Stage 4 Hodgkins Lymphoma

Thank you so much for your support, I’ve been very upset today , my family came for dinner and seeing everyone just set me off x

Wow that’s amazing , you’ve done so well and all because of the great treatment we get ! Thank you so much for your support, I’ve been very upset today , my family came for dinner and seeing everyone just set me off x

Hi Yolanda64 what hospital are you being treated?

Bless you. It’s a scary time for you. You need your family around you. Here if you need to chat x 

Hi Thehighlander , I’m with Hereford county hospital x

Good morning Yolanda64 I was just checking to see where the closest Maggie's Centre was and I see the nearest one is in Cheltenham….. yes it’s a good hour away from your area…… up in the Highlands of Scotland I sit with people at our Maggie’s Centre in Inverness who have to do a 4hr round trip to hospital so they find that support in the centre invaluable.

You may want to also 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.

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.

They also have a great Buddy Service where people can be linked up with someone who has walked the same 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.

Good morning Yolanda64  (I would like to get my hands on who invented cancer). Welcome to cold and drab Kent. I am not going to repeat the excellent information/advice TheHighlander has given you but to share some of what I have learnt as I approach 80. Having been told I was in remission last February following 4 years of treatment (in Oxford and Kent) for Stage 4 HL. Remember Stage 4 HL is not the same as many other Stage 4 cancers - but you know that because you, by now, would have been on the Lymphoma Action website.

So what to share? Only panic when you have to - my lovely wife died in 2009 of a brain tumour having been diagnosed/treated in 1992; lost 90% of her sight but worked until she retired at 65, in 2003. Sadly she taught me the Corporal Jones "Don't panic!!"

Get as many laughs and hugs as you can.

You are not alone. Share with family and friends - not every twist and turn. There is nothing wrong with being worried. (Real worry (as a teenager) is finding a spot on your nose.)

I have been treated in Oxford and Ashford (Kent) and all the staff are lovely and strive to get you better. And are open and honest with you. One of the unsung heroes are Clinical Nurse Specialists. They act as an intermediary between you and the clinicians - many years of experience. To them you are one of dozens they have seen. If you contact them, even before all the treatment starts, I'm sure they will share/support and help put in context what the regime could entail and also what support groups you and your family could usefully use - don't forget the family. Knowledge is power and might help allay your and your family's fears for the future.

Don't forget the laughs and hugs - that is an order. These are most important - you are a human being and we thrive on hugs and laughs.

That's enough from me - got a flat battery to sort out (priorities).

Happy to natter (and have a long distance hug from me), Pete

Thankyou Thehighlander for you information! Yes I’ve heard about Maggies , my daughter lives in Cheltenham and we’ve said we will go together, at the moment my head is spinning, thinking I won’t get better and won’t see my grandchildren grow up , it’s consuming me and I’m thinking worse case scenario’s all the time , sorry to be so over dramatic x

Thank you all for your support , just said to Thehighlander that I’m so scared and overwhelmed and over thinking things , worse possible scenarios all the time , just want to see my grandchildren grow up and be here for my family xx

Have yet another long distance hug - you can't beat 'em except in person

Pete X