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Diagnosis confirmed, chemo underway

HopeForTheBest
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Hi everyone, wishing you a Happy New Year, despite the situation we're all facing ️ 

I posted for the first time late last year in the thread for people suspecting cancer. Sadly my worst fears were confirmed & GPs & A&E had repeatedly missed diagnosis - after years of iron anaemia & growing symptoms (persistent cough, drenching night sweats etc) until bowel cancer spread to my nodes and my liver - stage 4  

I have young twin boys - just 4 years old and full of life, noise and energy - and an insecure job situation but am also blessed with my husband, friends and family who are trying their best to help, though often practically difficult. 

It's hard to go through the trauma of months waiting for a slow car crash diagnosis, followed by confirmation but not information - with no mental health support until diagnosis and then 28 weeks wait - so I was left in a nightmare limbo where I thought stage 4 meant palliative and I burst into tears at the idea of last Christmas' and not living to see my boys grow up. 

I've since transferred from a frankly awful experience at one London Trust to a London Cancer Centre and feel blessed and grateful to be under their care, especially as a Centre of Excellence in colorectal cancer. A silver lining in the gloom! Work have also extended my sick leave for now, so I have income until my birthday in March at least, which is a huge relief. Trying not to think about after but hard not to.

I had my first session of chemo (FolFox) just before Christmas, thanks to cancellations from all the strikes & snow. That went pretty well but I'm feeling super sick with round 2 . Nausea is a real pain. Already taking meds, ginger tea, travel sickness bands on. Praying it doesn't get worse in future! 

On balance, I feel I'm coping pretty well most days, all things considered. Trying to stay practical & take one step at a time. Adapting to wearing gloves to keep the electric shock type pins & needles in hands at bay from the cold & digging my thick, warm Christmas socks! 
 

How are you doing? I hope you are doing ok - at least some of the time - and being kind to yourself & getting some love, support & help ️ 

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    Just wanted to say wishing you all the best for 2023.

    Xxx

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    Hi HopeForTheBest,

    I am so sorry to hear your story and to learn about the bad experience you had with your first Care Team. It is really soul-destroying when this happens. I too was misdiagnosed following mammogram and it wasn't until I found a lump myself, that my cancer was picked up.

    I lost my Mum to breast cancer and like you, had a frghtening experience at my first hospital. I moved to a different hospital and my treatment was like chalk and cheese. I suddenly received all the support, help and advice, that I needed to get through. That was 13 years ago and I did have a second bout the following year, but that was so much easier to cope with, when I had the right Care Team.

    Do you know how many sessions of chemo you are due to have? Having chemo is a challenge and I am sorry to hear that you have been so nauseous with it. Have you mentioned this to the oncology team? Here's hoping that you can soon put all of this treatment behind you and enjoy some time with your twins. I was older than you when first diagnosed, but am in awe of anyone who can cope with two 4 year olds, when undergoing treatment. I am delighted to hear that you have a good support network, between your husband, family and friends.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

     

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    Hello HFTB,

                          your post caught my eye insomuch that l am a stage4 bowel cancer with spread to the liver 9 year survivor.

    Your post reads as upbeat which is good to see because you have enough challenges ahead of you without yourself becoming one of them. A great help to see you have confidence in your medical team, for my part l looked upon mine as the experts,myself just being the idiot who turned up to let them do the worry and work.

    The positive of having your children to provide focus and determination can never be underestimated,its the driver that will keep you moving forward, the skill will be balancing it with the need to rest. l found that a compromise of how your day revolves/evolves is helpful,as is not stressing about a fixed routine.In my case it was a herd of cows and a flock of sheep demanding my attention.You get there,just be prepared to travel by a different route.

    Through the difficult times where it seemed progress went into hiding l held on to the fact that as long as l could place one foot in front of the other l was still moving forward even if it would take a while for the scenary to change.

    l hope your journey leads to the destination you desire,

                                                                                               David

  • Offline in reply to gruntifen

    Hi David,

    Thanks so much for your post and taking the time to share your story. Glad to hear you are a 9 year survivor! 
     

    All the best

    Emily 

  • Offline in reply to Jolamine

    Hi Jolamine,

    Thank you so much for your message and sharing your story. I'm sorry to hear about your mum and your past poor experiences and glad you too received better care elsewhere. 
     

    The specialist nurses at my Trust are so lovely and supportive, so I'm grateful to have their support. Yes, I do keep in good contact and seek advice or ask for things as I need. Sometimes the urgent takes over but we get there. I'm due to have 3 months of chemo at the moment (8 sessions maybe? Not sure) but all to be reviewed based on how this all progresses.

    Wishing you all the best & happy new year  

  • Offline in reply to HopeForTheBest

     

    Hi HopeForTheBest,

    Having such awful treatment to start with, has made me really appreciate the team that I have behind me now. Have you got some anti-nausea tablets? It might be worth discussing this with your team and changing to something more effective.

    Wishing you a Happy New Year too.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    I do, thank you  

    Take care,

    Emily 

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