I got a call from oncology yesterday to say that my radiation starts on 6th April. Just as I had predicted. Everything seems to be happening on that date. We have our friends up from Jhb during that time, which we are very excited about. My big research tracking job starts on that day, which we are not so very excited about - apart from the pay cheque :-). Jordan is still on school holidays, so there is also him to entertain. In addition, my nanny is on leave from that date. Thank God the new dishwasher arrived yesterday.
In the last week I have been to the podiatrist and dietitian. You would think that I had had enough of doctors and specialists to create more voluntary appointments. Next it will have to be the eyes and teeth and then back to the guynie for the hysterectomy. I may as well get it all done this year while I am on a roll. I still have mouth ulcers and my gums are extremely tender (presumably from the chemo as it was one of the symptoms). My thumb nails are also discolored - not quite black, but quite dark in the middle. My hair, however, is slowly but surely making its appearance known.
There are benefits to having "cancer" linked to your name. Normally medical aid would not pay for things like dietitians - but when it has to do with healthy eating related to cancer - they pay in full. I was assessed for 2 hours by the dietitian and will have a full plan to follow by ... 6th APRIL too.
When I told oncology about the dietitian visit, they nearly freaked and told me in no uncertain terms that I am not to lose weight whilst undergoing radiation. The treatment has been prepared according to my current weight. Dammit!!
Other than that, life has been a bit wobbly for me, but I still get up every day and get on with whatever needs doing. Right now, I don't want to expect any more from myself (.)(.)
Wednesday, March 31, 2010
Wednesday, March 24, 2010
Tat one (.) Tat too (.) = Tit4Tat
I went to be measured up yesterday for my radiation. This included having to get 3 tattoos (more needles), which were rather eina. One in the middle of my breast (on the bone), and the other 2 either side of my breast. I also had to see the doctor on duty - which, uncomfortably enough, happened to be the one I fired. It was just a case of casually saying to him "so we meet again". Thankfully he remained professional. Let's just hope he didn't aim for my heart when he told the nurses what to do.
The tattoos are permanent but you can hardly see them as they are just little dots that get lost with the rest of the freckles and scars.
After the measure-up - which took about half an hour as I had to WAIT for the doctor on duty - I was told to go and see the social worker. At her own admission, this was supposed to happen at the start of my treatment. Although she was rather sweet and compassionate, everything she told me was not new as I had already experienced them (feelings, etc). It would have been nice to be warned of them prior to treatment, but then again, at least I know that my feelings were authentic and was not caused by someone putting thoughts in my head.
I was thinking after yesterday's appointments how disappointed I feel the way my treatment has gone when I hear of other people's positive experiences. When I consider whether I may have contributed to the negative experience I had, sure maybe I did in some ways - but I am the most positive person I know going through this, so why didn't I get some of that positivity back?
As for my medical aid ... OMG, what a cocked-up nightmare. All because of the wrong codes being given by oncology. This means that most of my bills are going through daily benefits and not oncology. None of which can be reversed. None of which we would have had the knowledge of without being informed. Now we are only in the month of March with no medical left for physio, Jordan or Hil's monthly medication which costs close to R1500 per month. The upgrade of my medical aid now costing R6000 (from R3200) per month should have covered everything for the rest of the year. Fucking administrative inefficiencies is my absolute worst and an irritation I could really do without!!
My body is taking a bit of flack at the moment - ulcers in the mouth, cold sores up my nose, strange lumps elsewhere, 3 periods in 5 weeks. I am also feeling really tired and down about my energy levels. The social worker did confirm that this will probably go on for a good 6 months after all my treatment (including radiation) because of my body using up all the energy to fight the strange things entering my body. She reckons I should just give myself a break. "Easier said than done, but ... ho hum ... if you insist" she says while contemplating an afternoon nap.
It should take between 7-10 days for them to prep stuff from my measurements before radiation starts. This should take the timing of when I start radiation just before Easter, but I am sure it will be fine to start the whole thing after Easter (around the 6th) as cancer cells are not active during weekends and long weekends. Even though I have given them my preferences of date and times, they decide when (because they are really busy) and will let me know. It will be a daily jol then for the next 7 weeks.
The social worker tells me that I should expect to feel a bit down during this radiation time for various reasons. The schlep of having to come in every day. The fatigue felt because of my body fighting against the radiation. The emotional issues as I now find myself fighting this last leg on my own. The original "hype and scare" everyone felt in the beginning (in case I die I suppose) has definitely died down, which in a way I am grateful for as it takes the scare out for me. Although I cannot deny that I have appreciated the love and support I get, but not having the hype has put my life back on track to being remotely manageable. I never really thought about any of this before she mentioned it, but it is only natural I guess. It is like when someone dies - after all the hype, life goes on ... it is called survival. Life is, after all, meant for living and THE living.
I think about it now because it was only a short 3-4 weeks ago that we experienced it with the suicide of one of our prominent GA members. OMG that really rocked my boat, but now, apart from the odd thought during the day about him, and especially his wife and children, my life has gone on to the extent of almost forgetting about him.
This is why I had said before that I don't do sick for a long time as it actually becomes a bit of a "pain in the arse" for me and those around me. Like "enough already"!! This is probably why I get so frustrated and moan when I am tired, sore, full of sores, etc.
I don't want to put any more strain on anybody than what they are capable of giving. There is only so much compassion one can give before they start resenting the fact that they too have needs. I am not asking for the compassion and can't help that these things (which I clearly moan a lot about) are happening to me. I never considered any of this actually and hate the fact that she put these thoughts in my head because quite frankly I now see it.
She also told me to not take the radiation treatment so lightly as it has been known to be worse for some patients than chemo. This I doubt very much!!
On the upside - my hair is growing - I can feel the wind blow my little hair spikes back and forth. A bit of bum-fluff actually, but there is a distinct black shadow when you look from a distance. Close up looks really funny though as you can see where it is not growing (.)(.)
The tattoos are permanent but you can hardly see them as they are just little dots that get lost with the rest of the freckles and scars.
After the measure-up - which took about half an hour as I had to WAIT for the doctor on duty - I was told to go and see the social worker. At her own admission, this was supposed to happen at the start of my treatment. Although she was rather sweet and compassionate, everything she told me was not new as I had already experienced them (feelings, etc). It would have been nice to be warned of them prior to treatment, but then again, at least I know that my feelings were authentic and was not caused by someone putting thoughts in my head.
I was thinking after yesterday's appointments how disappointed I feel the way my treatment has gone when I hear of other people's positive experiences. When I consider whether I may have contributed to the negative experience I had, sure maybe I did in some ways - but I am the most positive person I know going through this, so why didn't I get some of that positivity back?
As for my medical aid ... OMG, what a cocked-up nightmare. All because of the wrong codes being given by oncology. This means that most of my bills are going through daily benefits and not oncology. None of which can be reversed. None of which we would have had the knowledge of without being informed. Now we are only in the month of March with no medical left for physio, Jordan or Hil's monthly medication which costs close to R1500 per month. The upgrade of my medical aid now costing R6000 (from R3200) per month should have covered everything for the rest of the year. Fucking administrative inefficiencies is my absolute worst and an irritation I could really do without!!
My body is taking a bit of flack at the moment - ulcers in the mouth, cold sores up my nose, strange lumps elsewhere, 3 periods in 5 weeks. I am also feeling really tired and down about my energy levels. The social worker did confirm that this will probably go on for a good 6 months after all my treatment (including radiation) because of my body using up all the energy to fight the strange things entering my body. She reckons I should just give myself a break. "Easier said than done, but ... ho hum ... if you insist" she says while contemplating an afternoon nap.
It should take between 7-10 days for them to prep stuff from my measurements before radiation starts. This should take the timing of when I start radiation just before Easter, but I am sure it will be fine to start the whole thing after Easter (around the 6th) as cancer cells are not active during weekends and long weekends. Even though I have given them my preferences of date and times, they decide when (because they are really busy) and will let me know. It will be a daily jol then for the next 7 weeks.
The social worker tells me that I should expect to feel a bit down during this radiation time for various reasons. The schlep of having to come in every day. The fatigue felt because of my body fighting against the radiation. The emotional issues as I now find myself fighting this last leg on my own. The original "hype and scare" everyone felt in the beginning (in case I die I suppose) has definitely died down, which in a way I am grateful for as it takes the scare out for me. Although I cannot deny that I have appreciated the love and support I get, but not having the hype has put my life back on track to being remotely manageable. I never really thought about any of this before she mentioned it, but it is only natural I guess. It is like when someone dies - after all the hype, life goes on ... it is called survival. Life is, after all, meant for living and THE living.
I think about it now because it was only a short 3-4 weeks ago that we experienced it with the suicide of one of our prominent GA members. OMG that really rocked my boat, but now, apart from the odd thought during the day about him, and especially his wife and children, my life has gone on to the extent of almost forgetting about him.
This is why I had said before that I don't do sick for a long time as it actually becomes a bit of a "pain in the arse" for me and those around me. Like "enough already"!! This is probably why I get so frustrated and moan when I am tired, sore, full of sores, etc.
I don't want to put any more strain on anybody than what they are capable of giving. There is only so much compassion one can give before they start resenting the fact that they too have needs. I am not asking for the compassion and can't help that these things (which I clearly moan a lot about) are happening to me. I never considered any of this actually and hate the fact that she put these thoughts in my head because quite frankly I now see it.
She also told me to not take the radiation treatment so lightly as it has been known to be worse for some patients than chemo. This I doubt very much!!
On the upside - my hair is growing - I can feel the wind blow my little hair spikes back and forth. A bit of bum-fluff actually, but there is a distinct black shadow when you look from a distance. Close up looks really funny though as you can see where it is not growing (.)(.)
Friday, March 12, 2010
I am cancer-FREE baby
I think I knew all along that the cancer had gone, but it is comforting to get the scientific confirmation.
After my last traumatic chemo episode, I just knew I couldn't do it anymore. It didn't feel like a brattish thing of "not wanting to play anymore", it felt like a nagging thought and tummy thing. I prayed about it. The next morning I demanded the answer and all I got was "listen to your feelings".
My feelings indicated that every time I thought about chemo my stomach would literally turn and I felt this doom and gloom - like a total separation and disconnection from life and God. It was lonely. Everything was being affected, especially my other recovery, which is my number 1 priority in life. Even though I have thus far not missed a day of work and/or other responsibilities, my life becomes totally unmanageable when I am on chemo, particularly in the head. This is extremely dangerous for my other recovery.
When I thought about not doing chemo I got that butterfly effect in my tummy of hope - my faith felt stronger. I got excited about knowing that I would need to replace chemo with a lifestyle change. I would need to make a new commitment to my life. Being demotivated to exercise, eat properly, etc is no longer an option for me. It rather excites me, especially as there would be the added benefit of losing weight and feeling energetically great.
But this did not feel like the answer I was looking for, it seemed to be a conveniently easy and logical way to think. Then that same morning Hil and I got talking. The kind of talking where one thing leads to another and before I knew it we were addressing old hurts in our relationship. Stuff that has never really been easy for me to talk about, especially as I was mostly responsible for all the hurts. It was a good talk and when she left the room to make our morning tea, I got this overwhelming emotion and began to cry. Then quite by surprise I got the thought "the door has NOW opened to your healing". There was the answer I was demanding and I knew it without a shadow of a doubt.
I have known for a while now that my addictions progressed mostly due to my inability to express my emotions and feelings as well as to get rid of the shame caused by the continuing cycle - you know - feel bad, drown it, behave bad, hurt others and myself, feel bad ... and start the cycle all over again as an attempt to get away from it all. I also know that cancer in the breast is indicative of some form of nurturing and parenting. Not necessarily me and my mother or me and Jordan, it could also be me and ME. You know, the responsibility of looking after myself in a motherly nurturing way.
Then it was brought to my attention by another specialist that when one stops the booze or drugs and hasn't quite learned yet how to express those things that one is trying to escape from, it has to come out in another way. Hence my breast cancer! It's all very much a wake up call for me actually and the awareness of it all is quite liberating.
I never really wanted to do chemo as I knew I would include and go the alternative route as well, but I felt almost obliged to go the scientific route, especially after being chastised by doctors of "what university did you go to that gives you the knowledge to make such a decision!!"
I really don't believe it is an irresponsible decision that I have made as I was merely on preventative treatment - my nodes were all clear. If I had lung cancer or brain cancer or if the nodes were positive, that to me would be irresponsible.
My new oncologist wouldn't allow me to stop chemo unless my bone scans were clear. So after a 20-minute full bone scan with enough nuclear stuff in me to light up any airport check-in, I did all the remaining tests and PASSED THEM ALL with no sign of spread.
Basically what this means is that if I do continue with the full recommended treatment the stats would be a 20% chance of relapse and a 2% chance of dying. Stopping the chemo now the stats = 24% relapse, 2% dying. The extra 4% does not warrant the separational pain and anxiety that the treatment causes. Like I have said before, I have more chance of getting hit by a bus.
I do however have to do the radiation and hormone therapy. There was no negotiation there. This starts next week every day for 7 weeks and then 5 years of hormone therapy, which is basically just a pill. It is not the administering of the therapy that is the problem, but the effects and risks that is causes that is a bit freakish. The high risk of uterus cancer will be sorted with a hysterectomy though.
Unlike my old oncle - my new oncologist has explained in detail the effects I can expect with radiation. Everything by the right boob - skin, breast tissue, muscle, bone and lung will be effected, but it all should heal within a year.
I actually asked her why does nothing get done or changed unless it is challenged. Like interest rates at the bank or negotiating a car deal - unless you ask, you won't get it, because you simply don't know it is available. I asked her why is it the same with health issues? Her explanation was that they have a successful recipe that works for a fair amount of patients - and there would be no real need to change it unless it is challenged. I think challenging is good then as it gives them a new angle to look at if successful - that is if you are prepared to take the risk.
My new oncologist is really a breath of fresh air - she emailed me the minute she got my bone results. She also doesn't have a problem showing her human-ness - like when I showed my appreciation for her email, her reply was simply a big X ... !! Why do chicks do things so differently and not feel threatened by it?
So it is all good and I got to show my gratitude with an opportunity of helping out a friend in need.
The only thing that is still bugging me is why do they have bibles in all the oncology rooms and scanning places?? They are so prominently displayed, and the likelihood of someone having the time to pick it up and get the full intended message is rare. Perhaps it is an attempt to remind the patient that faith too is needed!! Actually, come to think of it - could this be a bit of admitting that not all knowledge can be gained from university?
Okay I am off now to grow my hair (.)(.)
After my last traumatic chemo episode, I just knew I couldn't do it anymore. It didn't feel like a brattish thing of "not wanting to play anymore", it felt like a nagging thought and tummy thing. I prayed about it. The next morning I demanded the answer and all I got was "listen to your feelings".
My feelings indicated that every time I thought about chemo my stomach would literally turn and I felt this doom and gloom - like a total separation and disconnection from life and God. It was lonely. Everything was being affected, especially my other recovery, which is my number 1 priority in life. Even though I have thus far not missed a day of work and/or other responsibilities, my life becomes totally unmanageable when I am on chemo, particularly in the head. This is extremely dangerous for my other recovery.
When I thought about not doing chemo I got that butterfly effect in my tummy of hope - my faith felt stronger. I got excited about knowing that I would need to replace chemo with a lifestyle change. I would need to make a new commitment to my life. Being demotivated to exercise, eat properly, etc is no longer an option for me. It rather excites me, especially as there would be the added benefit of losing weight and feeling energetically great.
But this did not feel like the answer I was looking for, it seemed to be a conveniently easy and logical way to think. Then that same morning Hil and I got talking. The kind of talking where one thing leads to another and before I knew it we were addressing old hurts in our relationship. Stuff that has never really been easy for me to talk about, especially as I was mostly responsible for all the hurts. It was a good talk and when she left the room to make our morning tea, I got this overwhelming emotion and began to cry. Then quite by surprise I got the thought "the door has NOW opened to your healing". There was the answer I was demanding and I knew it without a shadow of a doubt.
I have known for a while now that my addictions progressed mostly due to my inability to express my emotions and feelings as well as to get rid of the shame caused by the continuing cycle - you know - feel bad, drown it, behave bad, hurt others and myself, feel bad ... and start the cycle all over again as an attempt to get away from it all. I also know that cancer in the breast is indicative of some form of nurturing and parenting. Not necessarily me and my mother or me and Jordan, it could also be me and ME. You know, the responsibility of looking after myself in a motherly nurturing way.
Then it was brought to my attention by another specialist that when one stops the booze or drugs and hasn't quite learned yet how to express those things that one is trying to escape from, it has to come out in another way. Hence my breast cancer! It's all very much a wake up call for me actually and the awareness of it all is quite liberating.
I never really wanted to do chemo as I knew I would include and go the alternative route as well, but I felt almost obliged to go the scientific route, especially after being chastised by doctors of "what university did you go to that gives you the knowledge to make such a decision!!"
I really don't believe it is an irresponsible decision that I have made as I was merely on preventative treatment - my nodes were all clear. If I had lung cancer or brain cancer or if the nodes were positive, that to me would be irresponsible.
My new oncologist wouldn't allow me to stop chemo unless my bone scans were clear. So after a 20-minute full bone scan with enough nuclear stuff in me to light up any airport check-in, I did all the remaining tests and PASSED THEM ALL with no sign of spread.
Basically what this means is that if I do continue with the full recommended treatment the stats would be a 20% chance of relapse and a 2% chance of dying. Stopping the chemo now the stats = 24% relapse, 2% dying. The extra 4% does not warrant the separational pain and anxiety that the treatment causes. Like I have said before, I have more chance of getting hit by a bus.
I do however have to do the radiation and hormone therapy. There was no negotiation there. This starts next week every day for 7 weeks and then 5 years of hormone therapy, which is basically just a pill. It is not the administering of the therapy that is the problem, but the effects and risks that is causes that is a bit freakish. The high risk of uterus cancer will be sorted with a hysterectomy though.
Unlike my old oncle - my new oncologist has explained in detail the effects I can expect with radiation. Everything by the right boob - skin, breast tissue, muscle, bone and lung will be effected, but it all should heal within a year.
I actually asked her why does nothing get done or changed unless it is challenged. Like interest rates at the bank or negotiating a car deal - unless you ask, you won't get it, because you simply don't know it is available. I asked her why is it the same with health issues? Her explanation was that they have a successful recipe that works for a fair amount of patients - and there would be no real need to change it unless it is challenged. I think challenging is good then as it gives them a new angle to look at if successful - that is if you are prepared to take the risk.
My new oncologist is really a breath of fresh air - she emailed me the minute she got my bone results. She also doesn't have a problem showing her human-ness - like when I showed my appreciation for her email, her reply was simply a big X ... !! Why do chicks do things so differently and not feel threatened by it?
So it is all good and I got to show my gratitude with an opportunity of helping out a friend in need.
The only thing that is still bugging me is why do they have bibles in all the oncology rooms and scanning places?? They are so prominently displayed, and the likelihood of someone having the time to pick it up and get the full intended message is rare. Perhaps it is an attempt to remind the patient that faith too is needed!! Actually, come to think of it - could this be a bit of admitting that not all knowledge can be gained from university?
Okay I am off now to grow my hair (.)(.)
Thursday, March 4, 2010
So much to say ... so little time
I have so much to say and write about, but I sit in front of the page ... and ... nothing!! But, let me try and make an attempt as I am likely to forget all that I want recorded.
I met my new oncologist the other day and so far, I think I am going to get on with her. She spent more than an hour with me and listened to ME and why I want to stop treatment. I tried my hardest to not turn it into a bitching session, but unfortunately there were a few gripes I just had to get out and let go of .. and I did feel a whole lot better after having someone actually listen to me.
She looked at me and my treatment as a whole person and not just number 2099 - the cancer patient needing chemo. I really appreciated that. In a nutshell, she goes with my decision of not continuing with chemo on the condition that I pass a few tests that were never done. Those tests are today - bone density, other blood tests, etc. I shall know my fate tomorrow although I will still need to do radiotherapy and hormone therapy.
She was just a little concerned that there was a slight spike in my bloods the last time around, but she thinks it might be because I still (embarrassingly enough) smoke!
We better hope that I don't need to continue with the chemo now, because if I do, it means that the tests came out negative and I have cancer elsewhere. But that ain't going to happen!! I just feel it in my bones.
I also saw the guynie 2 weeks back who informed me that the hormone therapy I will be going on is high risk for uterus cancer and it is strongly suggested that I have a hysterectomy before the year is out. My oncologist confirmed this. My uterus is apparently the size of a 3 month pregnancy, which is not good as the fybroids she detected 6 months ago have not disappeared and my walls have thickened.
Anyways, I have so much to say now that I am on a roll, but have to get Jordan off to school in a very welcomed downpour of rain - a relief from the sweltering heat wave we have been experiencing (.)(.)
I met my new oncologist the other day and so far, I think I am going to get on with her. She spent more than an hour with me and listened to ME and why I want to stop treatment. I tried my hardest to not turn it into a bitching session, but unfortunately there were a few gripes I just had to get out and let go of .. and I did feel a whole lot better after having someone actually listen to me.
She looked at me and my treatment as a whole person and not just number 2099 - the cancer patient needing chemo. I really appreciated that. In a nutshell, she goes with my decision of not continuing with chemo on the condition that I pass a few tests that were never done. Those tests are today - bone density, other blood tests, etc. I shall know my fate tomorrow although I will still need to do radiotherapy and hormone therapy.
She was just a little concerned that there was a slight spike in my bloods the last time around, but she thinks it might be because I still (embarrassingly enough) smoke!
We better hope that I don't need to continue with the chemo now, because if I do, it means that the tests came out negative and I have cancer elsewhere. But that ain't going to happen!! I just feel it in my bones.
I also saw the guynie 2 weeks back who informed me that the hormone therapy I will be going on is high risk for uterus cancer and it is strongly suggested that I have a hysterectomy before the year is out. My oncologist confirmed this. My uterus is apparently the size of a 3 month pregnancy, which is not good as the fybroids she detected 6 months ago have not disappeared and my walls have thickened.
Anyways, I have so much to say now that I am on a roll, but have to get Jordan off to school in a very welcomed downpour of rain - a relief from the sweltering heat wave we have been experiencing (.)(.)
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