Stoma time at the Cancer Club

Hi Anthony 

Thank you so much for sharing your story with us. I’m not in same position yet but never say never and when I read a story like yours it gives me a boost.

Cancer can bring negativity.

Thanks so much for your positivity,

I try to keep upbeat like you  

Keep doing the things you like 

This is great . So balanced . You cover some points that I think spring to mind on hearing a stage 4 diagnosis but not always discussed .Faloola some points in here that might make you might find interesting. 

One for the bookmark .

I think for me on hearing my mum’s diagnosis I focused immediately on the subgroup of patients who obviously do well on treatment . That gave me some encouragement even back in 2009 . She has yet another recurrence to confront but because she took treatment our family have had the most wonderful decade together . 

Mum sought out every window of opportunity that came her way . Twice she had to ask other clinicians what their views were and she went with it . That was not so common back then but it allowed her the gift of time in both situations . People advocate mum better for their health now and I do hope that’s reflected in the stats soon along with more treatments .

All the very best with your next step in the treatment path .

Court 

Any chance of you adding Stage 4 in your title as I can link it in for newly diagnosed members . You don’t have to but I think it’s so much better when it comes from a person with experience than me rambling on as a carer .

Court 

Court xx

Hi Anthony,

Just read your story which is inspirational. I to have been diagnosed stage 4 recurrent bowel cancer. It’s returned 10 year after first diagnosed and thought I had been cured but hey ho here we are again. 

my first appointment with oncologist not that great he said he wouldn’t be offering me any treatment as I had no symptoms although after I kind told him he was incorrect he gave me 5 days radiotherapy. 

I meet with him again on 25th and if he still insists no treatment offer I will request a second opinion. 

Do you think that’s reasonable?

Hi Cath

It's hard to make sense of what Specialists say in these interviews. Record them on your phone after asking permission.

It seems nonsensical to say there are no symptoms if the tumours are back. 

Radiation requires some time...say 4 to 6 weeks to assess benefits. Thats the line I was given ...so maybe this is an interregnum.

A second opinion from another insitution is a big deal and your treatments..if any may be delayed by record transfer, new scans ordered, admin mess ups etc. Not potentially cost free to your health.

Why not ask for an explicit detailed verbal evaluation of your situation?

Ask for copies of your MDT minutes. That could be a first step. The Dept will have an admin wallah to can print them off...email the pdfs.

An early appt fixed at the time you make these requests will concentrate minds.

Your Hospital probably has several MDTs for Oncology. That's a line to consider. Another team ..another chance...possibly.

So my advice is dont act in haste. A clearpicture of your chances is required. Courteous and firm.

Dear Court

Not sure how to add Stage 4 to the title. Ciuld you help by doing that? Much appreciated.

Hi Anthony Hope you don’t mind me jumping in here but if you click on the ‘more’ button then ‘edit’ it will let you amend your post? X

ps great post

Hi Anthony,

Thank you for your advice. I have my second meeting with oncologist 25th,I will definitely request copies of minutes of MDT meetings. There can’t have been that many. 

Hi Cath

Up to you but why let the grass grow under you?

Maybe its different in your area but appts at UCH are 15 mins generally. It would perhaps be best to discuss them on 25th rather than be diverted to  admin rigmarole at the time.

The Dept Manager can email them over and you only need the last few meetings anyway...or where there is a discussion of options and status.

UCH flick them out on a phone call. Incidentally you will have given bloods. CEA level?

Information  once received may generate less stress for you..blah blah