. From birth until death they face a constant threat of violence. See the project at http://mediastorm.com/publication/undesired

Ailments

Day eight of this cycle and I am still spending most of the day in bed. I feel so weak I can’t perform any of the normal daily activities without getting breathless and exhausted. Now I understand what fatigue really is. The worst thing is that the tiredness doesn’t go away even if I rest the whole day. Luckily the bone and joint pain is almost gone and I am left only with some muscle pain. It is interesting how pain can influence my emotional state, from Sunday to Tuesday, when the pain was almost unbearable, I thought it was never going to end and I was convinced I was getting worse. I felt very down and pessimistic. But, thanks to my selective memory, a great quality in this business, I can’t remember anymore how it felt like to be in pain.

It isn’t just the fatigue that is bothering me. Chemotherapy is destroying my whole digestive system: from a sore mouth (I have huge mouth ulcers that make eating quite a challenge) to nausea, constipation followed by diarrhoea, heartburn, indigestion, loss of appetite, colic and sensitivity to smells and tastes, everything is contributing to my general feeling of being unwell.

On top of this, I lost my nostrils’ hair which is very annoying. I never really appreciated how useful they were. Now I have a constant runny nose and a sore throat.

I didn’t want to mention it because it makes me really sad, but my eyebrows and eyelashes are getting thinner and thinner. Panic level: really really high!

And, to put a cherry on top of my cake, I have a verruca on my right foot which is taking advantage of my weakened immune system to grow. Just great!

Afro Celt Sound System - Persistence of Memory