Hi, I recently got sent to Guys hospital to get more information on my B cell non Hodgkin’s lymphoma, the doctor there took a second biopsy saying he didn’t think it was cancer, this obviously got my hopes up, it came back as definitely B Cell Non Hodgkin’s lymphoma which hit me hard, for a second time, in his letter he stated he hadn’t even looked at my PET Scan before his ‘hunch’ or waited until the second biopsy results to tell me he didn’t think it was cancer. This has caused me a lot of stress. Has anyone else experienced something like this?
So sorry you have had this experience of having your hopes raised only to have them dashed again. As you said it’s like being given the bad news twice . As a health professional myself I find it disappointing that this happened to you
I’m really trying not to be bitter about it but mood is low and I feel like the wind has been knocked out of me
Hi @Adman I am not surprised that you feel like the wind has been knocked out of your sails.
Give yourself time to come to terms with your diagnosis, for me it took a long while.
Be ever so kind to yourself
I can well imagine. Have you considered getting in touch with PALS. Patient Advice and liaison service ? There will be one who are linked to the hospital , you can look up their NHS page online. They are there to support and advise patients who have concerns about their care. Just a suggestion if you feel you need a bit of help
Thank you for posting, it is understandable you feel so stressed after your diagnosis and the letter you received. May I ask whether you have a Clinical Nurse Specialist that you can call to talk this through? This may allow some conversation and understanding to be gained. I would also suggest talking to your Consultant about the letter so that they can explain the wording and hopefully reassure you.
If you do want to talk this through please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Non-Hodgkin lymphoma (NHL) is a difficult disease to diagnose it took three opinions by several very experienced doctors before I was diagnosed by a haematologist and I could begin treatment. Some types of Non-Hodgkin lymphoma (NHL) can be confused with one another or can look like other diseases all together. The appropriate treatment depends on having the correct diagnosis so it can take a long time to get the diagnosis.
First time round it was 4 months from my first biopsy and I am currently experiencing a relapse, initially I was told it was nothing to worry about. That was in June since then though I’ve had more scans and X-rays than hot dinners and two surgeries and next week I will find out what chemo I am to have.
Give yourself some time it’s a lot to deal with any diagnosis especially when you think you are in the clear. But you can do this. We are always stronger than we think .
Just wanted to check in with you. Been thinking of you and wondering how you are doing?
Hi Jules, tbh not great I’ve had a number of chest infections which have knocked me for six but I’m back at work and just trying to get through each day as it comes. I’ve started therapy which is helping also. Just can’t help but feel this is all a sick joke.
Oh @Adman I really found counselling helped me, but it did not happen quickly, it was a process.
I really feel for you with the chest infections, I have had a couple lately and they really do knock you for six don’t they.
Take it steady now you are back at work and don’t forget that with hidden disabilities you have to say how you are feeling and if you need something.
Be kind to yourself and please do keep posting
It does rather feel like that doesn’t it . We are always here for you whenever you want to get anything off your chest. Some days I think I am doing ok and I have got my head around this lymphoma business other days I could cry for England! So remember anytime you need an ear the forum is here.
If you are anything like me it’s good to hear you are back at work. I had some surgery in September well two separate surgeries I could easily have been off for 6 months I just found it easier to go straight back to work otherwise I never would have wanted to.