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Beating Bowel Cancer Community

Stage 4 bowel cancer

KatB

Incurable.

Hello.
Past few weeks have been mental for me and I'm now in the worst place possible. At the end of Feb I went in for an operation to remove the tumours in my Liver. They took 80% of my liver and everyone was very pleased with how it had gone. I was told that the primary bowel cancer was pretty stable but it was a good idea to get on with surgery. So on Friday (6th) I came in for my bowel op. We had been lead to believe that this was a fairly routine op. When I came to I asked the Drs if it had gone well and the answer was no. They had not been able to remove any of the tumour safely. So the sewed me up and I'm now terminal.

Words can't describe how I feel, I am sure some of you have been here. I don't know what I am supposed to do now.

angepange

@KatB , your post touched me heart. I am so sorry you are in this awful position. Did they say why they couldn’t remove it , just so you had an understanding of why this happened? That may not even have helped you. Hearing that news must be like being hit by a sledge hammer. I really hope some of the fellow forumites come along who may be in a similar position to help you. I just wanted you to know that I was here and read your post and am sending you the biggest hug I can. :x::x::x:

Jacey Connell 74

@KatB Big Virtual hug. I am also incurable but I was diagnosed in March 2016. Still here and fighting. I will tag @Bear G in this as he is a inspiration to us all and I am sure he will have some wise words. :x::x:

Caraeliz24

@KatB I’m so sorry you’ve had this news, must be difficult to find the headspace to know what to do. I don’t have any advice.... just wanted to say be kind to yourself. :x::x:

KatB

Thank you to you all. It's been such a cruel process of being told yes, then no, then yes again. We really thought this was the straightforward one.

jinnyp

Oh @KatB what a horrible time you've had - I can’t imagine what’s going through your mind with everything that’s happened.
Do you have an appointment to see your oncologist yet? I hope that they can give you some reassurance and a treatment plan. Try not to dwell on terminology - you need to know what is proposed for you and then you can refocus.
Huge hugs for you , take care, Jane :x::x::x:

Wren17

Hi@KatB, sorry to read your post. I was diagnosed last year as incurable and inoperable. Have been on two weekly chemo and have been told this is indefinite but no one knows whats round the corner and like others have already mentioned there are many on the forum who have out lived their initial prognosis. Hoping you hear about next part of your treatment soon. Take care, lots hugs :x::x::x:

Baxter2

Hi @KatB

I’m so sorry to hear of your surgery not going to plan and the implications of this. I also dislike the term ‘terminal’ and prefer something like ‘maintenance’ which is the position I’m in. Often things change over time especially when chemo works really well and the inoperable become operable. Please don’t lose hope as I’m certain there will be treatment options open to you. I’m guessing your case will be discussed at an MDT very soon to plan a way forward for you?

Sending loads of love as you recover,

K💚💙💜💛❤️

Bear G

Hi @KatB and thanks for the tag @Jacey Connell 74

I’m sorry to hear the op couldn’t go as planned, especially after all you’ve been through. I can only imagine how you feel.

Lots of what I’m saying here is very much supporting the comments you’ve already heard from other forum members.

There are lots of wonderful things that are done in medicine these days but sadly often the language and terminology lets things down, I feel this is the case with you.

The term ‘terminal’ is actually a fairly casual label in oncology and doesn’t necessarily mean what we think. For example, I’ve been ‘terminal’ for over 4 years now!

You quite rightly asked ‘what am I supposed to do now?’ There’s no magic answer but I’d suggest getting an appointment with your oncologist and going with all your questions written down.

It’s important to understand why they couldn’t remove the tumour and then look at your next treatment options. It sounds like it’s likely to be chemo but that’s a guess on my part.

This is where terminology comes in again, you could be put onto palliative chemo or even be referred to a Palliative Care consultant. Again, this isn’t what it sounds like. For most of us, we see ‘palliative’ as ‘end of life’ but it’s not; most medicine is actually palliative in that the aim is to control things and balance side effects so you can have a fun life.

I’m on palliative care. I’ve been on palliative care for years and years and intend to be on palliative care for years to come! My oncologist and I call this ‘maintenance chemo’ which is a term I prefer.

I hope this helps Kat.

Big hugs
Bear
:x::x:

KatB

Thank you Bear, your message offers hope.

Sparrow

@KatB, I am so very sorry to hear that your surgery did not go well. I can not imagine how hard this must be. Sending you best wishes for a speedy post-op recovery, and a new chemo treatment plan in the future. Please don't lose hope... Sending massive hugs and lots of love :x::x::x:

DianeS

Hi @KatB, so sorry to read your recent post but @Bear G has given you excellent advise and reasons not to give up hope. It’s suggested I would definitely find out more information from your oncologist so that it helps you to understand your situation and ways of moving forward. Sending you lots of love and new hope Diane :x::x::x::x::x::x::x:

jess1

Hi so sorry to hear your news . My dad went for his op two weeks ago to remove the tumour , but 2 hours into the op we had a call to say he was in operable as the Tumour is attached to too many vital arteries / blood supplies etc but they still fitted a stoma , we are devastated and my dad is too weak to tolerate chemo as he has gone down to 6 stone so we are going down the alternative route as we have nothing to loose , the tumour hasnt spread to liver or lungs at this point . There are lots of positive stories on here though so try to keep positive (I know easy for me to say ) , Sending love :x::x::x:

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KatB

Thank you all for your kindness, I'm not coping very well. My husband wants me to be more upbeat, he wants me fighting and I just feel defeated already.

GD62

Hi @KatB

Sorry to get a shocker like that and best take @Bear G s advice. I am terminal too and was given six to nine months but coming up for 12 months in May and ot expecting me dead for at least another 12 months as they just knocked back my mortgage insurance claim via oncologist.

I was very calm about my death sentence, and just went along to the priest and made my last confession and got the sacrament for the dying too. Anyway, I'm still very much alive, but equally accept my time is uncertain and borrowed somewhat, but once you come to terms with death everything is so much easier.

Anyway, you're still here so don't panic.......:x::x::x::x:

Baxter2

I’m sorry to hear that you’re still struggling @KatB.

It can be very difficult to pick yourself up, dust yourself down and go marching on to battle when you feel this way.

Please think about some support for your emotional health and well-being and hopefully the rest will follow. Have you considered 1:1 counselling or/and discussing the possibilities of antidepressants with your GP? Both of these were pretty crucial in helping me out of the dark hole I was in back in early 2016. I’m still on the tablets and wouldn’t dream of trying to reduce or stop them since I think I benefit from all the support I can get!

Please don’t lose hope and keep in touch if you can?

Loads of love, hope and strength,

K💙💜💛💚❤️

Wren17

Hi@KatB, sorry to hear you are still struggling. Sending you lots of hugs :x::x: