recent diagnosis

Hi,

I understand how you may feel. I affirm you for reaching out. For asking for what you need. Being authentic and finding some support is absolutely essential for your mental health. Strangely, this diagnosis has some hidden gifts and one of them for me was asking for help. Being honest with supportive people- as this site provides and finding my close friends to tell them how I felt.

I got a diagnosis in 2020 and I felt it flipped my world upside down. And it did for a while. I had to quit my job. I had a two year old and a 3 month old. I was diagnosed with stage 3 with a bulky mass in between my lungs and my chemo wasn’t working. So I had to move across the country by a major research hospital for 8 months and was scared to death. I asked my oncologist for a medication for anxiety. This helped. It may help you too. I received more chemo regimens, which only partially worked. I received a stem cell transplant a year later even when I could not get into full remission, as that improves prognosis. After my stem cell transplant, I received radiation for a month. Just last week, my scans are still clear a year after my stem cell transplant. In 9 weeks I will finished with an immunotherapy (brentuximab vedotin) that helps keep the cancer away. My oncologist said if it doesn’t come back by this time next year, I’m cured. He said in his clinic he sees no return after two years of complete remission. I’ve been back home w the kids now for about 9 months. They are doing well. I started my new job today that I’m very excited about. 

I didn’t return to my normal life. I returned to a better life with new perspectives and a village of support bc I asked for help and was vulnerable with loved ones. This is hard, this is scary, I didn’t want to lose the life I built to get difficult treatment and at the same time the only way to live was to do just that. To go where there was treatment and trust good things are there too. 

Please feel free to reach out to me or others in this site. We are here and you are not alone as you navigate this new world. 
Holly

Hi yungharls and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our Lymphoma cancer groups.

I don’t have Hodgkin's Lymphoma but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin's lymphoma Stage 4a and although my Lymphoma ‘type’ is different I know this journey rather well.

The early days are scary as it all the unknown things you are dealing with but once you get a clear picture you will be able to put some order into all this.

It's important to understand that with staging, unlike other cancer like Breast, Lung, Kidney..... the list can go on, that when someone receives a diagnosis that is stage 4 it is not great news....... but in Lymphomas its not seen as the same prognosis, yes the higher the stage number the more involved the treatment needs to be but unlike the other cancers there is lots of positiveness as there are many lines of treatment available to get life back on track.

The BOLD link above is taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

They also run regular Regional Online Lymphoma Online Support Groups including a very supportive Young Persons Group, they also run a very good Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

We are here to help and were questions and help you you navigate this journey ((hugs))

Hi Holly Khcarro and I see it's your first post so a warm welcome to you as well.

I see you are a year out from Stem Cell Transplant (SCT)....... I am over 6 years out from my second Allo (donor) SCT in Oct 2015....with my first Allo SCT being back in June 2014.

We do actually have a dedicated Stem cell transplant support group where folks who are going into, in and post SCT support each other on this rather unique journey.

You may also find this ongoing thread Life after a SCT - A Survivor's Guide helpful as it's where some of the members have collected their post treatment stories and challenges.

Always on the site to chat more ((hugs))

Thank you for this nformation! 
Holly