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!

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!

Sun 25 Nov 2007 Grief

Elizabeth Kűbler Ross ( http://www.elisabethkublerross.com/ ) 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.

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!

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!

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.

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 [mailto:judith@reachforadream.org.za] 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,
Judith

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.

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 :)

The Squad

GI Alida

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

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.

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.

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 ?

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!

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)!

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!!!

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.