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!
Showing posts with label Implantable port. Show all posts
Showing posts with label Implantable port. Show all posts
10 March 2011
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!
17 February 2011
Top 10 news of my week
1. The last few remaining eyebrows fell out but the next day I woke up with a vigorous bush of new eyebrows growing. Fantastic! It’s still less than a millimetre long, but it looks great. I miss my dark thick eyebrows.
2. I lost all eyelashes some time ago and just like my eyebrows, the eyelashes are growing strong, very uneven and very slow, but they are there.
3. Ten weeks after the last chemo, the hair on my head is still very weak, scarce and ugly, but it seems to be growing a bit everywhere now. I’m not jumping of happiness yet but I stopped panicking, there’s hope!
4. After a long, stressful and frustrating search, I finally found a really nice bikini, it is pretty and it makes me look perfectly “normal”. It doesn’t cover the chest port, the bump stands out a bit, but I can live with that. I can’t wait to go on holidays now.
5. I started exercising with a personal trainer who has been helping me regain strength in my arms, correct posture, and build some muscle. It’s great and I feel very motivated. I am aware that it will take several months before I recover completely but I am on the right path.
6. J. started working this week and I miss her company already. I've been so lucky to have here, she's been my guardian angel.
7. Tomorrow is my last radiotherapy session. The end. Time to celebrate. And to celebrate, recharge and get some miminhos from my family, Saturday I am going to Portugal. My mother’s sofa is the best place in the world to rest, nap and be lazy. After Portugal S. and I are going to pamper ourselves in a spa.
8. According to my acupuncturist my Qi is imbalanced (I’m not surprised, I actually think everything about my body is deficient at the moment), and to balance my Qi and help me sleep better I started taking some Chinese herbs.
9. I’ve been eating like a pig and I’m putting on weight faster than I lost during chemo. Urgent action required, bald whales are not attractive!
10. I am preparing myself to get back to work. It’s been eight months and I wonder if I still remember where my desk is...
2. I lost all eyelashes some time ago and just like my eyebrows, the eyelashes are growing strong, very uneven and very slow, but they are there.
3. Ten weeks after the last chemo, the hair on my head is still very weak, scarce and ugly, but it seems to be growing a bit everywhere now. I’m not jumping of happiness yet but I stopped panicking, there’s hope!
4. After a long, stressful and frustrating search, I finally found a really nice bikini, it is pretty and it makes me look perfectly “normal”. It doesn’t cover the chest port, the bump stands out a bit, but I can live with that. I can’t wait to go on holidays now.
5. I started exercising with a personal trainer who has been helping me regain strength in my arms, correct posture, and build some muscle. It’s great and I feel very motivated. I am aware that it will take several months before I recover completely but I am on the right path.
6. J. started working this week and I miss her company already. I've been so lucky to have here, she's been my guardian angel.
7. Tomorrow is my last radiotherapy session. The end. Time to celebrate. And to celebrate, recharge and get some miminhos from my family, Saturday I am going to Portugal. My mother’s sofa is the best place in the world to rest, nap and be lazy. After Portugal S. and I are going to pamper ourselves in a spa.
8. According to my acupuncturist my Qi is imbalanced (I’m not surprised, I actually think everything about my body is deficient at the moment), and to balance my Qi and help me sleep better I started taking some Chinese herbs.
9. I’ve been eating like a pig and I’m putting on weight faster than I lost during chemo. Urgent action required, bald whales are not attractive!
10. I am preparing myself to get back to work. It’s been eight months and I wonder if I still remember where my desk is...
05 January 2011
Déjà vu!
So... the lymphatic cording is back! It's really annoying, it seems like the inconveniences just pile up.
About ten days ago my right arm started hurting and I started having difficulties lifting it up. It feels like there are tight cords in my arm, pulling it down, it is actually visible when I pull the arm up, two or three rope-like lines sticking out from under my arm, a bit like in this picture.
About ten days ago my right arm started hurting and I started having difficulties lifting it up. It feels like there are tight cords in my arm, pulling it down, it is actually visible when I pull the arm up, two or three rope-like lines sticking out from under my arm, a bit like in this picture.
As during radiotherapy I need to be able to hold my arms straight up, I decided to call my surgeon to show him my arm and ask what to do. He believes there's nothing to worry about and that it doesn't look like lymphedema. He recommended some more physiotherapy sessions where I will get massages and stretching exercises to try to soften the cords. Last time physiotherapy helped, so I can only hope this can be solved quickly, preferably before the 17th, when radiotherapy is due to start.
Today I also had to go to the clinic to have my port flushed, something I have to do every four weeks, give or take.
I can't get rid of hospitals, doctors, nurses, therapists, and the like!
18 December 2010
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!).
19 November 2010
Chemo day
Here I am, feeling miserable and sorry for myself. I hardly slept and feel very anxious.
The only thing I can think of is swear words and expressions, in Portuguese which is still my favourite language to swear. I am actually quite amazed at the length of the list of swear words I could put together, but to avoid having to affix a warning such as “Parental Advisory, Explicit Content” I will instead post this: @#*~~ÄßhNDML~Ú!$*@”.
One thing I have to mention is that I had a lovely day yesterday. It was so nice I even forgot about the fact that yesterday the nurse could not find a cooperative vein for the pre-chemo tests and only after four attempts and fiddling around with the needdle for a couple of minutes, which by the way didn't hurt but made me turn pale almost green, she decided to draw the blood sample from the portacath. Wise decision. My veins collapsed completely. As I was stressing a little bit too much these last few days, S. took the day off yesterday and we spent the day together doing only nice stuff: we had a delicious lunch, went to a nice exhibition, had a very tasty dinner and then went to a nice modern dance performance at Sadler's Wells with J., who had the great idea of inviting us to join her. Merci à tous les deux.
The only thing I can think of is swear words and expressions, in Portuguese which is still my favourite language to swear. I am actually quite amazed at the length of the list of swear words I could put together, but to avoid having to affix a warning such as “Parental Advisory, Explicit Content” I will instead post this: @#*~~ÄßhNDML~Ú!$*@”.
One thing I have to mention is that I had a lovely day yesterday. It was so nice I even forgot about the fact that yesterday the nurse could not find a cooperative vein for the pre-chemo tests and only after four attempts and fiddling around with the needdle for a couple of minutes, which by the way didn't hurt but made me turn pale almost green, she decided to draw the blood sample from the portacath. Wise decision. My veins collapsed completely. As I was stressing a little bit too much these last few days, S. took the day off yesterday and we spent the day together doing only nice stuff: we had a delicious lunch, went to a nice exhibition, had a very tasty dinner and then went to a nice modern dance performance at Sadler's Wells with J., who had the great idea of inviting us to join her. Merci à tous les deux.
29 October 2010
4 down, 2 more to go
Chemotherapy: take 4
It feels a bit like groundhog day by now. I wake up after a bad night sleep, feeling anxious and slightly scared, get ready, take a cab and arrive at The Harley Street Clinic for one more consultation with my oncologist. She goes through all side effects and medication, talks to me about how to best manage the side effects and about the new drug I am taking now, Taxotere. She answers my questions, always in a very positive way, making me feel confident and calm. I then go to the chemotherapy day unit, where I choose my chair, the one on the corner, by the window. S. sits next to me, like always, keeping me company while reading and listening to the radio that is playing softly in the room. The nurses greet us in a very nice way as usual and once again they go through the side effects of the Taxotere and explain how my treatment is going to be that day.
The results of the blood tests done the previous day show that my blood counts are within acceptable limits, meaning that the treatment can go ahead as planned. The nurse gives me the anti-sickness pill one hour before treatment starts. He checks my temperature, blood pressure and weight. By the way I’ve put on 1,5 kilos since last treatment which is great because I wasn’t supposed to lose more than 5 kilos and I had already lost 6. The nurses were a bit concerned about my weight loss. With Taxotere I may put on weight because of the steroids I have to take, but hopefully I will manage to stay the same, I will for sure make an effort not to turn into a fat whale. My self-esteem is already at its worse, soon I will have to hide all the mirrors in the house.
The drug is administered via the port-a-cath that I have now on my chest. It is so much better this way, it is faster and less painful. The only pain I felt was when the needle was inserted, and then when it was removed. I wish I had the port since the first day. It is a bit weird though to have something underneath your skin, with a tube in your vein, but I try not to think about it much.
While the infusion is given, I read, chat a bit, and enjoy the reflexology. It is in general a very relaxing day, despite all the stress that comes with it.
In the meantime, the pharmacist comes along with the list of medication I have to take at home, and the usual big bag full of medicines plus the Neulasta injection that I dislike but learned to give to myself to avoid one more trip to the clinic. Once again, she explains what to take and when and answers my questions.
Before removing the needle, the nurse flushes the port-a-cath to ensure it is open and unobstructed.
By 1pm I was already at home, feeling tired and slightly sickish, but nothing too bad. I had a proper dinner and went early to bed.
Today I had a reasonably good day. I just feel extremely tired and slightly nauseous, nothing I am not used to by now. S. stayed at home to keep me company. Having someone around makes me feel calmer. And it is nice to have someone to re-fill my glass of water and give me little kisses.
With the Taxotere I may experience the following side effects:
•Low white blood cell count (increases risk of infections)
•Low red blood cell count (anaemia)
•Fluid retention with weight gain, swelling of the ankles or abdominal area (great, just what I needed, I will turn into a bald big fat whale!)
•Peripheral neuropathy (numbness in fingers and toes)
•Nausea
•Diarrhoea
•Mouth sores
•Hair loss (too late, almost all is gone by now!)
•Fatigue and weakness
•Nail changes (nails may fall off)
•Vomiting
•Muscle, bone and joint pain
•Low platelet count (increases risk of bleeding)
•Allergic reactions (rash, flushing, fever, lowered blood pressure)
•Infusion site reactions
It feels a bit like groundhog day by now. I wake up after a bad night sleep, feeling anxious and slightly scared, get ready, take a cab and arrive at The Harley Street Clinic for one more consultation with my oncologist. She goes through all side effects and medication, talks to me about how to best manage the side effects and about the new drug I am taking now, Taxotere. She answers my questions, always in a very positive way, making me feel confident and calm. I then go to the chemotherapy day unit, where I choose my chair, the one on the corner, by the window. S. sits next to me, like always, keeping me company while reading and listening to the radio that is playing softly in the room. The nurses greet us in a very nice way as usual and once again they go through the side effects of the Taxotere and explain how my treatment is going to be that day.
The results of the blood tests done the previous day show that my blood counts are within acceptable limits, meaning that the treatment can go ahead as planned. The nurse gives me the anti-sickness pill one hour before treatment starts. He checks my temperature, blood pressure and weight. By the way I’ve put on 1,5 kilos since last treatment which is great because I wasn’t supposed to lose more than 5 kilos and I had already lost 6. The nurses were a bit concerned about my weight loss. With Taxotere I may put on weight because of the steroids I have to take, but hopefully I will manage to stay the same, I will for sure make an effort not to turn into a fat whale. My self-esteem is already at its worse, soon I will have to hide all the mirrors in the house.
The drug is administered via the port-a-cath that I have now on my chest. It is so much better this way, it is faster and less painful. The only pain I felt was when the needle was inserted, and then when it was removed. I wish I had the port since the first day. It is a bit weird though to have something underneath your skin, with a tube in your vein, but I try not to think about it much.
While the infusion is given, I read, chat a bit, and enjoy the reflexology. It is in general a very relaxing day, despite all the stress that comes with it.
In the meantime, the pharmacist comes along with the list of medication I have to take at home, and the usual big bag full of medicines plus the Neulasta injection that I dislike but learned to give to myself to avoid one more trip to the clinic. Once again, she explains what to take and when and answers my questions.
Before removing the needle, the nurse flushes the port-a-cath to ensure it is open and unobstructed.
By 1pm I was already at home, feeling tired and slightly sickish, but nothing too bad. I had a proper dinner and went early to bed.
Today I had a reasonably good day. I just feel extremely tired and slightly nauseous, nothing I am not used to by now. S. stayed at home to keep me company. Having someone around makes me feel calmer. And it is nice to have someone to re-fill my glass of water and give me little kisses.
With the Taxotere I may experience the following side effects:
•Low white blood cell count (increases risk of infections)
•Low red blood cell count (anaemia)
•Fluid retention with weight gain, swelling of the ankles or abdominal area (great, just what I needed, I will turn into a bald big fat whale!)
•Peripheral neuropathy (numbness in fingers and toes)
•Nausea
•Diarrhoea
•Mouth sores
•Hair loss (too late, almost all is gone by now!)
•Fatigue and weakness
•Nail changes (nails may fall off)
•Vomiting
•Muscle, bone and joint pain
•Low platelet count (increases risk of bleeding)
•Allergic reactions (rash, flushing, fever, lowered blood pressure)
•Infusion site reactions
09 October 2010
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.
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.
05 October 2010
Phlebitis: the sequel
Today I had to go back to the clinic because my arm was getting worse. The phlebitis has spread into my hand and upper arm. It is painful, a bruise-like kind of pain that was worrying me and making me restless. My veins are hard and brownish-purple and I have a swelling on my wrist which hurts quite a lot.
I was seen by a doctor who confirmed my arm veins cannot be used for the treatment, it would only increase the irritation causing more pain and discomfort.
As I feared, I will have a port surgically implanted in my chest under the skin. Thursday early in the morning I will be once again under anaesthesia and will have it implanted. One more scar, one more annoyance. I will then have the chemo drugs administered through the port on the same day.
An implantable port is a plastic tube (a catheter) that is put in the chest into a large vein just above the heart and that connects to an opening (a port) which sits just under the skin. The port will be left in place until the end of the chemotherapy treatments and a small discrete bump will be visible underneath the skin.
I am not very happy about this, but not too worried either. It’s just a hiccup along the way.
I was seen by a doctor who confirmed my arm veins cannot be used for the treatment, it would only increase the irritation causing more pain and discomfort.
As I feared, I will have a port surgically implanted in my chest under the skin. Thursday early in the morning I will be once again under anaesthesia and will have it implanted. One more scar, one more annoyance. I will then have the chemo drugs administered through the port on the same day.
An implantable port is a plastic tube (a catheter) that is put in the chest into a large vein just above the heart and that connects to an opening (a port) which sits just under the skin. The port will be left in place until the end of the chemotherapy treatments and a small discrete bump will be visible underneath the skin.
I am not very happy about this, but not too worried either. It’s just a hiccup along the way.
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