New and a bit lost

Hi. First of all, please know that you're not alone. I am in a similar situation with my 80 year old Dad. With me, I live about 400 miles away from him and my other siblings. Like you, I struggle with anxiety and find that I've been struggling since his diagnosis. 

All we can really do is be there for our loved ones as much as we can, whilst also taking care of our own state of mind. I know that's not much, but I hope it helps to know that you're not alone in feeling lost. 

Hi M2K I don’t normally post in this group but noticed your post.

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

I have lived with and been treated for 2 rare types of Non Hodgkin’s Lymphoma for the past 25 years.

Lymphoma is a rather unusual type of cancer and completely different from solid tumour cancers….. I was stage 4 in late 2013 but I am now 9+ years out from my last treatment and still living a great life.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) with lots of treatments available.…… every 26mins someone in the UK is being diagnosed with one of the 60+ types of Lymphoma…… we can’t have a group fir every type of Lymphoma but once you have a clear diagnosis for your mum do look through this list…..

Cancer Specific Groups 

….. where you will find all our groups listed.

Information is key so do have a look at these 2 links

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Happy to chat more if you want ((hugs))

Thank you @81Mike and Thehighlander I really appreciate the messages. I’m really struggling to wrap my head around this news, but trying to stay positive. But I don’t know how long it takes to get from the initial confirmation from ‘it’s lymphoma’ to ‘here’s the type it is and here’s what we’re going to do about it’ and I’m finding that part really hard to deal with right now. Trying to stay supportive and let Mum take the lead with who she tells what and when she does that, but I have a million questions all borne out of love, but don’t want to add to what she’s already dealing with. 

Hi again M2K …… I can totally understand your challenges.

Distinguishing what type of Lymphoma your mum has could be complicated…. and unfortunately time consuming…… but if a biopsy has been done the normal lead time for results is anything from 2 to 6 weeks depending if the sample needs specialist testing at another test centres….. but this then has to go through the ‘system’

Has she been seen by a Heamatologist yet?

Is your mum showing any of the B symptoms?

I will say in some way of encouragement that during my main treatments between late 2913 to late 2015 (My story is rather complicated See my story)….. I was often in a 6 bed male Heamatology ward with many 80+ year olds….. some early 90s who were getting treatment for their types of Lymphomas….. and sat in the common room with many senior ladies from the female ward……. and my wife and I would often bump into some of them on various occasions years later when we were out and about ((hugs))

The haematology appointment was on Thursday. She has a bone marrow biopsy scheduled for the end of this month and a telephone appointment for blood results within the next few weeks. 

Ok so if your mum is not showing any of the B symptoms…… and there is no rush for the other tests to be completed there us a suggestion that she may have a type of slow growing Low-grade non-Hodgkin lymphoma (NHL)

If it was a type of fast growing, aggressive High-grade non-Hodgkin lymphoma they would be moving much quicker to the point that they would start treatment immediately before all the parts of the diagnosis jigsaw it put in place…… this was me back in later 2013…. I went to see the Heamatologist in the morning and was on the ward that afternoon and on chemo by late evening,

In Lymphomas when someone is diagnosed with some of slow growing Low-Grade NHLs they don’t need treatment immediately and are put on what is called Active Monitoring (Watch and Wait) 

I often talk with people who have been living with their NHLs for years and have never required treatment….  ((Hugs))