Marginal zone none Hodgkin's lymphoma of salivary gland.

Hi LMCC

I really feel your pain. I waited 6 weeks over the summer holidays between biopsy diagnosis and any contact with the Haematology department. It was awful. I eventually chased them in any way I could in desperation. However, once I was finally seen, things moved quickly and I felt I was in good hands. I emailed the haematology department as wasn’t sure who to ring. They gave me contact details of my allocated lymphoma specialist nurse. It may be worth trying to get details of your nurse and explain your anxieties. Just knowing that you are in the system makes you feel better, it’s the endless not knowing that is excruciating.

Thank you so much for sending me this.  I have read it many times now and it was just what i needed to understand where I am in my cancer journey.  I was feeling lost but i now have begun to find a focus and beginning to feel positive about living my new life.  i am sure there will be wobbles along the way.  

One question that is on my mind is that although I have had a complete response to radiotherapy on the PET scan my LDH (lactate dehydrogenase) is still raised. Raised at diagnosis and still raised. My consultant told me they don't treat that and it not concerned, it will just be monitored. My feeling is it means the lymphoma is still active?  I do feel well, which of course is really positive.

Dear LMCC, so sorry to hear that your scan has been postponed and you feel alone with your thoughts.  It really is a tough time waiting for information and a plan, then explaining this to family and friends. I told close family first, then work colleagues as needed time off for scans and biopsies and used WhatsApp to keep friends informed.  Now that treatment is completed for now I have stopped telling anyone new.  ie friends I haven't seen for along time etc.

Everyone is different but telling people really helped me and also my family to talk openly.  They don't always say the right thing but they do care. 

As Rosyboat said the clinical nurse specialist is a good source of support.  Make she they are informed when your scan is as my nurse added me to the weekly meeting where they discuss treatment, which prevented a delay in getting a treatment plan.

Hope all goes well for you.

Good morning , oh blood counts are a mystery and years back I stopped trying to understand them and more so try to read up on them.... my simple approach was 'if my team were happy I was delighted'.

Bloods are done to monitor ALL your body not just your Lymphoma....... Lymphoma treatments can have a knock on effect on other body functions so be reassured that your team are keeping a good eye on you.

I tend to have raised LDH as my many treatments have had a slight effect on my Kidney and Liver function but this has been the same for the past 7 years and have had no problems.

The paper is indeed great and it highlights the important stepping stones that have to be navigated in the post treatment journey. In my early days post treatment I would often read the paper when I was having a wobble. It's also a great tool to give to people to read when they cant understand why you are not 'back to normal'

As I said earlier to  it's worth using the paper as a tool to move life forward. I am a very practical person and I like a plan so I set out the papers headings in my note book and started detailing the things I had done already to move life on in each area and then started to set some achievable goals to work towards. 

When I achieved the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

The headings would be:

What steps am I taking to regain trusts in my body?

What steps am I taking to regain trust in myself?

What steps am I taking to overcome living with uncertainty?

What steps am I taking to deal with the world?

What steps am I taking to regain mastery and control of my life?

Give it a try........ start looking forward ((hugs))