Hodgkin Lymphoma stage 4

Hello Emily- you and I have a lot in common except I ain't young (78), or female so I can't be a mum but I do have HL Stage 4 and have been treated for 4 years (and still here).

I have had two types of chemo and about to finish immunotherapy. Although I felt rough at times, I am fairly healthy and mostly during the entire treatment periods, I walked (and still do) with friends and volunteered doing maintenance on heritage railways - mind you I got soaked today! I feel fit.

So what have I learnt since September 2019. There is an excellent voluntary orgsanisation, Lymphoma Action with tons of information and support groups- really worth a look. The NHS and health professionals want you to survive and thrive - my experience in two regimes (Oxford and Ashford, Kent) are that they are lovely and supportive- don't hold back - tell them how you feel. The Specialist Nurses are the interface between you and your consultant(s) and other professionals - get to know them and use them if you have any doubts.

Your family (and friends) will worry about you. If at all possible, bring somebody with you at any consultation so the information is shared and understood. And don't forget the hugs and more hugs.

Always here for a natter and all the best

Pete

Hi Emily Emilytb and a second welcome to this corner of the Community although I am always sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin's Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

I am pleased to see that Pete Tenterden has picked up on your post..... there is nothing better than hearing from someone who has walked the same walk.

As Pete has mentioned, it would be worth checking out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos, basically all things Lymphoma.

They run regular Support Platforms with groups where you will connect with mum's who have been in the exact same position...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where both patients and carers/family can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.

You may also find the following link helpful as you get ready for treatment Top Tips for the day of your Chemotherapy

We are always around to help more or just to chat.