Last Hurdle

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 (.)(.)

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.

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. (.)(.)

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!! (.)(.)

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 (.)(.)

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 (.)(.)

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 (.)(.)

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 (.)(.)

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 (.)(.)

C'est La Vie

In the middle of writing my blog the other day, I stopped to write this email to my new oncologist:

Dear Dr X

I got a call from your PA yesterday confirming that you are happy to take me on from Dr XX. Thank you for this.

Would it be at all possible if I could ask you to give me the survival statistics if I had to stop all treatment now. I know this sounds like a rather rash request, but as I am only on precautionary treatment, I need to weigh up my odds as I am truly frightened of having to experience another episode like my last chemo treatment, where they battle to find a vein. Dr XX has suggested that I have a port put in, but I don’t really want to go that route as I have negative feelings towards it after my friend died 5 years ago from septicemia from the port, after just going in for a normal chemo treatment.

Much appreciated if you could let me have these stats.

Not surprising to not get my stats, but I did get this reply:

Please come and see me. I would like to have all the relevant information and then we can make a rational decision about it.

I am yet to make the appointment, but I will today. Although I think I have already made up my mind. My decision has had signs of confirmation (i.e. answered prayers and continuing synchronicity) which I shall write about another day for remembrance purposes.

As I have not made my final decision, I do pray and request that whatever that decision may be, that my friends and family will accept it as my decision and not try and talk me out of it. I have very good reasons for wanting to make this decision, and it is not just the reason of being frightened. All I can say now is that I should have listened to my intuition from the beginning, but I didn't. My faith, however has never been stronger than it is NOW (.)(.)

Decisions ... decisions

There is nothing sweeter than waking up after a good nights sleep, feeling well. It was a scorcher last night, but with the doors wide open allowing the night cool to blow through the room, it is kinda refreshing to wake up at 6am feeling a little chilly.

When I am well and feeling grateful for being well, it is amazing the things I notice. It is quite a weird physical feeling being hairless. We all know what it is like to have that silky smooth feel of a newly shaved leg, but my legs feel so different now. I almost feel every cell on my leg when the wind blows against it. What makes me feel each cell is the odd hair on my leg that has survived the onslaught. It almost stands proud, blowing in the breeze, excited to get noticed.

My skin definitely feels much smoother all around. My nails grow almost before my eyes, I am forever cutting them. The point is ... I FEEL ... the bad and the good. I feel the emotional gloom and doom when I am sick as well as the joy and hope when I am well. I love being well.

I did the deed with my oncologist who surprisingly responded in a professional manner and has moved me over to a new female oncologist who specializes in breast cancer. I have not met her yet, but anything is better than dreading the oncologist consultation as much as the chemo.

Thursday's chemo experience was quite traumatic for me and I am not sure how I am going to face the next 4. I feel that I must be the biggest baby on earth, but I can't help feeling absolutely petrified about the whole thing. It is like the phobia of phobia's kicking in for me. It got to the point that I was telling Hil that I am more frightened of medical stuff than of dying. I have to force myself not to think about it otherwise I already start feeling the panic inside of me. I am seriously considering asking my new oncologist to give me the stats for survival if I had to stop all treatment now, then weigh up the odds.

I know this train of thought scares the shits out of my friends and family, but I have to do what is right for me. My faith is stronger for survival when I am feeling well without poison in me. I really need to pray about this as I feel confused and befucked about the whole thing and I want the decision to come from me and not be advised anymore. I have never felt comfortable with the advice I have gotten up to now and I can't get rid of these nagging doubts of discomfort (.)(.)

Monday, Tuesday ... then W T F

One of my worst nightmares has happened. My veins have given up the ghost. Yesterday was the worst chemo experience ever. They couldn't find a vein that worked as my arteries have hardened, so out of desperation they had to get permission from the oncologist to use my right arm. They are not supposed to use this arm because of the operation. I guess it has to do with interference to the remaining nodes that are still trying to survive. But then again, what do I know - I ain't no doctor. I'm just making an educated guess!!

If they had not gone to the right arm, I was ready to walk out and say fuck it all as I am sure the next option would have been my feet - and that is no joke!! They also can't use the veins near the joints, like by your elbow. I was told that I don't have the best veins in town, and even though I thought they were pumping because I can see them through my skin, the sister showed me in comparison to hers what pumping really is. My veins are too deep.

I was on the verge of hysteria yesterday - crying and shaking uncontrollably. They had to drug me to calm me down. It is important to be calm otherwise the veins contract, and then it is impossible to find anything. One good thing though, I got to go on the bed and with the help of the drugs, slept through the whole thing after that.

I may have no option but go the stint route. This requires a small operation and a foreign object in my body for a year. It seems like a drastic measure considering I only have 4 sessions left and "why a year?" I asked. The answer "You might need to have more chemo after your 6 month test". Oh joy, just what I needed to hear. They are also aware of how I feel about this stint considering my friend Rhona died of septicemia from it when she was going in for a normal chemo treatment!!

Today I have decided that I am also going to fire my oncologist. I just don't warm to him and I am sure he contributed to my already emotional sensitivity that I had prior to going in. I have now finished the "red devil" chemo. The next lot is a new type of chemo which requires a whole lot of new drugs ... of which one of them is 16 cortisone pills per day.

It was hard to comprehend everything - take this 3 times a day, that 2 times a day, this 16 times a day - the drugs all have similar sounding names as well. When we asked him to repeat it for lack of comprehension, he suggested that we perhaps bring a tape recorder the next time. WTF!! If I want him to repeat it 10 times and/or write it down so that I fully understand, then surely I am paying for that privilege.

He has also cost me more unnecessary cost with the R200 a pop puke pill which we had just got another course of as we did not have enough for this last chemo treatment (and they only come in certain pack sizes) - cost R2000. He casually tells us, "oh those are no longer needed, and I am sure your chemist won't take it back"!! WTF!!

When I told him my ongoing concern about my weight gain and bloated feel, he casually says "I have told you to watch what you eat". Then in the next breath tells me to get a kidney test as it is not right that I should be bloated with this session of chemo - "it only happens with the next set of chemo". More joy!!

Right now, all I want to do is go back to bed ... feeling rather miffy and emotional. I have also just received an email joke from Lorraine that sums it all up - A fact of life is that after Monday and Tuesday, even the calendar says W T F! (.)(.)

Talk to the hand ... or forehead!!

It seems ages since I last wrote, and it has been ages. Probably just as well though, my mood swings have been horrendous and not worth sharing. I don't like to spend too much time wondering why I am feeling a certain way, just in case I come up with THE perfect reason ... you know. It does sometimes scare me though when my rages over a stupid incident seems to be out of control.

I'm not currently in a happy space, but I have noticed that this does tend to occur a few days before each treatment. Perhaps it is the dreaded anticipation. I am also feeling fat, bloated, ugly and uncomfortable. Tired too, very tired!! One would have thought a weekend away would have cured this tiredness, but Daphne didn't fail to annoy us last night with her 1am, 2am, 3am and 4am calls. I think she was just being bitchy as a pay-back to leaving her with Tutu over the weekend.

The other night, during one of those Daphne wake-up calls, both Hil and I couldn't get back to sleep, so we chatted for a couple of hours and tried to get back to sleep around 4am - bad decision as you feel like shit the next morning. After about 20 minutes of silence during the "back to sleep" time, I just burst out laughing. Of course Hil wanted to know what I was laughing about. I was thinking about our friend Rhona who died of cancer about 5 years ago. She was divorced and had her first boyfriend just before being diagnosed. Rhona was a beautiful blonde and we couldn't believe the boyfriend she chose - he was a real dog compared to her good looking ex.

What pissed me off about him was that he helped Rhona shave her head and then dumped her because she didn't do it for him anymore. What a cheek when he was no oil painting himself. What made me laugh was that Jordan was only 5 at the time and on first meeting this creep, his first question to him was "Why is your nose so big?" My God, I wanted to die at the time, but now I just think ... precious child! Out of the mouth of babes the most innocent truths come out, unintentionally, but as a grown man, this guy should have known his insensitivity would have hurt Rhona. I'm also not surprised Jordan asked, because none of us could believe how big his nose was. You know when you are really trying not to make eye contact with THE NOSE to make the shock so obvious, but instead the obviousness comes in when you talk to their forehead!! LOL

I took Jordan to school this morning and only remembered half way that I forgot to put a hat on. Jordan generally insists on headgear. When I mentioned "oops" to him, he just said, "well Mom, don't come out of the car and just drive away very fast". He still doesn't like it even though he did say that he has forgotten what I look like with hair.

Other than arm bones and hands aching, which is being helped a lot with physio, not much else happening on the symptom side. Blood tests tomorrow and 4th chemo on Thursday, which at the end will be the half way mark in terms of chemo (.)(.)

Sun Shinny Days

Good Morning DARREN ... hope you survived the traffic and are sitting nice and calm now enjoying your cup of morning coffee!! :-) I felt so great after last night's meeting and it was fantastic to see so many people. You, of course are always our shining beacon with your readily smiley face. ;-)

You see, this is why I make a weekly post now, as I have nothing to say about my cancer journey. Life has gone back to being LIFE on life's terms. I am however looking forward to a weekend away this weekend. No animals, no sleep deprivation. One really needs that break from routine at least once a month. Breakfast buffet, beach, fishing, putt-putt, market visits, afternoon naps, scrabble championship by the pool, a spot of tennis, seafood dinners. Yep, that's what I am after - good quality time with my family. Koekie Koekermoer is coming along too, I sure hope she has practiced her scrabble skills, I do need the competition.

The weekend before each chemo is when I know I will feel my absolute best, so I am thinking that the second weekend after every treatment is going to be an away weekend. I can't believe that Round 4 of chemo is already next Thursday. Oh well, I will officially be at the half way mark then.

Back to the grindstone for now - isn't there a song like that "Like a grindstone cowboy" - maybe not. I read somewhere that a job is what we do for money, but work is what we do for love. I am so grateful that 90% of the work I do I really enjoy, so for me when it is a sun shinny day outside, it is an added bonus. Work, swim, work, eat, work, sleep, work, play (.)(.)

New Moon Rising

This week gone by I accomplished quite a lot. I klapped the 3rd round of chemo without much strain. Started and completed the fieldwork of a market research project. Went to a tennis and cricket match that Jordan made the team for. Been out on 3 dinner dates. Attempted to re-start my exercise regime with a walk on the beach ... it failed however when my scooter ran out of petrol. Went shopping twice - first round bought me a great pair of track shoes and second round 2 nice hats. Went to physio. Visited the travel agent to start planning our holiday for when treatment is finished, which I worked out should actually all finish around 05 July 2010. I'm not sure how I thought it would all be over by the 01 September, I suppose this is the date I had in my mind for when I expect hair to be on my head.

I also managed to put on another kg ... up to 5kgs now!! I asked the oncologist about this weight thing, and he confirmed that the chemo does slow down the metabolism - which lack of exercise is not helping much. Hence my attempt to get back in the saddle of exercise.

I still believe that the steroids and cortisone are to blame for my healthy appetite which sees me pigging out for up to 4 days after each treatment. I am generally not a pig-out eater, so what other explanation could there be!! It does seem to settle into a normal eating routine from about day 5. The concern and discomfort of the weight gain has accelerated me into action though - i.e. new eating habits and exercise attempts - so this is a good thing.

Chemo experience seems to be getting better. I had the best (Lazy-Boy) seat in the house for the Australian Open Men's Semi-Final. I think I watched all of 2 serves though. I was sitting next to a chatter box, and next thing - I looked up at the TV and the whole match was finished, but so was my chemo visit. It went really quickly this time around and I was extremely grateful to Auntie Chatterbox. I am also becoming quite the pro with the needle routine. Emlo (numbing cream) is my best friend and I am so happy I found it. My white blood cells continue to impress but my veins still ache. The chemo burnt quite a bit this time around. When I asked the sister why, she said she didn't know. I jokingly said that I was glad she was not my oncologist with that kind of response to which she took great offence. Oops!!

My relationship with the oncologist remains a challenge. I find he treats me with contempt. Hil doesn't warm to him either. He has like a patronizing smirk on his face the whole time. You know the kind of face that is slappable. Because I had such a bad 2nd round of chemo, he ended up writing a whole bunch of prescriptions for me, which I might add has really helped as I have had very little symptoms this time around, apart from metal mouth and the slight hangover feel. When I asked him whether any of these drugs he was prescribing are addictive - he went through the list saying no, no, no and ended off with "and I have not found 1 person who has become addicted to chemo!!" I should have said "OMG, you made a joke!!" He actually said that no drugs that I have taken thus far and to do with cancer is addictive. He must have seen my eyebrow raise and read my mind saying "hello ... morphine??" because he answered my thoughts straight away which was quite an eye-opener to me. In fact, I am still wondering if it was an irresponsible explanation from a professional to a recovering addict. He said that not even morphine is addictive if it is administered properly. Huh!! He reckons that people get addicted to the euphoria that morphine creates, but if one doesn't allow the morphine to drop, but keeps it at a constant level, the patient would never feel that euphoria. Interesting.

One thing he did make me feel better about is when I told him that I don't seem to have the same faith as other people when it comes to chemo "saving my life" and I was in fact pissed off about having to take it. He confirmed that I have every right to be pissed off and that it was normal for me to feel that way because I was taking it for preventative purposes and could not see the results of my efforts. So that made me feel a bit better. Somehow, getting it all out (bitching and moaning) seems to have changed my perspective a bit as I am working with my treatment and allowing it to fit in with MY LIFE. I make the most of and look forward to the 2 weeks in between treatments when I feel really well.

I have become quite comfortable with my baldness, although other people remain to be uncomfortable. I have realised that their discomfort is probably still related to not knowing how to handle the subject of cancer, which clearly is what my baldness indicates - either that or they don't know how to tell me how strange I look. I find myself playing with it now - you know, shock tactics. Like when I went hat shopping. It is nothing for me to take off my bandanna and try on hats. But when I saw a young girl do a double take with a gasp, I immediately stared back at her so that she had no option but to face her own discomfort, to which she realized she had been caught out and could do nothing else but sheepishly smile at me. I then continued as though it was the most normal thing for me to be.

My little dog Emily has become so protective over me that she even growled at Amy who also wanted to get close to me on the couch - it is so unlike Emily to do something like that ... fight with Amy. Emily follows me everywhere, afternoon naps, office, couch. I wonder if she senses something different in me.

I have never been a vampire movie fan - like New Moon Rising, True Blood, etc - but I have noticed lately that I tend to admire other people's arm veins. Imagine the fantasy world I would be living in if I were a fan of those movies!!!

My week also included the exciting news of a new addition to our family soon - yep I am going to be a Great Aunt ... sorry Kerry, I couldn't resist putting out another advertisement (.)(.)

Ten ton tessie is not tassle tossing

The beginning of this week saw me feeling on top of the world and feeling good, positive and productive. To the extent that I have decided to look forward to the 2 weeks in between treatments where I feel physically well.

After an extremely bad fatigue day yesterday, I am not feeling so positive today. It's a bit of everything that has been chipping away at the old block of positivity. Firstly, I now have 3 people whom I consider to be my bosom buddies, as they are in the same position of treatment as me, and/or in the position of "been there, dun that". All 3 have had bad news since I last chatted to them. All 3 still show signs of positivity and friendliness towards chemo. It made me realise just how serious and silent this killer disease is. It has also shown me how much I am lacking in my faith of the chemo. I just don't know how to get there. To that place where I feel that chemo is saving my life.

Secondly, I feel the effects of not writing. The fact that I originally wanted to use up the time on fun projects, did not happen. Instead a job came in, which I should be grateful for, but I am rather feeling resentful towards because of the fact that it is using up my precious time and forcing me to do things I am not enjoying. It is a "hurry up and wait" job. When the "hurry up" part comes in, I have no energy to do it, thus creating what feels like the onset of procrastination.

Thirdly, all the weight I encouragingly lost from giving up the booze, is slowly piling back on ... thanks to chemo. It seems that I am putting on 2kg per treatment. If this is true, then FFS, I will have an extra 16kgs to lose at the end, on top of my 14kg I was doing quite nicely losing. The physiotherapist tried to encourage me yesterday when she said that it is a good thing to put on weight. When my immune system is really down, then I will have reserves to feed on. I think it would have been more encouraging if she were in shape herself. She was grossly overweight. But shame, she was very sweet and may actually have a point - despite the fact that I have to face not fitting into my clothes on a daily basis. And I certainly don't want to go shopping for "fat clothes".

The picture I posted today is actually a joke, I have not really been eating any more than usual since I was told that the steroids they are giving me is not enough to warrant the healthy appetite I experienced during my first round of chemo.

My bald head continues to pose as a threat to some people. Often I forget I am bald and when someone new visits (like a supplier or something), they have that expression of "OMG, how do I hide my reaction" look on their face. I have wondered if it is subconsciously affecting me as I seem to be isolating a bit lately. Last night I even opted to look after Jordan because it is a school night (rather than get Tutu to sleep over, which she normally does on a weekly school-night basis) rather than go out with a group of friends for dinner. Hil ended up going on her own. But then again, I was fatigued and not fit for human consumption, so why put anyone else through that energy-drain.

On the bright side, Jordan is back to normal and the routine implemented since school holidays is steadily underway. The problem all started when he refused to do his work at school. We have not gotten to the underlying reason, but I was a little hurt to find out (quite by chance) that the subject he refused to work on was about "My family". I would love to conveniently blame this on cancer, but if the truth be told, sometimes parenting is so challenging that I often wonder if we are fucking up. But it is more than likely due to the fact that he wasn't feeling very warm toward us on that particular day because of the stringent new routine in place that he is rebelling against.

Round 3 of chemo tomorrow with blood tests today ... aaarrrggg!!! If only the song "onward christian soldiers, marching into war" could do it for me (.)(.)

All good things ... expand ... not come to an end

I am battling to write lately. I don't feel as committed to this blog like I have been since the beginning. I feel that daily postings is going to be a thing of the past.

Quite frankly, I have different things I want to expand on and/or worry about - more than cancer. Right now, our biggest concern is Jordan's behavior - he is testing boundaries left, right and centre and it is completely exhausting. He does have a lot to cope with at present - new grade with a whole new ball game of harder work, new teacher much stricter to what he has ever known, me and the unpredictablity that lies ahead as well as his conflicting feelings of the NOW. He is playing out big time and it is hard to get through to him. This is where our main focus is going to be for now.

I started making posts on MyPicanninJordan blog - this could help counteract the immediate challenge as it takes me to the good points and memories of Jordan.

As for my cancer - I live with the disease on a daily basis, but my journey and experiences is not all about this disease. This is where I need to expand, as I am finding it difficult to make a post on the subject when I have not had an experience relating to it. By not making a post however, I risk losing a memory that I want noted. So for now, I will commit to a weekly or bi-weekly post - infact whenever the mood or experience has something to say - but I will not let it go longer than a week, for my own sake.

My expansion, and new self-made projects that I am working on is taking me to where I want to and need to be. That is working on my other recovery in a way that will end up helping other people. This is the next step of recovery for me - keeping what we have by giving it away. Although this project is going to end up being very lucrative, it still feels like a part of a "service-role" for me. So watch this space in 2011 when my efforts will be launched.

Synchronicity still remains a big part of my life. On Saturday 23 January I will be 18 months clean. This is a recognizable milestone in recovery. It was only yesterday I was wondering which meeting I should go to - to collect my "little black number" key-ring. During the day I got an email from a recovery friend asking for help on a specific subject that I know lots about. So my celebration was chosen for me, which includes me having to give a share at a specific meeting that has a lot of newcomers. Service, service, service ... and it feels good. It also felt like an answer from God about my recent frustrations and confusions of "where to from here?" Which, has led me to making a decision that now feels like the right path.

On top of that - I still am in regular contact with Oriah (oh yes, we are on a first name basis now). In Zimbabwe, we were taught to show our respect to others by calling them Mr and Mrs unless they approved otherwise. It is a little old fashioned these days, but I still hold those "respect values". However, it is unlikely I would call her Mrs Mountain Dreamer or Mrs House (her real name), but when referring to her, I would normally, out of respect, say her full name ... but no ... we are one-to-one now baby :-). The fact that she wrote this to me yesterday "Laurie, congratulations - on sobriety and on opening your heart to yourself. Yes!" is another confirmation of a prayer answered - so it is all good and I am feeling complete gratitude (.)(.)

How childish

I survived yesterday's fatigue that happened to last the whole day, even though I kept promising myself every 5 minutes that I was going to go back to bed. It must be the "white blood cell drop" that they talk about that hits around day 10.

The thing is, I am working on a project that I am thoroughly enjoying. It's regarding that idea I had a couple of days ago in the early hours of the morning. It is starting to take shape now as I put action to it. It helps a lot that this project takes care of 3 of my goals for 2010 and is fun to do with very little energy required.

So now, this 45 year old woman has a body of contradiction. New born head, 20 year old tits and 10 years old elsewhere. It gives a whole new meaning to Jack Black's statement of "never underestimate the power of the eyebrow". Lone survivor, together with dem eyelashes, so far. Oh God, I hope they survive until the end. I am led to believe that they may start thinning after the 4th treatment.

I certainly don't want to be taking my family doctor's advice of the early days regarding my eyebrows. He reckons, "just go with the mood, if you are feeling angry then draw Nike eyebrows that gives you the frown look. If you want the surprised look then turn the Nike ticks upside down". Great help he was!! It was funny at the time, but I can't see myself laughing when the time comes (.)(.)

Laughter is the best medicine

I'm feeling a little wacked this morning, although I think it is more due to a late night than anything else. I can't feel the difference between fatigue and late nighters. 10 minutes with "morning Jordan" is enough to wake anyone up though.

I am pleased that I got through a very productive day yesterday and accomplished everything I set out to do. I even got to a meeting last night. The first with no hair, but I wasn't brave enough to go "Adam & Eve". I did show my friend Michelle the new look on the way to the meeting, to which she thought it looked absolutely fine. But, when I offered to show another friend, he said "no please don't take the bandanna off!!" It made me realise that not only do I have these awkward feelings of exposure, but so do other people. I wonder why that is? What makes people uncomfortable to have to face something out of the ordinary? Well it certainly did a lot for self-confidence!! Luckily I am not the type of person who gets stuck in a place that worries too much about what other people think, well I never used to be!!

My hand veins are aching. The hand where the chemo needle goes in. They still look pumping, so hopefully this isn't the start of their downhill. I don't want to be that person where they have to prick 13 times before they can find a vein. And, I definitely don't want a stint in my chest.

I had such a nice visit from my friend Chantal yesterday. OMG, did she make me laugh with her rendition of the interview she had just been on. To the extent that my tummy and cheeks hurt and the tears were rolling. It is true, laughter is the best medicine and it gave me that extra bit of energy boost that one always needs during the afternoon slump (.)(.)

Pants to the ground

I feel 100% today. Infact, I have been feeling on top form for the last couple of days already. Had a great weekend relax mainly spent by the pool braaing with friends and lots of lovely reading. I even forget that I am bald most of the time. Mostly, I am comfortable with myself, but I do get the odd fright when I pass the mirror still.

Today I am going to make every effort to put in a good days work and be productive. It's like writing - some days I don't feel like it, but then I remember a quote I read many years ago - "Don't wait to find inspiration before you write, just write and inspiration will find you" - so let's hope the same applies with work. I generally enjoy working, so it shouldn't be a major problem. It's just the energy levels that are dodgy and let me down - but with all the resting I have been doing, hopefully I am fully recharged.

A challenge that still remains for me is this nagging thought that I am already cancer-free. I honestly don't feel like I have cancer and nobody can verify this fact. Even after all the treatment that is recommended, there is nothing in the end that will confirm this. Everything is left up to the patient to self-diagnose. No blood test, no X-Ray, no doctor can confirm where I am at now or in the future. When you still have a tumor, you can at least see the progress of what chemo is doing by the shrinking. In my case, it is all guess-work. I am not complaining or unhappy with the route I have taken (op first, then chemo), I just have these nagging doubts that I have cancer.

I also don't want to get "canceritis" - always on full alert of symptoms for the rest of my life because of it being my responsibility to self-diagnose. You get a headache and want to hypochondriach-tily go to the doctor. Chemo and radiotherapy, on the other hand can cause permanent, irreversible damage and effects to the body. Think about it, radiation is not good for anybody, which is why radiographers take every effort to leave the room during x-rays. I do believe it kills the cancer cells, but it dam well kills everything else in its path, forever. All it takes is for the radiation to be slightly off-mark, and BAM, you are fucked for life. My doctor visits in the future will more than likely be related to chemo and radiation-damage more than cancer scares. This is not a comforting thought at all.

Although it doesn't sound like it, I am actually in quite a peaceful, serene state at the moment. I have been doing a lot of internal reflecting and contemplating. I am not forcing myself to reflect, it is happening naturally and is proving to be quite comforting.

I'm still finding TV to be quite intrusive, especially whilst I am in this state. I must admit though, I did enjoy watching the start of American Idols last night but do wish I could get that song off my mind ... "Pants to the ground, Pants to the ground, looking like a fool with my pants to the ground" - not sure what the title of that song is (.)(.)

Baby step expose

I figured that it might be a good idea to work with what I have. I mean, let's be honest, fat looks so much better brown than white and bald looks so much better exposed than dooked. With this in mind, I decided to go public and do the "Sinead O'Connor" expose at a shopping centre.

At first, I was a little shy and asked Hil not to leave me. Normally she is unable to sit still for more than 5 minutes and goes off shopping whilst I finish my coffee or read the newspaper. Today, she kindly just fidgeted at the table until we were finished, and then we did the bank thing and left.

I did get the odd glare, but I tried not to show my shyness and walked with my head held high. I think it might be worse when I bump into someone I know. Baby steps for now and before you know it ... I will be flaunting it man!!! Strutting my thing with hips a-swingin and a-swaying. The brown blubber will be hidden though. :-)

I got such a nice chart from a new friend Karen. She is also going through the same thing as me (in Jozi). Karen created a chart/game with a hole bunch of sick and sad looking emoticons - she calls them FACC's (Fucking Alien Cancer Cells). Then there are a bunch of pink daisies that you cover the FACC's with each passing day (each daisy gets a name of someone who has supported us through this dreadful time).

That's the one cool thing about this journey. There is almost like a fraternity amongst us patients who just want to help each other. Like I have mentioned before, there seems to be a bond that gets formed as we relate to each others suffering and hoping. Awesome I tell you.

Feeling so much better today - only took one puke pill. The milder one called Clopaman - I will never forget the name of this pill as it sounds like "klap hom man" ... so it is no surprise that I have the urge to say as I swallow them "klap hom bokkie, klap hom" ... Afrikaans chemo lounges make me think the weirdest things! (.)(.)

Girl Power

The sickness is definitely subsiding, I just wish the metallic taste in my mouth would go with it. The motivation to accomplish something productive is very much deep in the heart of Lostville. One would think that the 2 would be found together!

One thing I have discovered with being bald is that, being gay, I have got a full license now to really go "diesel dyke". Yet, I have never felt more feminine in my life. I wonder if they put something in my mooty? I've become a real girl of late. Crying, emotional, pinkie pointed up as I drink my tea. Okay, it hasn't gone as far as wanting to invite you all to a tupperware party to do the girl-gossip thing, or to go out and purchase a whole wardrobe of frilly frocks, but my femininity is very much alive and well, and it is refreshingly comfortable.

My bald head is also attracting a lot of welcomed affection. Hil kisses my crown every time she passes it. Makes me feel like a princess wearing my tiara (girl evidence again!!) or the halo being shined. Every day there is something new that someone finds on my head. Apparently I have a few faint freckles at the top, but then again it could also be dirt.

Jordan also has some comment to make every so often. Last night, with the weather being in the 30's, we had the fan on in the lounge. Jordan wanted to see how our hair would go when the fan was on full blast. When it was my turn, it was a case of "Your turn mom" looking at my head he embarrassingly said "oh ja, I forgot" ... what a laugh we all had as it was a genuinely innocent oops.

What to do today?? It's silly to get stuck into work when it is already Friday tomorrow, isn't it?? ... hmmm ... I'm definitely not going for a swim in the sea. The waters are shark infested, and these sharks seem to have a taste for Zimbabweans. Perhaps today is a good time to google holiday destinations and plan something for the later part of this year. Yeah ... that would do it, roll on "better" days (.)(.)

The show must go on

The holiday season is officially over. We are reminded of this as the unrelenting alarm clock goes off. Jordan's first day of Grade 4. He is very excited. Lying in bed everything seems to have settled in terms of nausea. This soon becomes an illusion as I start getting Jordan's breakfast ready and burning my fingers in the interim.

Fingers burning, tummy turning, I am reminded of the prose poem written by my rock star whilst feeling energy-less in the shower. The section of the poem that went through my head at the time was:

I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.

I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.

It doesn't interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
Oriah Mountain Dreamer

The relief does not come from the fact that I actually did Jordan's breakfast this morning, but from the fact that I can rely on God's faithfulness to get me through the tough ones with little reminders like this.

School assembly was great. I always love seeing the Grade 1 parents dropping their little ones off for the first time. I don't know who is more anxious - kids or parents. School was followed by a breakfast out and doing a nicety for a friend in need. Now I am wacked - but happy.

It is way too hot (38 in the shade) to sleep. With burnt fingers, I can't be writing any cheques today either. The gardener is here, so can't be doing any skinny-dipping. My outgoing email is also needing some attention, that is too much effort for me right now - someone spam-copped me ... dam!! But I am still happy.

I think I am going to take my happiness to some shady spot in the garden and try and read my book (.)(.)

All consuming

No change since yesterday ... still feeling as sick as a dog. I don't even want to talk about it really, the symptoms and all. I find the whole thing terribly "all-consuming" to feel so crap. For someone like me who is very rarely sick, and has no tolerance for sickness, this whole ordeal has become incredibly challenging.

The need to press on before falling into major self-pity is my biggest challenge, especially as it is such early days. I can't help thinking I have been conned. I don't even really know how necessary this treatment is. I mean, who knows for sure? Especially as I was an ideal candidate for clinical trials. Doctors are making me sick, and I am allowing it.

I just look at anything red, like cranberry juice, and I feel sick. The mere word of "chemo" turns my whole stomach to the extent that I can literally smell and taste the chemical, the lounge, the needles via my breath just by the mention of the word.

Addiction recovery taught me about the pitfalls of obsessive thinking, in anything, not just your choice of addiction. How is this different!!! I obsess about not sleeping, not being able to exercise, not being able to get what I want done. I obsess about how awful it feels to be sick and how hard it is on my family. I obsess about the next 6 rounds and not really having the stomach to go on with it. Surely this ain't a good place for me to be? Obsessing!!!

I simply don't want to play anymore!!! I don't want to be their guinea pig (.)(.)

Slip sliding away ... and stuck

Don't be misled by this photograph. My son needed to earn extra pocket money on something he wants to buy, so because it is a FIRST, I want it recorded. Besides, it does look like he is helping mommy out on a crap-feeling weekend I have just had. Regardless of his intentions, he did help out actually.

Apart from enjoying the relaxation, pooling, reading and friend's visits over the weekend, I did feel a little despondent yesterday. It feels like I have been lied to by the doctors, when they said my experience will be similar to my 1st chemo. They simply do not have a clue do they, and really only go by stats.

After writing how positive things looked on Saturday, it all went downhill physically from there. I had a crappy weekend. Fatigue, nausea ... which just started out as feeling icky, but I did have 3 occasions of having a mouthful and doing the swallowing thing to keep it down. Imagine how bad it would be without the R200 a pop puke pill. I have heart-burn, like when I was pregnant, mostly at night. I am terribly bloated from the cortisone, but if I remember, I felt the same bloated-ness with the 1st chemo. If it is to follow the same path, then this should only last a day or 2.

My eyes are swollen and blurry, my face and tummy too, which is incredibly uncomfortable. I think I have gone up to the 7-months pregnant look. I have also put on 2kgs. My boobs are swollen too, like they are going to burst out of their scar-seams. I am also very sensitive emotionally, I want to cry at the slightest insult or dodgy look. So unlike me!!! I think I should be menstruating around about now, which ain't going to be happening ever again (a small silver lining), so this could be a contributor to the emotional-baggage side of things. I wonder if I can get a refund for all the sealed FemPro products I still have?

I have had 2 nightmares, almost like hallucination. The one was when I literally woke up choking, it felt like a silver gob-like monster was coming up from my tummy and depositing the metallic taste in my mouth. The image was a nightmare, but the choking that woke me and the deposit it left was real.

As for my bald head, it sticks to everything man!! When leaning on pillows, cushions, towels, hands ... it is most uncomfortable. It starts with a sweat and then it is like glue. Not enjoying it. I even tried to wear a beanie, but as I don't have my own yet, Jordan's 7-8 year beanie was a little tight on my big head and made me feel like a china man. Like when my mom used to plait our hair, even after the pleas of "mommy, mommy my plaits are too tight", we all ended up looking like Chinese kids.

I think I am going to have to put talcum powder everywhere as suggested by Hil's sister. To those who visit, don't be alarmed if my head looks even whiter than normal. Charlotte gave me a pure silk head thing that I am now using as a pillow case. It has helped a bit, it's slip sliding gliding, when I am not sweating.

The symptoms make me dread the next 6 rounds. I do wonder if my negative thoughts concerning the doctors makes me want to vomit more. Just thinking how much we have to trust doctors, and their knowledge of this, encourages them to be the unquestioned law. But let's be honest, even if we do question why do we need this? What's that for? What will happen to me if I don't? Our lack of understanding bears no challenge to their answer - it's all very nauseating isn't it?

All I can say is that this experience ain't for the faint-hearted, and I am left wondering why I was chosen, especially as I don't feel that strong anymore. I do however take strength and feel tremendous love and support from Hil mostly, my son - who is now "sleep-walking" to our room in the middle of the night to sleep with us, and every single one of my friends who continue to send prayers and healing energy. I don't think I could bear doing this alone, and I really need to be strong for my boy so that he is not scared and have this need to sleep with us (.)(.)

Cocky Cunningham is back

I woke up at 6am feeling very positive and jabbering away to Hil. I had verbal diarrhea even though the response back to me was just mmm, mmm, mmm. After testing how awake she was with a question that required an answer, I still got mmm. I could have sworn her eyes were open. When I pulled them open, it was a case of "oh look, your eyes ARE open".

I am feeling rather confident after being told that the rest of my chemo treatments are likely to take the same shape as my first one. This should mean very little symptoms. I write this even though I sit with a pounding headache that has not been helped by the Panado I took a couple of hours ago. And, I definitely had a fever last night - sweats and freezing. Not like the first time where it was my imagination after sleeping under a duvet on a hot summer's afternoon. I do have hope though, and it sounds logical that things should take the same shape as the 1st chemo, so I am going to hang on to this sentiment.

My white blood cells took the oncologist by surprise as it was 3 points higher than expected. So I am guessing that this body of mine is pretty healthy and responding beautifully to all the healing thoughts, prayers and energy being sent from my peeps. Thanks guys.

As for the relationship I have with the oncologist, I don't really have much hope for that. I certainly got his back up with the hairs in his nostril noticeably twitching.

Over the years I have learned how to confront in a non-aggressive manner, you know trying to be constructive, but at the same time getting my disgruntles across. Well, my oncologist was totally defensive and blaming all their inefficiencies that contributed to the discomfort of my first treatment on everything else, instead of taking responsibility for his contribution. The blame went to the chemist, the time of year, "it is how things are done" without an explanation as to why. OMW is all I could think. I thought I had better change direction knowing that I still have 8 months with the man. So I attempted a compliment by saying "I do understand that your job is to concentrate on the medicine side of things, which clearly you are doing a good job as I have had no symptoms, but there are human aspects too and I am feeling a little negative, and I don't want my immune system to cling on to negativity". He handed me numbers to other people to talk to - councilor, dietician. Oh man - do they desensitize doctors as part of their training??

Oh well - expectations = disappointment again. I just expect someone of that caliber to know how to not let constructive criticism affect them to the extent of hackles standing sky high and noticeably on their back. I need to let it go, but I can't help noticing that both egotistical doctors I have encountered are both shorter than I am!!! And, I am only 5"6.

As for the oncology lounge, it was a better experience. The lounge was rather empty actually. There were about 6-8 of us this time (compared to 20-30 my first time around). 4 of them looked like they were in their early 40's (like me) and early stages of their treatment. I chatted nicely to one of them (in English) who sat in my circle - exchanging experiences with children, treatment, being bald, where we are both at, etc.

When I enquired where the other "oldies" were, the sister just said some had to have blood transfusions, some did not pass the white blood cell test. The look in her eye and slight hesitation made me think she might wanted to add - some have passed.

Feeling all cocky and prepared for my needles (thanks to the Emla cream), I shat myself when the sister started preparing the vein on the side of my wrist instead of my hand (where I had prepared). I reacted by pulling back in shock. I had to start my preparations all over again with a 20 minute delay. The sister told me that they prefer to use different veins in order to preserve them. In future I will be preparing the whole arm.

The "oh boy" reactions that I had perceived the first time around from the other patients towards my low pain threshold were confirmed when one of them asked "have you not had children?". I don't even think my "defensive answer" of "IT WAS C-SEC" satisfied their irritation.

I have had my baldness for 2 days now. As I only went with electric shaver, it still left prickles that irritated whilst sleeping - you know the velcro feel. So yesterday, Hil bravely purchased shaving gel and Mach 3 razor to do the shave thing. When did shaving gel go up to R80??? So last night in the bath, after getting specific instructions from my friend Darren on the "how to", I had my close encounter with the razor.

The conversation with Hil went like this:
"I can feel you are nervous - and if you are not nervous, I won't be nervous" I said
"But I am nervous" she said
"Ok, well try not to be and I won't move"
"The worst that can happen is a few little cuts right?"
"WTF ... what do you mean the worst - this is not my legs you know"

She did a perfect job I must say, and it feels a whole lot better on my pillow. My hand does tend to stick to my head (because of the moisturizer) when leaning on it, but it is better than the velcro feel. My head feels like velvet now. The look is definitely what Darren warned ... witkop, shiny white with a tanned face ... but I do have a slight brown birth mark on my crown if that is any consolation.

I am already getting irritated with bandannas and the nanny-look and unless I go fancy hat shopping soon, I might just say "fuck it, this is my new look for the next 9 months" (.)(.)

Is there a horse amongst this shit

Still feeling somewhat miserable and moody this morning, but hopefully somewhere along the day I will find my personality. The white numbing cream works though, so this is something I shall take great comfort in today. I tried it out yesterday whilst doing my blood test. I smothered the inside of my arm half an hour and 15 minutes before, just to be sure. I still felt the prick, but it was bearable. Thank God.

My head is a little cold in the wind and my leg hairs hurt more than normal. I shaved a couple of days ago, and there are less prickles than normal, but when I get goose pimples, the ache feels like the hairs are straining to get through.

I'm also feeling very negative towards doctors and patients and it doesn't sit right in my tummy. Like I am off-kilt a bit. Not sure how to get this right when I know deep down that I do need to change this perspective. I don't want my immune system or cells to hang on to any negativity that enters my mind.

Despite my despondency and demotivated state, I have been given the most incredible business ideas during the early hours of the morning. I simply need to get over today and get my A into G (wrestle that procrastination to the ground) in order to keep the momentum of this excitement up and turn the ideas into reality. Roll on Monday!! (.)(.)

2 of 8 Looms

It's chemo number 2 already tomorrow. Today I have to go for blood tests to make sure that my white blood cells can cope with the onslaught. I feel miserable. I am demotivated to do any work. I don't want to go out as I am a little self-conscious with my head. I don't want to read, write or do anything. I just want to be happy and have my old life back.

I am freaking out about the needles for today and tomorrow. I read in my "Chicken Soup for the Breast Cancer Survivor" book that one of the patients also had the same freaking-out anxieties and simply asked for white numbing cream that goes on about half an hour before. WHY DON'T DOCTORS TELL US ABOUT THINGS LIKE THIS???? They are more interested in putting the R240 next to the time of your appointment in big bold letters. This is obviously the most important thing to them. He better have something to tell me that I don't already know that is worth the R240, otherwise I will bitch about that too.

I am in the perfect frame of mind to let my oncologist know exactly how I feel about their oncology unit. Give him a piece of my disgruntled mind, I will. Luckily for him, I am not the person who only bitches about their problems, I will provide solutions as to how they could run things more friendly and smoothly from a patients point-of-view. Why bitch about a problem unless you have a suggestive solution to go with it.

So I phoned around and there is an over-the-counter cream called Emla that I can try and put on a half an hour before. Let's hope it works. I am also going to take a big dose of Calmettes. I would rather be half-doped in my chair than have to look at a whole bunch of sad-sack old ducks turning yellow and probably talking about their bald heads in Afrikaans. Bleeeuuuggghhh (.)(.)

All Britney Speared

What started as a traumatic day for me, ended as one of the most enjoyable days, thanks to very special friends. I think I was all cried out by the time I got to Ian and Wendy's. They made the shave-athon experience very special for me. They had prepared their children as to what daddy was going to be doing ... and why. The children were incredibly sensitive (including my Jordan) and 9 year old Stanley even said when I left that I looked like a "sexy pirate girl" with my bandanna and sunglasses. Sweet man - it did put a smile on my and Jordan's face.

Ian even purchased a new shaver especially. What a thoughtful, kind thing to do. Thankfully, he is a shaver himself, so it won't get wasted, but it did feel special to be the one to break it in. He was incredibly gentle and it didn't hurt a bit. He even sung me his old English barber songs that he remembered way back in his school-play days. I wonder if I told him to not change his day job??? :-)

An outdoor breakfast by the pool and a swim in this incredible heat (37 in the shade) finished the morning. Afternoon was taken up with a snooze. I was totally exhausted with all the crying and anticipation, I guess. Late afternoon we went to other friends for a braai, tennis and swim evening. They live on a farm with the most incredible view of Table Mountain. With a spectacular sunset, good food, no wind, lots of laughs and great company, it turned the rest of the day, which could have been more traumatic, into a special day for me.

I do catch a fright when I look in the mirror, but I will get used to it, I am sure. It is rather cool in this heat and underneath all that hair, who would have thought I would find a beauty spot on the side of my head. Luckily I have no scars, dents or rolls at the back of my neck.

Tit inspection has taken a back seat, it is now head inspection every 5 minutes. This body of mine sure has taken a lot this year, it's a no wonder I am wanting my primary goal for 2010 to be one of nurturing and kindness to myself.

Hil made me see yesterday what all my crying was about. Because I have not felt or looked sick up to now, despite all the battering my body has been through, being bald almost feels like I now wear the passport for all to see that I am sick. I mean let's be honest. Although I am modern and hip (hehehe - in my dreams) I am not the type of person that takes this modernity to the extreme by going bald. It is the trend in some circles - just check out All Access on TV. So if you are not in that circle, there could only be one other reason for a chick to be bald ... CANCER passport. I do dig to be the stand up comedy and centre of attention at parties and all, but I do not like to be the sore thumb sticking out, announcing my disease.

Maybe I should go hip shopping to suit my new head - you know, begin the self-nurture goal. GI Jane sure doesn't look cool wearing crimpolene pants and cardigans. Yep, I am going to make this work for me (.)(.)

Time to say goodbye

The hair is going fast now. Hair everywhere feels like having gone to the hairdresser who doesn't clean you off. My shirt and arms almost have more hair than my head. Just yesterday I literally watched my sideburns disappear thanks to my glasses and sunglasses. It is also rather painful to take the glasses on and off. I am sure they are stretched as it was the only way to take the glasses off by stretching them out. Whilst having coffee with my friend, I kept having to wipe the loose hair off my arm ... and I was just sitting still.

The pain, which feels like a thousand little needles - each hair being a needle, first started on the crown on that 1st day. Then 2nd and 3rd day it was the whole top of the head, when I was doing the toupee styling. Yesterday and today it is the sides and back, but no longer on top. This must mean the top is now dead. It is horrible to lay on the pillow with every move going against the grain and being stuck with those hair needles. I don't feel ready to go bald right now, today - but I feel more traumatized to see the bald spots starting to appear as though I have mange.

I'm a little scared that the electric shaver is going to be painful, but I am hoping that once it is done the "hair needle" pain will actually disappear. I am also going to feel cleaner without all this hair all over me, in my bed, on my pillow, in my food, on my books, in Jordan's mouth ... fuck ... everywhere!!! I am also hoping that Ian knows how to be gentle - he is a rather large man that is going to look scary with a shaver in his hand!! :-)

I cried this morning spontaneously, but it doesn't feel like I am crying from a vanity point of view of losing my hair, it's just that I am hating this experience. I also cried spontaneously whilst having my massage with Frank yesterday. I'm not 100% sure why I was crying, it was a conglomeration of things actually. The music, the feeling of safety to let go during one of my visualization rituals and the fact that he found more pains in the whole right side of my back also didn't help. The lymph has started there now in addition to my arm. In the beginning of the massage therapy, it felt like my whole right lung area was bruised and he could hardly even touch it, by the end of the massage though it was more at ease.

Before I got to writing this blog, I was still deciding whether I should hold on for one more day with my hair. My mind was made up when I saw emails from 2 special friends encouraging me and telling me that I am more than my hair. It also helped a stack that my bosom buddy bravely sent me her private photos of her metamorphosis. Thanks guys, I needed to hear that today. I'm crying now as I write this so am going to end off as I can't even see the screen (.)(.)

Widow's Peak

I definitely did things the right way with regards to having the No. 2 haircut. The 01st and 02nd January only saw slight evidence of hair loss. A few hairs here and there. Hairs on my book when I am reading, in Jordan's mouth when we were playing (one must have flown in when he was laughing uncontrollably with "torture tickle"). Only from yesterday (03rd) is there more evidence where I come away with a handful of hair any time something touches my head, which I am trying to avoid as much as possible. I also find myself looking at the handful for a long time in disbelief. This would have felt more traumatic, I imagine, if I had long flowing hair.

Although a few people have noticed the difference from day to day with the thinning of my hair and the prominent "widow's peak" look, I must have a lot of thick hair as I still have a head full of hair to lose. As short as my hair is, I still have enough to do the forward Donald Trump thing over my widows to make it look like I have a double cow's lick.

My roots are extremely sensitive and tender to the touch. The discomfort feels like going against the grain of my hair growth and a slight burning effect. Styling comes in the form of patting the top of my head as though I have to fix my toupee. Because of the tenderness and the "okay" look, I have decided to hold off with the shave until absolutely necessary.

The weirdest thing is that in the early hours of the morning when my head touches the pillow and wakes me from a dead sleep because of the slight discomfort and pain, I bolt out of bed in a panic thinking I have bald patches all over the place - but during the day, I am calm and expecting the inevitable. It feels like a terrible nightmare when I wake up with a fright. It takes a while to calm myself in those quiet moments because it ain't no nightmare ... IT IS going to happen.

It is not a pleasant experience and I didn't think it would affect me as much as it is. I think once it is all gone I might get over it, but the losing process is kak. As kak as it is, I still don't want to shower, brush or do anything that speeds up the process. I don't know why I am hanging on, I think it is more because of the tenderness and the thought that the electric shaver would be quite sore. I can't imagine how awful it must feel for a man who loses his hair permanently. As for me, I wish I could take comfort that it is just a temporary thing. I am also trying to make myself visualize that for every hair I lose means a cancer cell is dying.

Apart from New Years Eve, I have not felt any excessive fatigue. Most days I have my regular arvie nap, but this doesn't feel like a major need or abnormal. The worst of everything is still the battle with my right arm feeling bruised, and being unable to straighten. I am a little pissed off that I was not prepared or told about this in more detail from the doctors. I have had to learn by myself that it is a thing called lymphedema that could be irreversible if not treated properly. I still have to find out how to treat it though.

One good thing is that I am soon off to my weekly massage with Frank, this always helps the arm for a couple of days (.)(.)

The bitch is malting

Menopausal, hair loss ... perfect title for today. Okay I know it is a little early for menopause to start - but explain why I am such a bitch of late???

Yep, it has started. Last night we only went to bed after 1am (well this morning actually) after seeing the New Year in with friends. You should have seen what the moon looked like last night with the spattered clouds. True artist this God of ours. Despite being really tired, I woke up and bolted out of bed at 4am with the crown of my head (by the roots) feeling very tender to the touch. I thought I had this bald patch right in the middle of my head. I felt panicked actually. Light went on as I inspected my head. All there, but this morning when we woke up properly we noticed my hairline receding with a few dotted loose hairs on my chest. Nothing dramatic yet, but it has started.

Yesterday, after finishing my blog post I did nothing but sleep. For the first time I have noticed a symptom. They did say that from day 10 my white blood cells will drop and I will feel fatigued. That was me yesterday on day 14. I only showered at 5pm because we had friends coming around, but I could have slept all night, if I had half a chance, even after all the sleep I had during the day.

I hope my hair does the "go-slow" lose because I have asked my friend Ian to do the big shave. He is on a camping holiday with his family and will only be back Sunday. So let's hope it is only the slight Apache-look by then.

Ian is the father of Jordan's best friend Stanley. I thought it would be a good idea for his kids to also be part of the process to make it easier for Jordan. If his mates know the jol, it will be easier to accept and not have to explain to his friends why his mom is bald. That and not having many male friends who is in possession of an electric shaver - I am definitely not going the razor route!!

I've just woken up, and am ready to sleep again - but it is rather hot, so instead I will do my snoring and dribbling by the pool to at least attempt a little sociable-ity on my mom's last day. Let's hope the wind behaves to make it an outdoor day (.)(.)