Hl diagnosis

Hi Argoand a warm welcome to the Community and sorry to hear that you are on the Lymphoma rollercoaster.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but I have been on my Lymphoma journey for coming up to 26 years and although my Lymphoma types are different I do appreciate the journey rather well.

In 1999/2000 when I was 44 it took a full year and 6 biopsies to diagnose my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma……

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting.

But I turned 70 back in November and I am living a great life.

Optimism and trepidation are good descriptions….. the unknown is unsettling but once you have the plan in place the noise between your ears will calm down a lot……

HL is very treatable so it is correct to be confident in looking forward to getting a lid put on this.

Getting clear information helps a lot so these 2 links will help you navigate your appointments and get the best pathway set out for you.

Top tips for getting the best from your appointments

Questions to ask your medical team about lymphoma

There a few options of treatment for your HL but on the whole they all follow the basic same pathway.

As you get ready for treatment you may find this link helpful….

Top tips for the day of your chemotherapy

Always around to chat or answer questions. 

Greetings from a damp Kent - it took 18 months before I was diagnosed with Stage 4 HL in September 2019 and then treatment finished in February 2024 - wot fun. But I am still here and next month I will be 81 years old/young. Diagnosis and 2 years(ish) treatment in Oxford and a further 2 years(ish) treatment in Kent, 

So a few things -

Staff are on your side and they want you to live BUT you must be open with them. If you feel rough then tell 'em.

Not all treatments affect everybody in the same way - not everyone loses their hair. But if you do, think of the money you will save at the barbers/hairdressers.

Do not consult Dr, Google. Use Lymphoma Action or NHS websites. Is there a Maggie Centre (look it up) near you - great organisation.LA is a treasure trove of info and support- groups and buddy system plus webinars.

Share with family and friends - which means they will understand and help/support you.

Get plenty of larfs and hugs

So Hi to you and have a long distance hug from me

Pete X

Mike and I have been typing at the same time!

Pete (another hug)