Hello there, I have just joined

Hi Marie47 , I'm Jean (Gypsy rover) I had Non Hodgkin's lymphoma , but mines was high grade B cell , sorry I can't help you with that side , but if I was you I wouldn't Google anything I'd call the Macmillan Cancer support for leaflets , my 2 son's have Cerebral Palsy and additional support needs , I know it's different from your situation... I told them I had a sore back which they could understood , I told them because of my sore back the medicine the hospital gave me made me lose my hair , but with your family as they are adults I would explain it to them once you have more information , as I think not knowing would hurt them more , but it's your choice we all have to at some point wither it's right or wrong the path we take , but you know you're family better than anyone else , but we're here to help or chat too , good or bad days also , or your stuck in cause the weather is awful so pop on & have a chat ... I wish you well with your treatment and all your decisions , sending you hugs Xx ️

Hi Marie47and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various Lymphoma groups.

I was diagnosed in 1999 with a rare, incurable but treatable Low-Grade T-Cell NHL Stage 4a so I know this journey rather well.

Do you know the 'exact' type of low-grade B-Cell you have as there are a few.

Active monitoring (watch and wait) is often the initial route for low-grade NHLs, it means it is in your best interests to keep an eye on your lymphoma and to save treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

Low-grade NHLs need to be seen as a life long condition but are very treatable when required....... it took 14 years before I had to have full on treatments. When I was first diagnosed I was totally open with all my family - saves the hassle later on when you need to say something.

The word cancer is scary but when it comes to Lymphoma you are dealing with a cancer that is very treatable with great results.......... unlike others cancers like Breast, Lung, Kidney...... where a stage number of 4 is a very bad prognosis - in Lymphoma it's not. I was Stage 4a back in the end of 2013 and I am still hear doing great.

You may want to take some time to have a look through this LINK taken from the Lymphoma Action website as it unpacks everything about NHL.

Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Online Lymphoma Online Support Groups and indeed a very great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to help more or just to chat

Hello Jean, Thank you for responding.  I think you are amazing,  with such a  positive attitude; you found the right way to inform your sons.  The truth is that I probably don't know enough yet about what my condition is. I have a phone appointment on 22 February with the consultant.  I was also told that I will have a CT scan beforehand but have been given no appointment yet. I emailed the nurse dealing with my care but... no answer! Take care, Marie x

Hello Mike, 

Thank you so much for all your advice.  You are right and I will join a support group when I know more about my  condition.  Take care,  Marie. 

Hi Marie47 , You have an up coming appointment , your consultant will probably want to see the results of the CT scan before he sees you , I think your appointment will come in soon , As for your nurse you could try emailing her again or just phone the hospital and explain everything to them and say you'd like to speak to a nurse to help you further , as it might give you a bit more insight before your consultants appointment , you'll be fine , take one day at a time , you are a strong lady , keep the positive attitudes going , and I'm/ we're here as a group to help each other , take care , keep safe and well Xx

Hello Gypsy rover, You were right, I had emailed my nurse and I was contacted by the hospital to have a CT scan which I had last Thursday (3rd Feb.). I just have to organise a blood test with my GP practice now. I was thinking of going to France to see family in case or before my condition worsens but  the price of travel insurance for people with cancer seems to be dire! I have not been to my country for two and half years, depressing really. I am trying to keep positive as you suggests but sometimes it is difficult. Thank you for being there. Go well, xx

Hi Marie, when you see your consultant discuss going to France and ask him to mark your records as fit to travel, then its safe to trawl the different companies for quotes, hopefully your disease is stable and still not requiring treatment and that may help when it comes to prices. Sadly though it insurance does cost more once you have had a lymphoma diagnosis, plus covid seems to have pushed the cost up to.

John 

Hi Marie47 , Great that you are getting somewhere , if you are allowed to go back home ? Call the Macmillan Cancer support line , A friend told me that they can get holiday insurance for you cheaper than other places , so if it is try giving them a call , no harm in a call and you could save £££££ , you are a strong lady , we all have an off day , but we get up and shrug it off and start again a short break could be the medicine you need , like me for my mental health the consultant let me home to see my boys as I hadn't seen them in 11 weeks , just what I needed so I could go back to hospital to finish off my treatment , take care , keep safe and well Xx

Hello John, Thanks, that is helpful. I will ask my consultant to do just that. But, how will I then get that information to insurances companies? Would he put it in writing to me do you think? Marie

Hello Gypsy rover, Thank you for your advice. When you say 'call the Macmillan Cancer support line' do you mean that I could telephone them? And do you know the number? Yes, I feel that a short trip to my country would help. You say that I am a strong lady; well yesterday I was a bit thrown. I had an eye test and a small blockage was found. I am now waiting to be contacted by the eye hospital, yet another blood test, etc. I don't know what is going on but this is a bit much. The worse is still what and how am I going to  tell my children. I'll see after I talk to the consultant next Thursday. Anyway meanwhile, blow it, I am going to plan this trip to France!