Today I was diagnosed... I'm freaking out

Hi Tom ClaretTom and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Hodgkin's Lymphoma (HL) but I was diagnosed way back in 1999 with a rare, incurable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I, like many in these groups understand the challenges of this journey very well.

Being diagnosed with cancer at any age is indeed rubbish….. but you will come to realise that HL is actually very treatable with great results…… yes the treatments tend to be full on but all do-able.

This part of the journey is very challenging as you have to go through all the tests and wait for all the results to be put together and a plan put in place. For some it can take some time to get to a point of diagnosis then treatment but you are close to getting there……. as I had a rare type of Lymphoma it took a good year, 2 CT scans and 6 biopsies 

One very important thing to ‘get’ now is you will be given a Stage number….. in solid tumour cancers like Lung, Kidney, Liver cancers the higher the stage the poorer the prognosis…… in Lymphomas this is just not the case as the stage is just used to identify where your Lymphoma is presenting, what treatment you need and for how long…… I was stage 4 back in late 2013 and I am still here going strong.

You may find this link helpful as you start to interact with your medical professionals Questions to ask your medical team about Lymphoma

For good reliable information do use the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, practical information…..

We are always around to help out and to answer your questions as best as we can 

Hello Tom- Pete here at the other end of the age profile- I was diagnosed after a load of tests with Stage 4 HL in 2019 (aged 74) and am still here!

I echo what Thehighlander says and emphasise use your medical team  - they are on your side. In particular the Specialist Nurses - called different names depending where you are- as they liaise between you, the medical team and ouitside resources. What you might think that they will think is trivial isn't. Ask and keep asking. They will help to put whatever regime/feeling/circumstances into context. They see and have seen people like you (and me) for years. Use'em. Any support groups where you live? Make contact- you will be amongst friends. They will support you as you will support them - you may feel it but you aren't unique. There is a saying "A friend in need is a bloody nuisance". you may not want tro share with your family/friends (see next paragraph) but in a cancer group - there is one thing in common - you've guessed it!

I'm not going to say that the course of treatment is a piece of cake- it maybe but not for everyone. The treatment(s) may, against your will, sign you up for the BBC - the Baldy Buggers Club as I called it. The money I saved on haircuts and razors. Your family and friends will still love you. And, I'm sure, will want to talk to you and want you to talk and share, with them. My lot were, and still are, with me every step of the way.

And yes, sometimes in the early hours of the morning, in bed, I wonder what will happen to me - comes on me out of the blue- it is natural to feel "bugger why me?"

So best of luck with the tests and any susequent treatment.

Pete

Thanks Thehighlander, this has been helpful! I know it's still very early days in my journey for me and of course you don't really start to think about everything until hours after you've found out when you get home. So I was in a bit of a state, not really knowing who I can talk to or ask. So I was glad I found this community page and I was so thankful when I saw you had replied! At this point, I'm not really sure what else to expect or what to say to the med team so the link you left has been bookmarked to my phone for me to take a look at! Thanks again

Thanks for letting me know my reply could be of use to you. Don't hesitate to ask or just sound off - you ain't alone. Enjoy the sunshine

Pete