Hi, I have recently been diagnosed with stage 4 colorectal cancer. A month ago, I had a colonoscopy expecting to discover polyps or haemorrhoids. Instead, I have cancer! I go into surgery tomorrow morning for a bowel resection and a to get a colostomy bag. I meet with oncologists in a fortnight to discuss radiation and chemotherapy. Apparently, I will need chemotherapy for the rest of my life. I am feel totally overwhelmed by all of this !
Hello @LuckyLisa and welcome to our community!
How did the surgery go on Monday? I hope you are recovering well, and most importantly, you are NOT alone in this ❤️
I am also sending you an email with a few other options here at Cancer Council, so keep an eye out.
Online Community Manager
It is a normal feeling to be overwhelmed by your diagnosis it’s definitely a big shock, a mate of mine is stage 4 with rectal cancer, he has had a bag and surgery,it’s about two and a half years since his diagnosis,he is on a lifetime maintenance chemo dose , but he is doing ok,he enjoys going to work it helps take his mind off things,hopefully in time you will be able to adjust yourself to what is occurring medically with your body. I hope surgery went ok.
I am truly sorry to hear of your plight. My father had colon cancer that caused a blockage and he had to get a colostomy bag. It winded up being a god sent for me.
I am going to tell you something you will not want to hear and hopefully they are not going to applicable to you. Beyond stage 3 your survival rate drops dramatically. Once it hits your liver the stats say 6 to 8 months with out chemo. Chemo will give you 4 to 6 months longer.
This will be hard to hear but I promise you every person on the earth will experience death. It is just that not all of us will experience life. My father wanted very badly to live. He was so afraid of dying and not once blamed me for not catching the symptoms sooner. In all honesty I should have. I just did not know what to look for, or was to busy doing something I thought was important that in hind sight was not.
He privately told me before he passed that he wished he did not do the chemo. He got very weak, very fast. Did not enjoy food, and found little pleasure in anything he did. His diagnosis was always tugging at him. That bag he had was so helpful to me because without it I would have had to help him to the toilet all the time as my mom could not stomach it. That bag made care a lot more easy. He also had kidney issues requiring injections but he wanted pills. We forced him onto the injections and once we got the pattern down it was not hard to manage.
He remained fairly lucid and strong until about 3 weeks before he died. And the last three weeks were not kind to him. His liver and kidneys failed and thank god I had a good employer because I took 2 months off to care for him and it was a 20 hour a day job. Too little too late. Trips to dialysis, his chemo treatments for 4 hours. Watching him from bringing roofing bundles up a ladder all day to barley being able to steady himself to put on sweat pants was difficult.
My father did take out a policy on himself for my sister and I to help out. And we tried to take his mind off things and do things he always wanted to do but never did. And to this day those things we did while he had cancer that were bucket list things are the memories I cherish most. 700 dollar seats at a giants game, a surprise birthday party, buying a new car, purposely getting a speeding ticket because he knew he would not have to pay it, running up credit card debt because they could not come after him for it, picking fruit, making wine, watching the Giants win in 2012, buying a 68 Camaro driving up the coast, 120 dollar steaks, Lots of other little things..
He had the decency to make it easy on my mom and sister because he did not once complain about it. Enjoy the time you have with your loved ones. Don't dwell on your situation. Listen to your doctors, get a second opinion but don't grab at straws that are not there. Do exactly what they tell you? When they give you good news take it gracefully, when they give you bad news...... don't blame them. Oncologists have crap jobs. There patients die more often than they live. I remember very naively arguing with the doctor about resection and embolization and how the cea markers were down and he was stronger than the week before. I did not want to hear the doctor telling me that the body does that before it really shuts down. Body doing a last push. They see it all the time and they see people like me all the time, looking for trials and experimental treatments, praying and hoping it will go away. They know the science and the time extension a treatment will give you. they know experimental treatments are not to help you , but more to help the people after you 5 years down the road.
Please enjoy your time. Your loved ones will thank you for it.
I hope I am wrong about all of this. But either way take stock of your life reestablish connections with people you got out of touch with, repair broken relationships, and enjoy your life.
I hope you are one of the ones that flips off cancer and the science.
Hey lucky Lisa. My name is Suz123 and I have the same diagnosis as you and yesterday I started chemo. I now have an infusion port under my right collar bone which sits under my skin where they connect my chemo line to and it is much better than the dreaded canula's. They even give you a little numbing patch to put on it 45 minutes before your appointment so it doesn't hurt to have the needle slipping in. The little bottle of chemo sits in a bag, either a bum bag or a shoulder bag which comes in a range of lovely colours. I wear mine for 2 days and am currently having 2 main meds through it. So far I am being extremely lucky and have no side effects from the chemo.
Now to George, my really badly behaved stoma. Yes I have named him and yes it's a him. I won't say why it's a him cos it might put people offside but they are very good reasons. First of all you will learn to have a great sense of humour because if you don't laugh you will end up crying. Nursing staff are wonderful and very helpful when you first get your bag. At first I was horrified and apologised to nursing staff all the time for something I have no control over. It is active when you don't want it to be, like when it is time to change the bag, the bags leak, you get into some wonderful messes and you can have some embarrassing situations happen. Sweetie this happens to everyone with a stoma and the sooner you can laugh about it the better it will be. My stoma was being changed and I swear to you my stoma quacked just like a duck. I burst into laughter and the more I laughed the more it quacked, the darling thing was farting. The nurse was laughing and I think that was when I found that sense of humour I needed so badly. When I am in company it makes farty noises and I simply say excuse me or I laugh, depending on the company. I always carry a towel and a change of stoma bags when I go out but I can't change the bag myself as I don't have 4 hands and it is in such an awkward spot I can't see it. I normally go out with a family member anyway and if there is a lot of walking I take a wheel chair so it is easier to hide any accidents.
I have had a bag last for 4 days before needing a change or I can have up to 6 changes per day depending on the output. Something called Gastrostop can become your best friend. If you find your output is liquid an emergency aid is Marshmallow and it works quickly. eat about 6 and it will stop the runs. They taste good too. I am diabetic so I have to be careful with them. Mention it to your stoma care people they will confirm that for you. They can also give you a list of different foods to avoid while you heal and things you might choose to avoid plus things to reduce odour and soften up your stool or firm it up. (Sorry bit of a tacky subject I know.) Prior to becoming sick I was fine with dairy foods but now I can't eat them as they go straight through me and I adore yogurt and all things milky. I can tolerate a little milk in my coffee etc.
It is a tough thing to get used to in life but you will get used to it. Laugh as much as you can and understand you have absolutely no control over your stoma, but you can learn to understand it better with time. You might feel bad about the bag regarding your sexual being but you can get some stunning sexy and lacy knickers to wear over it. Understand Cancer is a word not a sentience and you can live with it as you relax. Try to find your place of peace and learn to let go of the things that are no longer important. Pamper yourself and learn that you are in charge of your life. If you are tired, relax and nap if you don't feel like talking, don't. Find a confidant and talk to them when you need. Reach out to others and never feel like you have to do this alone. Learn to love and live every moment you have and be daring. Dance,laugh, cry, swear, be you and find your inner peace. Have a life but don't let this rule your life. Yes you will make some changes but once made let them go. I am happy to chat with you on this forum if you want to. I dyed my hair a bright deep purple red, and cut it in a bob so I went a bit will for a 67 year old lol. The chemo I am having won't make my hair fall out but it might make it go curly. Hey I always wanted curly hair!!!
Wishing you all the luck in the world
Regards and love, Suz123.
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