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 na├»ve 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.