Can you believe it, but I have just come home today after having to rush back in to hospital - not many hours after my last post.
Unfortunately, there was a bowel blockage and I ended up with a nasal-gastric tube, as well as very strong pain killers. Under the care of my surgeon, oncologist and palliative care doctor I have been able to get back on my feet.
The last week has been fairly serious, with bladder spasms and issues with my colon. Pain management has also been on top of the list and I have been blessed with some caring people and some amazing drugs.
The news is a little scary.
I have numerous tumours in the peritoneum. Some are really small, but there are a few 'walnut' size tumours embedded in the scar tissue.
The plan is for the next 4-6 weeks to rest, recover, build my strength. Then I will be undergoing major surgery. It involves opening up the abdomen and removing as much scar tissue and as many tumours as possible and then heating a chemotherapy liquid up to 40 degrees and bathing the internal abdomen in the fluid. This is risky as the liquid cannot go over 42 degrees or drop below 38 degrees to be effective. Hopefully, after this 6-8 hour surgery I will have conquered most of the cancer and can begin living the rest of my life.
It will be a long recovery period of 2 weeks in hospital and around 6 weeks at home.
But, as we have discovered over the past few weeks - I am running out of options with this cancer. There are many chemotherapy options and trials, but given my propensity for rejection of them and the side-effects that I struggle with, I am hoping that this one is the big gun with the best option.
Lots of praying ahead of us, but day by day is the best way to do it.
I just wanted to share my journey, as long as it may be.
My personal thoughts & dreams to inspire family & friends
Tuesday, June 17, 2014
Monday, June 9, 2014
A longer journey.
I have been in hospital since my last post. The pain battle has been ongoing - some definite progress has been made, which is wonderful. But ... the drugs are very strong, which means I cannot drive and am very groggy most of the time.
I was under the care of the most amazing people and blessed beyond belief in their care of me.
On Saturday 8th - I had a small laparoscopic surgery to see what is causing all the pain. It turned out that there are a few adhesions as expected, but unfortunately it also found more tumours in the upper peritoneum as well as the area identified by the scan - the lower peritoneum.
I was discharged from hospital, Sunday lunchtime and tomorrow will contact the surgeon for an appointment as soon as possible to discuss my situation. It is very scary as the cancer seems to be well spread. Emotionally I am at a low point, but will pick myself up and start all over again.
I was under the care of the most amazing people and blessed beyond belief in their care of me.
On Saturday 8th - I had a small laparoscopic surgery to see what is causing all the pain. It turned out that there are a few adhesions as expected, but unfortunately it also found more tumours in the upper peritoneum as well as the area identified by the scan - the lower peritoneum.
I was discharged from hospital, Sunday lunchtime and tomorrow will contact the surgeon for an appointment as soon as possible to discuss my situation. It is very scary as the cancer seems to be well spread. Emotionally I am at a low point, but will pick myself up and start all over again.
Tuesday, June 3, 2014
More Valleys than Hills
It has been a few days since I last wrote. Unfortunately this is because I am back in hospital. I have already been in for a week attempting to gain some control of my pain issues. Lots of drugs later, and it is certainly much easier.
Unfortunately, I reacted very badly to my first dose of chemo and with my own oncologist away I have been under the care of another doctor. Adam Stirling is just wonderful. He is such a good listener, so that is helping. The 'pain' doctor - Dr Maureen Mitchell is also special - she spent over 90 mins with me on her first assessment.
A brief summary is that my bowels are not working properly and the scans are not showing enough detail to explain the pain and the non-functioning bowel. I am sooooooooooo frustrated.
The surgeon Dr Brian Mead has been in twice - we are keen for him to do some laproscopic investigation, but having taken the Avastin a chemo drug, I can't have surgery, as the cells won't heal easily and it is difficult to stop the bleeding. He wants to wait six weeks, but I want it done now. So we will have to wait and see. More waiting.
Will write a bit more when I am not so groggy.
Unfortunately, I reacted very badly to my first dose of chemo and with my own oncologist away I have been under the care of another doctor. Adam Stirling is just wonderful. He is such a good listener, so that is helping. The 'pain' doctor - Dr Maureen Mitchell is also special - she spent over 90 mins with me on her first assessment.
A brief summary is that my bowels are not working properly and the scans are not showing enough detail to explain the pain and the non-functioning bowel. I am sooooooooooo frustrated.
The surgeon Dr Brian Mead has been in twice - we are keen for him to do some laproscopic investigation, but having taken the Avastin a chemo drug, I can't have surgery, as the cells won't heal easily and it is difficult to stop the bleeding. He wants to wait six weeks, but I want it done now. So we will have to wait and see. More waiting.
Will write a bit more when I am not so groggy.
Friday, May 23, 2014
Day Two
Yesterday I went and had my first IV treatment for this next cycle of chemotherapy. The treatment is in two parts - the first part is called Avastin - a biological protein destroyer - that targets the proteins on the cancer cells and the second part a traditional chemo drug - Xeloda.
It is daunting to face a box of 120 tablets, knowing I will be taking 6 tablets a day for at least the next 6 months. My head went into immediate rebellion - with I can't/won't/don't want to. Then I just popped the 3 tablets and swallowed them.
My oncologist has increased my pain medication 'again' and is hoping that at last I will finally get some form of relief. If this doesn't work - then I am headed for hospital to be treated by the palliative pain management team - who have great success with cancer pain. The tumours are in such an awkward place in the peritoneum and seem to be pressing on nerves and the colon.
I will be very relieved if we can get the pain under control, I can and have coped with almost everything else, but the pain is debilitating and exhausting.
Day Two of the next path of my journey.
It is daunting to face a box of 120 tablets, knowing I will be taking 6 tablets a day for at least the next 6 months. My head went into immediate rebellion - with I can't/won't/don't want to. Then I just popped the 3 tablets and swallowed them.
My oncologist has increased my pain medication 'again' and is hoping that at last I will finally get some form of relief. If this doesn't work - then I am headed for hospital to be treated by the palliative pain management team - who have great success with cancer pain. The tumours are in such an awkward place in the peritoneum and seem to be pressing on nerves and the colon.
I will be very relieved if we can get the pain under control, I can and have coped with almost everything else, but the pain is debilitating and exhausting.
Day Two of the next path of my journey.
Sunday, May 18, 2014
It isn't gone!
I wasn't 100% happy with the oncologist's interpretation of the PET/CT scan results on Thursday 8th. My pain levels and my own feelings told me that there was something more going on.
Mother's Day - Sunday 11th - Started with some beautiful gifts from my children and a family visit to church in the morning.
The day however, ended horribly. The pain I have been experiencing for the past 5-6 weeks hit a high and Ivan took me into hospital. A couple of doses of morphine later - I was admitted to the ward. Between Monday and Wednesday afternoon - I didn't eat a thing - the colonoscopy prep - made me so sick, but finally I had the colonoscopy on Wednesday afternoon.
The results - numerous small tumours on the outside of the lower bowel, constricting and narrowing the passage - the inside of the colon is clear - but it appears that the peritoneum has a mass of very small tumours a number of which are clearly cancerous.
Not a very good week. I stayed in hospital until Friday attempting to find a pain and food management schedule that will work and begin chemotherapy again this coming Thursday 22nd May, 2014.
As my oncologist explained: It is now a long term management plan. There is no end goal to the chemo regimen, but rather a plan to keep the cancer small and controllable.
My plan - live life day by day and keep up my JOY
Mother's Day - Sunday 11th - Started with some beautiful gifts from my children and a family visit to church in the morning.
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| Matthew bought me a beautiful bunch of fresh flowers |
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| Sarah gave me two great movies to watch |
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| And Elizabeth gave me a locket filled with charms. |
The results - numerous small tumours on the outside of the lower bowel, constricting and narrowing the passage - the inside of the colon is clear - but it appears that the peritoneum has a mass of very small tumours a number of which are clearly cancerous.
Not a very good week. I stayed in hospital until Friday attempting to find a pain and food management schedule that will work and begin chemotherapy again this coming Thursday 22nd May, 2014.
As my oncologist explained: It is now a long term management plan. There is no end goal to the chemo regimen, but rather a plan to keep the cancer small and controllable.
My plan - live life day by day and keep up my JOY
Friday, May 9, 2014
STILL CANCER FREE!
My PET/CT scan has come back clear. After a week of delays and issues with the radioactive dye - I finally had my scans yesterday and today had a meeting with my oncologist. It was such a relief to hear that there are no active tumours. My blood-test cancer markers have risen slightly since the end of my last treatment, but are still well within the 'normal' range.
As my cancer has metastasized - it will be an ongoing matter of monitoring for the rest of my life. So the next step is to have another blood test in 6 weeks. For now I don't have to have any more treatment - either chemotherapy or other options.
In 6 weeks we will have another discussion - wherein we may begin a regimen of biological/chemotherapy maintenance, which will ensure that any cellular cancer cannot develop into tumours.
It is a very strange feeling - relief, excitement and thanks to God - for the great news. But, also the feeling that I need to find a way to live, live not only scan to scan, blood test to blood test, but to live the rest of my life.
I am planning to seek some professional help with this issue, as I have felt 'sick' for the past two years and I don't plan to live the next 30 or so, with the issue - that I am a cancer victim.
But..... for tonight I am celebrating. NO CANCER!
As my cancer has metastasized - it will be an ongoing matter of monitoring for the rest of my life. So the next step is to have another blood test in 6 weeks. For now I don't have to have any more treatment - either chemotherapy or other options.
In 6 weeks we will have another discussion - wherein we may begin a regimen of biological/chemotherapy maintenance, which will ensure that any cellular cancer cannot develop into tumours.
It is a very strange feeling - relief, excitement and thanks to God - for the great news. But, also the feeling that I need to find a way to live, live not only scan to scan, blood test to blood test, but to live the rest of my life.
I am planning to seek some professional help with this issue, as I have felt 'sick' for the past two years and I don't plan to live the next 30 or so, with the issue - that I am a cancer victim.
But..... for tonight I am celebrating. NO CANCER!
Sunday, May 4, 2014
Day out at the Dam!
Our friend Chevy is visiting for a few days business with Ivan, but it has been lovely having him stay at our house for the weekend.
We took a drive up to Fernvale for lunch and then went on Wivenhoe Dam. The last time I was up there was in 2011 just before our major floods. It was great to see how well the area has recovered. We have had our first cold snap of winter this weekend - it was cool and breezy - but beautiful.
The girls had fun skimming stones with Chevy.
We took a drive up to Fernvale for lunch and then went on Wivenhoe Dam. The last time I was up there was in 2011 just before our major floods. It was great to see how well the area has recovered. We have had our first cold snap of winter this weekend - it was cool and breezy - but beautiful.
The girls had fun skimming stones with Chevy.
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