My Cancer Diary
Discussion
Note to mods: I am a 10-year plus member on PH but I have set up a new username for this thread only, to preserve anonymity and to avoid association with any smart Alec posts I may have made over the years. Please forgive this transgression.
A little about me:
Age: 59
Ex smoker
Very low alcohol intake
Vegetarian 1994-2004, Veg plus fish & seafood since 2004
5'11", 72kg, reasonably active
Married for 31 years, together for 40 years, no kids
Residence : UK & Spain
No prior health problems
I was diagnosed with cancer in May of this year. At that time I started a written diary which I recently decided to reproduce here in the hope that it may be of interest to one or two of you.
A little about me:
Age: 59
Ex smoker
Very low alcohol intake
Vegetarian 1994-2004, Veg plus fish & seafood since 2004
5'11", 72kg, reasonably active
Married for 31 years, together for 40 years, no kids
Residence : UK & Spain
No prior health problems
I was diagnosed with cancer in May of this year. At that time I started a written diary which I recently decided to reproduce here in the hope that it may be of interest to one or two of you.
Early April 2018
I started feeling a bit rough (lack of energy, tiredness, poor appetite and lower back pain) but initially put it down to the after-effects of a nasty bout of flu, which I had shaken off a week or so before.
Mrs LS was in North America at the time visiting her elderly mother and other family members.
I started feeling a bit rough (lack of energy, tiredness, poor appetite and lower back pain) but initially put it down to the after-effects of a nasty bout of flu, which I had shaken off a week or so before.
Mrs LS was in North America at the time visiting her elderly mother and other family members.
25/04/2018
After a couple of weeks the symptoms had not changed significantly so I thought it would be a good idea to see my GP. At the time I was in Spain where GPs work on a rota system so you are not guaranteed to see the same doctor on each visit.
At the initial consultation I described my symptoms in as much detail as possible, had a brief physical exam including temperature and blood pressure, concluding with blood & urine samples being taken and instruction to return in a week.
After a couple of weeks the symptoms had not changed significantly so I thought it would be a good idea to see my GP. At the time I was in Spain where GPs work on a rota system so you are not guaranteed to see the same doctor on each visit.
At the initial consultation I described my symptoms in as much detail as possible, had a brief physical exam including temperature and blood pressure, concluding with blood & urine samples being taken and instruction to return in a week.
01/05/2018
The follow-up consultation involved going over my results from the lab. The blood tests revealed that I was severely anaemic and 2 or 3 markers for liver function were out of normal range. This prompted the doctor to ask some penetrating questions about my alcohol consumption. She looked at me somewhat askance when I told her I had been almost teetotal for the past 30 years but I think I managed to convince her that I was being truthful.
She sent me for a lumbar X-Ray (which did not reveal any abnormalities) and referred me for an ultrasound scan.
The follow-up consultation involved going over my results from the lab. The blood tests revealed that I was severely anaemic and 2 or 3 markers for liver function were out of normal range. This prompted the doctor to ask some penetrating questions about my alcohol consumption. She looked at me somewhat askance when I told her I had been almost teetotal for the past 30 years but I think I managed to convince her that I was being truthful.
She sent me for a lumbar X-Ray (which did not reveal any abnormalities) and referred me for an ultrasound scan.
29/05/2018
My original appointment for ultrasound ended up being delayed for 2 weeks, so it was the end of May by the time I was seen. The scan was very thorough, incorporating the stomach & lumbar regions, and I was on the table for a good 40 minutes, after which the specialist asked me to wait while he wrote his report to be taken back to the GP the same day.
While waiting for the GP I read the report, which comprised 24 muddy looking images and a written conclusion. There it was in black and white - a 2cm lesion at the head of the pancreas, indications of metastasis in the liver and some abnormality visible in the colon. I felt numb and could barely get up from my chair when called in to the GP's office. He flicked through the report and read the conclusion; all I could say was "It's very serious, isn't it?" He nodded and referred me for a CAT scan to confirm the ultrasound diagnosis. I thanked him, left the clinic and returned to my car.
My mind was spinning, my mouth was as dry as a bone and I knew that I was in no fit state to drive, so I found a cafe, ordered a coffee and a sandwich and sat unsuccessfully trying to read a newspaper. My thoughts turned to a chap I knew a little who died in 2016, 12 days after being diagnosed with pancreatic cancer. Would I survive until Mrs LS's birthday in mid-July? How would I break the news to her? Would I be able to get my financial affairs in order within a few weeks? These and dozens of other wild thoughts raced through my head.
After about an hour I managed to pull myself together and went for a walk to try and clear my head. 40 minutes later I felt calm enough to drive and set off on the 30 minute journey home, during which I rehearsed what I would say to Mrs LS.
We sat together on the sofa with mugs of tea and slices of fruit cake and she asked me how things had gone. My carefully rehearsed spiel was instantly forgotten; all I could manage was "I'm so sorry, I have cancer and it's bad". As her face fell for an instant I burst into tears for destroying in a few seconds our plans for a long & joyful retirement together. Before I had finished reassuring her that she would be OK financially she told me that money wasn't an issue since we were going to get through this. That has been the one and only time so far that tears have been shed.
The rest of the afternoon and evening passed quickly as we discussed things that needed to get done in the immediate future. By supper time we were upbeat & positive. Cancer? Pah! Even so, 29th May 2018 had been one hell of a day.
My original appointment for ultrasound ended up being delayed for 2 weeks, so it was the end of May by the time I was seen. The scan was very thorough, incorporating the stomach & lumbar regions, and I was on the table for a good 40 minutes, after which the specialist asked me to wait while he wrote his report to be taken back to the GP the same day.
While waiting for the GP I read the report, which comprised 24 muddy looking images and a written conclusion. There it was in black and white - a 2cm lesion at the head of the pancreas, indications of metastasis in the liver and some abnormality visible in the colon. I felt numb and could barely get up from my chair when called in to the GP's office. He flicked through the report and read the conclusion; all I could say was "It's very serious, isn't it?" He nodded and referred me for a CAT scan to confirm the ultrasound diagnosis. I thanked him, left the clinic and returned to my car.
My mind was spinning, my mouth was as dry as a bone and I knew that I was in no fit state to drive, so I found a cafe, ordered a coffee and a sandwich and sat unsuccessfully trying to read a newspaper. My thoughts turned to a chap I knew a little who died in 2016, 12 days after being diagnosed with pancreatic cancer. Would I survive until Mrs LS's birthday in mid-July? How would I break the news to her? Would I be able to get my financial affairs in order within a few weeks? These and dozens of other wild thoughts raced through my head.
After about an hour I managed to pull myself together and went for a walk to try and clear my head. 40 minutes later I felt calm enough to drive and set off on the 30 minute journey home, during which I rehearsed what I would say to Mrs LS.
We sat together on the sofa with mugs of tea and slices of fruit cake and she asked me how things had gone. My carefully rehearsed spiel was instantly forgotten; all I could manage was "I'm so sorry, I have cancer and it's bad". As her face fell for an instant I burst into tears for destroying in a few seconds our plans for a long & joyful retirement together. Before I had finished reassuring her that she would be OK financially she told me that money wasn't an issue since we were going to get through this. That has been the one and only time so far that tears have been shed.
The rest of the afternoon and evening passed quickly as we discussed things that needed to get done in the immediate future. By supper time we were upbeat & positive. Cancer? Pah! Even so, 29th May 2018 had been one hell of a day.
01/06/2018
Another trip to a sister clinic for my CAT scan, which agreed with the ultrasound and confirmed the presence of a lesion in my colon. I was disappointed, hoping that the ultrasound specialist had made a mistake, but not surprised. So, suspected stage 4 colon cancer, pancreatic cancer & liver cancer were what I was dealing with. Realistically I told myself that I was looking at weeks or a few months at best. Despite this I remember feeling utterly calm, in contrast to my reaction 3 days earlier.
Another trip to a sister clinic for my CAT scan, which agreed with the ultrasound and confirmed the presence of a lesion in my colon. I was disappointed, hoping that the ultrasound specialist had made a mistake, but not surprised. So, suspected stage 4 colon cancer, pancreatic cancer & liver cancer were what I was dealing with. Realistically I told myself that I was looking at weeks or a few months at best. Despite this I remember feeling utterly calm, in contrast to my reaction 3 days earlier.
04/06/2018
I went back to see the GP, who read the CAT scan report and told me that I needed to consult an oncologist since this healthcare provider did not offer cancer treatment among its services.
On my return home I called my health insurance company for a list of approved cancer specialist centres in my area and made an appointment.
I went back to see the GP, who read the CAT scan report and told me that I needed to consult an oncologist since this healthcare provider did not offer cancer treatment among its services.
On my return home I called my health insurance company for a list of approved cancer specialist centres in my area and made an appointment.
05/06/2018
A 40 minute drive from home took us to a medium-sized hospital with the oncology department on the 2nd floor. I handed the ultrasound and CAT scan results to my new friend the oncologist and we discussed the short history of my case. He referred me to the internal medicine department for an endoscopy and colonoscopy to grab samples for biopsy.
A 40 minute drive from home took us to a medium-sized hospital with the oncology department on the 2nd floor. I handed the ultrasound and CAT scan results to my new friend the oncologist and we discussed the short history of my case. He referred me to the internal medicine department for an endoscopy and colonoscopy to grab samples for biopsy.
06/06/2018
No food permitted, only water and fruit juice without pulp.
In the evening I was required to flush my digestive tract with something called Moviprep. 2 sachets of powder are mixed with 1 litre of water then drunk over a period of one hour. The process is repeated 4 hours later. It tastes salty with a hint of orange and, trust me on this, you do not want to be more than 10 seconds away from a khazi 15 minutes after the first sip. By the time I was midway through the second litre I was passing what looked like clean water.
No food permitted, only water and fruit juice without pulp.
In the evening I was required to flush my digestive tract with something called Moviprep. 2 sachets of powder are mixed with 1 litre of water then drunk over a period of one hour. The process is repeated 4 hours later. It tastes salty with a hint of orange and, trust me on this, you do not want to be more than 10 seconds away from a khazi 15 minutes after the first sip. By the time I was midway through the second litre I was passing what looked like clean water.
07/06/2018
Back to the hospital for a combined endoscopy & colonoscopy, done under a general anaesthetic. When I wake up the internal medicine guy is standing nearby. His first words to me were "You do not have pancreatic cancer", which I take to be very good news; this was the one factor that scared me the most since 1-year survival rates tend to be very low. My temperature was a little high so I had to stay in hospital overnight for observation. I was given a light supper which was welcome as I was bloody starving.
Back to the hospital for a combined endoscopy & colonoscopy, done under a general anaesthetic. When I wake up the internal medicine guy is standing nearby. His first words to me were "You do not have pancreatic cancer", which I take to be very good news; this was the one factor that scared me the most since 1-year survival rates tend to be very low. My temperature was a little high so I had to stay in hospital overnight for observation. I was given a light supper which was welcome as I was bloody starving.
14/06/2018
The hospital calls with the news that the colon biopsy did not yield sufficent tumour cells to perform an analysis and that they had scheduled another colonoscopy for the following evening. No food allowed after 6pm, so that will be more than 3 days over an 8 day period that I have not been allowed to eat anything.
The hospital calls with the news that the colon biopsy did not yield sufficent tumour cells to perform an analysis and that they had scheduled another colonoscopy for the following evening. No food allowed after 6pm, so that will be more than 3 days over an 8 day period that I have not been allowed to eat anything.
Edited by Longsocks on Thursday 1st November 11:34
18/06/2018
The hospital calls again, instructing me to come back the following day to have a catheter fitted under the skin of my chest. They want to start chemotherapy as soon as possible and the catheter will make the whole process easier since they will not need to keep poking fresh holes in me to take blood or put me on a drip.
The hospital calls again, instructing me to come back the following day to have a catheter fitted under the skin of my chest. They want to start chemotherapy as soon as possible and the catheter will make the whole process easier since they will not need to keep poking fresh holes in me to take blood or put me on a drip.
19/06/2018
Fitting the catheter takes no more than 20 minutes under local anaesthetic and leaves me with 2 stitches above my right nipple and 1 near my neck. Afterwards we have a brief meeting with the oncologist who has set up my chemo schedule. Every other Monday I will go to the hospital in the afternoon to have blood samples taken, discuss the results with the oncologist then go to the chemo room to be drip fed with the various cancer meds they have chosen. After 6 sessions they will do another CAT scan and review my situation.
Fitting the catheter takes no more than 20 minutes under local anaesthetic and leaves me with 2 stitches above my right nipple and 1 near my neck. Afterwards we have a brief meeting with the oncologist who has set up my chemo schedule. Every other Monday I will go to the hospital in the afternoon to have blood samples taken, discuss the results with the oncologist then go to the chemo room to be drip fed with the various cancer meds they have chosen. After 6 sessions they will do another CAT scan and review my situation.
25/06/2018
My first chemo day, and we are still learning our way around the hospital. After checking in and doing the necessary paperwork we start off in the chemo room where the nurse takes 3 vials of blood for analysis and removes my stitches. A quick drink in the hospital cafe then back upstairs to see the oncologist, by which time he has received the blood analysis. It continues to amaze me how quickly they do this, since the lab must be processing thousands of samples every day. After a general discussion he gives me a prescription for anti-nausea pills in case I have a post-chemo reaction. Following the biopsies they have determined that my cancer originated in the colon then metastasised to the liver and to a lymph node (the latter was what they originally took to be in my pancreas). Then it's back to the chemo room to get hooked up to the drip.
Initially I am given 2 solutions and this takes about 3 hours. Afterwards they hook up a slow-release bottle containing another solution and send me home. The bottle takes 48 hours to empty so I have to return on Wednesday evening to have it removed and get the catheter flushed through with saline.
Each visit to the hospital is an 80km round trip, so we are putting a few miles in.
I have no idea what lymph nodes are so I do a bit of googling. It appears that the lymphatic system is quite efficient at distributing tumour seeds around the body but I decide that there is not much point worrying about it for now.
My first chemo day, and we are still learning our way around the hospital. After checking in and doing the necessary paperwork we start off in the chemo room where the nurse takes 3 vials of blood for analysis and removes my stitches. A quick drink in the hospital cafe then back upstairs to see the oncologist, by which time he has received the blood analysis. It continues to amaze me how quickly they do this, since the lab must be processing thousands of samples every day. After a general discussion he gives me a prescription for anti-nausea pills in case I have a post-chemo reaction. Following the biopsies they have determined that my cancer originated in the colon then metastasised to the liver and to a lymph node (the latter was what they originally took to be in my pancreas). Then it's back to the chemo room to get hooked up to the drip.
Initially I am given 2 solutions and this takes about 3 hours. Afterwards they hook up a slow-release bottle containing another solution and send me home. The bottle takes 48 hours to empty so I have to return on Wednesday evening to have it removed and get the catheter flushed through with saline.
Each visit to the hospital is an 80km round trip, so we are putting a few miles in.
I have no idea what lymph nodes are so I do a bit of googling. It appears that the lymphatic system is quite efficient at distributing tumour seeds around the body but I decide that there is not much point worrying about it for now.
09/07/2018
23/07/2018
06/08/2018
A repeat of the regular routine every other Monday - check-in, blood sample, consultation with oncologist, chemotherapy session then home. Starting with the session on 23rd July they added another solution to the mix so I have to spend more like 5 hours in the chair. I also discuss pain relief with the oncologist. Until now I have been managing my back pain with metamizol & ibuprofen but I need something more effective. I am prescribed fentanyl patches with a dose of 25µg/hr. I am now an opioid user!
A pattern has emerged with regard to side effects: While I am on chemo (Monday to Wednesday) I actually feel pretty good. On Thursday and Friday I get very tired and sleep a lot during the day. From Saturday until Monday or Tuesday I get soreness in my mouth which makes it hard to eat, although this seems to have diminished with each session. I have also lost quite a bit of hair, which is not unusual and doesn't bother me.
23/07/2018
06/08/2018
A repeat of the regular routine every other Monday - check-in, blood sample, consultation with oncologist, chemotherapy session then home. Starting with the session on 23rd July they added another solution to the mix so I have to spend more like 5 hours in the chair. I also discuss pain relief with the oncologist. Until now I have been managing my back pain with metamizol & ibuprofen but I need something more effective. I am prescribed fentanyl patches with a dose of 25µg/hr. I am now an opioid user!
A pattern has emerged with regard to side effects: While I am on chemo (Monday to Wednesday) I actually feel pretty good. On Thursday and Friday I get very tired and sleep a lot during the day. From Saturday until Monday or Tuesday I get soreness in my mouth which makes it hard to eat, although this seems to have diminished with each session. I have also lost quite a bit of hair, which is not unusual and doesn't bother me.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff