Feeling lost and confused

3 replies
183 subscribers
344 views

Hi everyone I was diagnosed the end of June with a bowel cancer and told I had a spot on my liver 4 days later I had emergency surgery to remove the tumor in my bowel taking 1 third of my colon. Then told I will see a liver specialist when I recover from operation then sent for more ct scan and mri scan I see liver consultant 8 weeks after opp then told I have 3 tumors in liver but can have a liver resection an taking 60% of liver advice opparation will be in 2 to 4 weeks. I get a phone call to say my operation has been cancelled due to strike next week an haven't got another date yet I'm supposed to have chemotherapy after iv recovered from liver surgery does anyone else have the same treatment plan is this normal also they told me I have something on my lung but they not concerd yet iv never seen a oncologist or have a nurse I can contact I'm confused and sick of waiting for a proper plan I'm sorry about the rant but I'm just confused and frustrated also please egnor my spelling I'm dislexic

Natata over 1 year ago

Hi Binkey

welcome to this supporting group

sorry to hear you have got a bad experience

I am in different route of treatment but I think you should be under care your local colorectal team , as I got there number and always can ring them if I got any questions. I don’t know exactly why you don’t have there support but if you look at your hospital website you can find Colorectal team number or you can contact MacMillan as they might be more helpful at this point

hope everything will resolve for you soon

natallia

Binkey over 1 year ago in reply to Natata

Hi thank you for replying I had a collectrol nurse when having the bowel operation an post opp I called her the other day about going dizzy an she said I'm not under them now and to call the specialist liver nurse at the other hospital but she doesn't answer messages I left 3 today an no reply only contact iv had is from the appointment line to say operation has been cancelled but doesn't know when it will be rearrange. I'm just concerned it spread more with the delays and others have chemotherapy before they have an opporation iv been very positive thinking have the opparations then a bit of chemotherapy then I will be bk to being fit to get bk to work.

Thanks for listening x

court over 1 year ago in reply to Binkey

Hi Binkey

Welcome to the forum . Well done on getting through your first surgery .

If you click on my user name you can read my mum’s story as she navigated a stage 4 diagnosis. They removed 73% of her liver back in 2010 and it’s stayed clear . It regenerates and although a slightly different shape it has worked well for her over the last decade . She is back in treatment for a spread to her lung and her liver is still holding out well .

Her lung mets have been much slower growing compared to her liver . In fact it has taken years and years for some to grow .

I hope this gives you some encouragement in what is a difficult time of waiting .

Stay strong and we are here to support you . You are in good company with the dyslexia. I have it too . A bit of a pain but we learn to to work round it so don’t let it put you off contributing.

Take care ,

Court

Helpline Number 0808 808 0000