Friday, March 5, 2010

One Year Down

It is hard to believe that exactly a year ago, I heard the words "We have a big problem." My treatment ended a little over six months ago and I now feel much better and the last year seems to be almost a dream. I have picked up weight (almost time to go on diet again!) The beaurocrats seem to think that I should not fly for 2 years as I may suddenly lose my senses and fly into a car or crowd of people. What rubbish! Yes the slim chance does  exist that a tumour could appear on my brain, but then, I am being constantly monitored and in any case that is not going to happen. Anyhow enough of that.

Last couple of weeks have been somewhat hectic in this part of the world. A number of massive fires broke out in areas around where we live.Some tense times! Although we had some rain, the drought seems set to continue. Daytime temperatures are often in the high 30's.

Off to Jo'burg again this weekend (Margi is doing a workshop there on Sunday)

Until next time, take care out there!

Friday, November 13, 2009

13 November 2009 (FRIDAY!!)

But then I am not supertitious. I saw a movie last night, titled "The Living Matrix" One needs to watch this movie with a totally open mind. There is a huge amount of information (mostly alternative/scientific) given. It is probably, therefore, a little difficult to digest all the information at one sitting.

One of the comments made by a German Doctor was "If you have a chronic disease and you think that it is incurable, then it will be incurable. Similarly if you think that the disease is curable, you will be cured"

This statement which was repeated by some other researchers, throughout the movie, but not in the same words, supports what I have always felt for many years now.

My assertions that positive thought can and does cure diseases, will I feel be proved correct. If the findings presented through the medium of this movie are even only half valid, current day medical science will in most cases become almost totally invalid!

A very thought provoking movie and if you get a chance to see it then please do so.

Take care!

Tuesday, November 10, 2009

12 November 2009

It is amazing how quickly time goes by. It is now some while since I wrote in this blog, partly through being a little lazy (popular pastime of mine) or not knowing what to say. However, today I have been thinking back to my trip to the Kgalagadi and the evening when I spent almost an hour talking to the partner of a cancer sufferer on the telephone while I was sitting at Twee Rivieren.

The results of my PET/CT scan and the examination by the ENT a month ago were very encouraging. In conclusion the PET scan report read "There has been a significant response to therapy when compared with the previous scan done in March 2009......................No new lesions are identified and no metastatic lesions are seen in the organs. No parenchtmal metastases or lymphadenopathy is seen. No skeletal metastases are noted"

Apparently one of the main concerns was that the tumour that I had coyuld spread easily to the bones and there is no sign that this had happened. There is one node in my neck that has been noted as being not quite "normal" but it is felt that this is as a result of the radiation.

What have I been doing for the last month. Click on - My Kgalagadi Adventure will provide some of the answers. I am still battling a bit to put on weight. So many are trying to lose weight and I never thought that I would ever battle to put on weight!

It is great to be home in Knysna. My strength is improving daily and I find myself able to tackle things which until quite recently would have left me exhausted.

Tuesday, September 8, 2009

Tuesday 8 September 2009

No, I did not disappear in a puff of blue smoke, although there are some days when I wish I had that option. Things have been very hectic over the last two weeks or so. Had to pack a whole bunch of things that had to come back to Jo'burg and then drive 1250 kms to Jo'burg. The Land Cruiser is not the fastest thing on four wheels, even when Margi condescends to drive it. Loaded an average speed of only 85kms an hour is achieved. On Tuesday last week the implants in my lower jaw were exposed and after a quick visit to the Prostodontist, impressions were taken and I had hoped to have the teeth fitted before we leave for Knysna tomorrow. No such luck, The technician said that there would not be enough time to complete the required work. Drat, I will have to go another month chewing on my 6 front teeth. Yes, I even ate the fantastic boerewors that Nadine gave me, chewing like a rabbit! The boerewors tasted much better than my earlier fantasies.
Yesterday I was admitted (for the last time!) to the Morningside Clinic where the PEG (feeding tube) and A-Port were removed. I have to admit that the PEG was a life saver but I am very glad to be rid of it.
A lot is planned for the next while. About a week after we arrive back in Knysna, we have a bit of a holiday planned. We will be going to Vermaaklikheid for 2 nights, Arniston for 1 night, De Hoop Nature reserve for 4 nights and then 2 nights on a working farm near Villiersdorp. Margi will then present a workshop on the Saturday.
We will be on our way back to Jo'burg at the end of the first week in October. Margi will be presenting a Teacher Training Course for 2 weeks. After I have had a PET/CT scan and seen the various specialists, I am escaping to the solitude and beauty of Kgagalagadi and the Kalahari. Margi will join me for a couple of days after she has completed the traing course.
I am often asked how I manage to remain so positive and focused. The answer lies in my planned activities for the next 2 months. Live, but truly live the present. A day does not go by without me noticing how blue the sky is and seeing the changes as Spring takes its course after Winter. Tomorrow and the days to come hold absolutely NO fear, but must be planned for. Note that I have not mentioned the past. I cannot change the past but I can positively influence what lies ahead. Every moment is precious.
Until next time, take care out there!

Wednesday, August 19, 2009

Wednesday 19 August 2009

I continue to make good progess. About 2 weeks into my radiotherapy, I found that I could not lie absolutely flat in bed without a persistent irritating cough developing. This obviously robbed both Margi and I of any sleep. I found the only way I could sleep was in a reclining chair in the lounge, which Greg has so generously lent to us. On our return to Knysna, the only place I was able to sleep was on the couch (2 seater!) in the family room. For the last 2 nights I have been able to sleep in a bed again. Fantastic! Another step forward.

Some while back I wrote about having observed that many people have little knowledge (I am generalising) about cancer and the treatment thereof. In some some cases, even patients who are undergoing treatment or who have recently being diagnosed with cancer. Yes, one may die of the disease but the huge advances made in treating cancer mean that in many instances the disease can be cured, particularly if detected early. I have found that there is a general consensus that all your hair will fall out if you undergo chemotherapy. This is not so. Some modern day chemotherapy drugs do not cause one's hair to fall out but may have other side effects not experienced with other chemotherapy drugs.

I am now eating almost normally even if I do take a while to consume a plate of food. Another step forward.

Look after yourselves and take care.

Monday, August 17, 2009

Monday 17 August 2009

A number of days have gone by since I last published to the blog. The reason is that I did not want to tempt fate. How so, I can now say that I have experienced a huge improvement over the last couple of days. Apart from the fact that I do not have much physical strength and that I still have occasional coughing/choking bouts when I take food orally, I feel much, much better and I feel that there is an improvement in allsorts of ways as each dat goes by.

I have had a number of questions about my feeding tube. I know that on occasion I have cursed the tube. It is not uncomfortable but gets in the way and is a general nuisance. In hindsight, I now realise that this simple little device has actually been a lifesaver. Credit must be given to Wikipaedia for the description of what a feeding tube is:-

A gastric feeding tube (or "G-tube," or "button") is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. The most common type is the percutaneous endoscopic gastrostomy (PEG) tube. It is placed endoscopically: the patient is sedated, and an endoscope is passed through the mouth and esophagus into the stomach. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.

Gastric tubes are suitable for long-term use; they last about six months, and can be replaced through an existing passage without an additional endoscopic procedure. The G-tube is useful where there is difficulty with swallowing because of neurologic or anatomic disorders (stroke, esophageal atresia, tracheoesophageal fistula), and to avoid the risk of aspiration pneumonia. It is also used when patients are malnourished and cannot take enough food by mouth to maintain their weight, such as with mitochondrial disease.

I know that what I have written over the last couple of weeks has helped at least one person to cope with and come to terms with this disease and it's treatment and I hope that many more will be helped by what I have written and will continue to write.

take care out there.

Wednesday, August 12, 2009

Wednesday 12 August 2009

It is amazing how quickly the time goes by. August is now almost halfway through and I guess it will not be long before we are dusting off the Christmas decorations again.

We went for a drive along the coast, south of Mossel Bay. A couple of years ago we had done the same and the whole area was full of wildflowers at this time of the year. Sadly, the current drought, which is apparently now the worst in 150 years, has taken it's toll and there were no flowers to be seen. Great drive though which saw us reaching Stillbaai, No whales spotted either.

Earlier this week I managed to get some food down orally but it is almost as if someone took a pin and pricked my bubble yesterday. I loast all interest in eating and had to once again resort to using the feeding tube. Throat is also sore at the moment. Anyhow, it would seem that i must be patient and accept that two steps forward may be followed by half a step backwards. Otherwise, I have picked up a bit of weight and most days I feel like a human being again. Still feel weak and cannot work up much enthusiasm to do anything too strenuous.

Winter has arrived again in the Southern Cape and some mountain passes are closed with snowfalls. Just wish we could get some rain. I hope that we do not have a repeat of November 2007 when in most areas the Southern Cape experienced rainfall of more than 400mm in the space of 72 hours.

Take care and look after yourselves.

Thursday, August 6, 2009

Thursday 6 August 2009

For the first time in over 3 weeks, I woke up this morning feeling a lot better. My nights have been plagued by not sleeping, coughing fits and just not being comfortable. It would also seem that my digestive system has begun to work as it should. Still not eating normally (using my mouth)and everything except some fluid is being taken using the feeding tube. Previously I was aware that my stomach was retaining food longer than it should. This I believe is as a result of the chemo-therapy which compromises the ability of the digestive system to process food. My plan of NOT trying to eat normally seems to be paying off with my cough and very severe throaat irritation now almost non-existent. I am going to give eating using my mouth a go on Monday, but I shall not approach this with the same amount of gusto as I did 3 weeks ago.

We hope to go and have a look at the wild flowers along the coast this weekend. I am looking forward to that. Have a great long weekend and take care!

Sunday, August 2, 2009

Sunday 2 August 2009

It is now almost 14 days since my radio-therapy treatments ended. I had been hoping that by this stage things would have been a lot easier. However, this is not the case. It seems that the internal radiation burns in my throat are going to take some time to heal. There is not much pain but if I try and swallow food, a violent coughing and choking fit is triggered, which lasts anywhere between 5 and 15 minutes. Really in a bit of a "catch 22" situation as I do not seem to be able to get enough calories through the feeding tube and I have now lost 14kgs in weight. One heck of a way to lose weight!

Anyhow I guess these are all further lessons in patience although I did consider myself a reasonably patient person if I knew that patience was needed in a particular circumstance.

It is one of those glorious days on the Garden Route, little cloud, no wind and reasonably warm. take care!

Thursday, July 30, 2009

Thursday 30 July 2009

It is wonderful to be back in Knysna. I am not sure of who wanted to get back home quicker. Margi and I shared the driving. The MAX recorded speed on the GPS was 173km/hr and I was not driving at the time!

I really am tired of the roller coaster ride I seem to be on at the moment. One day I feel much better and the next I am way down again. Since arriving back on Monday afternoon I have again not been feeling at all well. I put this down to a bit of fatigue from Monday's travelling. I am sure that a bit of R&R will only see an improvement.

I continue to take strength from that wonderful news given to me by the ENT last week and I can see the light at the end of the tunnel which is not that long anymore.

Sunday, July 26, 2009

Sunday 27 July 2009

After some very challenging days this last week, I woke up yesterday morning feeling a lot better. It was as if during the night a switch had been flicked over. I was able to eat a bowl of oats normally. First food that I had been able to swallow for about three weeks. The morning progressed well and I thought "Hey I cracked this one!", until about midday when the cumulative effects of the radio-therapy grabbed hold and laid me low again. The switch had been flicked back to the "off" position. Feel somewhat better today and in hindsight I guess that I possibly overdid things a bit yesterday morning.

Tomorrow (Monday) we will drive back to Knysna. Cannot wait to get back. It almost does not seem real that we have been in Jo'burg for almost 2 months.

I have watched most of the Tour de France. It is almost incomprehensible that the cyclists are able to ride at race speeds for three weeks with only 2 "off' days. One fact that does come across is the fantastic teamwork amongst the variuos teams. But then I guess that every success is marked by excellent support. I make use of this opportunity to again say that Margi has been an absolute pillar of strength. Her love and support has certainly helped me get where I am today. Alistair has also been a huge source of support and encouragement, especially during the last 2 months. I would also like to thank all our family and friends who have helped us to get to today. The love, help, support and encouragement has almost been overwhelming. Take care!

Thursday, July 23, 2009

Thursday 23 July 2009

Just a quick report. I saw the ENT late this afternoon and after he had examined my throat using a scope he declared that I was clean. No sign of a tumour, ulceration and other bad things. The nodes in my neck were also examined and appear to be clear. Very, very relieved. The next hoop I will have to jump through is in 12 weeks time, when I will have a PET/CT scan. Together with the scan results and the ENT's examination I WILL (that positive attitude stuff again!) be pronounced clean. Once I have remained clean for 2 years, I can consider myself cured.

Not able to have a party though as I now have thrush in my throat and I am nursing a sore throat from hell. Take care!

Wednesday, July 22, 2009

Wednesday 22 July 2009

After a very challenging couple of days I am now feeling much better. I had perhaps underestimated the cumulative side effects of the radio-therapy. Anyhow, that is behind me now and the free-wheeling can continue. (I am not particularly keen on saying it is all downhill from here!) Tomorrow afternoon I will see the Ear, Nose and Throat specialist who will survey the war zone and establish a point against which my progress over the next twelve weeks can be measured. Tomorrow I will also finalise arrangements for the removal of my temporary plumbing modifications on 7 September. One of these being the Arterial Port which assisted hugely with administering the various Chemo drips. The feeding tube is the other, which although very necessary, is the bane of my life. Even with the feeding tube I have still lost around 12kgs in weight. Without the feeding tube I would probably lost more than 20kgs.

I strongly believe the ATTITUDE one adopts towards every challenge and event that needs to be dealt with is of paramount importance. NEGATIVE ATTITUDE = NEGATIVE OUTCOME and similarly, POSITIVE ATTITUDE = POSITIVE OUTCOME. An easy recipe for success or failure, not only when fighting a life-threatening disease, but in everything we attempt, be it a job, a relationship, an unpleasant task or anything we need to achieve. A very liberal sprinkling of stubbornness and determination is also an advantage to adopting a POSITIVE ATTITUDE. It is not easy to always adopt that POSITIVE ATTITUDE, but then we need to remember the price that may have to be paid if not adopted. A dear friend of ours, Kim Beckett sent us a book, “Love, Medicine and Miracles” by Bernie Siegel (a surgeon) Although I am only about one third of the way through, it is very apparent that POSITIVE ATTITUDE is a major contributor towards beating a life-threatening disease.

That is enough for now and my rambling along. Take care out there!

Monday, July 20, 2009

Monday 20 July 2009

My Treatments Are Finished!!! This morning marked the last radio-therapy treatment. Only problem the last treatment seems to have had a real sting in it's tail and almost finished me. Very pleased to have finally got this behind me and after the last treatment this morning I felt fine. By midday I felt absolutely awful and slept for a couple of hours. I am still not feeling great and so I should probably dis-engage my brain and sign off. Take care !!

Thursday, July 16, 2009

Thursday 16 July 2009

One of the lessons I have learnt from this particular episode is that one has to trust and allow others to do the various things that are necessary. I have never really allowed anyone to control my life and destiny. That is probably why I never made a good passenger on an aeroplane. However, when necessary, one has to allow others to take control. Having said that, if one has the slighest doubt about what is happening, our right of free choice should be invoked and it is OK to ask questions or seek another opinion. Being in my current space, I cannot help but note the way in which some persons (in particular cancer patients) are horribly misinformed. Enough of that now.

I only have 2 radio-therapy sessions left. Still very strong mentally but the physical effects continue to take their toll. I now have had to resort to using the feeding tube for all my nutrition. One advantage is that all those "good things" that I should eat but did not like the taste now go down the feeding tube and I do not have to taste them. I still obsess about food, being able to taste and smell my favourite dishes. Last night the taste and smell of a nice curry with roti assaulted my thoughts!

At 3:00am this morning, the thought struck me that over the last 5 months, I have only spent 6 weeks at Spirit of Amberfield, our home in Knysna. Cannot wait to get home, see the mountains again and breathe some clean fresh air. A walk on the beach at Buffalo Bay also would be most welcome.

Again I must thank all of you who have left comments on my blog or sent emails to Margi. It really does help to know that there are so many persons out there rooting for me. Take care.