Hi, I’m not sure if I am looking in the right place for answers, or if I should even be in this group as my journey ended 15 ago; but for the last year or so I can’t shake the emotion attached to what I went through. I had stage 2b HL and was 15 weeks pregnant when I was diagnosed. I had an incredible oncology/obstetrics team and had a healthy baby girl who turned 16 2 days ago. This time of year is always so bitter sweet, because believe me I thank god everyday for my daughter, but it’s also a stark reminder of my lowest/sickest point, close to actually dying and saying goodbye to my husband and 18month old son. For some reason just lately, I’m struggling to not think about my treatment and how poorly I was. I’m already taking antidepressants and received some talking therapy 1yr after discharge. I don’t know why I’m feeling so disturbed now after all these years.
Hi KelEJ32ef01 and a warm welcome to this corner of the Community although I am sorry to hear about your journey.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma….. for some context about me. I was officially diagnosed way back in 1999 at 44…… with a rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma)
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather aggressive and complicated (See my story) but I am now 10 years out from my last treatment, I turn 70 next week and I doing great.
For me it was all about acceptance….. yes it was a situation I was unwillingly put into….. but the journey did actually made me and my family review life and everything that we once thought important.
So some things from our old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.
Back in 1999 my condition progressed quickly so the then median survival was set at 3-5 years……this was.based on the information I was given and my Consultants experience….. but here I am
Our 2 daughters were 14 and 18 back in 1999……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters.
You will see from my story I had some very challenging years……. but I am alive. As a family we refused the journey to define us…… we define how we live.
’Talking’ can help…… so if you are in the UK do check out for a local Maggie's Centre as these folks are amazing.
Do check out Lymphoma Action…….. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… you may want to widen your support and information base by checking them out.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……
Their Closed FB group alone has over 6000 members and unfortunately you would most likely bump into me on there also ;)
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
They also have a great Buddy Service where you and/or you can be linked up with someone who has walked the same support/treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
Always around to chat.
