Newly Diagnosed Stage 4 Bowel now liver cancer

Hi Stronggirl59 

Welcome to the forum . I am so sorry to read your post .

You sound as though you have had a tough time being in hospital for so long .

Do you mind if I ask if you have a treatment plan going forward ?

My mum has been a stage 4 patient for 14 years . So please hang on in there . The initial period was the worst straight after diagnosis whilst she was trying to process the information.

She had five tumours in her liver but they responded well to chemotherapy and she had a liver resection . However life is never straightforward and she had a recurrence, back to chemo and a further 73% of her liver removed . That was back in 2010 . It’s remained clear .

She also has a spread in her lung and is currently still on treatment with a targeted treatment.

There has been some tough times but so many good times as well .

Our helpline staff would be happy to chat through and get resources for you to help communicate with your daughter .

0808 808 0000.

Its a lot to process but there are others around dealing with a secondary spread .

Hopefully they will pop on soon .

Take care ,

Court 

Hi, Thankyou for your reply. Had Oncology appt on Wednesday. They will start with aggressive chemo in 2-3 weeks when there is a space. 

My whole situation has been a mess from the start. I was misdiagnosed three times on three trips to A&E over three weeks at the start of all this. Then finally a nurse ordered a C.T. with contrast with led to emergency bowel operation. Then I was on ICU for about two weeks & ventilated because I nearly died!  Then onto a ward, then another ward, then discharged. Within a week I was back in hospital as I had a leak & another emergency operation & ICU again for two weeks. Finally then on to a ward for 4 months with almost weekly trips to theatre to wash out. Discharged in July. 

Blood test in October showed high marker for CEA which led to C.T. but this result was delayed until the secretary returned off her holiday. It should I am Stage 4 with further spread but this wasn't urgent enough to inform anyone!!!!!

I now have another 2-3 wait for chemo. 

It feels like they know I am going to die so not rushing anything. 

I am on Codeine but struggling with pain so a prescription has been done for Oromorph which I had in hospital. Kinda feels like one way trip to death. 

I am angry and upset. The whole thing has been misdiagnosed & badly handled. 

Oh gosh what a time you are having!! Hope you are being Stronggirl!! Hang in there and try to be positive.  Sending all the best.....x

Thankyou. I thought I had lost weight but at Oncology appt I am 11stone!!! Whilst in hospital I lost nearly 3 stone. Every week of weigh in I lost several pounds every week. These days I eat what I want, when I want because I got a weird taste in hospital, someone said it could be side effect of all the G.A. I had. Stayed with me even on discharge but gone now thankfully..

Nothing I eat tastes how I remember!!! Not much appetite and I have lost 13 kilos since May. Now I get to struggle with a loose tummy almost daily!!! It's tough trying to stay alive!!! But I refuse to give in!! Hang on in there!! X

Hi Stronggirl...You have certainly been through it my heart goes out to you, it all seems to be a bit of a nightmare.  Have you got family and friends? I do hope so as you certainly need a lot of support with what you are going through. did you read the post from Court as that sounds really encouraging as her mum has been Stage 4 for 14 years. I am pleased you are getting some Oromorph, I was also told I could take Paracetamol as well as the Morphine.  I was then changed to slow release patched, and they helped.  I know it feels like they are not rushing things, I felt exactly the same, and its easy for me to say it now, but that is how it felt at the time.  Its also easy for me to talk like I am, as I am now pain free,  but  I know when I did have awful pain at times I felt like giving up, but please don't, I am sure the Morphine will help so please stay positive, and keep us updated...xxx