Trying to keep positive

Hi Lauren89 and welcome to this corner of the Community although 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 (HL) but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin's Lymphoma (NHL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey well.

It is unfortunate that you stay so far away from her but I am sure that you will be a great support.

The word cancer sends the mind into over drive and the 'what if's' start kicking in....... but once you get to understand HL you will see that although it sounds scary, this type of cancer is very treatable with great results.

You will see that I was stage 4a when I went into treatment. it is very important to understand that in blood cancers like HL and indeed NHL a high Stage number and the word 'advanced' should not be seen in the same light as if your mum had Breast, Lung, Kidney....... cancers.

In Lymphoma the stage numbers are used as a guide to where the condition is presenting, what is the best treatment and for how long......... stage 4 should not be seen as a prognosis.

My last treatment was in Oct 2015 and I am doing great, unlike HL my type of NHL is incurable and a life long illness..... but it's not something I think about day in day out..... I am just living life to the full.

The BOLD link is taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups with two groups specifically for Family, Friends and Carers - worth checking this out as you can talk with others who are walking the same journey.

Lymphoma Action also have a Lymphoma Buddy Service where your mum can be linked up with someone who has walked the same treatment journey.

Always around to help more or just to chat

Hello Lauren89, perhaps I am  the wrong person to give tips on feelngs as I was diagnosed Stage 4 H-L in September 2019, and still having treatment (and still here!) so perhaps my children are better placed to answer you. But everbody reacts differently according to past family history. I see that Thehighlander has replied as I am (slowly) typing so will not repeat except to agree with what has been stated.

I lived hours away from family but recently moved to be closer- in fact just 7 miles from my daughter now which is lovely and being an OT tells me what to do!

So some tips, (perhaps) to help ease your worries. If your mum goes to see a professional, use (or get her) a smartphone to have a threeway conversation. Plan any questions beforehand- write them down- if easier send in a letter so it can be discussed - and you listen in.

(With your mum's permission) make youirself known to the specialist nurse(s) who work with consultants and treatment wards. They are invaluable and have tremendous knowledge as well as acting as an advocate (if needs be) on your mum's behalf. The n ext time you are together and there is a Maggie's type Cancer support unit, go along - lovely people offering all sorts- Google should find a local one hopefully. The hospital can also give you support services information.

Obviously I don't know what the PET scan will show and therefore any subsequent treatment  In my experience, the oncology services try to give the best service possible by not only, say, giving a regime of infusions but each time monitoring how your mum is responding physically and psychologically. You can't get away with "I'm OK".

And my guess you mum is worried about you - so talk, share, laugh and when you next see each other (Covid free!) have a big kis and a hug.

All the best

Pete

Hello to both of you and thank you for your reply. 
I live 2 hours away but I ALWAYS attend appointments and here for her no matter what. I am self employed, so able to take some time off. 
It’s been difficult trying to find somewhere new to live but since COVID - even PRIVATE housing is extremely difficult. 
I also forgot to mention that I have a sister too who lives close to my mum but is a teaching assistant therefore does not get as much free time as me.

I think it’s best just to be positive. 

Thanks again to both of you for your input.

Good morning Lauren89, glad to hear that our posts have been helpful. Without doubt there are far more positives then negatives with regards to treatments and success when it comes to Lymphomas.

I do encourage you to check out the Lymphoma Action Regional Lymphoma Online Support Groups with two groups specifically for Family, Friends and Carers as there is nothing better (especially during these crazy covid times) talking with other who are walking the same journey.