Hi very new

Hi Tonyb9127 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 at 43 with a rare (Incurable) but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Although the treatments used for Lymphomas are full on they are very effective. The initial aim in treatment of HL is to cure but definitely to put your condition to sleep for a long time and when I say a long time, over the years I have talked with people diagnosed many years ago and are still cancer free well over 30 years now.

The scan will help find your Staging, but unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes. Staging in Lymphomas just identifies where the Lymphoma is presenting in the body, what is the best treatment approach and the best type of treatment for you and for how long.

So take a few deep breaths and keep positive as this is very do-able.

Any questions, how every small do ask them as we can help you out.

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

Good morning Tonyb9127 - Pete (still) here. Nearly 78 and was diagnosed in September 2019 with Hogdkins Lymphoma so for the past three and a half years been making a couple of hospitals ( in Oxford and now Kent) my regular second home. Reassurance - not sure I could give you any except - and it is a big except - the departments you are, and will be, dealing with, are all on your side and want you to survive - not only survive - and thrive. And by "you" that includes your family (and friends). And how is that done? There are obviously technical/treatments but by being human. Unlike, say a broken leg, HL treatments can last for years meaning you and the medics are on the same journey with obviously different aspects of the journey. You will get the most out of the journey by sharing with the professionals how you feel at any one time and if practicable include your wife in discussions/consultations. And don't forget the hugs!!! In fact have a long-distance one from me.

I don't know your hospital but there should be "Clinical Nurse Specialists" (oftem MacMillan) attached to your oncology/haematology department. I cannot praise them too highly - get to know them. They have time and expertise for you. They act as a "go-between" you and the consultant(s). When in doubt - give them a shout.

Lymphoma Action is a brilliant organisation for information and advice and support.

Finally, I don't want to overload you with information- I'm sure you have stacks of it.

So best of luck - plenty of hugs and larfs

Pete