Colon cancer with secondary liver cancer

Hi Bern ,

Welcome to the forum although I am sorry to hear about your situation .

I would think you would be best linking in with the palliative care team in your area . Hospice centres have largely broaden out now to support people over the longer term with many different life limiting conditions with a much more holistic outlook but access to the right specialists to allow prompt intervention . 

Your GP might be able to guide you but you also might like to try our helpline staff who could maybe help you navigate to the right resources in your area . Or link you in with a local centre .0808 808 0000 .

We are also here for you to offer online support as best we can and are more than happy to do that .

Take care,

Court 

hi

welcome to the online community, I'm sorry to hear the situation you are in. 

I'm not from the bowel group, I had breast cancer but I'm sure others will be along shortly to make suggestions and share their thoughts. 

court is one of our champs and I'm sure will be able to share some experiences 

In the meantime, since it's the holiday weekend, perhaps you could have a look in some of the different areas of the community? How techie are you?

My mother was in a similar situation in that she wasn't able to have treatment for her leukaemia due to a lung condition.

Would you be thinking to get a second opinion  ? Have the team recommended any kind of hospice support ?

hugs

Carolyn

xx

Hi Carolyn 

I feel like I'm in no mans land, so I'm looking for options and opinions to make the right choices, ive got an appointment for my doctor next week, tech savvy me !!!!  I just cope with my mobile phone haha, my  youngest granddaughter is more clued up on that stuff. I'll take on board your comments and discuss them with my doctor. Thank you so much for your reply.

          BERN 21 

                XX 

hi 

I've been hanging around here since 2015 and I'm continually amazed at how long these incurable diagnoses can last, my mother lasted 5 years from when they finally decided that she did in fact have leukaemia and whatever the lung condition was, I can't remember, meaning she couldn't be treated effectively, therefore making her 'incurable'.

The issue is then making the most of what time we've got and nobody I have ever met made the most of her remaining time than my very good friend who struggled along with breast cancer for 16 years, the final 7 of which she was deemed incurable.

So, they might not be able to do anything for you but you still have plenty of options for doing things for yourself. Whether it's seeking out alternative treatments or just making lots of fun memories. My friend chose to start a plant business and travelled Europe buying flowers and plants, she also took holidays to plenty of different places. If I look back at the same time frame I cannot claim to have done as much.

A lot will depend on how well you feel. I don't have an incurable diagnosis but when I was eventually diagnosed with primary breast cancer I hadn't felt well for a while, I was able to function but I really was just plodding along. Surgery was fine but chemo is brutal and wipes you out. Once I'd got over that I did feel a lot better, had more energy and some of the symptoms my GP had put down to age and hormones vanished. I know some say they do have good weeks and bad weeks, or good days and bad days, even when incurable. The only thing you don't have is certainty. Maggie Smiths character in the Best Exotic Marigold Hotel said I don't make plans, I don't even buy green bananas, and that was just down to old age.

My mother faded away but my father dropped dead, well not quite, but he went to bed one night feeling slightly unwell and didn't get up in the morning. I was in the middle of my O levels, I didn't handle it well. I read somewhere that cancer is actually a kinder way to go because you get prior warning and a chance to say your goodbyes and put your affairs in order. That was certainly true for me and my parents. 

One day medical science will allow us all to live on indefinitely and it will be up to us to decide how and when we shuffle off this mortal coil. 

I'm not good at decisions, my husband once told a waiter not to give me a menu or we'd be there all night.

You have kids, you have grandkids, your life is a success by at least one of our usual criteria. 

If you had plenty of money would you spend some of it traveling to a clinic in Germany to try proton therapy, as an example?

If they told you you had six months and you could have chemo to extend your life to nine months but that the 5 months you were having the chemo you wouldn't be able to move off the sofa, your bones would ache and you'd flip between constipation and diarrhoea,  which do you choose ?  Quality or quantity ?

You're in limbo at the moment but with help you can make some plans. 

how do you feel in yourself ? are you able to get about, do the normal day to day stuff ? how has your COPD affected you ?

Carolyn

xxx

Hi Carolyn, 

You have had a tough journey with this disease via family and friends, but to me you seem to be a calm, level headed person who can meet things head on, this shows you are a strong person.

I will never know the effects personally from chemo, or surgery, sadly those options have passed me by.

Its only been 5 months since i was diagnosed, but i am starting to feel changes in body, habits, my family are my rock and have been there with me from the start, your question regarding an extra few months with treatment, i think I'd decline the offer. I mostly use taxis to travel or if any of my children are off work to take me out. I walk a short distance but rely on my inhaler too. So i enjoy each day as it comes.

              BERN 21 

                  XXX