Tuesday, 13 September 2011
Without this vital drug that increases my quality of life massively, being on the PBS it costs $35 a day. That's a LOT when you're on a pension.
Time to lobby my local MP to get it on that list.
Without glycopyrrolate, I produce too much saliva, which given the hole in between my stomach and lungs, means I spend all day coughing it up through my lungs. Not pleasant at all and literally life destroying.
Here's my call for Glycopyrrolate to be added to the PBS ASAP.
Sunday, 31 July 2011
I had a call this morning from my oncologist, who was planning to come and see me this afternoon. He's not now, due to the fact that he dislocated his shoulder at Mt Buller yesterday. He told me that he didn't think it was too late to start a secondary course of chemotherapy and that I should make an appointment to see him at Cabrini when I get out of Monash, which is looking like being on Wednesday.
In any case, it was good to hear something other than pessimism from a medical professional.
Saturday, 30 July 2011
There's the husbands and wives and the unmarried life partners who are left behind to pick up the pieces of their lives, often without the benefit of much support to help them. We all make plans with our partners and it's a tragedy when time runs out before those plans get the chance to come to fruition. All we can do is our best to make sure affairs are in order to minimize the possibly of an intestate estate delaying the vital funds a person needs when they lose their partner.
No parent ever expects or wants their child to predecease them, no matter if that child is 4 or 40. It would be one of the most emotionally scarring events in their lives, that they would live with forever. Sure, time would heal the wounds to a degree, but still...
Then there are all the other family members. Sisters, brothers, nieces, nephews, who may be too young to understand what's going on. Grandparents, especially the WWII generation have seen harder times and lost more of their families than most of the rest the population. That said, they are not so inured by loss that their memories of grandchildren arriving and all that goes with being a favourite Nanna or Pa leaves them unaffected. In all likelihood, the stoic attitude of that generation can hide deep grief.
Brothers and sisters who grew up together, never would have imagined that their sibling would one day get sick and die prematurely. It's hard all round - except for the one who's actually dead or dying.
Then of course are all the friends, close and merely acquainted. A good friend dying leaves a huge gap in a person's life.
These are the people I worry about more than me. As I say, if the worst comes to worse, I'll never even know, but for everyone else, it's the start of a whole new world of grief and pain that will last for as long as it lasts.
It's nice to be remembered, but nobody wants to be the cause of all that grief.
That wasn't the whole story though. I called my GP and told her how I was getting by on around 100 calories a day and losing weight fast. I'd gone from around 130kg to 75kg in six months with 13kg lost in the past month alone. I asked her to call my Gastroenterologist at Monash and see what to do. He said to get straight to Monash for a gastroscope and a feeding tube insertion.
The GP arranged for the ambulance to pick me up and bring me to Melbourne.
All seemed like it would be ok until after the gastroscope. The doctor gave me the grim news that he thought the cancer had returned. Six weeks prior, at the last gastroscope, all looked clear and on the way to healing. Now the stomach was inflamed and there was evidence of a hole leading directly from the stomach to the lung. This, he thought was a direct result of the cancer returning and had probably been brewing in the background for a while. In any case, it explained why I constantly had fluid on the lungs and was hacking up phlegm all the time. The lung and stomach were touching each other and the cancer had made a direct conduit between the two.
I asked the doctor what all this meant in terms of a revised life expectancy. He said "weeks". As I was still coming out from under the anesthetic, I didn't really take it in straight away.
The following few days involved my parents coming down from Sydney and lots of other questions to the doctors about further treatment options. The doctors here at Monash, as well as my surgeon didn't hold out any hope for further treatment, saying that any more surgery would be essentially futile and more chemotherapy would most likely be fatal, especially if I was to develop another lung infection while my immune system was being compromised by the chemotherapy. Radiation was also out of the question as I have already had the maximal dose of radiation therapy last year.
So, I have two choices. The first and easiest is to roll over and accept the bad news and wait to die, or explore my options. Not being ready to die, I've decided to explore my options.
I've asked the doctors to suggest other specialists for me to consult regarding a second opinion, both in Melbourne and Sydney.
There is an oncologist known to the family in Sydney who has kept my cousin alive for seven years after initially giving her six months to live with stage four breast cancer. I will make an appointment to see him as soon as possible with a view to getting some treatment underway.
I know the odds may be stacked against me with this, but they always have been. It comes down to those two choices. Roll over and accept death or fight it and maybe survive for years to come. We all know of people who've defied the odds and beat cancer despite being given a grave prognosis. Why not me too?
Monday, 11 July 2011
I called my doctor a couple of weeks ago to tell her they the antibiotics I was on didn't seem to be working and despite being on stronger and stronger antibiotics, it seemed to be getting worse. She told me I should go to hospital for some tests and to have some IV antibiotics. That sounded like a good idea.
I called an ambulance to take me to Wonthaggi Hospital. They took lots of blood for testing and admitted me to a private room to isolate me in case I was contagious. Some tests take longer than others. The one for fungal infection took three days. So, after three days in hospital, we finally knew what to treat - candida. A course of fluconozole seemed to do the trick and both the coughing and highly coloured phlegm reduced dramatically, to the point where they sent me home. Now after finishing that course, it's starting to reassert itself already. Luckily I have another course waiting to be picked up from the chemist.
It worries me, though that it should come back so quickly after being assured by the Dr at the hospital that only one course was necessary, I appear to need more medication.
I should find out where I can get this stuff - pau d-arco. Looks like it has both anti candida and anti cancer properties.
Sunday, 10 April 2011
At first, after leaving hospital I was a little apprehensive. After 6 weeks inside, the outside world and the 2 hour car ride home seemed daunting. Nothing to worry about of course, but it did take all of Saturday to recover from Friday.
Earlier on Friday I had a gastroscopy with the associated mild anesthetic, followed by hours of waiting for the various reports and visits from the dietitian with my supply of Ensure Plus, then another few hours before the pharmacist came with my plethora of drugs to bring home. In any case, it was a tiring day and I basically slept it off on Saturday.
Today is much better.
From now on I should be better every day and eventually back to normal, hopefully better than normal in some cases.
- Posted using BlogPress from my iPhone
Thursday, 7 April 2011
On the whole, our public hospitals do a fantastic job of looking after the sick. Overall, my experience in one of Melbourne's biggest public hospitals has been positive. Of course there are things that could and should be done better, but I'm sure that's the same in the private system as well.
Before I came in to hospital, my doctors made a big point about how important post-operative physiotherapy would be to speed my recovery and help prevent phlegm build up in the lungs. Avoiding lung infection being the goal.
On the first day after the operation, while still in a heavy post-op drug haze, the team from physio arrived and got me out of bed, into a chair and we had a short walk around some part of ICU. All went well and l was told how well I did. I was left with the impression that phyio would be back every day or so to assist me with my recovery while I was in hospital. The reality of course was a little different. Over the next five weeks, I think I saw them maybe two or three times after getting the doctors and nurses to get them here. I suspect their main role is for new patients to kick start their recovery rather than to have an ongoing treatment relationship when a patient stays in hospital for longer than normal. This is a shame because greater physiotherapy involvement would help speed up recovery. As long as you follow their initial advice and do the deep breathing and coughing exercises all is not lost though and you can still get some benefit from Physio's advice, if not their actual involvement.
As far as pain relieving drugs are concerned, I'm sure Ketamine is up there with the best of them. I was on a ketamine PCA for about three weeks after the operation and can honestly say, was almost pain-free the whole time thanks to it and the fentanyl patches on my skin.
Ketamine also has a darker side to it. It's a fine pain killer, but after three weeks I found that I was starting to experience side effects that could literally be described as wierd and wonderful.
First the wonderful.
It started out as hallucinations of white faced cute pussy cat faces in a kaleidoscope puffing their cheeks in and out when I was swishing water in my mouth to combat the dryness I was suffering.
Then i started to have dreams that could I have somehow recorded them would have been masterpieces of cinema too clever for me to contemplate otherwise. The sheer clarity of thought. I'd even convinced myself that I was doing some short haul time travel to the next day and back.
Now for the wierd. Let's just say nightmares and leave it at that. I consider myself lucky I didn't get the spider hallucinations that some others get on it.
More to come later.
- Posted using BlogPress from my iPhone
Sunday, 3 April 2011
When I do go home, it will be with a renewed lease on life. Having not smoked since coming into hospital, I see no reason to take it up again when I get out. Quitting smoking will have two main benefits as far as I can see. The main one being the reduction in the risk of the cancer returning which is my top priority and the huge amount of money saved over time by not spending between $16 and $20 every day on them.
- Posted using BlogPress from my iPhone
Thursday, 31 March 2011
That happened. The operation went ahead as planned and all looked good/as expected for the first few days afterwards. Things soon fell apart though.
Firstly, the join between the esophagus and the remaining stomach hadn't taken. There were holes. This is where the pain began. I was rushed off to Radiology to have a chest drain essentially rammed through my back with a local anesthetic while lying on the CT scanner on my front (bearing in mind the abdomen had only recently been closed up from the operation.) suffice it to say, it hurt - a lot. It's almost funny to remember being told by the radiologist to lie still whilst writhing in agony.
I still have that drain and associated bag attached. It's collecting a lot less fluid and gunk, so I guess that's a good thing.
- Posted using BlogPress from my iPhone
Wednesday, 23 February 2011
I went to the Pre-admission Clinic yesterday, and as suspected, it was a largely wasted trip. Not to mention having to wait over two hours after my appointment time to see the doctor for less than 10 minutes. He got to fill in his form though, so it wasn't a complete waste of time, I guess.
I also had a chest x-ray. This could have been done last week, when I went for the Anesthetic Clinic. Oh well, ask the patient to make two 4 hour round trips and wait around for hours so the hospital can tick a few boxes. I understand that there are procedures to ensure quality care, but it really does need to be better coordinated.
I also ran into my surgeon in the corridor. He confirmed the 28th and told me it would be in the afternoon.
I'm lucky to live in a country where we have free health-care, so I'm not complaining about that. A patient's agent might be the way to go. Someone who knows all the procedures, who can plan the ticking of the boxes with minimal intrusion into the patient's time. Do all the box ticking in one visit perhaps.
Friday, 18 February 2011
It is supposedly for picking up any undiagnosed problems which could cause surgery to be cancelled on the day.
Well, as someone who has been in and out of hospitals and attended more than 30 doctor's appointments over the last year, I'd be surprised if they've missed anything.
Thursday, 17 February 2011
I have mixed feelings about the surgery. Intellectually, I know it's the best hope of a cure and will give me the best chance of living a relatively normal life in the long run. The other side of that is probably fear-based, but makes me think that I feel fine now and am enjoying good health otherwise. Why spoil it all with major surgery that will take 3 months to get over to the point where I can do things like go shopping or go to work?
I know that if I do nothing, the cancer will come back, probably worse than before and would probably be fatal. So... To the operating theatre! Cut it out, get rid of it and get on with it. I have to think like that.
Sunday, 13 February 2011
Friday, 11 February 2011
Thursday, 10 February 2011
All hope is not lost though. I'm being booked in for another go at the Ivor-Lewis Oesopho-gastrectomy in 3 - 4 weeks. I'm not looking forward to the operation and the 3 month recovery, but it really is my best chance of a cure. I'm grateful that my doctors are still treating with curative intent. The palliative path would be a tad more depressing.
Friday, 21 January 2011
I didn't get to see the doctor, so I'll have to wait until Feb 9 to get the results. In the meantime, I'd rather not know anyway. If it's good news, it'll be worth the wait, and if it's bad news, I'd rather have another couple of weeks of ignorant bliss.
Wednesday, 19 January 2011
Here's to some good news.
Wednesday, 12 January 2011
That said, I had a CT scan in early December and the report said that there was no sign of the tumour, so I'm happy with that. Next, my surgeon wants me to have a gastroscopy and biopsy to see if there are any active cancer cells left at the site of the original tumour. Fingers crossed that there aren't If there are, he'll want to make another attempt at the Ivor-Lewis Oesopho-gastrectomy. Of course, if I need it I'll have it, but I'd really rather not need it.
While I'm getting good news, I found out that my cousin, a few years younger than me has advanced bowel cancer. It's spread to her liver and she's started chemo. I hope she'll be OK.
Saturday, 9 October 2010
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:
Wednesday, 6 October 2010
Tuesday, 28 September 2010
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.
Friday, 24 September 2010
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.
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
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
Sunday, 1 August 2010
Tuesday, 13 July 2010
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
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.