Monday, December 24, 2007

Mon 24 Dec 2007 Christmas Greetings

I can hardly believe it is Christmas time. The tree is up and whilst the boys moaned about decorating it, I smile internally as I hear perfectionist Dylan complaining that I can not put the beads up symmetrically. I see no much of myself in him and I understand his anger to a certain extent. The boys make us proud everyday and I am sure that should I not be around next Christmas, they will continue with the tradition of the tree and the excitement about the new decorations that are added each year. Strange how these thoughts hit me now at this time of the year and processing the emotions that come with the thoughts is a new learning. Each and every day could be the last day for us… yet we do not appreciate it until life gives us a ‘wake up’ call. To each and every one : We wish you a peaceful loving Christmas and for all non Christian people, spend the day with love in your heart.

Friday, December 21, 2007

Fri 21 Dec 2007 Thembi's dream

Hugged by Gcina Mhlophe
Thembi - breakfast in bed in Cape Town
with John van der Ruit

Here is the feedback of Thembi's magical dream

"Thembi must be the most beautiful, enchanting young girl I have ever come across, she is 13 years old and has Muscular Dystrophy. When she was given a dream form to complete she listed eight dreams! Her reasoning being that she had never been asked such a question before and once she started she couldn't stop! We were amazed at her list, and formulated a plan to put her dream together. Among her dream list was a request for her very own box of chocolates that she didn't have to share with anyone - her joy when we handed over a large box of chocs was very infectious - at that stage she believed that we had just fulfilled her dream! Once we explained that there was more and handed over the air tickets - she was quite beside herself. The tickets covered the flights from East London to Johannesburg, Cape Town, Durban and back to East London! Thembi loves reading and wishes to be a journalist and author.
Thembi and Ilze set off early on Monday morning, meeting with Janine Daniels of the Penguin Publishing group in Johannesburg - they met the staff and then had a wonderful time at the Cleo Magazine offices. They were hosted by the Penguin group for lunch and armed with a huge pile of magazines and books they returned to the airport for the flight to Cape Town. Having spent the night in Cape Town they then were taken to Table Mountain and Blouberg Strand where, with a view of Robben Island, Thembi received her precious copy of A Long walk to Freedom - another of her cherished dreams. Everyone was absolutely in awe of Thembi, with several people asking to have photos taken with her! She really just touches people wherever she goes! They then went to meet with Marguerite Black, a journalist living with a similar condition to Thembi, they spent some time together - it seems a magical time for both where they both seemed to really connect and give each other inspiration and energy.
Having gathered in some ardent fans in Cape Town they then traveled to Durban where they spent the night. Wednesday dawned to a full programme, meeting with Gcina Mhlope who gave Thembi her undivided attention - whom Thembi thought was "VERY cool" A short trip through Ushaka Marine World and then lunch with author, Marguerite Poland. It is the first time I have organized a dream where the hosts have phoned to thank me for the honour of meeting a dream child! Marguerite was totally enchanted with Thembi and found her a complete inspiration! The last author she met with was John van der Ruit, again a very successful, fun meeting.
Thembi has no idea what an inspiring person she is - one seldom finds a young person with such grace and maturity and yet a sense of fun and energy fitting a 13 year old. She astounded all the people she met by preparing a set of questions and gathering information about each person they visited via the internet! It has been an absolute pleasure being involved with this dream - it is difficult to merely say thank you to the sponsor of this dream as everyone involved has gained from it, especially Thembi who will has been able to take a step into her future and no matter what it holds for her, she will have memories of a wonderful trip that will keep reminding her of how special she is."

Monday, December 17, 2007

Mon 17 Dec 2007 To Weed or not To Weed

Can one lady be so spoilt? Friday night around 8pm I phoned my mom via skype. Dylan was bouncing around me asking me how long I was going to be on the call. I told him 10 minutes or so, quite patiently which is unusual as I was sure he wanted to get onto facebook. I finished the phone call and Dylan led me to our bathroom. He had run me a bath with bubbles to the rim, candles, leaves (he could not find rose petals) and a glass of wine!! A real man!!! (and a very proud mother)

Friday evening was a sleep deprived night again. I went to bed exhausted thinking I can get thru the night without the magic of sleeping tablets. Eventually at 4:30 I got up to take some myprodol and slept for 2 1/5 hours. The past week has been a nightmare again and Friday evening (and the night before) the aching joints really got to me. That got me thinking (therefore the perfect shaped head :) ) again… next chemo round I should start taking weed. This could be consumed in tea, muffin, biscuit - cigarette form would not be acceptable as this might just start me smoking again. I need to admit that I am the most naïve 46 year old in Cape Town – whilst I have physically seen weed I have never consumed it in any form... what a nerd I am! If weed is not the option I may need to convince Dr V that I need to be hospitalised for 6 days and they can keep me ‘morphined’ to the hilt – this may be the easier option for Alida the nerd.

Sunday lunchtime Ian and I met up with the work team and we had the most wonderful time. It was great seeing you all!!

Friday, December 14, 2007

Fri 14 Dec 2007 Aching joints

This morning I woke up and decided to share with you the despair I feel within myself. Each chemo round gets more difficult as I subconsciously know what side effects will be impacting me. This round the rash is controlled, but the aching joints and bones are terrible. Last night I was in bed by 20h00 as I just could not sit or stand anymore. The natural anti-flammatories are not doing their job so I have reverted to voltaren. This is besides drinking copious amounts of water to flush the toxins out of my system. I think my kidneys and liver need a holiday! Last night was the first time in weeks that I just broke down in tears. The aching bones are really bad and I have now tried every possible remedy to make the pain less. Then, this morning I check my emails and there are two emails in my inbox which remind me that I am still better off than many other people in the world. How can I be so selfish to just wallow in my own self pity. I have the best support group that one could wish for. I have loving caring family, friends and colleagues. I am fortunate that the extra medical expenses are covered via insurance policies. I am blessed. I am still alive and must live each moment to its fullest.

Thursday, December 13, 2007

Thu 13 Dec 2007 A Dream realised

Dear blog readers and shavathon supporters: Here is feedback on where our monies have been spent.

Hi Alida,
Sorry I haven’t gotten back to you sooner, but I was waiting for a very special dream to come in!
I’m please to tell you that we are fulfilling a very special dream today for Thembi – Thembi is a 13 year old, who is suffering from Muscular Dystrophy, and who lives in East London. When we do our assessments to find out what the child’s dream is, we try and find out as much as possible about each child – their likes, their dislikes, and of course, what their dreams are. We also ask each child for 3 dreams, in case we can’t fulfill the first one for whatever reason.. Thembi’s first dream was for a bursary, as she wants to become an author one day, and thought a bursary would help her on this journey. Her second dream was for a trip anywhere, as she wanted to see what was outside of East London. Her third dream was for books, as her biggest hobby is reading.

Reach For A Dream is unfortunately not able to award bursaries and so we had to go back to the drawing board and see what her second dream was. This dream child obviously touched the hearts of all involved in East London and they went all out to make this as special and memorable for her as possible. It was decided that they would do her second dream for a trip anywhere, but to embellish it and focus on her love for being an author and reading. The result is that our darling Thembi is doing a whirlwind tour of the country, visiting authors from around South Africa – thus getting to see different places and meet these people that will have a huge impact on her life and dreams. I believe that her first meet and greet is with the Author of Spud – John van der Ruit, in Natal…

I’ve attached a photo of Thembi and the volunteer (Margi) who is assisting Thembi on this journey of a lifetime and promise to send you a full feedback on Thursday once they have returned from this epic journey… I just thought you would like to know that right at the moment, a dreamer is having the time of her life, thanks to yourself and your generous friends. (There is also a local sponsor that is involved, but really, it couldn’t have been done without your contribution as well!)

All the best

Tuesday, December 11, 2007

Tue 11 Dec 2007 Chemo Round 3

Went for blood tests 08h00 Monday morning and saw Dr L at 10. Chemo did continue despite the low blood cell out. I have been given extra medication to get the blood cells to rebuild faster. Vicious circle this is! Came home and went to bed for a while. For dinner I had a bit of chicken and salad then straight to bed again with a sleeping tablet. My irritation levels are through the roof. I just want to be alone and wallow in my own sense of despair. Woke up this morning feeling nauseas and can feel the uric acid building up in my right ankle (with one with the screw in it) and my finger. Took all my anti-drugs… urgh. Off to bed again for the bulk of today.

Saturday, December 8, 2007

Sat 08 Dec 2007

The past few days have been really busy with a steady stream of visitors making the most of my good week. Friday morning I went for blood tests again and Dr L’s rooms phoned in the afternoon to inform me that my red cell count is really low. That explains why I am so pale, and I thought it was just lack of sun… hehe. I need to go for blood tests again Monday 8am and then pending this chemo will happen or be rescheduled. One of Ian and Alan’s work colleagues committed suicide early Monday morning and the funeral / memorial service was Friday morning. Really sad. Alan slept over with us and returned to Pretoria this morning. It was really great having ‘my other brother’ around and we sincerely miss our best friends who are now living so far away. We received our first Belgium visitor. Benoit it was lovely to have you around last night. My niece Sian gave birth to her first born on Wed evening. Dear little Connor we welcome you into the big world! Thursday afternoon I went to see a medical doctor / homeopath to discuss my illness, my diet and the supplements I should be ingesting. It was really interesting and I am doing quite a bit correct. Just need to add more vitamin C and he has given me a natural anti-inflammatory to try thru this chemo round. The good news is that I should be eating 40g of 70% chocolate each day and a glass of red wine!
Colin and Flynn arrive from the UK this morning. I am expecting them around today. It will be a bit emotional as brother and sister see each other for the first time since we know about this illness. And then tonight we have Jen’s 40th birthday… yes, we do still know people who are turning 40… us old farts!! All in all, busy has been the call of the day.

Tuesday, December 4, 2007

Wed 04 Dec 2007 Life lessons

How time is just rushing past us. It is four days since I have done a post. Saturday 2 friends popped around and we went out for a cup of tea. Sunday for Ian’s birthday we went to Spier and had a lovely picnic despite the weather being cloudy and windy. Things are not going to well for my Mom in Holland. Her hubby had another mild stroke last week and she has to cope with this and the fact that she fell whilst she was visiting Cape Town and has a cracked pelvis bone. It is all quite frustrating being so many miles away from her as I could help her a bit on my good days. My Mom’s neighbour Jackey has been an absolute pillar of strength and support to my Mom and Arie.

I eventually phoned Dr V on Monday afternoon to get the results of the MRI scan. (I still have not heard from Dr L!!). He returned the call within 30 minutes with the news that there is no cancer in the bone. That is very good news!

I have had many hours to think in the past few weeks and what really touches me is how this illness has changed quite a few of my beliefs and practices in a positive manner, but also how it has had an positive impact on all the people who interact with me. Each and every person that has touched my life has also had a learning experience from this illness, be it that they have learnt that it is ok to chat about the illness directly and openly, to healing and growth happening for themselves at deeper levels. For example my dearest goddaughter who lost her mom to cancer nearly 9 years ago has now been given the opportunity to deal with cancer in a completely different manner and this has allowed so much emotional healing to occur. Another example is a lunch chat with Tertia (So Close) where I believe she got as much out of the discussion as I did. Everything happens for a reason & nothing is a co-incidence.

Friday, November 30, 2007

30 Nov 2007 Grateful and thankful

I did not want to write a post until I had the results of my hip, but at this stage I still don’t have them. I am clearly not meant to get the feedback during November as the universe has different plans to me. Wednesday morning Dr L phoned me to say that we need to do a MRI scan (that is going into that machine that looks like a huge coffin). This was done Thursday and after waiting for nearly 2 hours for the pics and report, I dropped them off with Dr L only to find out that she has the afternoon off! Damn!!! Phoned Dr L’s rooms again this morning around 11 only to have the receptionist look for the pics – she found them after about 10 minutes of holding the line but that means Dr L had still not looked at them. I saw Dr V on Thursday too. He is just so gentle and kind. My body has healed itself well and the left ovary looks ok and no new cysts have formed (another scan). When one spends many hours in a hospital, like I did Thurs, you realise how lucky you are. There are always people who are worse off in many ways. I am ok, I have my ups and downs but that is normal. I am going to conquer this battle.

Tuesday evening was the first evening I cooked dinner for the family since the operation 6 weeks ago. I am just so blessed to have people around me who provide for the little things. Things we all take for granted. Dinners are delivered and some dear friends even bring frozen home cooked meals for the difficult days still to come. I just love South Africans and the natural caring nature! I just love South Africa with all its warts.

For the past 6 to 7 weeks I have had a constant display of fresh flowers in the home. These range from beautiful bouquets, formal bunches to home grown flowers loving picked and dropped off with a hug and a kiss. How spoilt can a girl be! I have had roses, St Joseph Tiger and Inca lilies, carnations, happy sunflowers, daisies, you name the flower and it has stood proudly in my home brighten my every day. Thank-you!

Tuesday, November 27, 2007

Mon Tue 26 27 Nov 2007 Mom departs

Mom left Sunday evening on a flight that departed 00h25 (26 Nov). We had a very quiet Sunday morning with Ian reading the Sunday Crimes, Mom doing crosswords and me Suduko. The boys were out gallivanting with friends. The afternoon quite a few people dropped by to say goodbye to Mom. She is leaving with a really heavy heart but she must go back to her hubby. She is really torn between devils and she want to be with both, but I have had her for 4 weeks, which was totally unexpected and much appreciated. Leon and Marietjie took Mom to the airport and I am grateful for that too. At the moment of having to say goodbye, it got really emotional for both Mom and myself… lots of snot and tears…. Mom arrived well with loads of support from KLM. Thank-you Ruby, what would we do without you!

Monday afternoon Dr L phoned me about my x-ray report!! She needs to view the x-rays and wants to discuss them with an expert. As I am mobile again (hip hip hooray!!), I have found my independence again after 6 weeks, I popped off to Dr L to drop off the x-rays. Tuesday afternoon, and I have not heard from Dr L !!!! Her receptionist phoned me around 16h00 and promised Dr L would phone me tomorrow. This illness is definitely teaching me about patience!

Saturday, November 24, 2007

Sun 25 Nov 2007 Grief

Elizabeth Kűbler Ross ( ) studied the process of death with many dying patients and the families of these patients. Grieving is a normal human process when we deal with death, the dying and illness. There are 5 stages of grieving through which we progress.
  1. Denial: this is when we just cannot believe or accept the death or illness, there is a feeling f isolation or a need to be alone
  2. Anger: this is when we are angry with the whole world around us that this has happened to us
  3. Bargaining: Here we start to bargain with God by saying “if You do this for me, I will do that for you”
  4. Depression
  5. Acceptance

There is no predetermined timeframe in which the above steps occur. One person may go through steps one to five with in a matter of hours and another person may take years to get to the acceptance stage.

When I look at my own personal experience in being diagnosed with Ovarian Cancer Stage IIIB on Thursday 18 Oct 2007, I was left completed isolated and empty of all emotions for the first few hours. When Ian came into my hospital room around 8h30 (I think) I was still in denial stage as I just felt 100% empty and very teary… both of us in fact. Then Dr H (gynie oncologist) popped around to explain all the ins and outs of what this means and what treatments are to come. I felt a bit better but then I needed to get Ian to get a hold on himself. He was so shocked by the news that he wobbled like a big bird on a small tender twig. We did some deep breathing and basic meditation grounding to get a grip on ourselves. Post this we did the phone calls to the immediate family. I guess it was around midmorning by this stage. As it happened, my brother Colin texted me to find out how I was doing, so I decided that was the sign for him to hear the news first. After Colin I phoned my sis in law, Marietjie and asked her to share the news with my brother Leon, then I tried to get hold to Dick, got voicemail, so phoned sis in law, Malinda. I was left absolutely emotionally empty after the 3 phone calls, so I left the balance of the family to Ian. Each phone call was done with a shaking voice and tears welling up in our eyes. Ian phoned my folks, his family and my closest girlfriends. That afternoon, Marietjie popped around before visiting time to give lots of hugs and emotional support and Jen popped around during visiting hours with my wee dram for the evening. I even had to phone one work colleague who has asked the previous day if he could pop around, and shared the news and the fact that it was not a good day to visit. Every person who heard the news was struck by total disbelieve. I must admit, I also had a problem digesting the news and accepting it! My mom and Leon have gone more visibly through the anger stage where they really questioned why this has happened with loads of emotions.

Later that day I really questioned why this is happening to me. From a metaphysical point of view I fully understand that there is a greater meaning to this illness occurring within me. I would equate this stage to that of anger and a bit of bargaining as I questioned that the histology reports were indeed those of my innards.

By Sunday we had told the core circle of people around us. Monday was the day to share the news with work colleagues. This took about 10 phone calls and left me completely exhausted, including the fact that we had a few phone calls to agree how the team would operate without me for the next few weeks.

Depression lasted for at least 2 weeks as I had to accept that this illness is within me and that I have to step forward each day to fight the illness. The very first chemo session was really dreadful when the liquid started dripping into my veins. The emotions were just too much to bear. Since chemo round 1 I have had to prepare myself for the emotion of losing all my head hair. This caused a huge amount of depression with me and I sobbed for many hours on many evenings. I later convinced myself that my hair was dead therefore I would cut it short before it starts falling out. By the time I cut my hair, I had detached myself completed from all emotions.
Some 5 days after cutting my hair, it started falling out and within another 5 days I have been left with a bit of fluff on my head. Every time I look into a mirror I am reminded that I am chemo patient and I have to accept this fact. Chemo is no fun, it plays havoc with your body and your emotions. I am moody and irritable with all those who try to support me emotionally, I am nauseous, my skin is sensitive and irritated, my joints ache. All this for a week and then I have a week where my poor body is trying to rebuild itself to a normal functioning, only to start the chemo process all over again. I am finally in the acceptance stage (I can see myself in a mirror) but still question what the great message of this illness is for me and my family.

When dealing with sharing this illness with many people, one needs to be cognisant not to take the spoken words back personally as many people do not know how to react, so instead of saying ‘I don’t know what to say’ they end up saying things they don’t actually mean. The one example I have is where the individual told me that sometimes I am a bitch but I do have a nice side too!! (Bloody hell) Another lesson is that the majority of people actually do not know how to deal with a person that has been diagnosed with cancer (nor death). The best is to talk to them normally about the situation and through that the other person also learns how to deal with situations of this nature in future.

My whole family and closest friends have rallied up to from a core circle around me and I am truly blessed to have such a supportive network. I am in friends’ personal prayers, in prayer group meetings and in spiritual healing circles.

Where is all this leading to? What lessons are in this for me?

I am learning to be humble, I am learning to be grateful for all I always took for granted, I am learning to pen words, I am learning to have empathy.

I understand that grieving is a natural human process.

Please read my ‘sister’ posts on grieving – follow the LINKS on the right.

Friday, November 23, 2007

Thu Fri 22 23 Nov 2007

My red blood cell count managed to return to normal, but my white cell count is below the normal range. I will continue to track these immune fighters as they have to work harder to recover. The ovarian cancer count is also down, but the Dr’s have said that this is not the only measure for my cancer, so I am not making this the biggest focus. I am still struggling with my sore joints. Every bone in my body is aching. The nausea is under control as is the rash this time around.
Yesterday I went for x-rays on my right hip. The hip has been bothering me for some months now and I attributed the discomfort to the cyst (now called tumour) causing pressure inside. The medical report is all in Afrikaans and contains words that even my well versed Afrikaans family cannot understand. I did scan and email the report to the Dr’s yesterday afternoon and phoned today to get feedback. But.. the stand in Dr has left the office for the day…. Uuuurrrrrrggghhhhhh!!!! Dr L is back on Monday so guess who will be on the phone to her Monday morning!

Wednesday, November 21, 2007

Mon-Wed 19-21 Nov 2007 Chemo Round 2 : Side effects

Monday I felt anxious as I headed off to chemo round 2. Dr L, my oncologist is on holiday for 2 weeks so I saw another Dr, who was 45 minutes late in seeing me. I had to explain to him exactly what ‘anti’ medication I was on. This really surprised me as it should surely be noted on my medical records. Started chemo at 12h00 and this was rushed into my bloodstream as the chemo room closes at 16h30. I felt really jittery and nauseas thru the whole process. Sian did pop around to massage my feet – absolute bliss and it did manage to calm me down. Came home and went straight to bed, woke up at 19h00 for a bite to eat and then back to bed again with a sleeping tablet. Tuesday I spent the better part of the day in bed trying to sleep off the tiredness and nausea. Today I have a bit more energy but my right ankle has started aching. I am drinking loads of water and taking 3 anti-nausea medications, one anti-histamine (for the rash) and started anti-inflammatory this morning, but this is leaving me shaking like a leaf in the wind. I am really shaky!

Saturday, November 17, 2007

Fri Sat Sun 16-18 Nov 2007 Feeling good, Ready for Monday

Friday I went to the have blood drawn for a full count, including a cancer count, which I will get on Monday - seeing the oncologist before chemo starts. On Friday afternoon I got totally spoilt as my niece came to visit me and gave me a pedicure, she has also committed to come to the chemo room on Monday to give me a foot massage during my 5 ½ chemo session. I hope she can make Monday as she is 39 weeks pregnant! My mom has gone to spend the week-end with my brother Leon, Marietjie, 3 dogs, 2 parrots and a horse to visit.

Saturday the weather was absolutely stunning! Definitely the kind of day that must be spent outdoors pottering around in the garden. Anet dropped in with a big bowl of left-over trifle for the men in the house (teenage men do know how to consume food!). Ian took me to the local shopping mall (first time out for me with a scarf on the head) as we needed to get some birthday gifts for nieces today and tomorrow. With both Ian and I coming from families of 4 children, there are many nieces and only a handful of nephews. I find that about 2% of people stare at me…. I am going to ask them what they staring at! Have they never seen a person with a ‘doek’ (Afrikaans for scarf) on the head!! At home I walk around with my bare head – I must admit, it is a well shaped skull that I have - must be all the years of mental work!

I received the medical details from the very nice lady who phoned me during the week. Once you get into the detail, there are many surprises in terms of the medical costs and how they are processed / what is not covered by the medical aid and what is processed as normal day to day expenses rather then related to oncology. The recommendation is that I change schemes, which will more that double my monthly contributions. I will phone her later next week when I feel a bit better as I have a few questions on some costs not covered.

The next post will be published once I feel a bit better after chemo.

Thursday, November 15, 2007

Thu 15 Nov 2005 Reach for a Dream

How time flies - Today is a month since my operation! I have been really tired today and had a great afternoon nap. A few visitors did whistle stops and a friend took me out for lunch which was wonderful as I don’t get out much at all (except for medical reasons). This afternoon a wonderful lady from the medical aid phoned me. She is going to research my current plan options and recommend the options I need for next year to limit my personal exposure of medical expenses not covered by the plan. There are a number of surprises in this (for example, all visits to the oncologist are paid from the savings plan and not the oncology programme) and I am still learning about them. She has however committed to get back to me next week with all the facts.
I have a very close friend who put up her first born for adoption about 19 years ago. About 5 weeks ago she met her daughter for the very first time. Since then the daughter has met her husband, son, grandfather, etc. Tonight my friend has invited her closest friends to pop around to meet her daughter – I am sure there are going to be quite a few tears!

We managed to collect ZAR14,000 for terminally ill children (charity fund Reach for a Dream). THANK YOU for your generous contributions. I transferred the money this morning. See the email below: As I get updates from the organisation, I will publish them.

From: Judith Muirhead [] Sent: 15 November 2007 10:09To: 'Alida'Subject: RE: Donation

Hi Alida,

Wow – I just saw the notification come through to let us know about the donation, and I’m sitting here with a very big smile on my face! Thank you for your very generous donation – we will certainly use these funds for some very special treats – I’ll keep you updated at all times with the dreams that we are able to fulfill with these funds…. It might take a few weeks until I get back to you with feedback, but I will certainly send it through as soon as the dreams have been fulfilled – we’ve got some very special ones coming in at the moment.

Thanks again for helping us make a real difference in a child’s life – these dreams really do last a lifetime and truly help these very special and brave children fight and beat their illnesses.

Best wishes,

Wednesday, November 14, 2007

Wed 14 Nov 2007 Hair loss evidence

Just in case you all wanted to see how rapidly my mane loss is progressing. This is what the bed looked like this morning. I need to make a call tonight whether I continue to let the hair fall out (will only be another day or two) or shave it all off. It is really strange as all the fine hairs on the arms, etc are all gone. I feel like a moulting dog with an itchy head.

Today was quiet with only my aunt (Hennie) and chauffeur (Anet) popping in to see how things are going. No afternoon nap so I can sleep tonight. Mom is not doing too well. She is stressing about the situation at home with the hubby. He had two stokes earlier this year and has some brain damage and loss of movement, and struggling to cope – only 11 days for her to go and said to her that once you past the halfway mark, time seems to go quicker. Despite all this, Mom is keeping to her promise to cook meals for the freezer.

Tuesday, November 13, 2007

Tue 13 Nov 2007 Hairless Me nearly there

Monday was very quiet and nothing exciting occurred. I had my afternoon nap and ended up lying awake between 2 and 4am. Then I dreamt that I when I wake up all my hair has fallen out. Well, guess what, this morning I brushed by hands over my head and the hairs are falling out! Amazing, every event that has occurred from the operation to the diagnosis, I have dreamt before it actually occurred. The emotion of dealing with the hair falling out is a completely different matter. I hover between being in a state of denial as I cannot believe that I am full of disease vs the factual evidence that I am undergoing chemo and my hair is falling out at a rapid rate. It started this morning with a couple of hair to big tuffs by this evening. And… the hair is falling out ALL OVER!!!

Today I had an air conditioner installed in our bedroom. This is preparing for the very hot Cape Town summer days and nights where I will be confined to the bedroom. Quite a number of friends dropped by for tea/coffee today and are very excited that they can spend time in the air conditioned bedroom with me in the coming months. They are even willing to bring their camping mattresses so we can all have a cool night of rest together! I think the support circle are getting far too familar wanting to share the bedroom with Ian and I :)

Sunday, November 11, 2007

Sat Sun 10 11 Nov 2007

Saturday was a stunning day with the core of my supporting team present, some 40 plus people. Colin (UK), Julian (Holland) and Alan (Centurion) did their own little shavathons. Eileen and John (Pretoria) and Francois (Johannesburg) did theirs last week-end. Hennie (my aunt) arrived from Singapore to surprise my mom and she will spend 2 weeks in Cape Town. The weather played along though it was quite cold. I am just waiting for the last contributions on the money front. Dylan, Sean and all the ladies were too attached to their hair! I am having technical problems getting some photo’s uploaded. I need to chat to the South Africa Blogging Queen tomorrow.

And THANK YOU to all who participated in this fund raiser for terminally ill children.

love you all

Friday, November 9, 2007

Fri 09 Nov 2007 Hair....

Another small bit of detail I noticed this morning. Last Saturday I had a lovely bath and performed my usual leg and underarm shaves. This morning I noticed that the hairs have not grown back. My mane of hair is dull and lifeless and no amount of conditioner is changing the texture. Just as well that I am cutting it tomorrow. I will not do a post tomorrow but will do an update on Sunday to cover the charity fundraiser. We have 10 families attending in Cape Town tomorrow and friends / family doing the same in Pretoria and UK.

Thursday, November 8, 2007

Thu 08 Nov 2007 Feeling more positive

I can hardly believe the first week of November has passed. Mom is nearly halfway through her 4 week visit. Dylan and Sean love Ouma’s cooking with each meal being a special request. Sean is spending many hours in the kitchen with Ouma learning her cooking techniques to help out on the evenings when I am not feeling too good. Next week Mom is going to be cooking up a storm to provide some frozen meals for the future. Even Dick (my youngest brother) has asked my mom to come to his home for a day…. to cook up a storm for them too. Nothing beats Mom’s cooking!!
I am feeling much better today on the emotional level, though I do have a sore hip. It is the same discomfort I had before the operation which I put down to the tumour. It is a little concern that I need to chat to Dr L about. I have had a very steady flow of visitors yesterday and today, and we are starting to apply boundaries in the afternoon for me to have my siestas.

Wednesday, November 7, 2007

Wed 07 Nov 2007 Emotional battle

Last night I sneezed and the tissue was covered in blood. Strange how everybody reacts when one has cancer, even a little blood from the nose becomes a big concern. The colour of the blood was more the issue for me – it was pink! Sean glanced at me and said “Oh, I have learnt about that in science, you have no red blood cells!” Another reality to face for me! The family were all in bed by 10pm and I sat around a bit longer reading the book that the boys bought me. Then the tears came, big emotional sobs…. Like I sobbed in the beginning when getting the news… I am even crying again as I write this…. I just feel so helpless in the battle… even my tears are not salty…. I just wish I could do more to help my body recover… I am on a special diet (no fat, no red meat) and have special vegetable/fruit drinks…. I take a handful of vitamins/minerals twice a day. What more can a 'normal' person do ?

Tuesday, November 6, 2007

Tue 06 Nov 2007 Aromatherapy Massage

I have promised myself that I would spoil myself during this challenge. The first being a full body massage between each chemo. I might even add in a facial but Mom is getting that today. On the massage front I am going to the salon with all my own carrier and essential oils as I am not sure what the salon uses. At the salon there was a lovely rose on my massage bed, just for me.

This morning was quite hectic with a steady stream of visitors and phone calls. Dr L has completed the medical reports for my employer and these are being delivered to me tomorrow.
Dylan and Sean were both home today on ‘study’ day. It is hectic with them both home and it is reminding me of the 7 weeks that start 30 Nov.
I am feeling good but get tired very quickly. It is now 3 weeks since the hysterectomy and I can start walking to build up my fitness levels.

Mon 05 Nov 2007 Pathologist visit

Today I had to go for my first blood test, just a full blood count as my red and white cells are now at their lowest. This also means that my immune system is at it lowest (7 – 10 days post chemo). All sick people and shopping malls are to be avoided for the next few days. As I am not allowed to drive yet, I have had to all on my chauffeuring services once again. Thank-you Anet and Malinda. After the pathologists we popped in at the NG Church Stellenberg (Monday morning is their quietest time) – they have the most fantastic Christmas craft market annually, this year they have 188 exhibitors. I could not keep my eyes open this afternoon – just goes to show that my body is not 100% fit, a little outing and I am buggered!

Sunday, November 4, 2007

Sat Sun 03 04 Nov 2007 Side effects settle

I am a bit more in the mood for writing this week-end.

On Tuesday morning as Dylan was saying good-bye to go to school, I was really weepy and asked “What if all this chemo is all for nothing? What if it all does not work”? Well, was I in for a surprise – Dylan did not offer any hugs or sympathy, just became really assertive “What have you always taught us… you must think positive… how would I pass my exams if I went into them thinking that I am going to fail. YOU KNOW this disease is all about your emotional thinking”!!! How was that – I got a kick in the arse from my own son !! (I am actually quite proud of him – all the years of moulding have paid off).

Have I ever mentioned that I am stubborn – ha ha ha ha. Dr L provided a medicine script on Thursday last week for all my side effects, which also covered a 5 days cortisone course. Well, I have not been taking the cortisone for my rash and Ian has been looking all over to Camomile essential oil. He eventually found it today and guess what – it is working miracles on the rash (which is now all over my body). Marietjie popped around yesterday with a goody bag from the health shop and I will continue to take the products to increase my body alkaline levels. I hope all these natural products reduce the side effects in Chemo round 2.

Friday, Saturday and today we had a gentle flow of visitors which meant I did not get my afternoon siestas, but I did manage to sleep each evening without a sleeping tablet. My joints are feeling much better and the nausea has settled (for 2 weeks)!

Friday, November 2, 2007

Fri 02 Nov 2007

Today was pretty much the same as yesterday. The pharmacy did not have anti-inflammatory tablets in stock yesterday and promised to delivery them. As I post this I still don’t have them!!! Makes me mad!!!

Thursday, November 1, 2007

Thu 01 Nov 2007 Chemo side effects

Bad day. Headache. Really bad skin rash. Feels like I have got gout in every joint (not that I have ever had gout before). Dr L provided a medicine prescription to counter all the side effects. On the good side, the nausea has settled.

Wednesday, October 31, 2007

Wed 31 Oct 2007 Quiet time / Fundraiser

Today was really quiet. A few friends of my aunt popped in for tea and I had an afternoon siesta (having these daily – I am going to have a real problem with facing a full days work in the future). I felt really shitty through the night and this morning. The nausea was sitting high, joints aching and the tiredness remains. After my siesta I felt a bit better, almost as if the nausea has settled. My dear sons presented me with a gift today, bought with their pocket money, a book “You Can Heal Your Life by Louise L Hay”. I am so touched by their thoughts.

On the fundraiser:
I am posting this for Cape Town based people.
We will have a fun afternoon where you can have a haircut or hair colour. Funky bright colours. Donations will be given to Reach for a Dream.

When: Sat 10 Nov
Time: 15h00 – 19h00
Where: email me if you planning on coming and I will send address
What to bring: All your own stuff for picnic, chairs, glasses, spray hair colour, good attitude.
Provided: Venue has a swimming pool and a fire will be provided for those who wish to barbeque.

Tuesday, October 30, 2007

Tues 30 Oct 2007 Bed rest

Yesterday I was fairly calm as we entered the oncology reception room. As it was my first visit, they whisked me off to the oncology social worker with my supporters in tow (Mom and Ian). There we had a chat for about 30 minutes and then we went to the chemo room. The room is fairly nice with about 20 reclining chairs and 2 beds. The beds are only for people who cannot sit anymore. I chose a circle of chairs that were empty, supporters still with me. The chemo nursing staff are unbelievable, you just cannot imagine a more special group of people. After some talking and explanation of the process, my left arm and hand was warmed to find a suitable vein. The needle was inserted and the first of about 10 bags / bottles of my cocktail started dripping in. I just could not contain my emotions any more, quiet a few tears were released by me and my supporters. This is so so real now, no escaping it anymore. (Maybe the pathologist made a mistake and I don’t have cancer). I guess about 2 litres of stuff was dripped into me in across a 5 hours time span. All this liquid in my body means that my bladder needs relieving. I did this twice alone but with the IV needle in my left hand, it is quite difficult to pull down your panties and pants, let alone get them up again. On the 3rd need to wee Ian goes with me and we huddle into the tiny toilet with drip stand in tow. Ian comments “we can join the mile high club now!”. I give him a sarcastic smile back…. All men think of!! Then whilst Ian is hoisting up my panties/pants he tells me how sexy I look today (see, it is still on his mind).

Saw my oncologist Dr L after the session and asked her a few more questions including asking for some paper work she needs to complete for certain work insurance policies. At home I am dizzy, really tired and all my joints aching. Had a very early dinner and was in bed by 2030.

Had a full 10 hours sleep and did not feel too bad today. I can feel the nausea brewing but the tablets keep it at bay. Just very tired with aching joints and had quite a few naps today.

Sunday, October 28, 2007

Mon 29 Oct 2007 Chemo Round 1

I just could not get myself to sleep. Eventually took another of the little white pills that induce sleep.

I am shitting myself, I am stressing, I just want to cry, I am going mad with my mental visualisation working overtime and this after prayers, meditation and affirmations. I shudder to think what I would be like without my tools.

Sat Sun 27 28 Oct 2007 Blessings

  • I have the most supportive network of family and friends standing up to win this battle with me. I am so grateful for all of you, for your prayers, spiritual healing and candles lit. Words cannot express what I feel in my heart.

  • For all the dinners that have been prepared and dropped at our home. Thank-you Anet and Caron. I feel really bad - as others are cooking, I am relaxing and have a little glass of wine.

  • Medical expenses that are covered by insurances.

  • My morning routine will be 30 minutes shorter as I don’t have to shampoo, condition, dry and style my hair

  • No more underarm or leg shaving

  • No bikini waxing

The week-end was quieter than anticipated, but it was most welcome.

Friday, October 26, 2007

Fri 26 Oct 2007 Fundraiser

This morning I had a wonderful bath. I have never had a problem spoiling myself totally at bath times. Sean always says “Mom, you so lucky being a girl and having all those nice bath things”. Every Christmas my wish list is the same - Bubbles and soaps – enough to get me through the year so that each experience is bliss.

A very empathetic lady phoned around 13h00 today to welcome me to the medical aid oncology ‘club’. All approved!!! Chemo round 1 set for Monday 29 Oct, 11h00.

Last week-end I had a chat to Leon and Dick (brothers). Emotionally I will not be able to handle my hair falling out in chunks, so I will be shaving my head before this occurs. “Alida wants to control the process J” From the discussions came the support that they will be shaving their heads with me and we open the challenge to other family members and friends. The idea is that we do some collection of money for charity (children with cancer) and a donation is given with each head that is shaved (we will allow No 1 and No 2 cuts – no longer than a No 2!). On Tuesday evening I bounced the idea off Alan Goodway, who popped in for a visit. Alan is based in Centurion (South Africa) and will be supporting the effort. People that wish to support the effort arrive at a venue (still to be agreed) with a picnic basket (all own suppliers – snacks, drinks, glasses), have a good time, shave a head and donate some money.

Will you support the fund raiser 10 November? Please complete the poll on the site. If positive results obtained, I will post the charity details, banking details, etc. We will need volunteers to arrange venues and haircutting tools – if available for this, please add a comment on this post. If poll negative, we will still do the family ‘shaving’.

Thursday, October 25, 2007

Thu 25 Oct 2007 Denial ??

Often we stand at life’s crossroads and view what we think is the END, but God has a much bigger vision and He tells us “Relax, it is only a BEND”

This morning I was standing in the bathroom, naked and ready to jump into the shower. I had a real good look at my body. My tummy is fairly flat (which it has not been in months), still a bit of swelling from the surgery, my hips are slimmer than they have been in months, overall a good shaped body for my age. If you were to see my physically, you would not say that I had big surgery 10 days ago - I am moving around, look and feel good.

I cannot believe that my abdomen is full of cancer cells.

Today is a magic day in Cape Town weather wise - Anet came to fetch me and we had a stunning lunch at Hillcrest (a local wine and olive farm).

Wednesday, October 24, 2007

Wed 24 Oct 2007 Chemo Facts

Monday was emotionally draining and yesterday was hectic as a bomb of knowledge was released into the universe. I am most grateful for all the texts, emails, telephone calls, visits, gifts and post comments. Please remember to keep them going thru the ‘quiet dark’ weeks ahead.

Back to the medical aid approval process. After phoning Oncology yesterday and getting practically nowhere, I phoned Dr V’s (gynie) assistant, C. We are on first name terms and I don’t even need to mention my surname. C has undertaken to chase Oncology morning, afternoon and night. Thank-you C. This morning an Oncology social worker phoned me and she is also chasing the process. She phoned me again this afternoon – all documents have been submitted to the medical aid…. I will chase medical aid tomorrow. All this means chemo will maybe only start next Tuesday.

Chemo treatment facts:

I need 3 to 4 sessions 21 days apart
My hair will fallout about 3 weeks after first session due to my chemo cocktail (Ian is looking forward to the natural Brazilian)
Full abdominal surgery when CA 125 under control. Each organ and abdominal wall will be ‘eyeballed’ and omentum (a lattice layer of fat in the abdominal wall - Alida’s simple understanding) will be removed as my type of cancer loves this fatty layer
2 to 3 more sessions of Chemo depending on CA 125 and full histology of omentum

Tuesday, October 23, 2007

Tues 23 Oct 07 Frustration

I was reminded today that I did not include my role as Cousin. Jandre, you will be pleased to see that I have changed my profile.

A hugely frustrating day….. after a few phone calls to the hospital I was told that the medical aid request is not submitted yet…. I am pulling out my hair (hehehehe only got hair for about another 4 weeks – I will explain the chemo plan in a future post). On the good side, Dr L (my oncologist) phoned me personally and told me all will be ok. I will get chemo next week. Got my CA125 (cancer count). It is 171. Unfortunately we don’t have a count before the tumour was removed – Dr L said it would have been more than double. Our target is to see it between 0-30.

Hennie, my moms sister, phoned me from Dubai this morning. After some chats, explanations and tears, she said something that resonated with me. My dear gran (my mom & Hennie’s mom) was diagnosed with ‘female organ’ cancer that has spread to the bladder some 40 years ago….. sound familiar ???? After quite some intensive treatment my gran lived into her nineties!!!!

Last week Tuesday while still in hospital, Dr V asks me politely if I have “passed wind yet”. I answer “No” fairly shyly. Later that evening Ian, Dylan and Sean are visiting during the permitted hour. I get up slowing and walk to the bathroom to relieve my bladder. I would not say I was walking…. More like floating with a carrot stuck deep into my behind. I relieve my bladder, and ‘gosh’ I pass wind. From my toilet seat I hear Dylan and Sean say “ Oh @#$, MOM IS BACK” (I think the whole E ward heard Alida has arrived). Fortunately I opted for a private room.

Monday 22 Oct Share the news

Had a bad night again in terms of sleep. Woke up at 0430 with a huge pain in my right side. At 0530 gulped to 2 painkillers and slept until 0700 with the pain still in my side - it was there the whole day (quite a bit to get used too.... sleepless painful nights..... uuurrrgggghhhhh )

The mission for today was to share my news personally with close work colleagues. I have now done this... It was an emotionally exhausting day.

Dylan and Sean read the posts today - it was really good for them to understand the illness and all the emotions - well done boys!

Quite a few friends popped by during the day and evening (Ally, Anet, Caron, Sanche & Ets) and I must thank all friends for the sms's and the comments on the posts. You do not realise the impact you are having on me and my family. Thank-you x x

The Oncology clinic was meant to phone me today. By lunchtime I had phoned them 3 times and on the 3rd attempt a lovely patient lady told me that they will be phoning me but they are still waiting for medical aid approval for the treatment. I want to scream "dont worry, I will pay for it myself" - I lesson in patience for myself coming thru this. I have been assured that chemo will start Mon 29 Oct. We have to starting fighting the cancer.

I have started spoiling myself on a different level. Ian bought me a few really nice PJs from an upmarket shop ( the general shops seem to target PJ's for the teens - I certainly cannot see
my 46 year old body in them.... Ian says he has no problem visualising me in them, but I will leave it at that). Also buying a few new duvet covers and a siesta blanket. Need to make my future environment really nice to be in.

(my personal email : ... for those who wish to mail )

Monday, October 22, 2007

Sat Sun 20 21 Oct 2007 - Family spotlight on ME

I got up Saturday feeling quite emotionally wobbly. I decided overnight that I would create this blog and that I would create a 'ceremonial magic' display for my healing (I will explain the term more in a future post). I have created my healing ceremonial display and am very happy with it. All family and friends are welcome to add to it.

Kevin and Karen popped in for tea where more emotions where shared. Then Jen (the sister-in-law which provide the whiskey - bless her soul) popped around for a supportive visit. I had a little afternoon siesta after which Wendy (another sister-in-law) popped around to offer her support. I must mention, I have a lot of sister-in-laws..... 5 of them - fortunately we all get along, or so I think.

Saturday evening was a big night for South Africa with the Rugby World Cup Final being played. We WON!!!! Leon (my boet) and Marietjie popped around to watch the game with us. Leon is really anger with the cancer and quite some emotion was shared when we saw each other for the first time Sat, since knowing of the illness.

I have made another change in my life. For years I have really enjoyed expensive brut bubbly but have only kept it for special occasions... bull dust with that idea, from now I will drink it when I want it.

My mom phoned late Saturday afternoon to tell me that she is coming to SA for a month, arriving 28 Oct. She lives in Holland and is finding the illness quite distressing and is adamant that she is driving me to chemo and that she is going to care for me. Bless her!

Sunday, my dad and his wife popped around and my youngest brother Dick and his wife Malinda. More emotions as the siblings and parents face me physically and need to talk to me about my illness.

Sunday nite.... crash with a sleeping tablet - I am starting to depend on the little buggers.

Fri 19 Oct 2007 - Reality shock

Last night I hardly slept a wink.

Jen (my alcoholic sister-in-law) smuggled a small cooler bag into the hospital for me yesterday and Ian and I had a few whiskeys to settle the emotions. I had big ones and Ian was only allowed to have little ones - my goodness, he can go home after visiting hour and have many more, besides which he still has to drive home !

After visiting hours the nursing trolley came past with the usual painkillers and sleeping tablets as options - I go full house - Need them all tonight! And from 2200 it is "Nil Per Mouth" as I need to go for full abdominal scan with a full bladder. Eventually at 0430 I get an injection, but still sleep evades me.

I get up at 7 to wash my face, brush teeth and shower. Have you ever tried to shower with a full bladder..... it is bloody awful. At 0800 the porter comes to fetch me and we take a trip to radiology, with plenty speedbumps to cross with my full bladder - urgh The hospital staff are all in a great mood, the foyer is decorated and all staff members are wearing their Springbok supporter jerseys, the folks are placing bets and everybody is joking around. South Africa is playing in the final on Saturday evening - Rugby World Cup fever has infected the whole nations.

The abdominal scan show that my lungs, speen, liver, kidneys are all clear of visible lesions - excellent news !!! That means that the cancer cells have not yet had time to adhere themselves and to grow into something that the human eye can see. (Dr V did mention that he removed a little growth, like a mole, from my bladder) .

Back to my ward to checkout as I want to go home now. My heart is heavy but I manage to smile. I forgot to mention, one of the nurses, Charlotte, was absolutely stunning with me yesterday and she popped around at the end of the day with a PS chocolate for me, with message "never give up". What more can I say.

I had a little afternoon nap at home and then Margie and Roza (two friends from work) came around to provide emotional support. It was wonderful drinking bubbly with the girls and to talk about non cancer stuff and to laugh, tho it hurts my tummy when I laugh, but what the heck.

We had a quiet family dinner, Dylan (16) went out and Sean (14) stayed home to watch the Rugby World Cup games for 3rd and 4th place. I went to bed around 2030 and just sobbed, and sobbed and sobbed, those raw emotional sobs.. .. all the questions 'why me?' I am just so so scared of the road ahead... and I am going to lose all my hair... I just cannot handle it all at the moment.

Thu 18 Oct 2007

How a persons whole life can be shattered within a few minutes. It is a sure fact that we are all going to die, but when death stares you squarely in the eyes, it is a very emotional matter to get to grips with !!

The background:

End July I went to see my gynie Dr V for my annual checkup. During this visit I explained the problems I had been having with intermitted bleedings.... probable cause being my age (46) and the onset of menopause. Dr V did the internal examine and found some things not being ok... so off we went to the scanning room where we found an ovarian cyst on my right ovary. It was about 7cm in diameter and looked quite normal with clear liquid. We agreed that I would go onto the teenage pill Yasmin for two months as ovarian cysts are fairly normal and they come and go naturally - the extra hormones would just assist this process.

About 5 weeks later I go see Dr V again. The cysts is still there and has now grown to about 8cm. Not much growth, but the content has become toxic and it was starting to make more ancilliary cysts. After discussion with Dr V we agreed that I needed surgery to remove the cyst. Surgery was planned around my working schedule for 6 weeks hence.

Monday 15 Oct 2007 I went to see Dr V again quickly before the planned surgery. The Cyst was still there and had grown into a healthy 13cm diameter presence. Monday evening Dr V said the surgery had gone very well, he removed the complete right ovary, my womb and quite a few smaller cysts from my left ovary. The left ovary looked very healthy and the balance of my internals looked great! (good stuff to know :) )

All the daily checkups with Dr V went well until Thursday morning. I was sitting in my hospital bed, quite happy after a lovely shower waiting for my 5 star breakfast to arrive. About 0745 Dr V phones me and asks if I am alone and can he come chat to me..... oh dear that means not good news!

And the news: Ovarian cancer Stage 3B This means the cancer has spread from the one ovary to the other but has also spread into the abdominal cavity where lesions smaller that 2cm can be found (technical description from wikipedia). I must get Chemo.

The balance of Thursday was a blur with various doctors visiting my bedside and all sorts of scans / x-rays and blood tests.