Hi, newly diagnosed

Good(?) Morning Davesmum, sorry to hear of your situation. I am still in bed, just got a cup of tea (had to get out of bed for that and a wee). I want to do justice to your message so in a bit I will give a properly considered reply. And yes humour does help - on my headstone, I want engraved just two words "Now what?". My late lovely wife wanted for me "Beneath this sod lies another".

Pete (+ a hug - more anon) X

Hi Davesmum  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 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.

Having a light humours approach to this does help abd giving stuff babes us but that unusual.

I totally appreciate the scary speed that a growth area can grow (you can see my story in the link at the bottom) but once treatment starts it tends work very effectively and normal rather quickly.,

In the early days of diagnosis it’s important to get clear information so can I suggest you use Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….

When it comes to blood cancers like HL Staging is looked at rather differently compared to sold tumour cancers where a stage 4 diagnosis was a poor prognosis.

In Lymphomas staging is used to identify where your cancer is presenting, what is the best treatment and for how long…. as I said I was stage 4a in late 2013 and this made no real difference to the outcomes.

Understanding what is going to happen is very important so this link Questions to ask your medical team about Lymphoma will help you set out your top questions for your next appointment.

It may look like an insurmountable mountain at the moment but although it may be hard work it is all do/able with good results.

The group is always around to help more or just to chat

Hello again Davesmum - so now a considered reply. I will not repeat what Thehighlander has written to you but to say there are many words of wisdom contained therein. I don't know where you live (I live in Kent) but there maybe a Maggies or other cancer specific drop in centre near you - most welcoming and supporting where ever you are on the treatment road. Lymphoma Action do run monthly Zoom support groups- I am on one and is most supportive.

I'm 77 and have been diagnosed and treated since September 2019 for HL which included being a member of the BBC (Baldy Buggers Club - but as my dad used to say - "You can't marr perfection").

Because my lovely wife died of a brain tumour in 2009 - after 17 years of treatment - and during treatment she worked even having lost most of her sight - as a family, she taught us to panic when we had to and not before. It didn't mean we all weren't anxious - and family still are for me - but we share and hug (bloody Covid slowed this down).

The medics are on your side but until you get a diagnosis - after scans etc - the wait is a bugger. It took 18 months (and a lump!) to get my diagnosis. And you just don't know what faces you but hopefully the wait will be short. If at all possible, whenever there is a consultation, never go alone and prepare.

You should be given contact details for Specialist Nurses (often Macmillan Nurses) - these are a major scource of information and support. They liaise between you and the consultant and have time to spend with you if needed. Use 'em - lovely people.

So - may your lump and diagnosis be sorted soon - hugs are important and you are not defined by your cancer - you are you..

Pete - and please have some more (long distance) hugs. X

Hi again Davesmum just picking up on the back of Pete's great reply I thought I would put up a few links.

As Pete has highlighted the UK is blessed to have a good number of Maggie's Centres, the support at these centres is amazing and if for all the family. Most centres do run monthly Heamatology Support Groups, our one in Inverness is still online at the moment.

Lymphoma Action have a large selection of great Support Options and the Online Support Groups are indeed very supportive..... I have the privilege of facilitating one of the LAs Scottish Groups.

We are here to help you navigate this journey with you.

hii, i am 17 with hodgkin’s lymphoma and currently just halfway through treatment. it’s rough, can’t sugar coat it. but i use humor to help get through it all, and i really hope you’re coping well with everything. i felt so lost when i was first diagnosed but after a few months i’ve started too see the light at the end of the tunnel :) sending you all the best x