Burkitts lymphoma - in remission. Worried/neutropenic (still)

Hi everyone 

i am 31 with 4 children and for the last 4 months have been having the RCODOXM/RIVAC chemotherapy regime for burkitts lymphoma which was in my uterus. 

yesterday I was told my PET scan results and was shocked when she had said it’s all gone. It’s been absolute hell over since June and turned all of our lives upside down, I only had my 4th child in January and a few months later was diagnosed with the cancer. I was only able to go home twice whilst having treatment. It’s been rough. My liver is still a bit toxic from the treatment and the blood tests are iffy, they’ve reduced some of my medication I’m on at home. 

it feels weird to just be “let free” - I’m not sure how I’m coping really. I had a restless night sleep. The worry doesn’t just go away unfortunately. 
I am still neutropenic, anyone who has had NHL will know what this is like. They won’t give me any more GCSF because my bone marrow needs to start pumping out the white blood cells itself but it’s very sluggish. I don’t go back to hospital for another 5 weeks, where I will discuss getting a hysterectomy to remove my uterus completely (which I will be happy about). 
Weirdly I feel like if I’m not grateful about life now my cancer is going to come back, I’m trying to not stress about everything and just be grateful for the amazing news (which it is) but I just can’t help worry about everything after all I’ve been through. 

I guess I just wanted to put my thoughts somewhere. 

thank you for listening and I hope everyone is doing well in their journey and recovery.

  • Hello crocsandsocks

    I'm sorry to hear about all that you've been through over the past few months, particularly at a time when you should have been able to be at home with your new baby. I can only imagine how incredibly difficult the last 4 months have been for you and your family. 

    It's really positive to hear that the treatment has given you a clear PET scan result. It's great news but I can absolutely understand why you're struggling to take all this in at the moment. While this phase of your journey with cancer is over, there is still more to come and it's natural that you're feeling anxious about that. 

    It's good to hear that you already have your next appointment arranged to discuss surgery. Hopefully you won't have to wait too long for that date and you'll be able to recover at home with your children and loved ones. 

    Having a cancer diagnosis can be difficult for anyone. It sounds like it's been a real whirlwind for you and with not having been able to spend much time at home over the past few months I wonder what access you've had to some additional support. I know that many of our members would agree that being able to talk to others who have been in similar situations can be really helpful. 

    With that in mind, I wanted to give you a few links to organisations where you can access counselling support or connect with others through a buddy system or support group. 

    If there is a Maggie's in your local area then I'd suggest getting in touch with them. I know many of our community members have found it really helpful to use their services. 

    Both Lymphoma Action UK and Shine Cancer Support offer a peer or buddy support service amongst other options that may be worth looking into as well. 

    If you would like to talk things through with one of our nurses for some advice and support you're most welcome to give them a call. I know they will be happy to listen and offer any information and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    In the meantime, Crocsandsocks be kind to yourself. Try not to look too far ahead as that can increase your anxiety. I hope that you're able to continue enjoying being back home with the children and your family. Take each day as it comes and do reach out for some support. 

    The Cancer Chat community is here for you if it helps to have a safe space to put down your thoughts and feelings in writing. We'll do all we can to help and support you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator