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