Hope

For people like me, that had cancer and had to undergo chemotherapy, once treatments are finished all we want is to go on and lead our normal lives. Normal for me a year ago included starting a family, unfortunately chemotherapy, which is in many cases potentially damaging to the ovarian function, has reduced my chances of ever having children to virtually zero. It is cruel and hard to accept, and although infertility is not a life-threatening condition, I find it in a way worse than cancer itself. Before chemotherapy started I did what I could (or what science and medicine offered me) to save some of my eggs, it wasn't as successful as I had hoped and I wish I had read this a year ago: http://www.lifeonice.com/index.php?option=com_content&view=article&id=47&Itemid=27
It is possible to have ovarian tissue frozen and then implanted back once all treatments are finished. It is a new and little-known technique with only a few successful cases, but it sounds promising and I hope it can be developed and used in the future to help women in child bearing age that are diagnosed with cancer and have to deal with infertility.
It has also recently been in the news that new studies have shown that taking Tamoxifen for five years is more effective than taking it for shorter periods of time. It has even been suggested that it should be taken by women at risk of developing breast cancer as a preventive measure. I am more and more convinced that despite the terrible side effects (and I can tell you they are not pleasant at all) I will take it for the full five years. Even if that means that I will be 41 by the time I can even think of having the embryo implanted and try to conceive. There's no point in taking risks, becoming a mother (although with only one embryo I know that my chances of getting pregnant are less than 0,5%) and then falling ill again, it does not sound like a good plan to me.

Having fun

Yesterday I had the last of the monthly appointments with my oncologist. The next appointment will be in six months, hurray! Not that I don’t like her, but I am just so happy to free myself from all these medical appointments.
According to her I am well: the leg pain is likely to be remains of the chemotherapy induced bone pain, not having hair yet is unusual but can happen (the more I stress about it the less it will grow!), my horrible looking nails are slowly getting better, my skin and scars look great (as great as a scar and burnt skin can look like!), the hot flashes are getting milder (or I am getting used to them!), my ovaries are still not working (but there’s still hope!) and my energy levels will increase with time. At the end of the consultation she told me: “now go and have fun, enjoy life”.
Have fun. Sounds scary. I am not sure I know how to have fun anymore. Does it mean I have to relax now? Huummm, hard thing to do, I tell you.
The first step should be to stop staring into the mirror counting every single hair I see. It was easier to be bald during chemotherapy, I was so concentrated in keeping my food down that not having hair became secondary. Now that my face is round again, my eyes shine and my cheeks have some colour, not having hair became an obsession.
Today I saw a baby with less hair than me, when this thought crossed my mind “Ah! He has less hair than I do!” I had to laugh. Silly me, competing with a baby!
To be fair, I had some fun during these months, I can think of many occasions when I was relaxed and enjoying. I did a lot of things that make me happy and not all was bad.
But I do feel some kind of pressure to be happy now. Several people have asked me if I plan to do something special, radical, different or challenging. What people forget is that last year was all of that already and all I want now is peace. I actually just want normality, a routine that doesn’t include hospitals. No, I don’t feel the need to climb the Kilimanjaro, kayak the Mekong or meditate in India.

Some days are better than others

Today I am having a bad day. Maybe it’s because of the rain and grey sky, maybe not. I woke up feeling sad, with a knot in my throat, hating everything about my sick body. I hate the way I look, the fact that I always feel so tired and the constant discomfort caused by all kind of small annoying things like having very sensitive sore nails both in my hands and feet, having pain in both arms, either because of the phlebitis or the cording, having some digestive problems, being forgetful and confused at times, and having hot flashes and night sweats, a subject I have avoided writing about in here. For about two months now I have been having menopause symptoms, one of my most feared side effects of chemotherapy. My ovaries stopped working, maybe not permanently, that is what I am hoping for. I feel I am losing my femininity: lost a breast, lost all my hair, look tired and old, will most likely never become a mother and will never breast feed. I know some things are temporary like the hair loss and that the most important is to be alive and well. People can tell me this over and over again but I can’t get used to the idea that I am not the healthy person I thought I was before all this cancer thing happened. I want to live until I am 90 (or more!), healthy, happy and elegant. With all these worries I am going to get wrinkled, grey and turn into a grumpy old lady.

The problem with cancer is that there is no cure. Doctors remove the tumour and subject you to heavy treatments but there’s no guarantee they got rid of all cancer cells. I will have doctor’s appointments for the rest of my life. This week I asked my surgeon “Is my prognosis good?” to which he answered “yes, your prognosis is good but as you know no one has a crystal ball.” I guess I have to learn to live with it.

Now back to reality. I am going to the kitchen now, to make a chocolate cake for my sweet husband, it’s his birthday tomorrow. Nothing like baking while listening to music to cheer me up.

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!).

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.

Science 1 - Religion 0

Robert Edwards was on Monday awarded the 2010 Nobel Prize for medicine, in recognition of his work on in vitro fertilisation which revolutionised efforts to tackle infertility around the world.

Now more than ever I think it is great news.

However, it didn’t surprise me at all that the Vatican immediately criticised the decision to award him the prize claiming his work had created a market for human eggs and created problems of embryos being frozen.

What is surprising is that this statement came from an outdated institution that believes in immaculate conception!

One better than none

Only one egg was fertilised with success and is ready for freezing. One tiny little embryo will be waiting for me when I get an all clear from the doctors. All it takes is one, so I will stay optimist and will hope for the best. Science is amazing, there's a little me stored in a frozen tank!

Harvesting day

As chemotherapy and hormone therapy are most likely to cause infertility, after long discussions with doctors and aware of the risks involved, I’ve decided to go through IVF treatment and to have some embryos frozen. After two weeks of daily injections (that I had to give to myself, and the first injection took me almost 15 minutes to give!), today I went for egg collection. Disappointingly, from the 7 follicles shown in the scan, only two contained mature eggs, of good enough quality to create embryos. This means the chances of ever having a biological child are very very slim. Mother Nature hasn’t been very generous with me lately. But the way I see it, better two than none, so I will keep my fingers crossed and hope that the embryologist manages to fertilise them both successfully. Tomorrow afternoon I will know how the fertilisation went.