Of all the things we began to worry about in the first few days of Andy’s diagnosis, we didn’t realize that food was going to be one of them. At first, we had no desire to eat because of stress. Then, as Andy started treatment (or after surgery), we realized that what he could and wanted to eat would greatly change. We stopped eating most dinners at the table as a family. I would eat with the kids, and he would eat when he could.
We were very fortunate to have wonderful friends and family who helped by bringing meals, offering meal gift certificates and making sure we were well stocked with food. This was incredibly important and immensely helpful.
Eventually it became clear that there were certain foods that Andy preferred. The grocery list looked sort of like this:
• Ginger cookies
• Cottage cheese
• Tuna
• Crackers
• Eggs
• Toast
• Rice
• Oatmeal
• Macaroni and Cheese
• Baked potato
And oddly, the occasional fast food hamburger was a must.
It was repetitive but we learned to stick with what he liked and knew. If we tried something else, it often went to waste.
He noticed his taste buds changed, so some food he greatly enjoyed wasn’t the same anymore. And in some cases, while trying to control the nausea, he didn’t want to eat his favourite foods for fear he’d never disassociate treatment with the food.
He lost weight, but little by little and not drastically. He ate what he could, when he could, at all hours of the night and day.
When treatment was over, and he finally could taste his favourite foods again, it was like a new awakening for him. He was enjoying food and able to eat what he wanted.
And we all started sitting at the table for dinner again.
Friday, March 25, 2011
Wednesday, March 23, 2011
Parenting with Cancer
In the early days of my husband’s diagnosis, everything we did seemed on autopilot. It was hard to have our usually fun-filled days with the kids. We kept them busy but we weren’t really in touch with anything else that was happening.
Surgery happened within 5 days of diagnosis, and luckily we had family around to watch the kids while we were at the hospital.
It wasn’t until Andy came home from the hospital to recover that him being sick seemed to set in. He wasn’t able to play (or move easily for that matter) and certainly couldn’t go to the park to play baseball with our son like he once had.
As we dealt with his recovery, and then chemotherapy which led to us being away for many hours at a time, we realized we needed a plan. We had to make the process as easy as possible on us and the kids.
Here are some recommendations that we learned may make the process a little easier:
1. Talk to the kids and fill them in according to their age. Be honest, but select your words wisely
Our children weren’t quite 2 and 4 so we stuck with general ‘daddy’s sick’ or ‘daddy has an ouchie on him that we have to be careful with’. We actually didn’t tell them about ‘cancer’ until he had to start chemotherapy.
When he started chemo, we were once again honest with them (mostly my son, as my daughter was too young to understand) about physical changes they would notice. Fatigue, loss of hair etc.
2. Line up a team of child care helpers and plan the schedule
We pretty well knew ahead of time who we could call during the day for appointments, last minute emergencies in the middle of the night (in case a fever spiked or reaction to medicine) and also lined up people who could care for them during our big weeks in treatment.
These are also the people that you want to encourage your children to talk to (in addition to you) if they have any concerns or worries while you are away.
3. Don’t change routine or habits any more than need be
Now is not the time to change sleeping times, eating habits or start potty training. Keep them on a routine as much as possible and let them have some flexibility – you’ll need it too.
4. Have an emergency bag ready to go
Ours had a change of clothes for each child, diapers and wipes, a few favourite books and toys. This was ready in case we had to change child care plans suddenly or had to drop them off somewhere that was unplanned.
5. Cut yourself some slack
There is nothing normal about what is happening to your family. The kids will become emotional at times (ours did) and ask a lot of questions (ours did) and that’s perfectly normal. You will be overtired and long for routine yourself. It will feel like you are failing them somehow because you aren’t playing as much etc. It’s ok.
When possible, spend as much time as a family together as you can, playing board games or reading stories. It will seem harder on the kids than it really is. Mine rarely talk about the hospital or when daddy was sick anymore.
Surgery happened within 5 days of diagnosis, and luckily we had family around to watch the kids while we were at the hospital.
It wasn’t until Andy came home from the hospital to recover that him being sick seemed to set in. He wasn’t able to play (or move easily for that matter) and certainly couldn’t go to the park to play baseball with our son like he once had.
As we dealt with his recovery, and then chemotherapy which led to us being away for many hours at a time, we realized we needed a plan. We had to make the process as easy as possible on us and the kids.
Here are some recommendations that we learned may make the process a little easier:
1. Talk to the kids and fill them in according to their age. Be honest, but select your words wisely
Our children weren’t quite 2 and 4 so we stuck with general ‘daddy’s sick’ or ‘daddy has an ouchie on him that we have to be careful with’. We actually didn’t tell them about ‘cancer’ until he had to start chemotherapy.
When he started chemo, we were once again honest with them (mostly my son, as my daughter was too young to understand) about physical changes they would notice. Fatigue, loss of hair etc.
2. Line up a team of child care helpers and plan the schedule
We pretty well knew ahead of time who we could call during the day for appointments, last minute emergencies in the middle of the night (in case a fever spiked or reaction to medicine) and also lined up people who could care for them during our big weeks in treatment.
These are also the people that you want to encourage your children to talk to (in addition to you) if they have any concerns or worries while you are away.
3. Don’t change routine or habits any more than need be
Now is not the time to change sleeping times, eating habits or start potty training. Keep them on a routine as much as possible and let them have some flexibility – you’ll need it too.
4. Have an emergency bag ready to go
Ours had a change of clothes for each child, diapers and wipes, a few favourite books and toys. This was ready in case we had to change child care plans suddenly or had to drop them off somewhere that was unplanned.
5. Cut yourself some slack
There is nothing normal about what is happening to your family. The kids will become emotional at times (ours did) and ask a lot of questions (ours did) and that’s perfectly normal. You will be overtired and long for routine yourself. It will feel like you are failing them somehow because you aren’t playing as much etc. It’s ok.
When possible, spend as much time as a family together as you can, playing board games or reading stories. It will seem harder on the kids than it really is. Mine rarely talk about the hospital or when daddy was sick anymore.
Monday, March 21, 2011
Our journey begins like any other couple with young children.
We were all in, what we thought, was good health. We never missed our annual doctor’s appointments; we were conscious of what we ate; we were even using natural soap; and were happy. We lived as stress free as possible and did I mention we were happy?
My husband worked full time and I was a stay at home mom. The kids were not quite 4 and not quite 2.
It was a Monday that changed everything.
My husband was diagnosed with testicular cancer.
A month earlier, Andy had some mild pain and discomfort in his lower abdomen and testicle. At first, it seemed to go away, so we thought it may have been a strain. But when it returned, he immediately saw our family doctor. He was sent for an ultrasound and within days received a diagnosis of suspected testicular cancer.
Even in the few days when he was waiting for ultrasound results, we never once wondered if there was a chance this could be serious. We never wondered if this could be cancer. Not once.
So when he came home after his appointment that Monday and told me he had cancer, I was in complete shock. A spiralling few days followed. I was worried. Sad. Convinced I would lose him. However, we turned to information as a source of calm and quickly learned testicular cancer, when caught early, has very high survival rates. We didn’t know what was ahead, but we had hope.
Surgery was followed by Chemotherapy (topics for future blogs) and now, he is on a monthly surveillance program that includes blood work and x-rays.
It seems very likely that he has beaten this cancer!
It’s been 6 months of worry, wait, stress and support. We were surrounded by friends and family who helped provide food, comfort, and care for our children while we were at appointments and treatment. We also received incredible care and support from the health care system. Our family doctor, surgeon, oncologist, and the nurses and staff at the Ottawa General Hospital and Cancer Centre have helped make this journey very positive and much more doable. We realize, more than ever, how blessed we are to have amazing people in our lives. How blessed we are to have two beautiful children and each other.
This blog will share our experience in hopes of helping others through what is no doubt one of the most difficult times anyone can face. Anything I can do to help the Ottawa Regional Cancer Foundation, its patients and survivors is an honour and pleasure.
Thanks for reading along.
My husband worked full time and I was a stay at home mom. The kids were not quite 4 and not quite 2.
It was a Monday that changed everything.
My husband was diagnosed with testicular cancer.
A month earlier, Andy had some mild pain and discomfort in his lower abdomen and testicle. At first, it seemed to go away, so we thought it may have been a strain. But when it returned, he immediately saw our family doctor. He was sent for an ultrasound and within days received a diagnosis of suspected testicular cancer.
Even in the few days when he was waiting for ultrasound results, we never once wondered if there was a chance this could be serious. We never wondered if this could be cancer. Not once.
So when he came home after his appointment that Monday and told me he had cancer, I was in complete shock. A spiralling few days followed. I was worried. Sad. Convinced I would lose him. However, we turned to information as a source of calm and quickly learned testicular cancer, when caught early, has very high survival rates. We didn’t know what was ahead, but we had hope.
Surgery was followed by Chemotherapy (topics for future blogs) and now, he is on a monthly surveillance program that includes blood work and x-rays.
It seems very likely that he has beaten this cancer!
It’s been 6 months of worry, wait, stress and support. We were surrounded by friends and family who helped provide food, comfort, and care for our children while we were at appointments and treatment. We also received incredible care and support from the health care system. Our family doctor, surgeon, oncologist, and the nurses and staff at the Ottawa General Hospital and Cancer Centre have helped make this journey very positive and much more doable. We realize, more than ever, how blessed we are to have amazing people in our lives. How blessed we are to have two beautiful children and each other.
This blog will share our experience in hopes of helping others through what is no doubt one of the most difficult times anyone can face. Anything I can do to help the Ottawa Regional Cancer Foundation, its patients and survivors is an honour and pleasure.
Thanks for reading along.
Friday, March 18, 2011
Hopes for the Future
This is very simple. I hope to go into remission and be able to return to work and go on with life and put this behind me. I understand that I have stage 4 cancer and will most likely be on some form of chemo therapy for the rest of my life. What I hope for is a treatment that allows me to work and live on my own and just let’s me get on with life. If that is not possible, I would like to get to a point where surgery is possible. At the moment the spots on my liver are not localized so that makes surgery impossible. But if we can get rid of some of the spots completely where there are only some on one side then a surgeon can go in and cut that part out. The cool thing about your liver is it can grow back. I have been told that they can take 80% of your liver and within 6 weeks it will mostly have grown back!
For now I just keep doing as my doctor tells me and go to treatment every two weeks. Living 2 months at a time in hopes for good results in which I can still go on with treatment and live as regular a life as possible. I am not prepared to ever give up and I believe the mentality you have about living with cancer can help sustain you. The more optimistic you are the more it feels like going through all this treatment will be worth it in the end.
For now I just keep doing as my doctor tells me and go to treatment every two weeks. Living 2 months at a time in hopes for good results in which I can still go on with treatment and live as regular a life as possible. I am not prepared to ever give up and I believe the mentality you have about living with cancer can help sustain you. The more optimistic you are the more it feels like going through all this treatment will be worth it in the end.
Thursday, March 17, 2011
How Cancer has affected my life and the life of my family
Since I was diagnosed the biggest change has been the loss of my independence. Once I started my chemo treatment I was not sure whether I could handle it while living on my own so I moved back home. Being almost 30 and living at home was definitely not what I had ever envisioned for my life. It isn’t all bad because I have no rent; groceries and cable are paid for so those are bonuses. But if I had my choice I would still be out on my own. Since I have been in treatment for over a year now I know I can handle my treatments and do everything I need to do to survive so I am planning on moving out again in the fall, which I can’t wait for. I think that will make me feel like a more normal 30 year old woman.
The second biggest change is that I have not worked since November 2009. I am now on disability. Which I guess is an extension of losing my independence. This is another thing in my life I never thought I would have to do. Relying on an insurance company for my living is not exactly what I want. I always enjoyed working and miss it a lot. I hope one day I can return. If only to make me feel like a normal 30 year old. Someone my age should not be on disability. I should be out there contributing my part to society. But instead I spend most my days at home waiting for my friends to get off work for something to do.
One positive thing that came out of my diagnosis is that my family has definitely become closer. Before diagnosis we mostly went on with our own lives and did not do much together. Now for the first time ever we are taking a family trip to Cape Cod this summer. I am really looking forward to it. I also feel that I and my sister have become a lot closer. Before we never had much in common but now have found some common ground and definitely fight a lot less.
One thing they don’t tell you once you are diagnosed is how boring being sick is. Your life changes drastically but in the end it stops you in your tracks and you have to go through the motions of all the doctor appointments and the treatments waiting to get your normal life back. Don’t get my wrong it is worth going through everything and keeping optimistic even in the face of not the best odds but once you are diagnosed you can’t help wanting to feel normal again
The second biggest change is that I have not worked since November 2009. I am now on disability. Which I guess is an extension of losing my independence. This is another thing in my life I never thought I would have to do. Relying on an insurance company for my living is not exactly what I want. I always enjoyed working and miss it a lot. I hope one day I can return. If only to make me feel like a normal 30 year old. Someone my age should not be on disability. I should be out there contributing my part to society. But instead I spend most my days at home waiting for my friends to get off work for something to do.
One positive thing that came out of my diagnosis is that my family has definitely become closer. Before diagnosis we mostly went on with our own lives and did not do much together. Now for the first time ever we are taking a family trip to Cape Cod this summer. I am really looking forward to it. I also feel that I and my sister have become a lot closer. Before we never had much in common but now have found some common ground and definitely fight a lot less.
One thing they don’t tell you once you are diagnosed is how boring being sick is. Your life changes drastically but in the end it stops you in your tracks and you have to go through the motions of all the doctor appointments and the treatments waiting to get your normal life back. Don’t get my wrong it is worth going through everything and keeping optimistic even in the face of not the best odds but once you are diagnosed you can’t help wanting to feel normal again
Wednesday, March 16, 2011
Warning Signs of my colon cancer
Starting at the age of 17 I had this weird gastro problem every few years. I would not be able to keep anything down for over a week every time it happened. I would lose 10lbs in a week. I would go to the doctor and they would tell me it was just a gastro virus and to eat very plain and eventually it would go away. And it always did. This happened every few years until I got really sick in the summer of 2009. It was very strange because I was never one to ever get the flu let alone a cold. But I would always get this gastro problem.
Sometimes it would be diagnosed as severe heart burn and I would be downing pepto like it was water. But it never helped. It was strange because I never really noticed any changes in the bathroom. Once I was diagnosed I was told that it was a level one cancer. Which is kind of like lazy cancer, it moves very slowly. Due to that I believe it was growing so slowly that any changes that may have happened occurred so slowly that I didn’t really notice.
I am not sure that I had colon cancer at the age of seventeen but I do know it was always the same thing. I would have severe stomach pain and vomit constantly for a week. Most of the time it was just bile because I hadn’t eaten anything at all, all week.
Looking back I can see why doctor’s would never guess it was colon cancer. But I wish I could have been more intuitive and have realized I was sick long ago so I wouldn’t be at the stage I am at where it has spread to my liver. But hindsight is 20/20 and all I can do is go forward from here and fight like hell to keep my quality of life at a point I am happy with.
Sometimes it would be diagnosed as severe heart burn and I would be downing pepto like it was water. But it never helped. It was strange because I never really noticed any changes in the bathroom. Once I was diagnosed I was told that it was a level one cancer. Which is kind of like lazy cancer, it moves very slowly. Due to that I believe it was growing so slowly that any changes that may have happened occurred so slowly that I didn’t really notice.
I am not sure that I had colon cancer at the age of seventeen but I do know it was always the same thing. I would have severe stomach pain and vomit constantly for a week. Most of the time it was just bile because I hadn’t eaten anything at all, all week.
Looking back I can see why doctor’s would never guess it was colon cancer. But I wish I could have been more intuitive and have realized I was sick long ago so I wouldn’t be at the stage I am at where it has spread to my liver. But hindsight is 20/20 and all I can do is go forward from here and fight like hell to keep my quality of life at a point I am happy with.
Tuesday, March 15, 2011
My Journey to Diagnosis
It was a long, painful journey to diagnosis for me. It started in July of 2009. I got really sick and could not keep anything down and lost about 10lbs in a week. I went to the ER and they told me I had a gastro virus and to eat toast and drink lots of water and eventually I would get better. I did begin to feel better and went back to normal life until mid August when I got a severe pain on my left side and started vomiting again. I went back to the ER and they did a CT scan. They told me I had diverticulitis and to take some antibiotics, don’t eat for three days and come back on the fourth if I am still in severe pain. Needless to say it was the longest weekend of my life. I felt miserable and I was starving. But as soon as I ate on Monday I felt a severe pain and threw it right back up. We went right back to the ER where a doctor decided to keep me there because she felt there was more going on.
I was admitted to the hospital that day and had to wait a day to get another CT scan. Once that scan was done my doctor told me I had a hole in my colon and a 5cm in diameter abscess had grown out of it. They still believed the hole was created by diverticulitis. They kept me in the hospital for two weeks on IV antibiotics which were given to me twice daily. Being in the hospital for that long in the middle the summer was a bummer. But I did have a lot of company every visiting hour that passed. I felt like a fish out of water though because I was surrounded by elderly people having hip replacements and such and I was like “what am I doing here?”
So I was finally released and went back to work a couple weeks later. I still felt sick and had a hard time eating but I was told nothing was wrong with me and it was normal not to have much of an appetite. But then the pain returned and the vomiting started again. I was calling every doctor I knew to tell them I still feel sick and was losing weight by the day. They told me that was normal so I went to work everyday and just got used to vomiting at work and then getting on with the day. Finally the day came that I could have a colonoscopy. I had to wait until November because they wanted to make sure the hole had healed.
I was five minutes into the procedure and it stopped I was wheeled out of the room and my mother was told to come in and wait with me. I was under light sedation so I didn’t have any feelings about what was to come. The doctor called us in and sat us down and showed me a picture of a large tumour he ran right into 5 minutes in. This is what broke through my colon and had caused so much pain and trouble with my digestion. He looked like he saw a ghost. It would have been comical if it wasn’t so serious. He was pretty sure at the time it was cancerous but had to do a biopsy to be sure. At the time I had spots on my liver that they contributed to the infection and didn’t think much of them. But now they were suspect and expected it to be cancer which had spread. I did not cry right away. I was almost relieved to finally find out what was causing me such pain and grief. At that time I had probably lost 40lbs and was wasting away so I figured at least now the right doctors will be assigned to me and we could get down to the business of kicking the cancer in the ass.
My cancer was confirmed a few days letter. I had surgery 3 weeks later where they took two feet of my colon while also looking at my liver to confirm that it was cancer that had spread. And that was confirmed that yes it had. It took 4 months and 50lbs before everything was made clear. I was now a cancer survivor and that title will be with me for the rest of my life.
I was admitted to the hospital that day and had to wait a day to get another CT scan. Once that scan was done my doctor told me I had a hole in my colon and a 5cm in diameter abscess had grown out of it. They still believed the hole was created by diverticulitis. They kept me in the hospital for two weeks on IV antibiotics which were given to me twice daily. Being in the hospital for that long in the middle the summer was a bummer. But I did have a lot of company every visiting hour that passed. I felt like a fish out of water though because I was surrounded by elderly people having hip replacements and such and I was like “what am I doing here?”
So I was finally released and went back to work a couple weeks later. I still felt sick and had a hard time eating but I was told nothing was wrong with me and it was normal not to have much of an appetite. But then the pain returned and the vomiting started again. I was calling every doctor I knew to tell them I still feel sick and was losing weight by the day. They told me that was normal so I went to work everyday and just got used to vomiting at work and then getting on with the day. Finally the day came that I could have a colonoscopy. I had to wait until November because they wanted to make sure the hole had healed.
I was five minutes into the procedure and it stopped I was wheeled out of the room and my mother was told to come in and wait with me. I was under light sedation so I didn’t have any feelings about what was to come. The doctor called us in and sat us down and showed me a picture of a large tumour he ran right into 5 minutes in. This is what broke through my colon and had caused so much pain and trouble with my digestion. He looked like he saw a ghost. It would have been comical if it wasn’t so serious. He was pretty sure at the time it was cancerous but had to do a biopsy to be sure. At the time I had spots on my liver that they contributed to the infection and didn’t think much of them. But now they were suspect and expected it to be cancer which had spread. I did not cry right away. I was almost relieved to finally find out what was causing me such pain and grief. At that time I had probably lost 40lbs and was wasting away so I figured at least now the right doctors will be assigned to me and we could get down to the business of kicking the cancer in the ass.
My cancer was confirmed a few days letter. I had surgery 3 weeks later where they took two feet of my colon while also looking at my liver to confirm that it was cancer that had spread. And that was confirmed that yes it had. It took 4 months and 50lbs before everything was made clear. I was now a cancer survivor and that title will be with me for the rest of my life.
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