first oncology appointment tomorrow

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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?

  • Hi Welcome to the site and incurables.

    You will get a lot of support here, and every one is in the same boat, one way or another.

    Great bunch of people. and all here to help each other..

    How does one cope, we just do, i felt like i ws reading my story as such.

    For me, i nee to be in a bit of control, and always need to know, what the next step may be.

    I have never ever asked for a time line, if there is one, i could not live, with that knowledge, and really they do not know,

    i am well pass my sell  by date, and am like you falling  apart, need op for cataracts since last year, and i also landed up. with three fractures in  pelvis, so i do struggle, with walking  and my eyes frustrate me., though i am a stubborn C.w and will not let it beat me, do not get me wrong  gets me down ,  at times i fill sorry for myself, though, some one always picks me up., .

    I also  live on my own, though never when i stared this journey, had a hubby, though lost him to cancer after i finished treatment.

    Some people do not have time, to put things in place, that they want to, though we can take some control of and put our house in order, as they say.,

    I hope others pop in and welcome you.xx

  • Thank you Ellie for your warm reply. I have had a lot of practice at coping with things and being independent as I have had to but this feels very different. Loss of mobility scares me. Talking to my brother about funerals and graves doesn't scare me but going through the process of what might be ahead does. And doing it on my own. I've had cataract ops etc and helped care for my parents alongside working and bringing up a family so thought I was a tough nut. Getting the news at 55 that I have incurable cancer has just floored me. 

  • Hi and welcome, you are very welcome to to this friendly group, all's we all can do is keep are morals and chins up and stay strong and Blush smile were in the same boat

    Lee

  • Hi TheaT I’m sorry you find yourself joining this group, but glad that you have. As the others have, and will, tell you we’re all connected even though our cancers may be different. You’ve had an awful lot to deal with in such a short period of time. It does take a while to properly understand what you’ve been told, and what lies ahead. Unfortunately, there is no one way that we all deal with, not just the diagnosis, but the treatment and stress that comes with time. A lot of people find it helps to discuss how they’re feeling, what they’re worried about etc. I definitely think it helps me to get things off of my mind, so that I can get on with my day to a certain extent. A lot of us like to do things that give us a bit of control, as that is one of the things that feels like it’s taken away in the process. Don’t be afraid to ask questions, both here and at your appointments. I am a big believer in making a nuisance of myself when I’m waiting for appointments, and results. Generally speaking the medical staff don’t mind. I hope you find our group both supportive and helpful.

  • I hear what you are saying, though my attudufed was, i cannot change, what i have been told, so i have to get on with  it the best  i can.

    As different things are thrown at me, its ok, come on  big girl knickers pulled up, and go forward.

    You  will adjust,    i think we all do, the mind is a terrible thing, and we need a switch to turn it of at times,.

    Its early days for you, and takes time.

  • Thank you Lee I am glad to have a friendly welcome.

    Its a huge learning curve and I appreciate the support. Its becoming clear to me that you need to be going through this to understand it. Ive only told 3 people and was exhausted managing their reactions and questions. I can't begin to imagine what it will be like when/if I start to show symptoms like losing my hair and the questions start. Any advice on speaking to folks?

  • Hi Jools

    you've nailed it by mentioning loss of control. If I don't have a choice over having cancer then I want to know my options. I do want to know everything even if its scary so thank you for suggesting asking questions. I didn't so far as I was struggling to absorb the information but a few weeks later and its time to face the options and I know I want to have all the information.

  • LOL Ellie - I often say I need to put on my Big girl Pants! Humour has been a good weapon to get me through tough times in the past. My dad used to say to me - tough times don't last but tough people do - lets hope I can be one of those. Thank you for making me laugh Grin  

  • Write all questions down, that you may want answers to, as at times our mind goes, a blank...Then when we come out, its we should have asked this, we should have asked that.

    f you one can go with you all the better, hope the appointment goes well.

  • Hi  

    Welcome to the online community and our group. You have come to the right place for support by people that understand as we are all in the same boat. I'm sorry to hear about your injury and this awful news that you have been given. 

    I was diagnosed in January 2022 and and my cancer is currently stable after treatment. If you'd like to read my profile just click on my username. My mobility was quite bad before treatment, so I can understand your fears. 

    For your appointment, make sure they know how much pain you are in. My first oncology appointment was by telephone and was mostly concerned with getting chemo set up. At the end of the call, as a - by the way, I explained how much pain I was in and was now using a stick. He referred me for radiotherapy for symptom control. I had just 5 sessions to pelvic bone mets and over time, I improved. Write a list of what is important to you, what you want to know and make sure that they know that you live alone. 

    I hope you get some answers and some hope in the form of treatment. Best regards.

    A x

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