Secondary Liver Cancer

Hi Rae

Just want to let you know I am going to connect with you over on the bowel forum .

Court 

I really hope you have found some help on how to cope with the waiting. I’m facing the same sort of situation as you. I was told quite bluntly that I have secondary liver cancer after a routine scan regarding my previous bowel cancer. I am waiting for my follow up appointment to discuss the way forward! I’m trying to laugh it off, but can’t help going to a very dark place sometimes. Keeping busy helps, but talking helps more. My family don’t know how serious the situation is as I don’t think they would cope very well. Sending you lots of hugs and hope for answers soon.

Hi Jools63,

Stay strong - easy to say I know and not always easy to do, but you are totally so so resilient!  I've been on a bit of a journey since my last visit to the forums, for me, i switched from worrying  to fact finding to save my sanity and cope - my brain was swinging from the worst possible scenario and the best possible scenario - totally exhausting.  I realised if i didnt find a way to reign it in i would be mentally in no fit state to deal with anything. Also I had developed at first diagnosis a very dark sense of humour too - at times this was way to much for friends and family sometimes  - but with the greatest of respect to all concerned - its you that ultimately needs to cope first! 

I was really distressed by the initial things I read about secondary bowel cancer in my liver and hit the deck;  I very fortunately was given two options by my Christies team - I honestly didn't believe I would have any options.  Have a further 3 months chemo (absolutely what I vowed I would never do again having only finished 6 months chemo 4 weeks previously) then have liver resection (if still viable for surgery after chemo) or go straight in for liver resection without chemo.

Amazing to have any options - but how do I make a decision like that - would 3 months be too long to postpone surgery if chemo didn't work?

So I read everything I could - nhs sites, macmillan sites, blogs, anything 'fact based' I could about how my liver worked, what it needed to do its job, and I asked questions - so so so many questions.  I was fortunate to have an amazing liver surgeon who was so patient with my questions, my what it's etc.

The fact finding helped me massively, being more tuned into the functionality of my body (i understood my colon but i knew nothing really of the complexities of my liver!)  enabled me to feel in control of a situation I could not be in control of! 

With the support of my medical teams I opted to have the 3 months chemo then surgery.

As I write I am 2 months post chemo and 6 weeks post liver resection, my haematology from surgery for the margin tissues is great - its clear.  I have a scan scheduled for 3 months time - yep its there again, that waiting game! BUT on 31st Jan 22 I couldn't see me in these shoes - post surgically cancer free.

I am trying to learn to live in the moment a bit more - but I'm a planner by nature so it's hard.

I know this reply is long winded, but what I kind of wanted to say is that ..... like our first diagnosis, the phrase that you hear all the time from people  ' you just  never know - its true' - but just as this relates to the totally rubbish news we have all lived through at least once it can also relate to positive news and hope!

Keep busy - absolutely, don't worry about using humour (even if it's dark) - you find your path of what helps you go day by day during the awful awful waiting or news and results periods - this is your personal journey and absolutely the best thing - keep talking - to who is best for you to talk to, this may be family and friends, it may be chat rooms like this, cancer support specialists or it could be that person you exchange with in your local shop!  I surprised myself hugely and accepted talk support with my local Hospice, that sounds scary I know but it was amazing - I could say what I needed to, be as frank and blunt as I needed to be and I knew they were not scared by what I said, and not affected or worrying about it as my family would have done.  They gave great support and advice.

Now is a good time to talk to a 'professional' the time when you have no idea what is going to be said at that appointment,  you are in limbo and I know it absolutely stinks! You have so much support on here too - but it will help psychologically to tap into a little bit more, it is a great connection to make to help with that limbo and black hole/nothingness as you have not yet got anything to pin a reaction to.

Again, sorry this is long but ...... we are all here, its a big gang of people who have the biggest hearts and experiences - so, tap in/tap out, your terms x x x

Sending positivity 

• Rae xc

This post is just brilliant Rae if it’s ok with you I am going to bookmark it and use it going forward .

Glad to hear your the other side of surgery, treatment and hopefully onto pushing those scans further apart .

Take care ,

Court 

Wow! I can’t believe your response. Thank you so much. I was only talking to a friend this morning about how dark my sense of humour has become. I wondered what effect it might be having on my friens and colleagues. I’ve decided that I’m going to be optimistic, but realistic. Some posts on this forum have made me think about what I’ll do if my prognosis isn’t good. My immediate thoughts were t speak to the company my life insurance is with, and ask what criteria they needed to pay out! I will not be wasting time on regrets. I am going to try things that scare me. Make time for my friendsand family, spoil my dogs, and continue to volunteer for as long as I can. I’m really heartened by your own progress, and will revisit this post once I have some answers. Keep improving and living yur best life. ️

Hi Court, if you think it would be of help, please do.

X x Rae

Hi Jools63

Thank you x x 

Sounds like your doing good!  I found that I did have insurance that covered me for critical illness even though it wasnt obvious at first glance - it was a policy i had taken out 20 years ago so i had forgotten the details.  Make the call, absolutely worth it. Not sure on your personal situation, but check what benefits may be available to you to perhaps lighten the financial load.

Do the things that make your heart and your head happy!  You must find that having your dogs is a fabulous feel good - gorgeous and very intuitive animals.

When and if you wish to and if you feel ready, touch base when you know more - be lovely to follow up with you.

Stay strong and positive.

Rae x x

Thanks for another lovely message. I phoned the hospital earlier to ask if I’m on the list for tomorrow’s MDT meeting, and I am. I was so pleased. Then the doctor asked to speak to me and asked who live with, and what sort of life insurance I have! I was so shocked that I went into complete panic. He’s phoning me tomorrow around 5pm so I guess I’ll know where I stand then. I’m not going to telanyone about tomorrow’s phone call except my best friend. I want to be able to process whatever the news is on my own. 5pm tomorrow seems an awfully long way off right now. I have registered with thhelpline and spoke to an amazing guy earlier. I feel quietly calm at the moment. I’ll update you lovely folk when I can.

So glad to read your story, has given me strength to fight this, and not give up! 

Rae, fantastic you took such time and care in your reply above. I'm sure it helped immensely. I'm a bowel and secondary liver patient and had some success after 3 months of chemo, in that bowel lesion appears to have gone and now waiting to hear whether a laser or keyhole op on liver is recommended. Thanks for your piece, best regards Alan