For the last three weeks and for the next two and a half, I'm doing the 4 hour round trip from Venus Bay to Melbourne, every weekday. The plan was to stay at a friend's place closer to the hospital when I was too tired to make the trip. So far, I haven't felt too tired, so I guess that's good. I did think by now that the daily radiation treatments would have taken more of a toll. I'm glad it hasn't.
Luckily the Victorian government helps out with the petrol and maintenance on the car through the Victorian Patients Travel Assistance Scheme (VPTAS). They pay you $0.17/km if you need to travel more than 100km for treatment. This seems enough to cover the petrol and extra servicing required due to driving 1,600km a week.
Here's a link to download the claim form:
http://www.health.vic.gov.au/ruralhealth/downloads/vptas_claim_form.pdf
Saturday 9 October 2010
Wednesday 6 October 2010
Thrush!
It turned out the mouth ulcers were caused by thrush. A course of the right medication and they were all gone in a day and a half.
Much better now :)
Much better now :)
Tuesday 28 September 2010
Mouth Sores - Cancer Symptoms, Chemotherapy & Chemo Side Effects
I’ve had mouth ulcers for the past few days. It’s fair to say, I’ve had enough. Even swallowing water is very painful. The doctor gave me some liquid morphine to help, but it really doesn’t seem to be doing much. I think some topical anaesthetic would be better, like a cocaine mouthwash, but they won’t give me that for some reason. This article below says that it should only last a few days, which means it should be gone by tomorrow. Here’s hoping.
Mouth Sores - Cancer Symptoms, Chemotherapy & Chemo Side Effects
Friday 24 September 2010
Keep on treating it
Now that surgery is off the table for now, I've started another course of treatment back at Monash, Moorabbin. I'm just about to have my chemo pump disconnected this afternoon after my 5th radiation session. I'll have 4 weeks off from chemo while going back every weekday for radiation therapy. then in Week 5 of treatment have another week of chemo to top it off.
Fingers, toes and everything else crossed that all this works.
I don't feel too bad, so I'm hoping it stays like this for the whole or most of the time anyway.
Fingers, toes and everything else crossed that all this works.
I don't feel too bad, so I'm hoping it stays like this for the whole or most of the time anyway.
Not what I expected
Well, it's been a while since I last felt like writing here.
I went to Monash for the operation. Suffice it to say, nothing much went to plan.
Having arrived late morning for an afternoon operation, just being given an epidural and then at literally the last minute, being bumped for an emergency. Fair enough. They sent me to stay at the Medi-hotel in the hospital, so Mum, Dad and I went back to their hotel for dinner and I went back to the hospital later.
The surgery was rebooked for the early morning and proceeded as planned, to the point where after making the main incision across my abdomen, the surgeon did some feeling around inside and discovered that the coeliac plexus nodes were enlarged, indicating metastases. So, that was it. They sewed me back up and abandoned the operation.
As I was waking up from the anesthetic, the anesthetist told me what happened. I was still quite groggy, but I understood what he said and what it meant.
I was taken to a ward to recover and rest. Meanwhile, my parents were still waiting at Theatre for news. They asked for numerous updates and were told that I was still in theatre. Eventually, they were told that I'd left theatre and the to try ICU. ICU did,'t have me. Eventually, 3 hours after I went to the ward, my poor parents, who must have been beside themselves, were told where I was, but they still hadn't been told what happened, or didn't happen. Joseph, at home, looking after our animals, was still in the dark too.
I told them what the anesthetist told me, and we tried to contact the surgeon for some information, but this proved fruitless for the rest of my time at Monash. The staff doctors came to speak to me, but were not particularly knowledgeable about my case, the oncologist not even knowing where my tumour was.
Anyway, a few days in a shared, noisy ward in a public hospital and I was well enough to come home. Mum and Dad stayed and helped for another week and both my lovely sisters came to visit too.
I went to Monash for the operation. Suffice it to say, nothing much went to plan.
Having arrived late morning for an afternoon operation, just being given an epidural and then at literally the last minute, being bumped for an emergency. Fair enough. They sent me to stay at the Medi-hotel in the hospital, so Mum, Dad and I went back to their hotel for dinner and I went back to the hospital later.
The surgery was rebooked for the early morning and proceeded as planned, to the point where after making the main incision across my abdomen, the surgeon did some feeling around inside and discovered that the coeliac plexus nodes were enlarged, indicating metastases. So, that was it. They sewed me back up and abandoned the operation.
As I was waking up from the anesthetic, the anesthetist told me what happened. I was still quite groggy, but I understood what he said and what it meant.
I was taken to a ward to recover and rest. Meanwhile, my parents were still waiting at Theatre for news. They asked for numerous updates and were told that I was still in theatre. Eventually, they were told that I'd left theatre and the to try ICU. ICU did,'t have me. Eventually, 3 hours after I went to the ward, my poor parents, who must have been beside themselves, were told where I was, but they still hadn't been told what happened, or didn't happen. Joseph, at home, looking after our animals, was still in the dark too.
I told them what the anesthetist told me, and we tried to contact the surgeon for some information, but this proved fruitless for the rest of my time at Monash. The staff doctors came to speak to me, but were not particularly knowledgeable about my case, the oncologist not even knowing where my tumour was.
Anyway, a few days in a shared, noisy ward in a public hospital and I was well enough to come home. Mum and Dad stayed and helped for another week and both my lovely sisters came to visit too.
Saturday 7 August 2010
Eek... surgery in 3 days!
While going happily along thinking I had another two weeks of "normal" before surgery, the hospital called yesterday to tell me that they've brought it forward to this Tuesday.
To say I'm unprepared is an understatement - practically and mentally. I had intended to give up smoking two months before surgery... mmm... So, now I'll quit when I'm IN hospital. Too late to worry about it now!
Mum and Dad have had to drop everything to come down a week earlier than planned. It sounds like it's all organised though.
To say I'm unprepared is an understatement - practically and mentally. I had intended to give up smoking two months before surgery... mmm... So, now I'll quit when I'm IN hospital. Too late to worry about it now!
Mum and Dad have had to drop everything to come down a week earlier than planned. It sounds like it's all organised though.
Monday 2 August 2010
Date Set
My surgery has been scheduled for the 16th of August.
So, I have 2 weeks left before I start Life2.0.
I looked up some information on the operation. It's not a pretty sight. I'm glad I'll be oblivious to it all.
So, I have 2 weeks left before I start Life2.0.
I looked up some information on the operation. It's not a pretty sight. I'm glad I'll be oblivious to it all.
Sunday 1 August 2010
Scan Update
I had a CT scan a few weeks ago to see how well the chemo worked. I'm happy to report that the tumour wasn't detected in the scan. This is very good news. Now I have to go to Monash on Wednesday for a pre-admission clinic. I'm on the urgent waiting list, so am expecting to be under the knife in a week or two for my "Ivor Lewis Oesophograstrectomy".
Tuesday 13 July 2010
I should be...
I should be losing weight before I have surgery. I am sad to say, that after early success, I've plateaued. Maybe plateaued is being generous.
Back on track tomorrow.
Back on track tomorrow.
The middle bit
I finished chemo a month ago. Now I'm waiting until Monday to get the results of my post chemo CT scan.
I think it will show that the tumour has shrunk, since I can swallow normally again.
Towards the end of the chemotherapy, I developed numbness in my right hand. It's still numb, but the area affected is now only the fifth finger (pinky!) and that edge of my hand.
My hair is growing back faster now that the chemotherapy effects are wearing off. It looks wierd all short and spikey, so I shaved it off again today. I'm getting used to having a bald head and have almost stopped being surprised when I see it in the mirror.
I think it will show that the tumour has shrunk, since I can swallow normally again.
Towards the end of the chemotherapy, I developed numbness in my right hand. It's still numb, but the area affected is now only the fifth finger (pinky!) and that edge of my hand.
My hair is growing back faster now that the chemotherapy effects are wearing off. It looks wierd all short and spikey, so I shaved it off again today. I'm getting used to having a bald head and have almost stopped being surprised when I see it in the mirror.
Monday 12 July 2010
Hello, I have cancer
I found out that I have cancer on Wednesday, the 3rd of March, 2010. I think everyone who gets the news probably remembers the date.
It wasn't the last thing I expected to hear though. For the previous month or two, it was there in my mind that I had oesophogeal cancer. I was listening to the radio in the car one day to a doctor who was talking about the increasing incidence of oesophogeal cancer in men aged over 40. I sat there, mentally ticking off the symptoms as the doctor listed them. He said that most people with the disease have trouble swallowing solid food - check - reflux and heartburn - check - the fact that I was going through five bottles of Gaviscon Dual Action a week should have been enough to alert me to the likelihood that something was wrong.
After a while, I decided that as the problem wasn't going away, I should see my local doctor. She referred me to have an gastroscopy. The original appointment was for somewhere near the end of April, six weeks away. Luckily, I asked the receptionist to put me on the cancellations list. They rang me on the next Monday and asked if I could come in on Wednesday, the 3rd of March.
The gastroscopy was uneventful. The debriefing afterwards wasn't. The doctor went straight in and told me that I had an ulcer in my stomach that was causing the reflux and heartburn. He also said that they found a mass at the junction of my stomach and oesophogus. He said "I think it's cancer. I hope I'm wrong, but I don't think I am."
My memory of the rest of the time there is a little hazy, due to the lingering effects of the sedation and maybe being in shock - a bit. Luckily Joseph was there to take it all in.
One of the things I asked was whether I should stop smoking straight away. He said no - due to the stress - which I took to mean that it was probably too late anyway - the horse had bolted.
The next move was an appointment with a surgeon in Dandenong for his opinion. That was a week away. Now the waiting had begun. The next four weeks involved a series of scans, CT, PET and Gated Blood Pool. There was a week of waiting between each scan and then finally to see the surgeon for the staging results.
The results were in. I was glad to hear that it was considered to be a Stage One adenocarinoma, T1 or T2 and that it was curable and that there was no evidence that the cancer had spread beyond the GOJ (Gastro-Oesophogeal Junction). Up until that point, the oncologist had set out both the curative path and the palliative path. I wanted to be on the curative path, of course, and now it was confirmed that I was.
Another week later, I started on a chemotherapy regime called MAGIC ECF. This involves three, three week cycles of chemotherapy, with a long session once every three weeks and a pump attached to a PICC line in my arm which lasts for seven days.
Having chemotherapy before surgery has proven to increase patient survival rates for this type of cancer by 20%. Its purpose is to shrink the tumour and eradicate any microscopic metasteses that weren't detected in the PET scan, thereby greatly reducing the risk of cancer returning later.
At the time of writing this, I am about to start the third and final cycle on Wednesday. I'm looking forward to Thursday. The start of each cycle involves a long session at the Chemotherapy Day Unit at Monash, Moorrabbin where I have infusions of three chemotherapy drugs one after the other. All is well until about half an hour into the 2 hour trip home when I start to feel sick. It's only nausea, but unpleasant none the less. I feel a bit tired the next day, but fine for the rest of the time during each cycle.
Some of the side effects from the chemo that I have experienced are hair loss (still getting used to having a baldish head), dry and cracked lips and sore feet. The nurses at the Day Unit are great though and arrange for the treatments to alleviate the side effects. So far, so good. All under control - except for the hair loss.
The next step, about eight weeks after the end of the third chemotherapy cycle, is surgery to remove the tumour. This will be a six hour operation where the surgeon will remove part of my stomach and oesophogus.
Then, after another month or two, restart another three cycles of chemotherapy.
After all that, it should be over. I'll be effectively cured of cancer and can get on with the rest of my life.
It wasn't the last thing I expected to hear though. For the previous month or two, it was there in my mind that I had oesophogeal cancer. I was listening to the radio in the car one day to a doctor who was talking about the increasing incidence of oesophogeal cancer in men aged over 40. I sat there, mentally ticking off the symptoms as the doctor listed them. He said that most people with the disease have trouble swallowing solid food - check - reflux and heartburn - check - the fact that I was going through five bottles of Gaviscon Dual Action a week should have been enough to alert me to the likelihood that something was wrong.
After a while, I decided that as the problem wasn't going away, I should see my local doctor. She referred me to have an gastroscopy. The original appointment was for somewhere near the end of April, six weeks away. Luckily, I asked the receptionist to put me on the cancellations list. They rang me on the next Monday and asked if I could come in on Wednesday, the 3rd of March.
The gastroscopy was uneventful. The debriefing afterwards wasn't. The doctor went straight in and told me that I had an ulcer in my stomach that was causing the reflux and heartburn. He also said that they found a mass at the junction of my stomach and oesophogus. He said "I think it's cancer. I hope I'm wrong, but I don't think I am."
My memory of the rest of the time there is a little hazy, due to the lingering effects of the sedation and maybe being in shock - a bit. Luckily Joseph was there to take it all in.
One of the things I asked was whether I should stop smoking straight away. He said no - due to the stress - which I took to mean that it was probably too late anyway - the horse had bolted.
The next move was an appointment with a surgeon in Dandenong for his opinion. That was a week away. Now the waiting had begun. The next four weeks involved a series of scans, CT, PET and Gated Blood Pool. There was a week of waiting between each scan and then finally to see the surgeon for the staging results.
The results were in. I was glad to hear that it was considered to be a Stage One adenocarinoma, T1 or T2 and that it was curable and that there was no evidence that the cancer had spread beyond the GOJ (Gastro-Oesophogeal Junction). Up until that point, the oncologist had set out both the curative path and the palliative path. I wanted to be on the curative path, of course, and now it was confirmed that I was.
Another week later, I started on a chemotherapy regime called MAGIC ECF. This involves three, three week cycles of chemotherapy, with a long session once every three weeks and a pump attached to a PICC line in my arm which lasts for seven days.
Having chemotherapy before surgery has proven to increase patient survival rates for this type of cancer by 20%. Its purpose is to shrink the tumour and eradicate any microscopic metasteses that weren't detected in the PET scan, thereby greatly reducing the risk of cancer returning later.
At the time of writing this, I am about to start the third and final cycle on Wednesday. I'm looking forward to Thursday. The start of each cycle involves a long session at the Chemotherapy Day Unit at Monash, Moorrabbin where I have infusions of three chemotherapy drugs one after the other. All is well until about half an hour into the 2 hour trip home when I start to feel sick. It's only nausea, but unpleasant none the less. I feel a bit tired the next day, but fine for the rest of the time during each cycle.
Some of the side effects from the chemo that I have experienced are hair loss (still getting used to having a baldish head), dry and cracked lips and sore feet. The nurses at the Day Unit are great though and arrange for the treatments to alleviate the side effects. So far, so good. All under control - except for the hair loss.
The next step, about eight weeks after the end of the third chemotherapy cycle, is surgery to remove the tumour. This will be a six hour operation where the surgeon will remove part of my stomach and oesophogus.
Then, after another month or two, restart another three cycles of chemotherapy.
After all that, it should be over. I'll be effectively cured of cancer and can get on with the rest of my life.
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