2011 is going to be a better year

My body is detoxing and trying to readjust to a life without the chemo drugs. I wonder how long it will take to get back to normal, a month, six months, a year? My digestive tract is still a bit of a mess, my nails are very sore and yellow (I wonder if they are going to fall off or not and if yes, does it hurt? How will it look like? How long does it take to grow back?), my skin is so dry it seems it is going to crack at any moment, I have lost all my hair, except for 10 eyebrows and about 5 eyelashes (yes, I counted them!), which I am sure will abandon me in the coming days, making me look even more weird and sickish. I am so aware of the way I look now, I wish mirrors didn’t exist. Between chemo sessions some baby hair always grows on my head, weak, colourless and very scarce hair which looks nothing like my old hair. Now I look in the mirror every day hoping to see my dark strong hair growing back. I want to go back to work in January or February and I would prefer to go back without a scarf covering my head. I am tired beyond believe and so out of shape that yesterday I could hardly walk up the mountain to enjoy the view over Moledo. My muscles ache and my joints like to complain as well. I feel like an old lady.

During these days in Portugal I have been eating a lot more and haven’t been following my diet. I feel guilty and I must get back on the right track. But it is irresistible, there’re so many nice things, so many temptations, I just can’t resist. Of course I then suffer the consequences, like having indigestions, tummy pain, feeling tired and without energy, and sleeping badly.

I desperately need to start exercising regularly, but I just learned that I can’t swim during radiotherapy because the chloride may irritate the skin. I can’t practice any sport that makes me sweat too much either for the same reason. I can’t play badminton because my arm still hurts (the cording comes back from time to time) so I will try yoga, pilates or any other quiet sport.

Emotionally I feel good. I am a bit apprehensive about starting radiotherapy, fear of the unknown I guess, and anxious about reconstruction, with another surgery, another stay in the hospital. I can’t wait for all this to be over.

As soon as I get home I will hang the 2011 calendar in the kitchen and remove the 2010 one. The good thing about having a bad year is knowing that the following year can only be better.

What I had hoped for 2010 didn’t happen. I wanted to have a baby but instead I got cancer. Unfortunately the opposite doesn’t work, if I wish for cancer I will still not get a baby. So all I am going to wish for is that I have a calm year, actually I wouldn’t mind having a boring year, an eventless year.

I hope 2011 will be a good year not just for me, but for all of you as well. HAPPY NEW YEAR!

Winter in London vs. Winter in Espinho

 When we left London our street looked like this:  

And on Christmas day Espinho looked like this, clear blue sky:

Radiotherapy

Last Thursday I had my first appointment with the oncologist to discuss the radiotherapy treatment. I really liked this doctor, she was very communicative and gave me all the information I needed, even before I had the chance to ask anything.

I will be having 25 fractions, every day from Monday to Friday. No start date has been set yet but it should be somewhere during the second week of January.

The radiotherapy planning will start in the first week of January. I’ll be having a CT scan and three little dots tattooed on my chest which will help position the machine and make sure the same area is treated every time. With the help of a simulator the radiographer will collect data which will allow him find the correct position for the treatment and ensure the right area is treated every time. The machine has to be positioned as accurately as possible to avoid treating healthy tissue. This doesn’t sound like something that can be done in 5 minutes so I guess I will have to lie very still for quite some time. I hope I can listen to some music or take a nap.

Radiotherapy is in itself painless, but there are some side effects such as lethargy and skin burns. All I know is that it is much lighter than chemotherapy and that is what I wanted to hear.

In the meantime I have a couple of weeks off to enjoy and relax. No more hospitals, clinics, nurses, doctors, serious conversations and decisions to make until next year.

I had enough

Lately I’ve been feeling a bit like a human needle cushion. I never really had any problems with needles, I don’t get impressed, dizzy or feel much pain, but I got to a point now where I cannot stand them anymore. This year I’ve had more needles inserted in my body than in my whole life.

It all began with the blood tests, biopsies and MRI’s (yes, there’s a needle involved here too, an injection of a contrast agent into the bloodstream). Then there were the surgeries and anaesthesias, five this year alone. And let’s not forget the daily injections of fertility drugs, actually twice a day, I had to administer for two weeks. Chemo, of course, was the last drop, with countless blood tests, injections and intravenous treatments. During chemo my poor veins refused to cooperate any longer, my left arm felt like a junky’s arm, and I am so glad I have a port now, it makes things so much easier, faster and painless. In fact, the port looks a bit like an actual needle cushion and it can be used for drawing blood and administering drugs. Although it is very practical, it means some extra needle pricks as it requires some maintenance. It has to be flushed regularly to prevent clotting and occlusion.

Now on top of having blood drawn almost every week, I started having acupuncture to try to relieve some of the side effects of chemotherapy. Great, more needles! I don't know what crossed my mind, I should instead stay quietly at home healing and resting.

I don’t have a needle phobia yet but I don’t wish to see a needle, syringe, blood, infusion bag or catheter in the next couple of weeks (I would like to say months but I know it is unrealistic!).

Mastectomy fashion

If shopping for a wig made me feel depressed, imagine how I felt after trying to buy a bikini!

Last week I gained courage and went to a shop specialized in mastectomy wear to buy a bikini. I was in a good mood and feeling confident, but once I left the shop my self esteem was pretty much destroyed.

I was very disappointed by the choice available, most swimwear seem to be designed for 50 plus ladies with big breasts and no taste. Young and small-breasted women also get cancer, it's not fair! Only one of the swimsuits was the right size for me, which meant choosing the style and pattern was out of the question. And finding a bikini was even worse, they all looked like out of fashion tankinis. Feeling frustrated but trying to keep a positive attitude, I decided to get the not so pretty swimsuit, at least I can go swimming now.

Then it came the second disappointment: the swim prosthesis. I knew already from previous experience that finding the right prosthesis is complicated. After my surgery, the hospital nurses had to run around town to find one the right size and shape for me and I can't thank them enough for that, because since then I haven't been able to find any other prosthesis that fits me so well. In fact, in one of my attempts to buy a new prosthesis I realized that most women have huge boobs (or that I have tinny boobs!). All the prosthesis were too big for me and the only one I could actually wear had been originally made for lumpectomies, not mastectomies. Again, not fair!

So, for the swimsuit I needed a swim prosthesis and once again I had to hear: "you're petit, not sure if we have anything your size". I could eat the sales woman alive! I am sure I am not the only cup A breast cancer patient in London!

I left the shop with the not so pretty swimsuit, not so perfect prosthesis and an incredible desire to eat chocolate.

But I won't give up, when the spring collection arrives I will go shopping again. I am sure I will be able to find something I like and feel confident wearing.

Having a mastectomy is traumatic and not being able to feel normal only makes it worse.

6 down.. and done with chemo. Hurray!

The day yesterday went by so quickly I hardly had time to enjoy the fact that it was my last chemotherapy treatment. S. and I arrived at the clinic early, I sat on my favourite chair and the nurses started the treatment right after. My friend J., with her always cheerful smile, came to keep us company and she brought me a box of Green & Blacks chocolates that I so desperately needed and really enjoyed (there goes my diet!). By noon I was done. S. and I had lunch and went to meet the oncologist at 1pm. We discussed the next steps: hormone therapy (tamoxifen) and radiotherapy, she went through the side effects and how to manage them. If all goes according to plan, next week I will meet the radiologist and start taking the tamoxifen.

As it was my last chemo and the nurses and all other staff have been so amazing, I wanted to give them something. One of the nurses had mentioned before that they always get bonbons and cakes, so I wanted to bring something different. I thought of an organic fruit basket, at least it would be healthy, but healthy is not fun. Instead I decided to make the Dutch Christmas cookies (speculaas and boterkoekjes) my mother has always made at home for Christmas. I spent two afternoons in the kitchen but it was worth it, they looked and tasted good. I hope they all enjoyed it too.

I brought a "souvenir" with me, the arm band I wore at the clinic.

From the clinic I also brought the usual goodie bag. Can't wait to stop filling my poor body with all these medicines.

On my first chemo day, before treatment started my mother took me a picture. Yesterday, before my last chemo treatment started S. also took me a picture (already with the needle and the catheter sticking out of my blouse!).

26 August 2010
The old me: still with thick brown hair, full eyebrows and eyelashes, healthy colour and energetic.



10 December 2010
The chemo me: no hair, barely any eyebrows and eyelashes
and in need of some sun and rest.

I will only consider chemotherapy as finished once the side effects disappear, at least the most unpleasant and debilitating ones. Today, apart from not being able to sleep and feeling slightly nauseous, I am ok. Experience tells me that the worse will hit me on the 3rd day of the cycle.

Chemotherapy is horrible but I guess it is better than having cancer. Chemotherapy made me feel weak, exhausted beyond believe, nauseous, dizzy, emotionally drained, made me lose my hair, ruined my nails, gave me an itchy sore scalp, my skin got dry, gave me mouth ulcers and dry mouth, gave me watery eyes and a bleeding nose, gave me an annoying noise and a throbbing vein in my ear, gave me unpleasant headaches, gave me brown spots on my skin, gave me phlebitis, gave me terrible bone pain, muscle pain and joint pain, made me lose my concentration, gave me insomnias, made me lose my appetite, gave me heartburn, colic and indigestion, made me have severe constipation and severe diarrhoea, weakened my immune system and most probably damaged my ovaries leaving me infertile. Did I forget anything? However, even though the list is long, it is better than cancer!

My blood counts have been falling with each cycle. My white blood cell count and neutrophil count are quite low at the moment. I just hope they don't get any lower and that I don't get any infections or other complications. On the 19th of Dec. we are supposed to fly to Portugal to spend Christmas and New Year's there. And I really want to go, I've been looking forward to getting away and being with my family and friends for months.

I can't wait to go back to a more normal life, to my old life if possible. My head is full of plans for 2011, starting with a relaxed holiday somewhere, going to the gym more regularly, meeting people without being afraid of feeling sick just hours before leaving home, going back to work, being able to concentrate on anything for more than one minute and enjoying life in general.

I will be staring into the mirror every day checking for any signs of hair growth. Once I get enough hair to cover my scalp, I will stop wearing scarves and hats. I am curious if it will grow weak, curly and grey or just like my old dark brown, straight, strong hair. Can't wait to have my first haircut.

Today is exactly six months since my diagnosis. Not sure yet how I feel about it. Tired, I guess.

When you’re living with cancer, what makes a good day? *

Exactly what I needed to cheer me up before getting nauseous (nauseous from the chemo not the chocolates!).

* Phrase stolen from Macmillan's Good Day campaign: "When you're living with cancer, the difference between a good day and a bad day can often come down to really small things." http://www.macmillan.org.uk/GetInvolved/Brand/TakeAction.aspx

My last chemo eve

Tomorrow I have my last chemotherapy treatment. Where did the last few months go?

I know I should be happy but no, I am scared. It took me a while to understand why I am feeling scared instead of relieved, I realized I am afraid cancer is not gone and knowing that if it comes back it will not be curable freaks me out (secondary/metastatic breast cancer is not curable). I know I have great chances of being already cancer free and that is how I see things most of the time, but my subconscious is worried about suffering and dying.  Yep, I am only human and I don't want to suffer more and die young.
There's more battles in this war, radiotherapy will start soon and maybe that will make me feel safe again. And there's hormone therapy too and other things that can be done to prevent cancer from coming back like maintaining a healthy lifestyle.

In this post I also want to thank everyone who has been there for me and who go out of their way to encourage me and show their support. A special mention to my sweet husband, to my fantastic sisters and their lovely men, to the best mother in the world, mine, to my friends J., S. and J., to my cousin J., to my aunt A., to the family friend L. and to all my Banif ex-colleagues. I feel touched and emotional. And I am amazed how good people around me are. People with a good heart. If I forgot anyone important, please remember that chemo brain exists!.

My rule number one on how to cope with cancer is: ensure you have a good support network around you.

Ah, I knew I would forget someone: all hospital and clinic staff also deserve a mention.

When you’re living with cancer, what makes a good day? *

Little treats can make life so much sweeter.

A nice way to relax before going to bed.

* Phrase stolen from Macmillan's Good Day campaign: "When you're living with cancer, the difference between a good day and a bad day can often come down to really small things." http://www.macmillan.org.uk/GetInvolved/Brand/TakeAction.aspx 

Help, my glass is almost empty!

I haven’t been much in the mood to write lately, mainly because I haven’t been feeling too well but also because there’s not much to report. In short, my sister C. was here for two weeks which was great and despite the bone pain and the snow we managed to do some nice things together, my internet connexion was down for almost a week and made me realise how much I need it, I had high temperature and got very worried (it ended up being nothing to worry about), I went to see the surgeon and all seems to be well, I fell down the stairs (I hate snow!) and got the biggest bruise I have ever seen in my life, it is the most painful bruise I have ever had too (not to mention the embarrassment of falling in front of strangers) and considering my platelet count, I wonder how long it will take to heal.

I am having a hard time with chemo. I try to ignore the side effects and have a life as normal as possible but the truth is I feel sick all the time and I am exhausted. I put all my energy into not having a meltdown, staying strong and focussing on simple daily activities. All I want is to feel good for at least one day. Since the last chemo session I have been feeling pretty bad, both physically and emotionally. The bone pain didn’t really go away this time, I have trouble sleeping, my whole digestive system is torturing me, my skin is full of brown spots, my eyes are red and tired (I barely have any eyelashes now, my eyes are irritated and tears fall down my face non-stop), my nails look miserable and are sore (are they going to fall?) and the noise in my ear is not getting any better. I hate the way I look and even though people keep telling me I don’t look that bad, I have difficulties recognizing my face in the mirror, it makes me very sad. I am exhausted and can’t sleep at night. I am worried all the time and there’s nothing that can help me relax. My body changed so much in the past six months and I am in such bad shape it makes me realise how healthy I was before.

This Friday I have my last chemo session but somehow I don’t feel happy about it. It’s hard to explain but having chemotherapy gives me the feeling I am fighting cancer. Once chemo is over I am afraid that if one stupid cancer cell managed to survive this horrible treatment, it will start multiplying and form a tumour somewhere else. Without chemotherapy it is like if I am not fighting anymore. I make an effort not to think about it but the fear of recurrence is always there. It will always be there. Every time I have an appointment with the surgeon or the oncologist I get extremely anxious. I am always afraid they will find something and have bad news to give me. When the surgeon checks my chest, tummy, glands and back I can’t stop thinking he might find something that shouldn’t be there. It is scary. What I find scary as well is starting a new treatment and changing my daily routine. Soon I will start radiotherapy and hormone therapy which is supposed to be a lot easier than chemotherapy. Looking on the bright side, my hair will start growing back, I will feel less sick, I might be able to go back to work, my short-term memory and ability to concentrate will return, my taste buds will go back to normal and most important of all I will stop poisoning my poor tired body. I dream with a detox holiday after all this is over. I want to clean my body from all these drugs and get back in shape. Maybe who knows even run a marathon! Hummm, now that I think of it, running a marathon is probably as traumatic as chemotherapy, I never liked running.

I look forward to the end of all this. I can’t wait to hear the words “you are cancer free”. Unfortunately for the next five years I will be in remission, not cancer free. A long wait still...

As I said, chemo is hard and I am glad it will soon be over. But it is very demoralising to know that until Friday morning I will be feeling relatively ok and then 12 hours later I will be feeling miserable, sick and in pain again. Until recently I thought I had a high pain threshold but since I experienced bone pain I think differently. For the first time I had to use the term unbearable pain and ask for stronger painkillers. Long live Tramadol!

All I can do lately is whine. I cry more and I smile less. Being a cancer patient is not easy but being around one is not a piece of cake either. I feel sorry for my husband, family and close friends, but I really appreciate all the support they have been giving me. Without them all this would be a lot harder.

My first acupuncture treatment

I have always wanted to try acupuncture and was really pleased when my health insurance confirmed I was covered in full.

With each chemotherapy session I have been feeling worse and worse and I am running out of energy and patience to deal with the side effects. I love massages, it really relaxes me and makes me feel good but unfortunately a good massage in a decent place is quite expensive and it is not covered by the insurance. It is a shame massages are not considered complementary therapy. I was looking for something that could help improve my general wellbeing and after some recommendations and some consideration, I’ve decided to make my first appointment with an acupuncturist. The first appointment was last Thursday and I will be going there once a week.

I don’t expect miracles but I am hoping it will help lessen the annoying noise in my ear caused by the throbbing vein and relieve the nausea, headaches, pain, insomnia and fatigue. As I don’t have high expectations, any benefit will be a very positive outcome. In fact, right after the first session, the throbbing vein was no longer there. It was back the next day but even a short-term benefit is welcome.

The session started with a questionnaire about my medical condition, diet, emotional state and sleeping pattern. She checked my pulse and the colour and coating of my tongue and explained me how the treatment was going to be like. The atmosphere was very relaxing and friendly. I then laid down and she inserted needles on my feet, ankles and lower legs, hands, wrists and lower arms and head. It didn’t hurt at all, I just felt a light tingling. She left the room for about five to ten minutes, leaving me to relax. And it really was very relaxing to lay there in silence. When she returned she gave me a pressure point massage on my neck and shoulders, which was simply amazing. I loved it and I believe it helped me feeling relaxed.

I don’t know much about acupuncture and I think I am going to buy a book about it to understand better how it works.

During the acupuncture session I had fun imagining a voodoo doll not of myself but of cancer, almost like if it was possible to personify cancer, turning it into a doll and sticking some needles into it, not to treat but to kill.

I know acupuncture will not end the pain, nausea, fatigue, etc but I liked the way I felt afterwards: relaxed. Feeling relaxed is a luxury for me. Since this cancer era started, only in very few occasions I felt relaxed and good. If stress in a risk factor for cancer, I think we can say that cancer itself is cancerigenous and since I have never had so much stress in my life like now, I am exposing myself to an undesired risk. If I can learn how to deal with stress and start relaxing more, I am sure it will only do me good.