In retrospect
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I honestly can say I don’t have any real regrets or guilt concerning Tom’s care. I feel that I did every thing I possibly could often under very trying and exhausting circumstances. I do wish we had been a little more proactive re: his rising tumor markers. Because they couldn’t see anything on the scans we just didn’t want to worry too much, so the Drs. kind of followed our lead. I suppose he should have started chemo a year ago and that might have given him more time without too many complications. He was never too eager to try chemo though so I’m not sure he would have agreed to it. He was glad to be at home at the end. I know he appreciated all that I and the kids did for him in order to keep him comfortable. He was pretty confused the last week so I’m not sure what he was really aware of. I know he wasn’t in pain so that was wonderful. One other thing I may have done differently would be to call hospice earlier. He really wasn’t ready to have them take over and I wasn’t really educated about their services. If I had known they would order meds that would have helped with his hiccups and gasping I would have had them there a week earlier. His quality of life was so much better once they took over. Mary
One of the craziest but also absolutely best things we did was to buy a summer house in need of much repair and refurbishing! Our families warned us against it, but our psychologist saw its potential and gave us much support. Kris always insisted in planning for life rather than for death, even after she had to face that she had relatively little time left. I’m not suggesting everyone should invest I real estate, but the summer house was a joint project that had nothing to do with cancer, and everything to do with having fun together and being a family! Working together there was truly therapeutic. It was a positive focus for her incredible energy. Toward the end she came to think of it as part of her legacy, and when I go out there now I feel very close to a part of her that was all about living. Her sister came over and spent last summer here with me, and is planning to come again this summer, and we feel like Kris is still part of planning, planting, painting and building… Finding a joint family project other than cancer is a piece of advice I’d give anyone.
Make time for family. With Kris’ family in the US and us living in Sweden travelling was a bit difficult. Also, with a pre-existing condition Kris could only go back home (she never stopped calling South Carolina home) for shorter periods when she had a break in her treatment and felt good enough to travel. But her family made real efforts to take time off and spend long periods with her here in Sweden, to be with her whenever she went through difficult surgery or treatments, but also to just spend time with her. In the summers she and her sister went travelling together, and really made the most of having time together. She had lived in Europe for some years, but the last years she saw more of her family than she had for a long time. That was time well spent, and meant a tremendous lot to her, just as it means a lot to them to have had that time together.
On the grim side – one of the things I’m happy we did, was to talk about her death and what would happen afterwards. About if I would want to keep the summer house, that I would be alone with the cats, what I would do with her belongings, her fears about leaving her sister alone to care for their parents… But also about her view of life and death, what she wanted done with her body, her thoughts about the funeral etc. I knew that she had left notes behind about her funeral wishes, but it took some time to find them, so I had to go ahead and plan things without those notes. When I finally found them I found that they were almost exactly what I had arranged – we had talked about it, and I knew her mind on most issues. We always agreed that the funeral was for the living, and that it was I and her family that would decide what was best for us, but that in itself was good to have talked about – I knew that she wouldn’t mind us making the decisions we felt were right.
On the practical side, there’s the problem of doctors dropping the ball. Kris always said that her one regret about treatments was not having chemo after her original surgery. Opinions were divided on the benefits of this, but it had been decided that it should be done. But her transfer from British to Swedish health care was fumbled, and when we finally established contact with the right doctors in Sweden the window of opportunity had closed. This was an experience we had again and again, that doctors and nurses took wonderful care of her and really fought for her – but only after they had met her and felt she was their patient. Whenever she was handed over from one ward to another, or from one hospital to another, they seemed to drop the ball! Not even scan requests always got through to where they were intended. This is something I fell that I as caregiver should have been more proactive and systematic about. If this is a problem in the Swedish system, where patient records are computerized and accessible from one hospital to another, I can’t imagine what it must be like in a more paper based system… This advice I would really like to stress – make a personal contact with the ward you are being referred to and check that they know who you are and treat your case urgently, this is not information you can trust them to receive any other way.
Not least, in retrospect, this community was a source of endless strength, knowledge and inspiration without which we would have been so powerless. It’s importance cannot be overstated!
Wow, Marion, this is a good one!!
What I would have done differently…
I wish I had a greater appreciation for life when I was healthy. I remember the things I used to worry/complain about and they are so miniscule that it pretty much makes me laugh out loud.
During radiation, I started to get some acid reflux and let it go for about a week before I said anything to my Dr. I was started on medication and it took another week or two to find the right medication and right dose. During this time I started vomiting three times a day and lost 10lbs in 3 wks. I think some of this could have been prevented if I spoke up sooner.
Why does that darn pride always get in the way??
Take care everyone!!
Susie
I am glad that we reached out to every doctor possible and did not take my mum’s first diagnosis of maximum 6 months for granted.
I am glad my mum had these amazing friends who pushed her to do things after she got sick and leave a legacy of paintings, tales, poems and songs for us to remember her by.
I am glad I had fun with my mum after her diagnosis, helping her to cope and creating amazing memories to cherish.
I would have pushed her to go to the doctor when I started realising she was losing weight and looking tired – rather than attribute it to her getting older.
I would have taken more photos and videos of her, even or more so in the last couple of years.
I would have spent my time after her diagnosis on the fact that my mum is alive rather than worry that she might die soon…
I would have gone to the doctor at the first sign of pain instead of waiting and assuming it was nothing. I am so thankful for this website and the wonderful support. I appreciate life and want to fight as hard as I can to beat this disease.
I am so glad we fought and fought. Every minute we had that wasn’t supposed to be made our lives so much better than I could ever have imagined. I thought I knew how much I loved him but after his diagnosis it took on a whole new meaning. Jeff Was such a good person. He was a great father and the best husband and friend anyone could ask for. I will forever admire his courageousness. I can only hope to be half the person he was.
Wow, it is extremely humbling to read so many of your posts… I’m only 4 months in on my CC journey and I feel so extremely fortunate at this point that the resection got everything. There are so many of you that are not or cannot be in my situation due to tumor size or location and it is truly heartbreaking to read about it. My prayers are with you all. It’s one of those things where you ask why it happened to you and get no answer, yet the outcome of the surgery was a blessing in itself.
Margaret, I am so taking your words above to heart! I have been told that there is no standard protocol for someone who has clean margins after resection. No evidence that chemo helps or hurts, and no evidence that no chemo will help or hurt. Since I’m only 40, I’m doin’ the chemo! Whatever it takes, I want to do whatever I can to be here when my 13 and 11 year olds graduate from high school, graduate from college, find a significant other, get married, and ultimately give me the greatest gift of all…. Grandkids! I say a prayer every night for my doctors, for my family, and for the chance to make it that long and be there. It’s a one day at a time situation and you have to have a positive attitude. I start chemo Friday, I’m travelling for work in Houston and return home tomorrow. It’s probably my last ‘travelling’ trip for work until I see how I handle the chemo also. I am so thankful that I have found this board to read about others who have CC, it makes it so you don’t feel so isolated… I have tons of support from community, family and friends but having this ‘personal place’ online is very therapeutic as well. Thanks for letting me express myself, I wish all of you luck on your journey, I’ll be reading posts and try to contribute as best I can with my experiences once the Gemzar and ultimately Gemzar/Cisplatin start!
I would have PUSHED the doctors who did Tom’s resection for CHEMO after the resection instead of letting them tell us that Chemo was not necessary because they had gotten clean margins!
I would have insisted on a Scan every three months after the resection instead of just letting things roll along for 18 months until Tom started turning yellow!
I would have purchased a good video camera and took lots of video’s of Tom instead of just still pictures.
I wish I had INSISTED that his children spend MORE time with him and that would have given me a break from being his only caretaker! And he would have appreciated the time spent with them. I wish I had told them about how many times he cried because his kids did “not have time for him”.
I would have TALKED him out of taking that last chemo. I knew in my heart and mind that he was NOT strong enough to undergo chemo at that point. He may have been still here with me if he’d not gone through that last chemo 5 – FU, it was too tough on his already ravaged body.
Margaret
I asked Lauren these questions and she said she would have gone to the doctor as soon as she felt pain the first time and would have bugged him until he found out what it was. She says she feels best about her outlook on life now. She doesn’t get upset as much over things, is more happy and grateful just to be alive. Life is just too short to get upset anymore. She is very thankful that her treatments are making her feel better and she doesn’t get sick from chemo.
I would have made Lauren go to the doctor a lot sooner than she did. I thought she was having gall bladder attacks and they would go away or she would have to have it out. I would have definitely called her doctor and bugged him every single day to know the results of her ultrasound instead of thinking nothing was wrong since he never called us back. I don’t know if it really would have made any difference but if I was able to find out that if it was caught a few months earlier it would have made a huge difference, I would never forgive myself for not being more pushy about things. I feel best about knowing I am doing everything I can to help Lauren through all of this. I have quit my job to be her constant companion and full time caregiver. I try to find any information I can to help her. I know all my kids know that I love them more than anything because I tell them I love them every single day. I am so happy to have found this website and all of you. It was so difficult to read things on here at first but I pushed myself to get through it and now I can handle reading things. It feels good to give and seek advice. It is such a special bond to talk with people who have CC or take care of someone who has CC.
Lauren and I both have unwavering hope and will NEVER give up that hope that one day she will be well and cured and no one else will die from this terrible disease.
-Pam
I like this thread. I’ve been thinking about it all day. I would have continued getting annual check-ups. Prior to being diagnosed, I was caring for my elderly mother and we were constantly at the doctor’s office, emergency room or hospital. My mom kept telling me, “Stay away from doctors Betsy. Once they get a hold of you – they never let go and they’ll find something to treat whether you need it or not.” I skipped 2 annual physicals during that time. I would have gone if I wasn’t feeling o.k. but except for some weight loss, I felt fine.
I too would have let friends/family “in” more. I would have had my sister come stay with me. My first surgery, I told everyone to just wait until I was out of ICU and in my room. My last surgery in August, I told everyone to come and had my sister with me from beginning to end. Such a tremendous comfort to me. I’ve turned into the biggest “touchy/feelie” person.
Betsy
Our son, Christopher, was diagnosed with cc on May 21, 2006. He was an EMT, just completing his paramedic studies, he was an on-call firefighter and everybody’s hero. He was 25 years old. He fought valiantly, never giving in, and lived life to the fullest, yet lost his battle on June 27, 2008. We miss him terribly…
Some of what I’ve learned:
— cherish every moment — do not think only of the future, we do not have a crystal ball — live in the present!
— learn as much as you can about cc. Don’t bury your head in the sand, as I did. I had a difficult time even reading the info on this site! I think it was my way of coping.
— above all, never lose hope — believe in the power of prayer — believe that miracles can, and do happen!!
and
Never, Never, Never Give Up …
GailI have had cancer three times. With my breast and thyroid cancers I did not tell anyone except my family and some close friends. For my breast cancer I had surgery and took time off of work without telling the people at work what I was going through. I went to radiation therapy every morning before work for 6 weeks and then off to work where no one knew anything about what I was going through, so no one asked how I was doing. I didn’t tell my kids (who were very young) exactly what I had, only that I was sick and was going to be better.
Unfortunately, I have had 2 more cancers to get it right…I now allow my family, friends and coworkers to help me by telling them what I am going thru. I share my fears and my joys. I absolutely talked to my children about what I was going thru and they and my husband continue to be my biggest supporters. I went to counseling myself and brought one of my daughters who was living home at the time with me to work out some issues that cropped up during my treatment.
I discovered how hard it is for me to let people help me, I am always the one that helps. But I have forged strong relationships with so many people by allowing them the joy of reaching out to me…the same joy I get when I reach out to others.
Oh and for crying out loud.I totally should have gotten a port immediately before getting my first Chemo treatment!! I was not a good pin cushion and now I have limited veins to access for iv’s for all of my scans. The doctor told me I didn’t need one and I wonder how driven by insurance that suggestion was. One nurse told me that she thought people should be born with ports in them!! It was so much easier once I got it.
I did a lot of things right that I would suggest to others:
Get more than one opinion
Research, research, research!
Understand your cancer, but don’t let statistics impact you too much. You are not a statistic and if you are, well you can be a good statistc!
Ask for the things you need during treatment. A warm blanket during chemo, someone to look you in the eye when they are talking to you.
Give feedback to doctors. I went for my scan results (I had gotten good news via my internist over the phone before I went to my oncologist) and a resident came in and started asking me questions for about 5 minutes until I finally said “how was my scan” and he said “it looked good” and I said “you should lead with that next time….you buried the lead!!” On my way out after my appointment he made it a point to thank me for my feedback. Doctors, especially residents, are learning too and won’t understand the impact of their words and actions unless we tell them.
I humanize myself whenever I can, especially with doctors that are not in jobs that require ‘connecting’ with patients (docs doing surgery, biopsies,etc.) I tell them about my family, the things I’ve done etc. I never want to be just the liver they are biopsying, the thursday whipple, etc.
I can’t think of anything else to say and have probably written too much.
This has been cathartic!Just be good to yourself and enjoy your life…
-Randi-
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