Wailing Wall

I have written many times how blessed I am with my circle of family and friends, and today I have to say that I am extremely blessed. Two weeks ago a dear friend, P, asked if I wanted to write a prayer as a friend of hers was going to Israel and she would gladly take my prayer to Jerusalem and deliver it to the Wailing Wall. The very next morning I wrote my prayer, put it in a sealed envelope and gave it to dear P. The letter left that Saturday and last week Thursday I received the wonderful news that the prayer had been blessed by the highest Rabbi and was placed in the wall. I cannot tell you how warm and emotional I felt with the news. I am not Jewish but I firmly believe that there in one higher power that governs all our lives.

September Bliss

The month of September was wonderful. Ian and I had a lovely long weekend at Grootbos Private Nature Reserve and the boys remained home without another incident where a major party was had. A couple of months ago, Ian and I also left them at home for one evening and they decided to have a little party. Over 40 kids arrived and apparently it was chaos. What we saw when we got home was a) the floors had been washed b) some glasses that are never used stood proudly on the TV cabinet as ornaments and c) our bar fridge was empty. Comments from the boys a) how do you know we washed the floors….. I said “the floor detergent is still outside” b) the comment was that they were not sure if the glasses went in the cupboard or were ornaments and c) Dylan’s comment was that he was wondering why so many kids were drinking light beers!! A big lesson was learnt and the have both promised they will never do it again. Then at the end of September we had a lovely family holiday at Sedgefield. The weather played along and we had a great time relaxing, reading, waterskiing, fishing, walking and cycling. Outdoor activities in nature make for early nights with loads of rest – just what the doctor ordered.

The CT scan last week has again reported ‘cancer stable’. I am still waiting for the tumor marker.

Yah Yah Yah

CT scan of today shown 'cancer unchanged' meaning I have no growth.... It has been stable now for over 4 months - lets hope and pray it remains that way. I still have to wait a few days for the tumor marker results.
I am doing really well. Working hard and back to normal on all fronts. I have this unruly bush of curly hair which is so thick, it is enough for two people. I am going overseas Saturday for 12 days (work) and will see my mom the weekend in between. Dylan is in the last weeks of school and starts his trial exams in less than 2 weeks and Sean passed his motorbike learners licence this week. So the boys are now independant in terms of day to day transport... what a change but I must admit the angels work overtime in our home and on the roads.

July 2009

The past 5 weeks have just flown by. Last week Thursday I saw Dr J at Clinical Trials. Part of the follow up is that I have blood tests and CT scan every 8 weeks and doctors follow up every 3 months. In essence everything is normal and my energy levels are really improving. The tumour are still there, however every small (11 and 5 mm respectively). The scan of 23 June showed a very small growth in the tumours but this is not enough change to say the cancer is growing. In the past month I have also had a bone density scan and this also showed that my bones are still ok even with the hammering that my body has had in the past nearly two years. My next CT scan is 13 August. I am feeling slightly anxious for this next scan and I really hope that I don’t end up stressing to the extent as I did for the previous. I was really in a bad way specially waiting for the results.

Blessings to God

I have passed the tests with flying colours. At this stage the cancer is stable, meaning that the tumours have not grown in the passed two months without my chemotherapy. My energy levels are improving and the colour in my face is starting to look normal again. I have even lost a few kilo’s now that I am not taking the cortisone.

Next CT scan is in 8 weeks time

May 2009

The past weeks have just flown past. Three weeks ago I went overseas for company business and also spent Mothers Day with my Mom in Holland. What a nice day to spend with your Mom. I am now off all medication for a whole week and am waiting to wake up with my body feeling full of energy. The energy side of life has been lacking as I feel constantly tired. Really frustrating, but then with the first round of chemo it did take nearly 6 months to recover, so this time will probably be no different. Everybody who sees me tells me that I am looking really good – the blue circles under my eyes are less and my skin has a healthy glow. And as always, there is nothing lacking with my appetite for good food. Last Sunday Ian and the boys got me a little kitten, so we are now the proud owners of a very busy cat where everything that moves is a toy. The dogs are really good with her and even old Amy (8 year old German shepherd) gently paws her. Today is Dylan’s 18th birthday – how time does fly when you look at the children growing up. My next tumour market and CT scan is planned for 18 June. So, all going well in the Riddell home.

2009 April 27

Last Thursday was an early morning start getting all the barium sulphate down my throat by 9H30 and before that I had to have my blood drawn and ECG done. Then the CT scan which has shown that the lesions are still the same size as a month ago. For the last two weeks I have been battling with a cold and a really bad cough so opted to give this last chemo round a miss. The sister at the chemo rooms said that I will feel really shitty after the chemo with my body already trying to fight the cold virus. I suppose my subconscious already had made the decision three weeks ago when I asked Dr J whether that session should not be my last chemo round. So besides the nagging cough I am looking forward to feeling normal again. I cannot begin to explain what it feels like to have normal energy levels – you feel like a new person who is alive for the first time where every morning is a lovely happy beautiful new day.

2nd last round Patupilone

The scan of just over a week ago showed that the lesions have decreased by 1mm. Not much and in discussion with Dr J last Thursday he said that he did not think the lesions would get any smaller as they are basically as small as a normal lymph gland is and we are dealing with scar tissue. So the medical opinion is that the lesions seem to be just scar tissue and all we are dealing with now is microscopic cancer. Meaning the medical doctors actually don’t know where the little cancer cells are hiding away. Based on this I have made the decision to have only one more round of Patipulone on 23 April. This is the same day that the clinical trials unit are planning for me to have CT Scans and tumour markers too. So, it is a good day to end it all – Have everything done on one day… It is going to be a marathon day!!! The last chemo round has left me feeling really fatigued and not too nauseas. Lots of rest has been the order of the day. We will see what the future holds as I remain under the watchful eye of the clinical trial.

Post chemo nausea

The past week has been a tough one. I have not been so nauseous in months and the headache was just unbelievable. Last Monday I left work a bit earlier due to feeling really bad. I had an afternoon nap and a tiny bit of dinner. I had also been having a huge pain in the right jaw which by Monday evening has developed into an acute pain with my jaw pulling (pushing) toward the left misaligning my bottom jaw by about 2-3 centimeters. My tongue was numb and my mouth completely skew. By 8pm I was ready to go to emergency rooms at the hospital and we were all really worried that I had had a stroke. The hospital staff was really great and I was assisted promptly in the ER. I had brought all my medication with me so the Doc could see what I had been taking for the nausea. She recognized with cause of my distress immediately…. I was suffering from side effects of my one nausea medication! Thank God this was the cause of my anguish!! A needle was inserted into my veins and some antidote was administered (in my distressed state I did not even ask what the medication was but presume it was cortisone). And guess what, the side effects of the antidote also affect me…. I had the biggest rush I had ever experienced! Everything was zooming around me and I was being really loving to Ian - I don’t think he has ever seen me so placid, grateful and caring….. I remained in hospital for about 2 hours waiting for the majority of the side effects to wear off and then stumbled back to our car – I just could not control my feet! Came home and went to bed only to find that I was on such a high that sleep eluded me – my sleeping tablet and a glass of milk with black pepper did nothing. Tuesday was more of the nausea, headache and fatigue…. All of which finally settled on Sunday. It is almost as though my body is saying it has had enough of all the medication!

6th round patupilone

My goodness, has it been six rounds already, I am sure you are saying. Well, for everybody who is not going through the process every 21 days, the time does fly, but for me, I am very aware of what occurs every 21 days. The last chemo round went ok, as per all the previous sessions. I am feeling loads of fatigue and quite some nausea – Spent most of yesterday in the horizontal position. Last Thursday I had a good chat to Dr J regarding where this drug is leading me. In essence, Patupilone is keeping a lid of the cancer growth, meaning it is not spreading but is it also not going away. At each CT scan the protocol is that a CA125 test is also done. The test done end February shows the CA125 going up from 7 to 17…. The dreaded increase of over 100 percent, so the next CT scan and CA125 is scheduled for 26 March

4 months of treatment – CT Scan

Thursday I had my two monthly CT scan. The same procedure where I first need to have blood drawn for my OV125 tumour marker and need to consume nearly one litre of barium sulphate – this stuff blows you up like something else – I am surprised that I am not floating yet! Directly after the scan I headed off to work and waited patiently for the doctors to phone with the results. I received the phone call around noon on Friday. The tumours are reduced in size again – the good news! I then asked the Doc how long I still need to remain on Patupilone? Surely this will only be for another few rounds and then I can get on with my normal life again. The reply was that I would need to continue indefinitely to keep the cancer at bay. The Docs are saying that it is my call when I discontinue with the treatment. At the time of the phone call I asked lots of question, but with the passage of time I have more questions now. I need to ask them why they say this – is this due to possible legal action should they recommend to discontinue treatment and then the cancer grow again? Or does the drug only target the tumour but not all the microscopic cells that are swimming around? My logic says that at a certain point I should be stopping the chemo. Or are the new chemo drugs being developed similar to chronic medicines like for high blood pressure – where they treat the symptom but do not address the cause. Is this because medically they don’t know what the cause it either?? I will continue to make a list of all my questions and asked them when I next see the Docs face to face, 12 March. For now, we continue for another two months (3 rounds of chemo) and then reassess with the CT scans end April.

5th round.... Patupilone

All systems go.... I am getting chemo tomorrow and had my blood test, etc today. I cannot begin to explain how happy I was when I received the call that chemo was on - I was really starting to get worried on a very different level - What if the programme gets stopped... Where do I stand then medically... and healthwise... and I know that the trial will get stopped at some stage... another reality I will have to face in the months to come.

Wed 11 Feb Comes and Goes

Well, I am still waiting for chemo and the frustration levels are rising!!! I am struggling to maintain a calm placid outlook on life!! For goodness sake… I am only human!!

On Monday I received news that the drug had only be shipped out the previous Friday so all going well I would receive chemo Wed 11th. Well, yesterday I had a number of telephone calls. The first one anticipated the drug to arrive by 13h00 and asked if I could be a the clinic at that time – after some deliberation with my diary I said I would be there a little later than one, but I would come thru. The alternative option was to wait until Monday as my oncologist would not be at the office today and tomorrow (and they have to be on site in case you have any reactions to the drug). Well, by 13h30 I still had not received the call that the drug had arrived. Waited and then phoned the clinic myself asking if I could as least have all the tests on Wed and then chemo Thurs (today) – this was later agreed to as my original oncologist Dr L said she would be on site. I was home only about 30 minutes when the phone rang… I would not be getting chemo until the trial company had proof that the medicine was transported at the correct temperature. So this morning I deliberated with going to the office or working from home. I decided on the latter and by this afternoon still don’t have news whether chemo will occur this week. I did tell the clinic this afternoon that early next week would not be so easy for me to change my work schedule and they accepted that.

The port has settled – just a bit uncomfortable.

5th round rescheduled

The operation went through successfully and it will take about a week to settle pain and sensitivity wise. Yesterday around 9am I started nagging the nursing staff for my discharge. I just wanted to get out the hospital and down to the trials unit so that they could start with all the testing and checking before chemo is administered. I eventually phoned the surgeon’s rooms and his assistant contacted him and reverted saying he would be with me in 10 minutes to do the discharge. Finally at 9h30 I was out the hospital and at clinical trials only to hear that I would not be getting chemo. The last batch of the drug underwent a problem with the refrigeration process meaning the drug was not to be used. They tried to source alternative drugs from other trial units in South Africa, with no success. The only option now is to wait for a new consignment which is on its way from Germany (which seems to close to my pen pal Geertje). It is estimated to arrive Friday 6 Feb but I have been warned it could take longer as there are normally quite some time delays at customs. So, for the moment I have rescheduled chemo for Wed 11 Feb. This morning as I was lying in bed still feeling the after effects of the anaesthetics and the pain in the shoulder, I was very grateful that I did not have the side effects of chemo at the same time and besides that I can now enjoy a glass or two of bubbly on my birthday tomorrow. Every happening / event in life always happens for a higher bigger reason, which is for our better.

Venous Access Port

I am back home and life has returned into it’s normal pace today. Last week I received approval that the pharmaceutical company hosting the trial will pay for the port procedure. This is an absolute blessing (as so many I have had in the past 16 months). Before work this morning I did all the Hospital pre-admission procedure and saw the surgeon and anaesthetist about the account settlement procedures. I need to be at the hospital 6am tomorrow morning with the procedure planned for 8am. Then I remain in hospital overnight and get my next dose of chemo a day earlier, being Wednesday. I have put in leave for the balance of this week as besides the chemo, I am not sure how I am going to feel.

Monday 19 Jan 09

Chemo last Friday progressed well at a very steady pace. My chemo dosage was reduced by 25% again due to the vein inflammation. This means I am now at 50% of the original dose and according to the Dr’s it is still enough to keep the cancer at bay. I did make a comment to my chemo buddy, Anet, that it makes you wonder why I needed such a big dose initially and was very abruptly reminded that I am on a clinical trial so they are testing the correct dosage!!! So far the side effects have been milder in terms of the nausea. I am still very tired and feel disorientated when I do too much physical and mental exertion. I also saw a surgeon today regarding having a port fitted – this is planned for Tuesday 03 Feb all things going well. Tomorrow should be a normal day at work and then I head off to Antwerp again for 9 days and will see my Mom this coming weekend. Even in Holland things have had there moments of strain as my Mom’s husband fell last Sunday and broke his hip. He is still in hospital post surgery and from there will be moving to a care centre.

Jacobsbaai

We have had a stunning 3 nights away and the boys were really on good behavior. They did not complain too much about the lack of internet and cable TV and both managed to get through a fiction book. This morning we got stuck in together to clean the house (my brothers seaside cottage) and left around lunchtime. Home in good time for me to get on top of the washing before tomorrow’s chemo session. I am feeling in good spirits as I prepare myself for tomorrow – more positive than I have been in months! Last week Dr T shared the detail of the CT scan. The one lesion that was close to my spleen cannot be seen anymore and the total diameter of the 2 biggest lesions was 32mm in the first trial scan and now measures 24mm. This is the best news that I could have hoped for and I can just hear God saying to me “where is your faith”! So for now, my decision is to remain on the trial for another 2 months and then we reassess again.

4th round Patupilone rescheduled

This morning I headed off to the oncology unit by myself, feeling healthy and in good frame of mind. My normal partner Anet could not make today because it is her birthday… our thoughts are with you today dear Anet. Instead another dear friend of more than 20 years met me at the oncology unit and spent 90 minutes with me. All the normal tests where done… ECG, heart rate and bloods. The wait was much less than last time, but still took 2.5 hours to see Dr T. We had a good chat and after some deliberation it was decided to reschedule my chemo session of today due to the inflammation I have in my veins. I am now on more medication to ease the inflammation over the next week with chemo now planned for Friday 16 January. I have fortunately already made peace with the fact that chemo’s occur when they have to and am taking the change in my stride. It just means that our family holiday next week needs to be cut short by a few days and I can assure you all that a 17 year old teenager is very happy that he is coming home sooner. What is it with teens not enjoying family holiday!!