Tues 17th of Nov. 2009
The previous week I had had my mask made, now was the time to try it out in a dry run - the so called simulation- and and make sure that all the 'ports' for the radiation had been calculated correctly. The mask itself was an extremely tight fitting one that clamps over the face, shoulders and upper chest. They lay you flat on your back, put in a mouth piece and then literally clamp you to the table with the mask. No movement at all is possible! For the mildly claustrophopic like myself, it is not very pleasant, for the truly claustrophobic it must be alarming. AnywayI survived my fifteen minutes.
The idea of course is to make sure that your head is positioned in exactly the same spot for each session. Radiation is so precise nowadays that it is delivered in a narrow beam to the tumor from several different angles, so that the skin and non affected soft tissues only get the least possible dose of radiation. I'll try and get a photo of this and post it next week. I start my radiation proper next Monday on Nov. 23rd.
Friday, November 20, 2009
Monday, November 16, 2009
Stomach Tubes and PEGs
Monday, November 16th 2009
On Thursday last week I had a gastroscope examination and the placement of a feeding tube in my stomach. (A PEG for short) The problem was I was getting quite severe nausea and had difficulty keeping my food down, as well as it being difficult for me to swallow. Under (Heavy!) sedation they passed a tube down through my esophagus, and into my stomach and duodenum. There were a few ulcers on the wall of the esophagus, but other wise nothing too serious.
Then with the help of local anesthetic (and the heavy sedation - no point in being a hero unless it is absolutely necessary!) they put a tube through my abdominal wall and into my stomach. This allows me to feed my self without the inconvenience of it going through my mouth. I can't remember whether I mentioned it or not in a previous post, but the previous week -6th Nov. I had had all my teeth extracted prior to starting the radiation, so this had also added to my difficulties of feeding my self via. my mouth. At a rough estimate $250,000 of oral work over the years all removed in less than an hour!
I now feed myself via this PEG tube by taking a funnel and pouring in my canned nutrition.
I've been doing it for three days now and can notice the difference right away. First my throat is not nearly as painful, and secondly I'm getting back a little bit of energy. One problem had been was that I was really suffering from Malnutrition from my inability to get food down. Also much of the nausea has decreased.
No medical appointments to day! Tomorrow I am going to get my radiation mask fitted, and on Nov 23rd. - all being well I will start my radiation.. 5x a week for 7 weeks.
I'll write more later on this week.
Frank
On Thursday last week I had a gastroscope examination and the placement of a feeding tube in my stomach. (A PEG for short) The problem was I was getting quite severe nausea and had difficulty keeping my food down, as well as it being difficult for me to swallow. Under (Heavy!) sedation they passed a tube down through my esophagus, and into my stomach and duodenum. There were a few ulcers on the wall of the esophagus, but other wise nothing too serious.
Then with the help of local anesthetic (and the heavy sedation - no point in being a hero unless it is absolutely necessary!) they put a tube through my abdominal wall and into my stomach. This allows me to feed my self without the inconvenience of it going through my mouth. I can't remember whether I mentioned it or not in a previous post, but the previous week -6th Nov. I had had all my teeth extracted prior to starting the radiation, so this had also added to my difficulties of feeding my self via. my mouth. At a rough estimate $250,000 of oral work over the years all removed in less than an hour!
I now feed myself via this PEG tube by taking a funnel and pouring in my canned nutrition.
I've been doing it for three days now and can notice the difference right away. First my throat is not nearly as painful, and secondly I'm getting back a little bit of energy. One problem had been was that I was really suffering from Malnutrition from my inability to get food down. Also much of the nausea has decreased.
No medical appointments to day! Tomorrow I am going to get my radiation mask fitted, and on Nov 23rd. - all being well I will start my radiation.. 5x a week for 7 weeks.
I'll write more later on this week.
Frank
Wednesday, November 11, 2009
The story so far...
I'll post a more detailed 'story so far' later on.
Spring 2008
MDS (Mylo dysplastic Syndrome) high grade diagnosed
Acute Myelocytic Leukaemia (AML) diagnosed
In Hospital for one month undergoing Chemo, and Marrow ablation therapy
AML in remission
9/10/2008 - Bone marrow transplant
Feb 2009 MDS recurs - remaining stem cells are transfused
MDS goes into remission, but Severe Acute Graft v. host syndrome (GVHS) develops
On TPN (Intravenous feeding) for 3 months together withhigh dose steroids and immunosuppressive drugs
Cytomegalovirus (CMV) diagnosed. Start chemo therapy for this
Start to get improvement, but develop pain in the throat, and coughing up blood
Numerous test later....
October 2009 Squamous Carcinoma of the tongue and Throat diagnosed. Will be treated by Radiation and Chemotherapy (50% two year survival rate.)
Nov 6th All my teeth extracted prior to radiation
Nov 10th Radiation Mask made
Nov 12. Will enter hospital for placement of a Gastric Feeding tube
Spring 2008
MDS (Mylo dysplastic Syndrome) high grade diagnosed
Acute Myelocytic Leukaemia (AML) diagnosed
In Hospital for one month undergoing Chemo, and Marrow ablation therapy
AML in remission
9/10/2008 - Bone marrow transplant
Feb 2009 MDS recurs - remaining stem cells are transfused
MDS goes into remission, but Severe Acute Graft v. host syndrome (GVHS) develops
On TPN (Intravenous feeding) for 3 months together withhigh dose steroids and immunosuppressive drugs
Cytomegalovirus (CMV) diagnosed. Start chemo therapy for this
Start to get improvement, but develop pain in the throat, and coughing up blood
Numerous test later....
October 2009 Squamous Carcinoma of the tongue and Throat diagnosed. Will be treated by Radiation and Chemotherapy (50% two year survival rate.)
Nov 6th All my teeth extracted prior to radiation
Nov 10th Radiation Mask made
Nov 12. Will enter hospital for placement of a Gastric Feeding tube
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