Oncologist Appt - stage IV Bladder Cancer

Well it's been the longest 4 weeks since getting the news my mums bladder cancer has unfortunately spread despite her radical cystectomy last year and she now has some secondary spread to her lungs. 

I have been on such a rollercoaster from feeling positive and ready to fight to completely breaking down at work and feeling the lowest I've ever felt. 

My hope is that tomorrow our oncologist feels like chemo is worthwhile and that therefore mum has some "time". 

I know many of you are, or have been, in the same boat as me. I hope I return tomorrow with the most positive plan that we can possible hope for (we accept it's incurable) and that all timescales I've found in my obsessive interest searching are not correct....  On that point does anyone else find that you only seem to find "worst case scenarios" when trying to find out information? 

Anyway my thoughts are with everyone. No matter how many friends we have, it's a very lonely journey... 

Mandy 

  

  • Hi Mandy,

    I lost my Mum to secondary cancer 11 years after she was diagnosed with primary breast cancer. It had eventually spread to her liver, lungs, brain and bone and was a heartbreaking thing to watch.

    I do hope that your Mum's oncologist sees fit to give her chemo and that it slows down growth. Please keep in touch and let us know how she gets on. 

    We usually advise people not to browse the Internet for the very reason that you have discovered. When we discover the worst case scenarios and attribute them to ourselves, we scare ourselves rigid, without any cause, as we are seldom as bad.as that.

    It is always extremely distressing when a loved one is told that their cancer is incurable. I felt like this when my Mum was diagnosed, but instead of dwelling on the inevitable, we started to try and build memories and to do things that she wanted to do while she was able.

    By putting a more positive slant on things, We all coped better. That's not to say that we didn't cry buckets when we were not with her, but we tried to stay strong in.her presence.

    I am thinking of and praying for you both.

    Kind regards,

    Jolamine xx

  • Thank you so much Jolamine. Yes I feel like I need to step away from the "research". It's driving me crazy. And so many contradictory prognosises

    i just want to find some tips that may help keep mum as healthy as possible for as long as possible. 

    I will let you know how the appointment goes. I feel sick with nerves. I have A 3.5 hour round trip ahead of me just to take her to the appointment as I don't live near her. And travelling down every week is really exhausting. I wonder how long I will be able to do that and my full time job for :( 

  • Hi Mandy,

    I know exactly what you mean about the travelling. I had a flight to deal with as well. I was also working full time and travelling back and forth every weekend.. You can feel pretty frustrated by how little you can do for her, but you can be a great help by keeping her comfortable and seeing to her needs.

    For all that it is difficult to travel, It will make such a difference to your Mum to have you accompany.her to her appointments. I never realised the value of having someone accompany you to an appointment until I was diagnosed myself 7 years ago. It really does make all the difference.

    How did you get on with the oncologist today? 

    Kind regards,

    Jolamine xx

  • Today went well!

    firstly we were a little shocked as in my mums diagnosis letter she was told she had a few progressive nodules in one lung. However, our oncologist showed us the scans and said There were about 15 spots and they were in both lungs. 

    So once we proocessed that information she said is he good news is that the biggest is still only 1cm and it was about 5mm in January so we are talking about it doubling in 6 months. So even without treatment she felt it would be 9-12 months before mum should get any symptoms from these. 

    However. Because mum is currently in good health she has suggested she does start 6 cycles of chemo starting right away. With the hope we can stop it or shrink it for a little while longer than that. 

    In a way it was the best I had hoped for from this appointment and we all left feeling positive. 

    I've taken on a little project that will occupy my mind and really help my mum  - I'm redocrating and reorganising her bedroom to give her a nice environment for the days where she may want to stay in bed or have visitors. (I can't even tell you what it's currently like  she's a bit of a hoarder !!!) 

    Today can be classed as a good day! 

    thank you for taking The time to talk to me and I hope you are well?

    mandy 

     

  • Hi mandym74

    i am so glad to read that your mum is being planned for chemo , it really does give you a huge boost of positivity.

    I remember when my dad was diagnosed and all I kept thinking when we went to see the onocologist is that they had to offer him chemo, which they did and he done really well during this time, sadly we lost my dear dad last September but not after a battle. But like you I always remaine deposit every around my dad and even bout him a new leather recliner to relax after his chemo treatment! 

    I wish you all the positive news that can be given for your mum, enjoy the decoration as it really will make you both feel good

    take care 

  • Thanks so much for your message Duchie. 

    Yes have my positive head on now. I can't change what's gonna happen I can only change how I deal with it. Mum got sepsis last time she had chemo so that's a bit of a worry and we know the treatment is not without risk but at least you feel like you're giving it a fight ️

  • Hi Mandy,

    I'm glad to hear that all went as you had hoped today.

    The fact that your Mum is starting chemo sounds hopeful - at least you feel that you are doing something to try and slow down regrowth.

    I doubt that you could do anything better than to redecorate your.Mum's bedroom. Now that I myself have been blighted with 2 bouts of cancer, I know just what a difference this makes. My room was completely redesigned shortly after I was diagnosed.

     Prior to that I was too embarrassed to even bring a doctor out to see me. Now I'm actually quite proud of it. I must confess that I'm a hoarder too, so am now trying to clear things out whenever I feel up to it.

    Regards,

    Jolamine xx