Waiting for treatment news

Hi Jopeg

Welcome to the forum . On reading your post I have to say I thought it was quite unfair . Some hospitals have different protocols about who can give out information but I really think they could have explained that better and I can totally understand your anxiety having a spike at that approach!

Your GP is a valuable resource and may actually know the content of your letter . My mum’s share the same clinical portal and he was happy to chat through information with her . Not all may be willing to do that but might be worth giving them a phone for some support after that situation . You also might like to phone our helpline nurses as they could chat through the protocol aspects better than I can . 0808 808 0000.

I would not however read anything into it ! I have been here for over ten years and seen people go through heightened anxiety over similar situations . Turn up on the day and all is well ! I do sometimes think they don’t always realise how we hang on  to every word they say or try to interpret every facial expression.

Take care ,

Court 

Thanks Court

I can’t say I have much faith in my GP but I will keep that in mind for the future.

As I find out on Tuesday, I have done the bulk of the waiting already, so a little longer won’t make much difference.

Well, the spot/patch on my liver is cancer as well, so it has spread. I need bowel surgery, liver surgery and chemo. The bowel surgery should be this month, not sure about the order of the rest. Apparently I may need a PET scan too, more to worry about.

Hi Jopeg ,

I am so sorry to hear that but it sounds as though you have a good treatment plan getting lined up . Although it has spread bowel cancer has quite a lot of options in that situation compared to other primary cancers and it sounds as though they have surgery in mind for you at a later date so that in itself is clinically good !

If it’s any encouragement my mum had surgery ten years ago this week on her liver and it’s remained clear !!!

She went straight to chemo first then liver surgery after chemo . However they will tailor the plan to suit your needs . The PET scan has never revealed anything in my mum that the CT scan had not already indicated but it did show uptake which confirmed their suspicions!

All in all they took very good care of her and the liver surgeons were highly skilled .

However it’s a horrible shock and takes time to find your feet . We also have a helpline who would be happy to talk  through any aspect of it and reassure you . 0808 808 0000
We are here to support you until you are safely through this process.

Take care ,

Court 

Thank you Court

Did your mother have bowel surgery too, if so at what stage?

I will probably phone the number tomorrow.

Jopeg

My mum Had a big spread to her liver so they prioritised that to be more pressing in her case . They gave her chemo first then she actually had a liver/bowel resection at once after chemo .  She had a recurrence and then a straightforward liver resection on its own . I don’t think they do as many combined resections now and things have changed . But they will come up with a good plan after the MDT meeting and all the information is available.

Take care ,

Court 

Ps if you want to read her full story just click on my user name . Sounds as though you have significantly less spread to the liver than her so would not require the same type of resection . They again tailor it to the size of the tumour .

Thanks court I have read her story and have been also seeing how supportive you have been to other people. May I ask how old your mother was when first diagnosed? Not sure if age has any relevance, but would be interested to know. I am just approaching  60.

Jopeg

Hi .
Yes of course you can . She was a young 67 ! Her biggest resection was at 69 and had her birthday in hospital and 73 at her lung resection.  She has good general health and she recovered from surgery well . Very few post op complications . Chemo was a bit harsh for her but she got through it twice !

Many people supported me in the early days . It’s the way my mum raised me to pay it back !

take care ,

Court 

Thanks