Dealing with never ending treatment

[Never-ending]

I am 67 retired at 65 and diagnosed 18 mths ago with stage 4 bowel cancer metatisised to the liver (inoperable).  

My initial 6 months were horrific in and out of hospital and ED.  Two attempts to insert Porta Cath which in a few months had to be removed and reinserted due to clotting.  All this and 6 weeks of radiation. I was ready to throw in the towel.  

Now my life has settled into a pattern around fortnightly chemo followed by 2 days 5FU at home.  My tumors are considerably reduced but still not operable.  I have side effects after each treatment days of extreme fatigue, skin rash, bowel issues but I am well enough on three days of each week to pick grandkids up from school and can socialise every second weekend.  

I am just having trouble dealing with fronting up for this every 2 weeks for the rest of my life or until the situation worsens.  It is like waiting for the other shoe to drop and keeping positive is hard.  

I know I am lucky compared to some but the reality is harsh. It is not how I envisaged spending my retirement.

I am single but have a supportive family.  They all work and I should be helping more with their childcare issues. I do what I can when I have good days.  

I really need to have something outside of medical and family to get out and about but it is hard to find activities that are flexible around my bad days.

I need more exercise as my physical strength is waning but not keen enough to do this on my own.

Just wanting reassurance or strategies for living like this for the foreseeable future.

[Nikki]

hey, i'm in the same boat as you. My dr said i will be on some form of chemo for the rest of my life. I have stage 4 colorectal cancer with mets to lungs and liver and was diagnosed 9 months ago. I'm on folfiri with cituximab so have fortnightly treatments and get the lovely bum bag and pump to take home as well.

When i was first diagnosed it was a if they hadn't picked it up i wouldn't of made x-mas but since starting treatment i had 4 tumors in my liver and now only  have 1 large one and my bowel lining isn't as thick and the 2 in each of my lungs are down to mm instead of cm. the lung tumors in the last scan have strated growing again but are still only mm which is why he introduced the cituximab iv had 12 cycles so far i'm still inoperable and they won't do anything until my lungs are clear but Dr. B is now saying that if we get rid of them we can look at surgery.

Don't give up hope. Enjoy every moment with your kids and grandkids that you can, the fact that you are still helping them out when you can is great. And your tumors have shrunk!! that is great news. I also struggle with feeling like my life revolves around cancer with chemo, blood tests, scans etc but you need to remember why you are doing it and why your are going through it. Every day you are able to help out or spend time with family is a reminder of why you are doing what you are doing. i'v started meditating and walking on my good days as well and i feel that helps (but i think it's more a control thing because i can't control the cancer or my reaction to the chemo but i can control what i'm eating or when i'm exercising) but also fishing it's one of the things i can do when i'm not 100% and being outside always seems to make you feel more motivated. and if you do it off the rockwalls you will always find someone to have a chat with.

No one expects you to be positive all the time it's to hard, but if you focus on the now instead of the what might be it makes everything alot more easier to cope with and enjoy the little things.

I wish you all the best on you journey, nikki xxx

[Paul_D]

 To "Never Ending", I have treatment on a 3 monthly basis for my Bladder Cancer and yes it can be very hard to take as a long term thing but as you yourself have answered your own question in "I have this for the rest of my life". Yes the alternative isn't good without the treatment so learn to live with "your new normal" which we all have to and as Nikki says enjoy your grandkids as they will put a smile on your face every time you look at them even when they get grumpy.

Love your life

Paul