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.

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!

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.

3 down, 3 more to go

Said like this it sounds like I am half way, but considering the time it takes me to recover from each session, I feel I still have a long way to go.

This session was the last of the FEC regimen. Next I will have 3 sessions of T (Taxotere).

Thursday’s session was in many ways different from the previous ones. To start with I had to be at The Harley Street Clinic at 7am to have the port implanted in my chest. It is a simple procedure, but added to the stress of having a chemo session on that same day, it made me very stressed and anxious.

I had the choice of having general or local anaesthesia. The idea of being able to hear and see part of what is going on in the operating room, made me go for the local anaesthesia. Also because the recovery is much faster. I think I fell asleep for a while during the procedure, but I still remember quite a lot. The most exciting moment was when the fire alarm rang, no one even moved and just continued with their work. I asked what the normal procedure in these cases was. Before evacuating, they first wait to be informed where the fire is located and to be instructed to leave the operating room and when possible they do so, carrying the patient with them obviously. Luckily it was just someone’s toast that got a bit burnt in the kitchen. As the lifts were not working for a while, one of the nurses kept me company until he could take me back to my room, on the 4th floor. Once again, I only have good things to say about all medical staff I have encountered so far: excellent dedicated people.

Back in the room I found two sleepy heads, S. and my mother, poor creatures, going through all this with me. The room was great, spacious and new. I had the chemo in the room and not at the day unit as before. It was more quiet and I had more privacy which after even a small procedure is very pleasant.

About one hour after the surgery I got dressed with my own clothes, covered my naked head and waited for the chemo nurse. Having a port is actually very practical, there was no need to look for a cooperative vein, and the drugs can be administered a lot faster. Half way the treatment I was already starting to feel a bit funny. But it all went well.

The port is hardly visible, just a discrete bump on my chest. I have two small scars, one on the chest (though which the port was put in, under the skin) and one on the neck (through which the catheter was inserted in the vein). I hope they will disappear with time, I feel I am collecting scars!

Around 3.30pm I was discharged and went home feeling reasonably ok. At the end of the afternoon I felt horribly nauseous and didn’t manage to eat anything of the delicious meal S. had prepared. Before 9pm I was already in bed.

Friday was a good day, I woke up early and feeling pretty good.

J.’s visits are always pleasant but this last one made my taste buds happy. She brought bouchons form the Cup Cake Company. Very nice! Even with a funny tummy I enjoyed it. Afterwards, to get some sun and make my legs move a bit, we went for a long walk. Friday was a good day.

Today I feel as bad as I normally do after each chemo: headache, nausea, throbbing ear vein, no appetite, some pain and discomfort and excessively tired.

This time I got a lot more anti-sickness pills than the previous times and I just hope they work, because I really hate feeling like this.

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.

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.