Struggling to accept diagnosis

Hi Ripples22,

I don’t have the same diagnosis as you however, I am also a single mum, again, not to 5 but 1 is enough! 

You will keep strong because you’ve got little ones that need you. It won’t be easy but that’s where the support network comes in. 

Until you get your plan, you will continue to feel ‘consumed’ - most people do. 

Believe and trust the professionals.
They are dealing with these diagnoses day in, day out.

Take one day at a time. 
Listen to facts and not Dr Google! 

Look after yourself and hope you get other advice from others xx

Thank you for replying The thing that I am struggling to get my head around with my diagnosis is that it's a 'watch and wait' cancer, so no treatment plan yet. Just follow up consultations every 12 weeks, then hopefully 6 monthly phone calls. Which, my god I am grateful for, because I know a different diagnosis could have been straight in to full blown treatment. It's the waiting and doing nothing that is difficult to get my head around xx

And also, much love and respect for you. Parenting 1, or 5 children is equally as difficult xx

Okay - I understand. 

Watch and wait seems nuts - but trust the professionals! It’s the best advice I can give. 

They are monitoring you every 12 weeks which if anything changed or gets worse, you can always call in the meantime. 
You are there in the system (sounds rubbish this but I think you’ll get what I mean) they will move if needed. 

Don’t let this consume you. If they were concerned they would treat you. 

Hopefully there are others who are also going through this and can offer you some support and advice!

Good luck with everything in the future xx

Hi Ripples22 and a warm welcome to this corner of the Community although I am sorry to see you joining us. I did see your post last night but was rather tired and most likely I would not have given you a coherent reply...... the joys of being 5 weeks post covid, then a chest infection and now a cold..... but I am getting there.

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

I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available...... but many people just don't know about Lymphoma and this may well be down to the fact that we don't normally say Follicular Non Hodgkin's Lymphoma Cancer.

It's more confusing when you have to try and explain that you have a blood cancer but your are not being treated...... I have hear the words "so you cant have a real cancer then".....

Did you know that there are over 60 types and sub-types of Lymphoma and these are generally divided into 2 groups..... High-grade non-Hodgkin lymphoma being a very fast growing Lymphoma but often treated to cure then there is the group called Low-grade non-Hodgkin lymphoma which is slow growing and at this point in time are seen as incurable but very treatable........ very confusing I hear you say.

Your Follicular Lymphoma is a low-grade so therefore incurable........ this is the same as my first Lymphoma diagnosed over 25 years ago.

I was basically on Active Monitoring (Watch and Wait) for about 13 years before i needed any full on treatment but as I said I was 43 when I was diagnosed our daughters were 14 and 18…… But I continued to work for 12 years in a demanding teaching job and yes had various treatments over the first 16 years including treatments for my second more aggressive type of PTCL-NOS that was stage 4. But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 68 last Nov being 8.5 years since my last treatment and we continue to look forward to what else life has in store first us to enjoy.

I actually don't like the term Watch and Wait as it develops a negative mindset........ just waiting around for something to happen...... I prefer Active Monitoring..... this is more positive and this allows your brain to look forward.

Your FL is the most common type of Low-Grade and this brings the security of plenty of treatment options if and when required....... I say if, as over the years I have talked with many people who have went years before treatment is required......why?

Well how blood cancers like FL develop there is a threshold point where treatment would be most effective and long lasting..... treat to early then you find that you would relapse quicker reducing time between treatments.

When I was first diagnosed all those years ago, before Dr Google my great CNS said that living with a Low-Grade NHL was like being diagnosed with a chronic health condition........ she used Type 2 diabetes as an example..... it's incurable..... it's treatable....... and you just have to look after yourself and get on with life as best as you can......

It's a about defining how you life and not letting your Lymphoma define you........

Ripples22 said:

I am still finding it so hard to process and accept, partly because I feel absolutely fine.

This is a very important statement when it comes to living with a Low-Grade NHL...... when you are fine.....rock it out.

When are you back to see your Consultant?

Where are you being treated at?

Happy to chat more and answer questions ((hugs))

If you could pick a type of Cancer to have.(not that you would want to)

This is one of them.

There is a good chance you will die of old age :p

haha I really like your attitude