Feelings

Hi again Kimmie17, sorry to hear you are struggling and it is natural to be concerned.

The site can be random at times 

Living with a blood cancer does get better as times goes on as you develop an understand what your body is saying and how to interpret it. 

I have been on this read for 20 years with my type of NHL and your consultant is correct you need to try and live life as best as you can under the restrictions we have and just keep an eye out for significant changes and then call your team - they will listen. But do you want to go to hospital for blood tests at the moment?...... I think your consultant is actually doing you a favour.

You have joined our very supportive Follicular lymphoma Group. Posting in this group will open up your concerns to people who know exactly what you are going through at the moment.

Follow the link I've created then hit ‘start a discussion’ and you are ready to go.

You could then copy and paste the information from this first post into your new discussion or you can also join in with existing ‘discussions’ by clicking on 'reply’

I will keep an eye open for you.

Thanks for the reply, I don’t want to go to the hospital, I just worry if a blood test isn’t done the picture isn’t whole. I’m ok,just having a bad day!

If your team actually believed that there was a risk they would insist you come in for bloods - they have a good understanding as to how FL can develop and can balance the actual need for you to come in against the greater danger of developing the virus.

Are you following the 12 week guidance for blood cancer patients?

Did you receive the ‘at risk’ letter from the NHS?

The whole lockdown is a mind game and you do need to not overthink this but not that simple when we all have more time on our hands.

The FL group is very active and there is no better place to talk with others on the FL journey than in that group ((hugs)) from a safe distance.

Hi again, I have received a NHS letter and am following lockdown procedures. It’s not that I’m overthinking, I’ve kept really busy since my last hospital appointment in Feb and haven’t dwelled, its more I’ve woken up this morning feeling like I want to smash plates because the rare times I want to talk, my family don’t. Simply that, I feel low today, it will improve, I was only reaching out for understanding

Hi Kimmie 17

This is the place to explain how you are feeling! Unfortunately unless family and friends have had a cancer diagnosis themselves they don’t understand the mental turmoil. My husband, although understanding and supportive couldn’t understand my fears. I have now been on watch and wait for two years and it’s starting to get easier although every new pain sets me off again!! Initially I was paralysed with fear and the support I received from here was fantastic. Such wise advice from Mike and John and support from complete strangers who I know look upon as friends! They understand as they have been in the same position!

Thank you!

Hi again Kimmie17, now I have had some breakfast and Coffee I was looking back your posts and I was convinced that your post was in the New to Community the part of the site...... so my references to you posting in the FL group are rubbish - sorry for that.

Good to see Jane coming along to help out - high Jane

So coming onto the Community is much more supportive than smashing plates and cheaper as well.

It is hard to talk about something that others like family and friends don’t understand much about and I sometimes think that it’s their way of surviving this with you although we were very open about every aspect of my journey.

Have a good day and keep away from your good dishes ((hugs)) to everyone.

Jane

The blood test is hardly ever used to make a treatment decision.

I take it you are on watch and wait?

Your pain might be caused by something else and not the Lymphoma.

Thanks for that, I am now on watch and wait after 4 rituximab treatments.

Thank you