Sometimes I have the impression that some people think that because the treatments are finished (not counting with the hormonal treatment, which in fact also has pretty annoying side effects) and because I normally say that I had cancer (in the past tense), that I am supposed to be positive and back to normal. But having cancer is not like having the flu. When you have the flu, you feel miserably sick but then you recover and get back to normal, without any consequences. With cancer it doesn’t work that way. There are physical, psychological and emotional, financial, social and work related consequences, everything is affected.
Physically, treatments leave behind fatigue, sleeping problems, induced menopause, discomforts caused by surgery and chemo, peripheral neuropathy from chemo, aches and pains, nails and hair loss.
The psychological and emotional effects of cancer and treatments are more complex. I can think of fear, anger, worry, frustration, sadness, anxiety, loss of self-confidence, grief and guilt. With these ones I can deal with, the worst part is being able to find a good balance between uncertainty and hope. I will see my doctors more often than I will see some of my good friends. And each doctor’s appointment triggers a series of emotions that start with fear of recurrence and hopefully end with relief and sense of security. And the emotional consequences are extended to my husband, family and close friends. They too worry and feel anxious.
Financially, being away from work for such a long period has a direct impact on income and having had cancer may also have a long term impact on my career. On top of this, insurances and mortgages will become harder to get.
Socially, I feel very often that people don’t understand me, some people don’t know how to behave towards me, I don’t know how to behave around new people and very often I worry about the changes to my appearance and about what people see when they look at me. I think they don’t see me, but the sick me.
Going back to work requires physical and emotional strength and I really admire those who can work during treatments. I know now that I went back too early. I feel completely overwhelmed, I am way too tired and emotionally weak. I definitely suffer from chemo-brain, I can’t concentrate, or talk and write at the level it is required.
I know that with time I will settle back into my old routines, getting out more, exercising more, and enjoying things in general more. Days are longer and weather is getting better, this helps. I am going to start stepping out at Baker Street station and walk through Regents Park back home.
31 March 2011
29 March 2011
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.
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.
26 March 2011
La valise en carton
What were you doing ten years ago today? You probably can't remember, but I can. I was leaving Portugal, moving abroad, something I always wanted to do. I also remember that I had dinner at the Cafe Bern in Nieuwmarkt in Amsterdam, and that I ate "kaasfondue" sitting at the counter with my cousin A. Good old days. Amsterdam is a great city and I had a wonderful time there. I have so many good memories.
But the turning point was not moving to Holland but moving out of Portugal. I packed my suitcase, took a plane and there I went, on my own, the start of a new adventure. And my life has been an adventure since. It was one of the best decisions of my life. Of course I miss my family, the sun, the sea and the beach, my friends, and the good Portuguese habits. But aren't all Portuguese supposed to live in eternal "saudade"?
É o vento que me leva.
O vento lusitano.
É este sopro humano
Universal
Que enfuna a inquietação de Portugal.
É esta fúria de loucura mansa
Que tudo alcança
Sem alcançar.
Que vai de céu em céu,
De mar em mar,
Até nunca chegar.
E esta tentação de me encontrar
Mais rico de amargura
Nas pausas da ventura
De me procurar...
Miguel Torga, Diário XII
But the turning point was not moving to Holland but moving out of Portugal. I packed my suitcase, took a plane and there I went, on my own, the start of a new adventure. And my life has been an adventure since. It was one of the best decisions of my life. Of course I miss my family, the sun, the sea and the beach, my friends, and the good Portuguese habits. But aren't all Portuguese supposed to live in eternal "saudade"?
É o vento que me leva.
O vento lusitano.
É este sopro humano
Universal
Que enfuna a inquietação de Portugal.
É esta fúria de loucura mansa
Que tudo alcança
Sem alcançar.
Que vai de céu em céu,
De mar em mar,
Até nunca chegar.
E esta tentação de me encontrar
Mais rico de amargura
Nas pausas da ventura
De me procurar...
Miguel Torga, Diário XII
24 March 2011
Working against me
Going back to work has been a lot harder than I thought. I can't concentrate, I feel exhausted, anxious and insecure. The first week was ok, I was acclimatising. The second week was a nightmare, I felt less than the others, observed, slow and incapable of performing. I burst into tears every night and I couldn't even explain exactly why. I was so convinced that going back to work would shut the cancer door and open the normal life door, but things are not that easy, are they? I carry a heavy load on my shoulders everywhere I go and I don't seem to be able to let go. This week I gained courage and I asked to continue working reduced hours for a couple of more weeks. I'm letting myself down, I'm angry and I really wish things were different.
One thing I promised myself when I learned I had cancer was that I wouldn't get a depression. It's bad enough as it is, the last thing I need is to have to deal with a depression. But I can see it coming: lethargy, insomnia, irritability, sadness, crying, unable to have fun, lack of initiative. I can't let that happen, I don't want to look back one day and see wasted time. Today I went to see the psychologist who thinks I am not depressed, just being too hard on myself. She gave me a couple of tasks I have to put in practice during the next week, let's see if I manage to do it. One thing she said stayed on my mind: do what you feel like doing and not what you think you should be doing. Do what gives you pleasure, not what you think you should be doing. The problem is, I don't know anymore what I enjoy doing and most of the times I don't feel like doing anything, talking to anyone or going anywhere. All I want is for things to be like they were before. Nothing else.
One thing I promised myself when I learned I had cancer was that I wouldn't get a depression. It's bad enough as it is, the last thing I need is to have to deal with a depression. But I can see it coming: lethargy, insomnia, irritability, sadness, crying, unable to have fun, lack of initiative. I can't let that happen, I don't want to look back one day and see wasted time. Today I went to see the psychologist who thinks I am not depressed, just being too hard on myself. She gave me a couple of tasks I have to put in practice during the next week, let's see if I manage to do it. One thing she said stayed on my mind: do what you feel like doing and not what you think you should be doing. Do what gives you pleasure, not what you think you should be doing. The problem is, I don't know anymore what I enjoy doing and most of the times I don't feel like doing anything, talking to anyone or going anywhere. All I want is for things to be like they were before. Nothing else.
23 March 2011
Back pain
After almost 20 years of chronic back pain, it looks like I have finally found something that actually provides some relief. I got so used to having back pain it bacame part of my life, but the other day, when the pain was at its worse, I mentioned it to my acupuncturist, and she decided to dedicate that session to treating the pain. I was pleasantly surprised by the effect, it is not a long lasting effect though, probably just a couple of days and I am aware that it will not cure the cause of the pain but I will certainly keep on going there. She has a client for life now!
Spring
The house has been taken over by spiders, bees and lady birds.
S. doesn't allow me to vacuum or smash them with a slipper, instead he tries to catch them with a glass and then puts them in the garden. Very correct! In the meantime we've been living with a big creepy hairy spider on the ceiling of our bedroom and one in the bathroom (not to mention the ones that come and go), a family of lady birds and a couple of noisy bumblebees. These were the first signs of spring.
It was a fantastic spring day today: bright sun, blue sky and warm. I was off today so I went to meet J. for lunch. We sat by the canal, absorbing the sun while eating a sandwich. It was super nice. Nothing like a bit of sun to cheer me up.
The day didn't start so well today, I lost a fingernail which was a big shock because I thought all my fingernails would survive, but I was wrong. If I look carefully I can see that at least two more nails are going to fall off soon. I had never seen a finger without a nail... it looks weird,... pink. Not everyone can say they have touched their scalp and nail bed, right? Well, I can. So, what does a 36 year old woman do when she looses a nail? She calls her mother to do a sniffie sniffie. So grown up! Sometimes I wonder if my mother called her mother for every little thing.
S. doesn't allow me to vacuum or smash them with a slipper, instead he tries to catch them with a glass and then puts them in the garden. Very correct! In the meantime we've been living with a big creepy hairy spider on the ceiling of our bedroom and one in the bathroom (not to mention the ones that come and go), a family of lady birds and a couple of noisy bumblebees. These were the first signs of spring.
It was a fantastic spring day today: bright sun, blue sky and warm. I was off today so I went to meet J. for lunch. We sat by the canal, absorbing the sun while eating a sandwich. It was super nice. Nothing like a bit of sun to cheer me up.
The day didn't start so well today, I lost a fingernail which was a big shock because I thought all my fingernails would survive, but I was wrong. If I look carefully I can see that at least two more nails are going to fall off soon. I had never seen a finger without a nail... it looks weird,... pink. Not everyone can say they have touched their scalp and nail bed, right? Well, I can. So, what does a 36 year old woman do when she looses a nail? She calls her mother to do a sniffie sniffie. So grown up! Sometimes I wonder if my mother called her mother for every little thing.
20 March 2011
10 March 2011
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!
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!
09 March 2011
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!
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!
A new start
I had such a warm welcome at work yesterday. Everyone came to say hello, give me a hug and a smile. We even had cake! It was great. I was afraid it would be awkward and that I would feel uncomfortable but after a couple of hours it felt like if I've never been away. There are two new faces in the team but apart from that not much seems to have changed. I need to do lots of reading to catch up but I am motivated and pretty sure I will feel at home in no time.
Organised as I am, I planned in advance how I would answer eventual questions. I understand people are curious but I don’t want to talk too much about it, give too many details or give vague answers that will lead to speculation. I feel good and that is what people need to know.
I am happy I work with nice people.
Organised as I am, I planned in advance how I would answer eventual questions. I understand people are curious but I don’t want to talk too much about it, give too many details or give vague answers that will lead to speculation. I feel good and that is what people need to know.
I am happy I work with nice people.
07 March 2011
Hi ho, hi ho, it's off to work I go
Tomorrow is the big day, I am returning to work after being off sick for many many months. I feel like if it is my first job, or a bit like if I am going to be the new girl in class. But at the same time I am super excited and can't wait to go back.
I am worried that I will not be able to do my work anymore, I know that I can't concentrate as before and that I am still very tired. And probably a lot of things have changed since I left. It's going to be a challenge, more like a whole new beginning.
Not everyone is aware of the reason why I was off sick for so long and I hope I am not bombarded with questions, I am not sure if I feel like talking about it over and over again. Once they see me it will be clear that I had chemo, I am still wearing a scarf which says enough I believe.
Today after spending a couple of hours in the sun reading, I went for a massage, a facial and a manicure (to hide these horrible yellowish-brown decrepit nails!). I feel great. I needed to have a relaxed day.
I am worried that I will not be able to do my work anymore, I know that I can't concentrate as before and that I am still very tired. And probably a lot of things have changed since I left. It's going to be a challenge, more like a whole new beginning.
Not everyone is aware of the reason why I was off sick for so long and I hope I am not bombarded with questions, I am not sure if I feel like talking about it over and over again. Once they see me it will be clear that I had chemo, I am still wearing a scarf which says enough I believe.
Today after spending a couple of hours in the sun reading, I went for a massage, a facial and a manicure (to hide these horrible yellowish-brown decrepit nails!). I feel great. I needed to have a relaxed day.
03 March 2011
Changing focus
Lately I’ve been experiencing what feels like the worst PMS of my life. One minute I think everyone around me is great, the next minute I realise how annoying people can be and I don’t just get irritated, I scare people by turning blue and blowing up, not without first saying a couple of nasty things. Even I know this is irrational, but it is totally out of my control, really, it is. I have to first count until ten before opening my mouth these days. It feels at times as if my body and mind are not my own. The worse part of the treatments have ended, the prognosis is good, spring is coming (soon I hope!) and life goes on. An action plan is needed. So, let’s be rational:
Problem: tired body and exhausted mind, crazy hormones, loss of self-esteem, pains and aches
Cause: cancer and treatments
Solution: change focus, rest, exercise, eat well, have fun and take pain killers
After almost nine months of focussing on cancer and my health, I am now ready to change focus and start living a more normal life. It is going to be hard, at least for now because there are still so many reminders - aches and pains, annoyances, my physical appearance, worries, doctor’s appointments, etc - that don’t let me forget what I’ve been through, but I want to stop thinking of myself as a cancer patient and enjoy life as before. “As before” and “normal life” will now have to be readjusted to a new reality. Nothing will be like before, I know, but I have to find a new “normal” and get on with life.
Problem: tired body and exhausted mind, crazy hormones, loss of self-esteem, pains and aches
Cause: cancer and treatments
Solution: change focus, rest, exercise, eat well, have fun and take pain killers
After almost nine months of focussing on cancer and my health, I am now ready to change focus and start living a more normal life. It is going to be hard, at least for now because there are still so many reminders - aches and pains, annoyances, my physical appearance, worries, doctor’s appointments, etc - that don’t let me forget what I’ve been through, but I want to stop thinking of myself as a cancer patient and enjoy life as before. “As before” and “normal life” will now have to be readjusted to a new reality. Nothing will be like before, I know, but I have to find a new “normal” and get on with life.
02 March 2011
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.
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.
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