As I'm lying down, resting, healing (have been for the past couple weeks since my last radio therapy), I can not help but feeling sorry for myself...
I am unwell. Truly, physically unwell. I have not been this unwell ever before in my life.
I am weak, extremely fragile, finding it very hard to walk, sit, stand for longer than 5 minutes at the time... I hardly leave the house these days. Dropping off my daughter to school is an enormous task. Even just visiting the Doctor sometimes too hard ... I can't go down the beach, since I can't walk for more than couple hundred meters. I don't go out to cafes at the moment, since I can't sit properly for more than 5 minutes and it requires way too much of an effort to dress up in the first place...
My favorite place is home, in my recliner. Just lying down, snuggled in a blankie, cups of tea, a nice romantic comedy, my iPhone and 3 comfort meals a day. My only desired company is my beautiful daughter and my loving man...
My emotions are all over the place too.
I mostly feel sad. And frustrated for being so useless. Angry, when I wish to do something and I realise I can't. I also feel scared of losing the vision ...
The vision of being well again.
The numbness in my leg, particularly in my foot, is much easier to handle than the pain, but yet it's hard to deal with when trying to move around. Or even just putting clothes on. It requires much too much effort.
The tingling sensation in my chin is scary. Scary because it's been there before, about a year ago. And soon after that, there came cancer diagnosis in my chin, scull and tumors in my brain. The tingling went away after radio treatment, but came back recently ... Does that mean cancer in my chin is back?
We were meant to be in Thailand at the moment. A three weeks long warm sunny tropical family holiday. Creating lovely memories. Well, we are not there, because I'm too unwell. The trip has been postponed till mid September. Something to look forward to. But I want to be well! I want to be healthy. I want to be pain free, numbness free, feeling well, energetic, and full of life. Possibly on a very low dose of medication, no steroids. Will I?
Another challenge is my hair. It's been over 6 weeks since my chemotherapy. My body hair is slowly coming back, but my hair is staying so very thin... It's just horrible. I cut it short the other day to get rid of that horrid 'zombie' hair look. But didn't do it any justice. Now all my bright red subcutaneous tumors (which are placed all over my scull) are obvious and are visibly popping out... Not a good look. Scary, really.
I look unwell. I feel unwell.
And I had enough! I am exhausted. Exhausted of needing to make important decisions on my future treatments, exhausted of feeling old, fragile, unhealthy, weak, unstable, uncertain.... And sick of seeing someone else in a reflection when I look in the mirror.
My only wish is to feel well.
Showing posts with label set backs. Show all posts
Showing posts with label set backs. Show all posts
Wednesday, June 27, 2012
Tuesday, February 28, 2012
The Meltdown
I had a lovely weekend and felt good on a nice summery Monday morning. After dropping off my daughter at school, I needed to do a blood test, which is necessary a day prior my next round of chemotherapy. I had a 'chemo break' last week and was about to start the new (fourth) cycle. Each cycle consists of 3 rounds and 1 week break and I am to have 6 in total. So I am now midway. Great, the countdown begins.
Having chemo is not by any means a good thing. No matter how smooth or well tolerated chemo is, it is an extremely unpleasant experience. My chemo is an IV form and even though it only takes about 45 min to administer, it is not nice to say the least. You sit in a neon lit room of the clinic with many other cancer patients and do nothing but wait until it all flows through your veins. You also get some 'extras', either pills or shots for side effects. You are basically filled up with a variety of legal synthetic drugs.
4 years ago, all of the drugs made me extremely sick for the first 24 hours. In fact so sick, I couldn't share the room with anyone, not even with my daughter or any family member. I couldn't talk, eat, drink or do anything but curl up in bed, in the dark and try to sleep it off. Or else I would have been extremely nauseous.
This time around is much better. Different, newer drugs and much lighter immediate side effects. I feel tired, slightly light headed, looking pale, but still able to do all normal chores like picking up my girl from school and taking her to ballet class, having dinner etc. All good from that part.
But yet, it doesn't feel nowhere near pleasant. I would have never add chemo to my 'to do list'. Honestly, it absolutely sucks (excuse my language) and just the thought of it irritates me.
Anyhow, a day prior each chemo, I need a blood test for Doctor to see my blood and my organs (like kidneys) are well enough to handle the chemicals...
So off I went.
I started really disliking blood tests and needles generally. I've been having way too many over the past couple months. And I think my veins can tell. They seem to go on strike every time I enter the Pathology room, or the Vitamin C room, where I'm getting my weekly high doses of Vitamin C through IV. The nurses are having serious troubles finding my veins.
Yesterday morning, all bright and early, happened again. The nurse missed the vein twice. And it was painful. But more so, it was annoying me. All of a sudden I started feeling physically sick, I thought I was going to faint. I got very hot and covered in sweat. Almost shaky. All I wanted is to get out of there.
I had two nurses giving me attention, wanting to try again... But all I could do was walk out and skip the blood test. I had two band aids on both arms, caused by unsuccessful trials.
I felt physically sick and thought I would faint.
Mentally, I could feel the whole lot of unpleasant emotions arising... Stronger and stronger all the stuff started to come out of somewhere deep inside, right out through my body, to my mind and out of my eyes and through my mouth....
Just as I reached the car, the total meltdown began.
I phoned my man. Out came swear words galore, out came the tears pouring, out came 'why me's, 'not fair's, and more and more F words (*I am not the person who swears, ever, no F words nor similar are in my vocabulary).... They all just came out flooding. Out of, what seemed nowhere... But yet it all came from somewhere deep inside of me. It was a moment of unpleasant emotions and it came pouring out.
When we practice mindfulness, unpleasant emotions like anger, become just another emotion to respond to, not to live in. We learn to observe, not to react.
But yet I reacted. I reacted wholeheartedly, crying, yelling, swearing, almost abusing my innocent man on the phone.
And this is what I've learned:
Practice of mindfulness is a lengthy process and no matter how long you manage to stay in 'the good place', it is (unfortunately) not the destination, but a life long journey, which requires one step at a time. Many steps are easy, and get even easier with practice, as you get 'fitter'. You are walking straight line, flat, relaxed pace. Until all of a sudden, you reach an extremely steep hill, or a huge rock to climb, a fence to jump over, or a slippery wet part, or an icy cold patch, a dangerous curve or perhaps just a little sharp stone...
Each step you take is important.
It's not about trying to control the actual journey, but keeping the determination to stay on the path no matter what comes your way, keeping the pace comfortable, safe, accepting whatever comes your way, no matter how unpleasant the circumstances and emotions associated with experience are.
So I had a meltdown. A complete meltdown I have not expected to have. It all came out, which obviously had to, as it was there, somewhere. I felt much lighter afterwards.
And I didn't let the meltdown consume my whole existence. I didn't drag it on and on. It came all of a sudden, I let it all out, I was a bit surprised, shed few extra tears during the day and wondered where did it all come from? But I also sat down for half an hour, in peace and quite, practicing mindfulness meditation to calm my mind and gain some clarity, mostly on where and why did it all happen.
I didn't get the answer, but did calm down greatly. And I didn't continue trying to analyse it or catastrophise it or making up stories around and about it.
Although I am a complete beginner in the vastness of the mindfulness practice, I did notice a difference in dealing with the meltdown, comparing to my past, pre-cancer life. The best part is, I now feel much lighter and calmer. And yet again, I am at peace.
How about you? How do you deal with the meltdowns? How do you cross the obstacles? Would love to hear!
Having chemo is not by any means a good thing. No matter how smooth or well tolerated chemo is, it is an extremely unpleasant experience. My chemo is an IV form and even though it only takes about 45 min to administer, it is not nice to say the least. You sit in a neon lit room of the clinic with many other cancer patients and do nothing but wait until it all flows through your veins. You also get some 'extras', either pills or shots for side effects. You are basically filled up with a variety of legal synthetic drugs.
4 years ago, all of the drugs made me extremely sick for the first 24 hours. In fact so sick, I couldn't share the room with anyone, not even with my daughter or any family member. I couldn't talk, eat, drink or do anything but curl up in bed, in the dark and try to sleep it off. Or else I would have been extremely nauseous.
This time around is much better. Different, newer drugs and much lighter immediate side effects. I feel tired, slightly light headed, looking pale, but still able to do all normal chores like picking up my girl from school and taking her to ballet class, having dinner etc. All good from that part.
But yet, it doesn't feel nowhere near pleasant. I would have never add chemo to my 'to do list'. Honestly, it absolutely sucks (excuse my language) and just the thought of it irritates me.
Anyhow, a day prior each chemo, I need a blood test for Doctor to see my blood and my organs (like kidneys) are well enough to handle the chemicals...
So off I went.
I started really disliking blood tests and needles generally. I've been having way too many over the past couple months. And I think my veins can tell. They seem to go on strike every time I enter the Pathology room, or the Vitamin C room, where I'm getting my weekly high doses of Vitamin C through IV. The nurses are having serious troubles finding my veins.
Yesterday morning, all bright and early, happened again. The nurse missed the vein twice. And it was painful. But more so, it was annoying me. All of a sudden I started feeling physically sick, I thought I was going to faint. I got very hot and covered in sweat. Almost shaky. All I wanted is to get out of there.
I had two nurses giving me attention, wanting to try again... But all I could do was walk out and skip the blood test. I had two band aids on both arms, caused by unsuccessful trials.
I felt physically sick and thought I would faint.
Mentally, I could feel the whole lot of unpleasant emotions arising... Stronger and stronger all the stuff started to come out of somewhere deep inside, right out through my body, to my mind and out of my eyes and through my mouth....
Just as I reached the car, the total meltdown began.
I phoned my man. Out came swear words galore, out came the tears pouring, out came 'why me's, 'not fair's, and more and more F words (*I am not the person who swears, ever, no F words nor similar are in my vocabulary).... They all just came out flooding. Out of, what seemed nowhere... But yet it all came from somewhere deep inside of me. It was a moment of unpleasant emotions and it came pouring out.
When we practice mindfulness, unpleasant emotions like anger, become just another emotion to respond to, not to live in. We learn to observe, not to react.
But yet I reacted. I reacted wholeheartedly, crying, yelling, swearing, almost abusing my innocent man on the phone.
And this is what I've learned:
Practice of mindfulness is a lengthy process and no matter how long you manage to stay in 'the good place', it is (unfortunately) not the destination, but a life long journey, which requires one step at a time. Many steps are easy, and get even easier with practice, as you get 'fitter'. You are walking straight line, flat, relaxed pace. Until all of a sudden, you reach an extremely steep hill, or a huge rock to climb, a fence to jump over, or a slippery wet part, or an icy cold patch, a dangerous curve or perhaps just a little sharp stone...
Each step you take is important.
It's not about trying to control the actual journey, but keeping the determination to stay on the path no matter what comes your way, keeping the pace comfortable, safe, accepting whatever comes your way, no matter how unpleasant the circumstances and emotions associated with experience are.
So I had a meltdown. A complete meltdown I have not expected to have. It all came out, which obviously had to, as it was there, somewhere. I felt much lighter afterwards.
And I didn't let the meltdown consume my whole existence. I didn't drag it on and on. It came all of a sudden, I let it all out, I was a bit surprised, shed few extra tears during the day and wondered where did it all come from? But I also sat down for half an hour, in peace and quite, practicing mindfulness meditation to calm my mind and gain some clarity, mostly on where and why did it all happen.
I didn't get the answer, but did calm down greatly. And I didn't continue trying to analyse it or catastrophise it or making up stories around and about it.
Although I am a complete beginner in the vastness of the mindfulness practice, I did notice a difference in dealing with the meltdown, comparing to my past, pre-cancer life. The best part is, I now feel much lighter and calmer. And yet again, I am at peace.
How about you? How do you deal with the meltdowns? How do you cross the obstacles? Would love to hear!
Friday, November 18, 2011
3 steps forward, 1 step back
Ah, the unpredictability of the life with cancer...
Just as I thought all is under control, decided to take a well deserved break from heavy decision making on serious treatments, or starting any suggested serious treatments such as chemotherapy (which I have been postponing for quite a few months), I woke up the other day in an excruciating pain. And this time, the pain decided not to go away. Not with a top up pain medications, not with a session of acupuncture, meditation, rest... Nothing seemed to help.
As the day progressed, the pain was getting worse and worse, until it got so bad that I simply curled up on the floor, unable to stand up or even sit up. It was most physically agonizing pain I have ever experienced, and I couldn't move without the help of my loving man. Breathless and unable to get the words out ... All of the muscles around back and front of my lungs were in a complete spasm.
It took me at least 20 minutes to come back to breath, be able to talk and phone my after hours palliative care team for advice. Few top up painkillers, another phone call an hour later and doubling the usual dose, left me quite high, but somehow numb to the pain and I ended up having a very needed deep, long night sleep.
Positive me, I hoped for a good, pain free morning to wake up to. Gosh I was wrong!
I woke up fresh, at peace, well rested, but realised soon after that I couldn't move. The mission to the bathroom was pretty much impossible. In fact, it was so bad, I couldn't even sit up to take my morning medication. I was very close to be completely paralyzed from neck to hips.
I crashed back onto my bed in agony, took quite some time to relax, release and catch enough breath to be able to start talking... Needless to say, I was straight on the phone to the Doctor, organized an ambulance and off I went to the nearest Emergency.
So much about being in control... And reducing my painkillers.... And taking a 'well deserved Xmas break' from cancer :-))))
What have I learned?
In this particular event from the past few days, I have learned there is often no such thing as taking control over the situation.... No such thing as a 'deadline', or a break, holiday, time out...
Sometimes, things just occur, very unpredictably and totally unplanned, out of our hands, nowhere in our agenda.
It is in a way similar to the experience of being a new parent.
Once your child is born, you are a grown up, a parent, responsible 24/7, for the rest of your life. There is no manual, no agenda on baby's sleep, no knowing what comes next. It is extremely unpredictable.
And no matter how tired you sometimes may feel, no matter how much you feel like you need a long, uninterrupted good night sleep, there is no break from it. And it is pretty much out of control, at least yours, anyway... It seems that all of a sudden, a little innocent newborn, so precious and dependant, completely changed your life.
Please let me explain in a more detailed way:
By no means I intend to be negative about being a new parent, as it actually also is the most amazing experience, better and greater than anything you could have ever imagined. It is also the most rewarding. And it teaches you so much.
Being a mother, I have learned million things, but the two that really stand out for me are:
The secondary diagnosis of cancer has changed my life completely, and mostly (just like being a mother) in the most amazing, positive, rewarding way.
Over the past year, I have left my stressful job, changed my diet to the healthiest possible, started to meditate, surrounded myself with people that I want to be surrounded with, my priorities are very obviously recognised, I have found a peace of mind, gained clarity, got rid of the guild, anger, learned how to deal with stressful situations in a healthy, peaceful manner ... And the list of positives goes on and on.
But most importantly, I have started practising true, immeasurable, unconditional love towards myself and I am learning, day by day, to be patient.
So yes, I have learned that sometimes things happen suddenly, very unpredictably, totally unexpected, unplanned and out of our hands.
I have recently opened myself to starting another session of chemotherapy, but naively thought it could wait until the beginning of new year. I seriously believed my cancer in the spine can take a 2 months vacation from a much needed treatment, without compromising my well-being, let me enjoy the festive season and then, when I am ready with my 'new year resolution list', we can start 'fresh after a break' - in my own time frame.
Yes, I was very wrong.
But whatever happens, no matter have unexpected and horrible it may feel when it occurs, it is just a moment. A moment, that just like any other moment in our life, is sure to pass.
And so we move through life - 3 steps forward, 1 step back, learning to embrace the uncertainty and unpredictability, knowing that although slow, with many possible set-backs, we still are moving forward, towards the completion of the circle of life as we know it.
To conclude, I will use a simple, but yet very deep and powerful mantra by my dear friend Jane:
'All is well. All is well. All is well... Always!'
In this particular event from the past few days, I have learned there is often no such thing as taking control over the situation.... No such thing as a 'deadline', or a break, holiday, time out...
Sometimes, things just occur, very unpredictably and totally unplanned, out of our hands, nowhere in our agenda.
It is in a way similar to the experience of being a new parent.
Once your child is born, you are a grown up, a parent, responsible 24/7, for the rest of your life. There is no manual, no agenda on baby's sleep, no knowing what comes next. It is extremely unpredictable.
And no matter how tired you sometimes may feel, no matter how much you feel like you need a long, uninterrupted good night sleep, there is no break from it. And it is pretty much out of control, at least yours, anyway... It seems that all of a sudden, a little innocent newborn, so precious and dependant, completely changed your life.
Please let me explain in a more detailed way:
By no means I intend to be negative about being a new parent, as it actually also is the most amazing experience, better and greater than anything you could have ever imagined. It is also the most rewarding. And it teaches you so much.
Being a mother, I have learned million things, but the two that really stand out for me are:
- true, immeasurable, unconditional love (instantly)
- patience (work in progress)
The secondary diagnosis of cancer has changed my life completely, and mostly (just like being a mother) in the most amazing, positive, rewarding way.
Over the past year, I have left my stressful job, changed my diet to the healthiest possible, started to meditate, surrounded myself with people that I want to be surrounded with, my priorities are very obviously recognised, I have found a peace of mind, gained clarity, got rid of the guild, anger, learned how to deal with stressful situations in a healthy, peaceful manner ... And the list of positives goes on and on.
But most importantly, I have started practising true, immeasurable, unconditional love towards myself and I am learning, day by day, to be patient.
So yes, I have learned that sometimes things happen suddenly, very unpredictably, totally unexpected, unplanned and out of our hands.
I have recently opened myself to starting another session of chemotherapy, but naively thought it could wait until the beginning of new year. I seriously believed my cancer in the spine can take a 2 months vacation from a much needed treatment, without compromising my well-being, let me enjoy the festive season and then, when I am ready with my 'new year resolution list', we can start 'fresh after a break' - in my own time frame.
Yes, I was very wrong.
But whatever happens, no matter have unexpected and horrible it may feel when it occurs, it is just a moment. A moment, that just like any other moment in our life, is sure to pass.
And so we move through life - 3 steps forward, 1 step back, learning to embrace the uncertainty and unpredictability, knowing that although slow, with many possible set-backs, we still are moving forward, towards the completion of the circle of life as we know it.
To conclude, I will use a simple, but yet very deep and powerful mantra by my dear friend Jane:
'All is well. All is well. All is well... Always!'
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