Should we get diagnosis at clinic or at home by phone ??

Hi Tillys dad and welcome to the forum.

Its a difficult one but if it was me I would prefer to hear any news in a clinic setting where any questions that you have can get answered wheras at home you may not think to ask them. However, if you are not able to go into the clinic with your wife then maybe best at home as then you are both together and can support each other. So it really depends if you are able to go into the clinic with your wife, is that able to happen or not? .

Not  an easy one for either of you and I hope that you get some positive news for you both.

Thank you

Hello Tilly’s Dad, I don’t think there is a best answer that fits all, it’s just important to remember why you chose the option you both did, that made it the best decision for you at the time. I assume they said you could call them to change your mind hence your rethink ?

I had my diagnosis 6 years ago and it was actually on the phone, we had agreed they could do that while I was in hospital, and I assured them that I would be well supported emotionally for that phone call. I didn’t feel disadvantaged because of that because they had to make a referral to a different hospital for me so it wasn’t as if I missed out on meeting the dr face to face. It also was easier to be at home as I was unwell and I saved all the time it would take to get to hospital. 6 years later and I am still on treatment every 6 weeks and talk to a dr on the phone a few days earlier. I was only thinking the other day how I actually hope they don’t go back to how it was too quickly as the waiting room was packed, and it takes over an hour to get there for a 10 minute chat. They want a blood test before that and we had to arrive an hour early for that where as now  I do that part a few days earlier. So I can stay at home, I have a note book just for medical discussions and my husband sits with me as we put the phone on speaker and he records the call on his mobile just in case but they always send a letter afterwards with relevant info. I sometimes get anxious which can make you go blank, so preparation for me is important especially as this last week they called 70 minutes early, and have at times been an hour late. Being at home it’s easier to keep busy or distracted waiting for the call rather than being in an unfamiliar place. You will remember where you received the news though so it might be nice to plan something nice for afterwards. I hope it’s good news though.

My hospital has a tips sheet on getting ready for your appointment, I thought I’d share the link with you.

https://buckup-cuh-production.s3.amazonaws.com/documents/PIN4046_CPPG_Tipsheet_Telephone_Video_Appointments.pdf

I used to do telephone interviews and face to face at work, and my training covered non verbal communication, putting people at ease and signposting where you were heading with a discussion. Not all Drs I’ve spoken to are equal in their communication skills. Some speed along, they have background noise of them typing or someone opening a door while they talk to you, or simply a bad muffled connection.. I therefore was interested in their tip sheet which reminds you to tell them if the connection is bad, to tell them if you are on speaker phone and who’s with you among other things and mentions being well prepared with the info the dr will need on a sheet of paper and all your questions. They don’t usually put the phone down until you are ready to do that so you should be able to ask anything on the phone that you would have done at the hospital. They just can’t see you and how ill looking or active you might be but they will have a clue from your manner on the phone and answers to questions. 

I know some/lots of the members of the incurable cancer group really prefer to see someone in person but I don’t mind not having the journey and making better use of the travel time but have to be prepared for the appointment hours ahead of it, and keep a written record of what I plan to say and ask, and what I need to do next.

I hope you came to the right decision for both of you and can be rest assured it will work for both of you or that you can change it if your view has changed.

Thank you, really appreciate your advice.

Hi Gail,

Thank you for your response. Yes we can both make clinic, however a change has been made and the oncology nurse has said she will call us to set up meeting with consultant on Friday. It’s tough and getting much tougher, my wife has been on Google researching and is convinced she has stomach cancer a she is exhibiting at least 8 of the 10 symptoms she has read.

As a result she sat me down to explain her thoughts and feelings…. if it is stomach cancer and the prognosis is treatment with limited chance of success she will decline treatment as she does not want to go through the treatment only to die at the end. She feels she is simply not strong enough to fight if there is little chance of survival and she does not wish to become a shadow of her former self. Of course I fully understand her feelings and why, but I must be honest and say it is killing me inside. We met just 5 years ago later in life, we married last July and now I may lose her and we never manage to enjoy the retirement years we were so looking forward to. Obviously the lack of sleep and constant  thoughts for us both are just so overwhelming, I know I have to be strong for her and I have never prayed so hard in my life. I find it increasingly difficult to feel I would ever be able to live without her.

apologies for the rambling, I have never felt so helpless, I would give anything to protect her from any suffering.

Paul

Hi Tillys Dad.

I'm sorry to hear that you and your wife are facing the possibility of her having Cancer.  It's never easy waiting for results of tests.  When I was diagnosed with Breast Cancer I was advised not to look at the internet to see what the likely outcome of my diagnosis could be. It's often out of date. Any cancer is treatable if caught in time and there will be plenty of support from your wife's medical team if the need arises. 

I have to say the care and support I got from my medical team despite Covid was second to none.

Best of luck to you and your wife and I'll keep my fingers crossed that the news won't be bad.

Best wishes

Daisy

Thanks Daisy, I hope and pray you are right and whatever we are told they can treat it 

Hi Tillys Dad, I read your reply with sadness, and hope that tomorrow brings better news for you. I don’t think I can understand how your wife feels currently, but know that when I am near the end acceptance of my life ending will be more pleasant than fighting against the inevitable, and I hope to live all days well. I make decisions by looking at the very good and the very bad and then try to find a point of realism. There is no realism point for your wife yet so I hope she is still open to thoughts of treatment.

I haven’t had the same cancer so don’t know her possible journey. I know my first treatment after my incurable diagnosis was to hold things back for on average 9 months and band on 9 months my scan showed it was progressing again, but a 2nd treatment new to the NHS became available and I’m still here living well. My cousin had a cancer diagnosis and bravely and serenely passed within 3 months so we are all different. I hope that more loving conversations have happened in your household and will continue to happen and that tomorrow goes as well as it can do. Please let us know.