Had my first quarterly check-up with my oncologist on 13 September. There appears to be another lump in my right breast which she wants checked out. I am hoping it is scar tissue, but I must admit I can also feel a lump - and let's be honest, I am sure an oncologist knows more than me when it comes to tits. Crap!!!
The meds that I am on is to help the breast cancer not return, but it is high risk for uterus cancer, so I also had my guynie check up and we set my hysterectomy op for the 13 October, the same day last year that I was diagnosed. They will do an ultra sound on my boobs at the same time and should I need another biopsy (needle in tittie jol) then I am going to ask that they do it whilst I am under anesthetic. I ain't going through that again whilst I am awake!!
Even though there are new ways to do a hysterectomy, i.e. vaginally, they have to do my hysterectomy the conventional way (cut tummy). Because my uterus is full of fibroids it has contributed to my uterus being 7cm big (normal is 3cm). I was hoping to blame the big tummy on that ... but it's not true.
I have not been in a good space for a while now and I wish I could just shake it so that I can get back into the positive self that carried me through both my recoveries ... Perhaps after my op and convalescent quiet time, which I will try and use to gather my thoughts, I will get back to my old self and find my mojo (.)(.)
Wednesday, October 6, 2010
Wednesday, August 25, 2010
Last entry
Cancer and treatment seems long behind me now, hence the non-activity on this blog.
I continue to take my daily hormone therapy pills, which will be for the next 5 years. My periods have not stopped as anticipated, as the pills were supposed to bring on menopause. I think menopause is happening though as I have the dreaded night sweats. It is terrible having to go to bed in the middle of winter in the nod with a towel next to my bed ... real passion killer.
My next check up with the oncologist is on 01 September, only then will it be confirmed whether I need to take the medication that requires me to have an injection in my tummy for 3 years (because the periods haven't stopped). I also see my guynie on 30th August. Hysterectomy discussions, no doubt will happen then. I want to get it all over and done with this year so that hopefully next year will be a lot more productive and inspiring.
I have lost a lot of my desire to write, read or anything inspirational such as keep up with my recovery programme - although I did reach my 2 year milestone of sobriety on the 23 July - so I am still clean, but totally uninspired.
On that note, I guess this will be my last entry. For my own sake and memory, the next entry I make will be on my 5 year graduation date - which is round about 13 November 2014. This will be the date that there is absolutely no chance of cancer recurring. (.)(.)
As a final note - To my friend over the ocean - hoping that you still read this - because I would like to wish you a very happy 40th birthday for tomorrow - I shall be thinking of you.
I continue to take my daily hormone therapy pills, which will be for the next 5 years. My periods have not stopped as anticipated, as the pills were supposed to bring on menopause. I think menopause is happening though as I have the dreaded night sweats. It is terrible having to go to bed in the middle of winter in the nod with a towel next to my bed ... real passion killer.
My next check up with the oncologist is on 01 September, only then will it be confirmed whether I need to take the medication that requires me to have an injection in my tummy for 3 years (because the periods haven't stopped). I also see my guynie on 30th August. Hysterectomy discussions, no doubt will happen then. I want to get it all over and done with this year so that hopefully next year will be a lot more productive and inspiring.
I have lost a lot of my desire to write, read or anything inspirational such as keep up with my recovery programme - although I did reach my 2 year milestone of sobriety on the 23 July - so I am still clean, but totally uninspired.
On that note, I guess this will be my last entry. For my own sake and memory, the next entry I make will be on my 5 year graduation date - which is round about 13 November 2014. This will be the date that there is absolutely no chance of cancer recurring. (.)(.)
As a final note - To my friend over the ocean - hoping that you still read this - because I would like to wish you a very happy 40th birthday for tomorrow - I shall be thinking of you.
Tuesday, June 8, 2010
All done !!!
Finally finished my last radiation treatment yesterday at my home base Panaroma. The radiographers were very happy with the koek I took them to celebrate my release. I also impressed my oncologist by writing her a thank you message in AFRIKAANS. I did admit at the end of the card though that she should not be too impressed as I used Google Translate.
As I left she teased me by saying "I hope the withdrawals aren't too bad". "Huh!!! What withdrawals" thinking radiation side-effects. She laughed and said "from me and my girls". It is the second time she has teased me about this now, only because I was worried about something that the Rondebosch girls were doing and insisted on an appointment mentioning I was having separation anxiety. I don't think I am going to hear the end of it!!
My boob is looking much better - not so black and sensitive. The whole nipple skin peeled off and is looking rather anemic. The dam thing keeps pointing too - only the one boob mind you, which looks rather strange. When I mentioned it to my oncologist she said I should enjoy it ... hmmmm !!
So now I start on the hormone tablets for 5 years. After a break of some 3 months from my periods, it started up again on Friday. I need to go through menopause now with these tablets, IN THE NEXT 2 MONTHS, because if I don't then it is injections in my stomach for 3 years. Hysterectomy must wait until after this 2 month period.
My hair is so curly at the back ... I mean really really curly. The front and sides are normal though. Not sure if I like it too much, it is a bit fly-away for me. My doc says that it is a good sign that the chemo did its job - as it changed the DNA of all my cells and that I am lucky as 90% of the patients go grey even if they were not before. It should go back to normal after about 5 cuts.
Still feeling quite fatigued and demotivated ... hopefully this will come right soon, but I will give it until the beginning of July before I take myself too seriously. World Cup fever has hit, we are going on holiday to Knysna for 2 weeks ... I am wanting to have a dancing party for my birthday to celebrate Life ... so too much playing still to do before I can think of being motivated. (.)(.)
As I left she teased me by saying "I hope the withdrawals aren't too bad". "Huh!!! What withdrawals" thinking radiation side-effects. She laughed and said "from me and my girls". It is the second time she has teased me about this now, only because I was worried about something that the Rondebosch girls were doing and insisted on an appointment mentioning I was having separation anxiety. I don't think I am going to hear the end of it!!
My boob is looking much better - not so black and sensitive. The whole nipple skin peeled off and is looking rather anemic. The dam thing keeps pointing too - only the one boob mind you, which looks rather strange. When I mentioned it to my oncologist she said I should enjoy it ... hmmmm !!
So now I start on the hormone tablets for 5 years. After a break of some 3 months from my periods, it started up again on Friday. I need to go through menopause now with these tablets, IN THE NEXT 2 MONTHS, because if I don't then it is injections in my stomach for 3 years. Hysterectomy must wait until after this 2 month period.
My hair is so curly at the back ... I mean really really curly. The front and sides are normal though. Not sure if I like it too much, it is a bit fly-away for me. My doc says that it is a good sign that the chemo did its job - as it changed the DNA of all my cells and that I am lucky as 90% of the patients go grey even if they were not before. It should go back to normal after about 5 cuts.
Still feeling quite fatigued and demotivated ... hopefully this will come right soon, but I will give it until the beginning of July before I take myself too seriously. World Cup fever has hit, we are going on holiday to Knysna for 2 weeks ... I am wanting to have a dancing party for my birthday to celebrate Life ... so too much playing still to do before I can think of being motivated. (.)(.)
Friday, May 21, 2010
Chocolate or Vanilla (.)(.)
Phew ... what a ride!! And it ain't no joy-ride either. Apart from my hair growing beautifully, life has been tough for me ... physically, mentally and spiritually.
I should have finished radiation by the 24th, but my oncology unit got flooded out about 2 weeks ago. As a result I missed a few days and was then shipped off to Rondebosch where I have to travel daily until the end of my treatment. With all the World Cup road works, and the occasional downpour of rain, I can never quite judge the traffic properly. I am either 15 minutes early or 10 minutes late.
I saw my oncologist on Wednesday, at my insistence, who has put me on a week's break from radiation because my body, and right boob in particular is rather swollen. A week to heal, then the last leg of 7 days of intensive therapy zoning in where the tumor was.
My right boob and underarm is black ... much like a Zulu tittie ... very appealing. I am totally aware of my boobs all the time. It feels like I am wearing a wire bra that is 2 sizes too small for me. This at a time where I am at the "burn the bra" stage of my treatment. Yep, living up to my sexual orientation.
My skin under my boob has also opened, but they reckon that this will take about 2 weeks to heal after radiation. No different to having severe sunburn. The body is an amazing clinic of its own. It is the lung, muscles, breast tissue and bones that will take a little longer to heal - hence the fatigue I will continue to feel. I'm feeling the lung a bit with a very dry cough and sometimes waking in the middle of the night battling to breathe.
I feel so lost at Rondebosch, it is a new hospital with lots of renovations still happening. It is big and empty and feels like a ghost town. I am usually the only one in the waiting room. Although it is predominantly English, which should make me more comfortable as I can understand what they are saying ... I have to admit that I have gotten more fond of the Afrikaans poppies. I told my oncologist that I was having separation anxiety. She laughed and asked if I felt like a lonely orphan puppy. "I do, I do and I want to come home for some TLC!!" is my response.
My oncologist is the only part of this whole cancer thing that has made my experience remotely tolerable. She makes me feel safe. The one day I was lying on the radiation table and I smelt this awful smell and got the radiographers to wipe down the arm part of the chair. I thought someone had left their sweaty armpit smell there. Later that night, I smelt the same smell and realised it was me. It was not a BO smell, and I have never suffered from BO, it was more like a burnt come soggy, old lady skin smell. And it was only on my right boob and not the left boob. I was terribly embarrassed the next day when I told the radiographers about it, especially when they laughed and said it was because I have not been washing. I am not allowed to rub the area or wash it with soap, but I have been squeezing my sponge over it and having bubble baths to try and get some form of cleaning on it ... twice a day even. So this didn't seem right. The next day I thought ... fuck it ... and washed the whole area thoroughly - and the smell was still there. When I asked my oncologist, she confirmed that it was the dead skin cells that contributed to the smell. At least she didn't laugh. The bathing however did not help as it does keep the skin soft when moisturized by soap or bubble bath which leads to peeling - hence the dead skin cells.
It is hard to tell if the "happy pills" have kicked in with my energy-levels so low, but Hil seems to think I smile a lot more than before. My periods have totally disappeared, a good 3-4 months now, which I am not too unhappy about. I can't say whether the lack of periods is due to menopause or medication as the happy pills might have contributed to me not being bitchy as a sign of one of the symptoms.
Motivation is still at an all time low to get excited about anything. If I didn't have to go in every morning, I'm not sure if I would even have the energy to shower. My hair is getting to the stage where you can tell if I don't shower in the morning. You know that "just shagged" out of bed look - hehe, I wish. The hair is going very curly now. I have little ringlets at the back and wispy fly away sides that is long enough to cover my glasses - just long enough. The brush even makes an impression with any form of styling effort. No fringe yet, but the top of the head is just long enough to hold between 2 fingers. With all this lovely hair growth also comes the shaving and waxing schlep again, and I must say I did enjoy the pain-free "hollywood" while it lasted.
I still need to post photos and will do so as soon as I find what I am looking for in the way of ... yaaaawn ... um ... ja, that!! (.)(.)
I should have finished radiation by the 24th, but my oncology unit got flooded out about 2 weeks ago. As a result I missed a few days and was then shipped off to Rondebosch where I have to travel daily until the end of my treatment. With all the World Cup road works, and the occasional downpour of rain, I can never quite judge the traffic properly. I am either 15 minutes early or 10 minutes late.
I saw my oncologist on Wednesday, at my insistence, who has put me on a week's break from radiation because my body, and right boob in particular is rather swollen. A week to heal, then the last leg of 7 days of intensive therapy zoning in where the tumor was.
My right boob and underarm is black ... much like a Zulu tittie ... very appealing. I am totally aware of my boobs all the time. It feels like I am wearing a wire bra that is 2 sizes too small for me. This at a time where I am at the "burn the bra" stage of my treatment. Yep, living up to my sexual orientation.
My skin under my boob has also opened, but they reckon that this will take about 2 weeks to heal after radiation. No different to having severe sunburn. The body is an amazing clinic of its own. It is the lung, muscles, breast tissue and bones that will take a little longer to heal - hence the fatigue I will continue to feel. I'm feeling the lung a bit with a very dry cough and sometimes waking in the middle of the night battling to breathe.
I feel so lost at Rondebosch, it is a new hospital with lots of renovations still happening. It is big and empty and feels like a ghost town. I am usually the only one in the waiting room. Although it is predominantly English, which should make me more comfortable as I can understand what they are saying ... I have to admit that I have gotten more fond of the Afrikaans poppies. I told my oncologist that I was having separation anxiety. She laughed and asked if I felt like a lonely orphan puppy. "I do, I do and I want to come home for some TLC!!" is my response.
My oncologist is the only part of this whole cancer thing that has made my experience remotely tolerable. She makes me feel safe. The one day I was lying on the radiation table and I smelt this awful smell and got the radiographers to wipe down the arm part of the chair. I thought someone had left their sweaty armpit smell there. Later that night, I smelt the same smell and realised it was me. It was not a BO smell, and I have never suffered from BO, it was more like a burnt come soggy, old lady skin smell. And it was only on my right boob and not the left boob. I was terribly embarrassed the next day when I told the radiographers about it, especially when they laughed and said it was because I have not been washing. I am not allowed to rub the area or wash it with soap, but I have been squeezing my sponge over it and having bubble baths to try and get some form of cleaning on it ... twice a day even. So this didn't seem right. The next day I thought ... fuck it ... and washed the whole area thoroughly - and the smell was still there. When I asked my oncologist, she confirmed that it was the dead skin cells that contributed to the smell. At least she didn't laugh. The bathing however did not help as it does keep the skin soft when moisturized by soap or bubble bath which leads to peeling - hence the dead skin cells.
It is hard to tell if the "happy pills" have kicked in with my energy-levels so low, but Hil seems to think I smile a lot more than before. My periods have totally disappeared, a good 3-4 months now, which I am not too unhappy about. I can't say whether the lack of periods is due to menopause or medication as the happy pills might have contributed to me not being bitchy as a sign of one of the symptoms.
Motivation is still at an all time low to get excited about anything. If I didn't have to go in every morning, I'm not sure if I would even have the energy to shower. My hair is getting to the stage where you can tell if I don't shower in the morning. You know that "just shagged" out of bed look - hehe, I wish. The hair is going very curly now. I have little ringlets at the back and wispy fly away sides that is long enough to cover my glasses - just long enough. The brush even makes an impression with any form of styling effort. No fringe yet, but the top of the head is just long enough to hold between 2 fingers. With all this lovely hair growth also comes the shaving and waxing schlep again, and I must say I did enjoy the pain-free "hollywood" while it lasted.
I still need to post photos and will do so as soon as I find what I am looking for in the way of ... yaaaawn ... um ... ja, that!! (.)(.)
Sunday, May 2, 2010
Still under construction
It's been a while since I posted something. I have had a lot to say and share from my experiences, but needless to say the motivation and energy is lacking.
Radiation is going well as it is painless and quick. I did however underestimate the energy that it would zap from me. My doctor, who I love to bits, reckons that as my healthy cells are also being zapped, the body uses up all my energy to heal. So what can I say, I am forced into 7 weeks of arvie naps and the like.
On top of this I am without office as I move over for yet another 5 week job that needs my office to meet deadlines. So with a houseful of people, no office to do anything else, routine gone astray, energy levels really low ... has led to my motivation being at an all time low. So I have been doing a lot of playing, sleeping, shopping, eating ... oh and did I say playing playing playing.
Unfortunately this has led to a lot of unmanageability in my life which is really unsafe for my other recovery and has led me astray to play - but I am glad to say that I am still alcohol-free and heading towards my 2 year clean time. Hil has said, I need to learn a bit of flexibility in my life. If I am like a rigid stick that has no bend, I will break. Never really thought I was like that, but I guess I am when I am so focused on maintaining something.
Sometimes I have felt quite down emotionally and put it down to the unmanageability in my life. My doc explained to me that my serotonin levels would have been depleted through both my recoveries and as my energy levels are so low it is even more difficult for the body to naturally produce them. So I have been given medication to help it along ... the good old "happy pills".
During my shopping expeditions, I even went out and got myself a new laptop, but have just not had the energy to set it all up - after some 3 weeks already. So unlike me when it comes to new toys.
As for the tits ... I have one very brown one and one very white one. From time to time I feel little sharp pains in the tittie being treated, much like I felt after the operation. But it lasts for a mere second or two.
My hair is growing back beautifully and I love it. I have a head full of hair with no bald spots, and it even styles to the side if I push it immediately after a shower. It is still too short for a brush or comb to have any effect. It feels so soft and velvety like a new born baby or a cat. It is a little fairer than normal, but straight where most people's hair grows back curly and grey (well the older ones at least). For a brief moment we thought my fairness was grey, but it is simply bum-fluffish. My doc says that I have a lot more pigment in my hair than most. Infact the odd greys grow longer than the rest ... like a bean stalk, that they have to be cut often. I shall post a photo soon - once I figure out how to load my new camera :-)
I am due to finish radiation at the end of May. I am told that the fatigue will stay with me for a while after treatment - yawn - so I reckon I should just put this year down to ... we learn (.)(.)
Radiation is going well as it is painless and quick. I did however underestimate the energy that it would zap from me. My doctor, who I love to bits, reckons that as my healthy cells are also being zapped, the body uses up all my energy to heal. So what can I say, I am forced into 7 weeks of arvie naps and the like.
On top of this I am without office as I move over for yet another 5 week job that needs my office to meet deadlines. So with a houseful of people, no office to do anything else, routine gone astray, energy levels really low ... has led to my motivation being at an all time low. So I have been doing a lot of playing, sleeping, shopping, eating ... oh and did I say playing playing playing.
Unfortunately this has led to a lot of unmanageability in my life which is really unsafe for my other recovery and has led me astray to play - but I am glad to say that I am still alcohol-free and heading towards my 2 year clean time. Hil has said, I need to learn a bit of flexibility in my life. If I am like a rigid stick that has no bend, I will break. Never really thought I was like that, but I guess I am when I am so focused on maintaining something.
Sometimes I have felt quite down emotionally and put it down to the unmanageability in my life. My doc explained to me that my serotonin levels would have been depleted through both my recoveries and as my energy levels are so low it is even more difficult for the body to naturally produce them. So I have been given medication to help it along ... the good old "happy pills".
During my shopping expeditions, I even went out and got myself a new laptop, but have just not had the energy to set it all up - after some 3 weeks already. So unlike me when it comes to new toys.
As for the tits ... I have one very brown one and one very white one. From time to time I feel little sharp pains in the tittie being treated, much like I felt after the operation. But it lasts for a mere second or two.
My hair is growing back beautifully and I love it. I have a head full of hair with no bald spots, and it even styles to the side if I push it immediately after a shower. It is still too short for a brush or comb to have any effect. It feels so soft and velvety like a new born baby or a cat. It is a little fairer than normal, but straight where most people's hair grows back curly and grey (well the older ones at least). For a brief moment we thought my fairness was grey, but it is simply bum-fluffish. My doc says that I have a lot more pigment in my hair than most. Infact the odd greys grow longer than the rest ... like a bean stalk, that they have to be cut often. I shall post a photo soon - once I figure out how to load my new camera :-)
I am due to finish radiation at the end of May. I am told that the fatigue will stay with me for a while after treatment - yawn - so I reckon I should just put this year down to ... we learn (.)(.)
Wednesday, March 31, 2010
Phase 2 - after Easter
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 (.)(.)
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 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 (.)(.)
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