first oncology appointment tomorrow

TheaT 8 months ago

21 replies
45 subscribers
1207 views

Hi everyone

I just joined before Christmas and boy is this a rollercoaster! After finding a lump I was fast tracked through all the tests and was told mid-December that it is incurable and has spread through my lymph nodes into my bones, lungs and liver. Those of you who have been through it will know the shock. I thought I was prepared as I suspected it was cancer and have had a friend who went through a mastectomy but it was like being punched in the gut and I wasn't prepared.

I decided not to tell my family except my big brother as we lost our dad in March and have spent this year packing up the family home and grieving. My son came home from Australia for the holidays so it was important to me to let them all have a magical Christmas.

Now its January and I have been finding it hard to sleep worrying about what is up ahead. I tore my rotator cuff in my rightshouder in November and then hurt my right leg on Boxing Day so the family were joking about me falling apart without knowing that is actually what is happening. I am terrified of losing my mobility as I live alone. It has been hard hobbling around the house and stairs are tough. I have half taken down the decorations but just can't motivate myself to do stuff as it is distressing me that I can't do things I used to and everything is taking twice as long.

How do people cope with loss of mobility and how do you prepare for what might or might not happen?

I rang my nurse and she managed to get my first appointment moved up by a fortnight as she could tell I was stressing out. I have no idea what this year will have for me. Any advice how to be prepared this time for those gut punching talks?

anndanv 8 months ago in reply to TheaT

Hi Thea, I'm glad your appointment is now behind you and you know what happens now! It was a pity you knocked on the McMillan door Before you had seen your oncologist though! Did you not think about going back to see them once you had seen the oncologist!? I wonder if you did what I suggested and write down your questions? Then you could have handed it to the Oncologist. Now is the time to write down the questions arising from your consultation, while they are still fresh in your mind! Then as Ellie has also said, give the Helpline a call. Ellie has already told you about the meds you may be going on, so that's great!

The Ribociclib that is a "Target Drug" specifically for your type of cancer and they have good results. It was a "Target Drug" I was put on that was a Trial Drug at the time so no one knew if it would work or not. But it is now licensed, as yours will be!

I feel sorry for the Oncologists as they have a lot of patients to see during the clinic. I would rather have one who was 'blunt' as you say, because you know they have told you everything, including the worst case scenario then you know what you are dealing with. Other patients, some here, don't want to know details and let their Team know that. Then they complain if they find out something else down the line the Oncologist hasn't mentioned and call them secretive. Ellie and I are the type of patients who want to be told "like it is" so we can get our head into gear! It seems you may be the same. There's only so much they can tell you until they get blood results back, then you start the meds. Once that happens, maybe in a few months time, they will keep Plan A or move to Plan B. My advice is be patient, take the drugs exactly as you are told and hopefully you will get a good result!

You CAN do this! Did they take blood or do you go back to get it done? Keep in touch! Take care!

Love Annette x

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