Hodgkin's lymphoma stage 4

Hi Butterfly1 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your dad.

I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma but I was diagnosed back in 1999 with a rare, incurable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.

As to the amount of treatment offered is often down to how well the person receiving the treatment is physically and mentally as the treatments used can be very strong…… but are effective.

How old is your dad?

Has he underlying health conditions like heart problems?

Do you know the exact name of the chemo he is being given?

Hello Butterfly 1- apologies for not replying earlier but a trip to Moorfields and family visiting meant I wanted "proper" mind space to reply. Firstly I hope by now you/your dad has had a voluntary organisation- Lymphoma Action - brought to your attention. A great source of information and SUPPORT. Lovely people. Stage 4 - what a phrase- but I quote from the Lymphoma Action website,

"The lymphatic system is all over the body, so it is common for lymphoma to be advanced stage when it is diagnosed. However, there is effective treatment for both early and advanced stage lymphomas. Depending on the exact type of lymphoma, your treatment might aim to control or get rid of the lymphoma."

I've had 3 years of treatment for my Stage 4 HL - "Oh bugger" I thought (actually somewhat stronger) when first diagnosed- and that took over 18 months. And I'm still here, at 77 years of age, with treatment controling the HL.

What have I learned - in no particular order - the team treating your dad will do their damndest to eradicate/control the HL. And support the family. I obviously don't know the system where your dad lives, but there is a nationwide protocol for HL treatment and also clinical nurse specialist(s) are available (probably Macmillan) to answer/support you all. They are one of the main links between you and consultant/health team and get answers (no matter how silly you think the question is). Hopefully your dad/you has been introduced to that system + telephone numbers for a 24 hour ward service. Use 'em.

There might be a generic cancer vol org support centre (Maggies?) in your area- they welcome patients and family.

"A hug a day doesn't keep the cancer at bay" but it helps; it really helps. So plenty of hugs and laughs - yes laughs. All (and I mean ALL) my hair dropped out during chemo so I was proud to be a member of the BBC (Baldy Buggers Club) - I saved a fortune on razors and barbers. And on my headstone will be just two words "Now what?". My late lovely wife wanted "Beneath this sod lies another".

It is OK sometimes for your dad/you to feel hurt and angry and distressed and helpless - you wouldn't be human if you didn't. But I find that sharing feelings with my lovely family/friends helps me and them to put the bumpy "road" into perspective. And share the goodies as well as the bad.

So (long distance) hugs for your dad and you.

We're here for you,

Pete

Thank you so much for taking the time to send a message Pete, I really appreciate it. 

Tonight is one of those nights where I can't stop crying but around my dad I am strong and as funny as I can be. 

We are all in this together and will never give up . 

Hi Butterfly1 looking on as someone goes though treatment us very hard.

ayou may want to consider looking at the Lymphoma Action Support Platforms where they run monthly Family, Friends and Carers Online Support Groups ((hugs))