Just been diagnosed with Hodgkin Lymphoma

Hi Rachel2364 and a warm welcome to this corner of the Community although I am sorry to hear about your HL diagnosis.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but for some context I was officially diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma……. eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Hospital stays are one of the unfortunate parts of the treatment journey. Over my main treatment between late 2013 to late 2015 I had a total of 92 nights in hospital …….. with a further 38 nights with various infections including Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia and Neutropenic Sepsis twice and A Fib.

But this will all pass…… my main treatment started more or less 12 years ago to the day…… but I am getting in with life.

Keep reminding yourself that this period of time is temporary and it will pass.

Push through the storm and try and find the quiet eye of the storm ((hugs))

Thank you so much for your reply. I feel like I’m going crazy. The unknown where I don’t know how many nights I’ll be in hospital. This is my 3rd night.

We are all a passenger in this journey and we have to trust our clinical team……. They know what is needed.

I had 2. Allograft (donor) Stem Cell Transplants with me in the unit 28 nights for the first SCT and 30 night for the second……. But as my treatment was being done in Glasgow…. We live in Inverness so had to move down to Glasgow for the period….. we actually were down in Glasgow for 7+ weeks altogether 3 weeks in a hotel when I was having my radiotherapy……. We do what needs to be done.

Hello Rachael Pete here - Merry (bloody) Christmas!!??

I was diagnosed with LH in September 2019 and last treatment (aged 78) in February 2024 and am now symptom free. I was never hospitalised for treatment but was twice due to an infection (immune system compromised) then 10 days for constipation (began to look forward to enemas!). 

So what can I add to what the Scottish one has stated? Nothing really except to emphasise please trust and TALK to the medical team. They are on your side - tell them how you are feeling/coping - they aren't mind readers and may modify your treatment accordingly. The clinical nurse specialist(s) are a force for good. They can act as a liaison between you and the consultant/team. I love 'em.

Obviously I don't know you and your family/friends and how they are reacting to you and your situation. But please share - they are one of your main supports. And for gawd sake - where possible- have laughs and hugs. You are not on your own even though you might feel it. Two new supports have arrive due to you seeking advice -  me (Pete) and Mike (The Highlander). Use us. Please.

Is there a Maggies near you? Drop in centre for people diagnosed with cancer- lovely supportive knowledgeable people. I used the Oxford one. Unfortunately they are not everywhere.  Now living in Kent (no Maggies), I miss the Oxford one.

Lymphoma Action Charity has a wealth of information plus support groups and individual support buddies. Their website is brilliant - if you haven't already, explore it.

Finally - please have some (long distance) hugs - all the best - Pete X