Saturday, February 28, 2009

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.

Wednesday, February 18, 2009

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.

Thursday, February 12, 2009

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.

Thursday, February 5, 2009

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.

Monday, February 2, 2009

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.