I was just diagnosed with follicular lymphoma and feel devaated
Oh @Sebbyc13 a great big welcome, I am so glad that you have found us, you are now part of our forum family and never alone on here.
As you are just diagnosed I am not surprised that you feel devastated, I was in shock for ages.
I felt in a bubble with the world going on around me and the only one in the world.
Have you got any support?
Perhaps just give yourself time to digest it all.
My trick is to write down all your fears, questions, practicalities to ask at your next appointment.
You might have a nurse contact, if you have one they are a good contact for you
I attach the information on Follicular Lymphoma from the Blood Cancer UK website
Follicular lymphoma - what is it, symptoms and treatment | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888 if you would like to talk to someone.
I was diagnosed with a different blood cancer 20 yrs ago and life is good today.
Please do look after and be very kind to yourself and keep posting, I look forward to hearing more about you.
Hi @Sebbyc13 and welcome to the forum. @Erica has given a great reply and provided you with links to some really useful information.
I was diagnosed with follicular lymphoma 7 years ago. I had a couple of operations followed by radiotherapy and have been on active monitoring ever since.
I completely understand how frightened you must feel. It can be so overwhelming.
What have the hospital as l said about your treatment plan? Have you got any support?
I hope you post again and we find out a little bit more so we can support you. Sending lots of love X
My name is Marie. Thank you for your response. I felt a sense of relief that you responded. I think what has me so angry is hearing people say “it’s going to be alright”. I was just diagnosed with a chronic cancer, that who knows if I’ll be in and out of the hospital, but that’s being OK. I feel anxious, I feel angry at the world. These are all statistics of people living 5 years, 10 years, 20 years with this disease. What about if I’m not in these statistics, what about if I’m the unlucky one?? I do have a good support system, but these are the people who are down playing everything. This is real for me, devastating. I took today a time out from speaking to anyone. Like you suggested. To get to my inner feelings. It’s not working, I feel numb, keep thinking this was a mistake.
You replied just after I posted - we crossed over!
Marie, I promise you, all of these feelings are normal. My emotions were all over the place. Angry, sad, thinking of all the things I wouldn’t be able to do or see.
Hearing those words is the most frightening thing I went through and I needed counselling (when I was ready) to help me process everything.
All you can do at the moment is go with you emotions. There is no right or wrong way to handle things.
Call the support line, offload to us and try and be honest with your family and friends. They don’t know what the right thing to say is - mine didn’t.
Sending lots of love X
Hey there @Sebbyc13, welcome to the forum, I hope it will be as helpful for you as it is for me. I’m really sorry to read about your diagnosis with follicular lymphoma. While I have a different diagnosis to you, of Polycythaemia vera (PV), I recognise much of how you describe your reaction to your difficult news. Isn’t it vile being diagnosed?!
Devastation is such an accurate way to describe our reactions to these sorts of diagnoses. For me, I felt like I was grieving my pre-cancerous self and it’s taken a lot of reflection and time alone and therapy to come to terms with my diagnosis—if I even have yet! It truly has felt like grief, as if I’d lost some living part of myself, and I too felt angry at the world and others. It’s fading a little now since last year, but I give it space to breathe and the anger isn’t so strong now.
I’ve also dealt with loved ones who really should know better about minimising the severity of my blood cancer. I mean, yes we are now suddenly more at risk of horrible risks and further complications, and I wish others took it as seriously as I do. But I also know that these blood cancers are so varied and strange to folks who don’t live with them that of course they won’t understand. It feels like a double-whammy to live with these disorders and then feel like we need to hold the hands of others, explaining it all to them. And then they downplay it?! No wonder you feel angry. I’d say anger doesn’t have to be unhealthy if it eventually guides you to feel better about what made you angry in the first place.
Like dear @Erica and @Nichola75 say, write it all down, take time to yourself to get your head around it, and seek therapy if you can. Do you have any creative pursuits that you turn to in easier times? Any way you can express it right now is a way to get it out of your head and into a place where you can begin to look objectively at how rubbish it all is? Maybe then other stages of grief can come out too. All these difficult feelings are to be expected but you don’t need to hold onto them.
Please bring your frustrations here if it helps as there are folks who really understand how you might be feeling right now. Thinking of you Marie.
Me again @selby
Great responses by all.
Yes, all feelings and thoughts are valid. I was brought up that little girls should never be angry, how wrong that was.
Yes, my thoughts and feelings were those of bereavement and loss. Sometimes they were not logical, they were oscillating, were often conflicting, but the important thing is that they were my feelings and nobody could take them away from me. I felt on a uncontrollable roller coaster.
Yes, talking therapy did help me unpick it all.
Give yourself as much time as you need, be ever so kind to yourself and please do keep posting
How are you doing @Sebbyc13?
How are you doing today?
Any cancer diagnosis is a shock and when it is all over the news as it is currently with the King ! it is completely impossible to escape- a bit like seeing the new car you have just bought having never seen one before all the time it just seems to be everywhere and impossible to escape.
I was diagnosed with FL in 2018 at 48 I had chemo and I am currently on active monitoring. I had extensive disease when I was first diagnosed but had no symptoms so it was a massive shock and I thought my life was over.
Give yourself time to get your head around it all. My doctor told me that for many with my type of lymphoma I could be just as more likely to die with lymphoma than from it I find that very reassuring.
Just take each day as it comes and don’t put yourself under pressure.
Thanks for reaching out to me. The more days that pass the more depressed I come. I stayed in bed this afternoon and cried. I was diagnosed at maimonides hospital but everyone was reluctant to accept the results because at first they couldn’t find my biopsy slides and it took over a week. No I’m not making that up. So I’ve been going to Sloan Kettering on Monday for more biopsies. I keep telling myself. They made a mistake. Inflammation or infections can mimick FL. I’m so scared. What about if they find it’s a different lymphoma. What about if I’m one of the unlucky ones that don’t make it. I heard FL can turn into another form of agressive cancer. I had no symptoms but a lump under my arm. Now I feel bone pain at night in my arms and legs. Is it from the FL. Every time I get a symptom for the rest of my life I will be petrified. I am getting comfort when What you said and I will remember it throughout my journey “dying with lymphoma instead of from it-”. So inspiring.
Thank you and sorry for rambling on.
Hi @Sebbyc13 perhaps just with it.
Your thoughts and feelings are so, so natural it is what so many of us remember, I certainly do and it does take time.
You have not got to keep explaining to others, just say you don’t know at this point. I found it exhausting.
I found keep a diary of facts, thoughts and feelings really useful.
I also found it useful to try and divert myself by reading, listening to music, Pilates, fun classes like Zumba, coffee with family or friends etc.
Actually being with people who did not know about my diagnosis, I was the same person as I was before my diagnosis.
I found the more I sat with my thoughts and feelings they seemed to escalate.
These are just my personal tricks that worked for me.
Give yourself time everything you say resonates with me.
Please do keep posting and be very kind to yourself
Like @Erica says I found a journal amazing my journal has become my book that I am now writing. Do try not to take yourself googling to what it may or may not not be . I at times got a pain in big toe and would right myself off when I had just cut my toe nails too short.
Your doctors will be able to talk to you about YOU and your circumstances we are all very different and no two people will have the same outcome even with the same diagnosis or the same experience. I choose to focus on how I am feeling and live with the I am going to die with it not of it and also another saying which is mine which is I am going to live every day as best I can because I might get run over by a bus tomorrow. None of us know what is in store and there is no point worrying about the past or the future because I will waste that time enjoying the present.
This support group is a true blessing. Everyone’s words are like ropes being sent to pull me out of this deep dark ugly cold hole. I’m going to Sloan Kettering on Monday. They will do more biopsies which will be the final answer. The care has been so fragmented at the previous hospital. I actually got out of bed today, took a shower, and went to get my nails done. I don’t feel as exhausted as I have been but when the world stops a minute in my mind all I feel is the fear of what will happen next week. I can’t do one day at a time yet. Not when I might be handed down a life sentence. I feel so sick
Thank you for understanding me. I’m crying. It’s nice to know there is someone who gets me. I have been feeling so detached but your words brought me out of my she’ll. I’m petrified. Like everyone else must say. Why is this happening to me???
Having a pity party. Can’t believe this is really happening. It has to be a mistake. My results will be negative next week. I hope the old hospital made a grave mistake. Maybe this will be all for nothing. The tears. The fear. Just a nightmare but then I wake up and start a cancer free day. That’s what I want. That’s what I hope. I can’t imagine anything else.
Slight aside from all this lovely supportive advice but I’d love to read your book when it’s ready, @Jules
Oh @Sebbyc13, I really feel for you. Seek pity, I say! These sorts of diagnoses are so mind-blowing and once-in-a-lifetime that if you weren’t feeling all sorts of difficult stuff and needing support then it would be concerning.
If I may be so bold, it sounds like you’re grieving. My diagnosis with Polycythaemia vera (PV) brought up a deep sense of loss, which I recognise in what you’ve written. I also became furiously angry about it and wrote a lot of it as notes that I dare not read again just yet. My poor husband must have been snapped at a lot in those early days. For me that passed and I’m sort of accepting it now, although I’d still love to wake up from a dream and it never happened like in that weird season of Dallas from years ago
I’d be remiss if I didn’t recommend therapy or counselling, if you can access that. It’s really the best thing for working through such feelings full of shock. Even just a few sessions can make a big difference and is great self-care, just when you need it most.
I was diagnosed mid 2023 after finding a lump in my groin. I have found the support around this type of lymphoma really good, but not from the hospital itself but more from forums like this. I also experience pain in bones and joints mostly at night and particularly in my hips, which the various doctors i see seem to dismiss. Currently i am on active monitoring and self medicating to manage any pain. I now take 1 paracetamol and 1 ibuprofen before i go to sleep and if the pain is really difficult i take a cocodamol instead of the paracetamol. Getting a good night makes such a difference. For me personally i am managing the mental side of this diagnosis well, but I really sympathise with your struggles.
Talking about it with others always helps.
I’m glad you are getting along well. Thank you for reaching out and your support. It really makes a difference and it cheered me up!
Oh @Sebbyc13 I really do feel for you, everything you say I remember feeling so, so well.
It is such a horrible, lonely, time and it is does take time, denial is also a stage I went through.
However just getting out out of bed, taking a shower, going out, getting my nails and hair done and putting some lippy on really did help me too.
I also could not do one day at a time, sometimes it was one minute or one hour, it doesn’t matter, it’s a step.
I would say dealing with shock, fear, crying, continual thoughts and feelings whizzing around is absolutely exhausting.
Perhaps not eating and drinking properly, not getting fresh air, not getting a good restful nights sleep and suitable exercise means I lose energy, the will to do anything and strength in my limbs, my brain does not work properly and I don’t function properly.
As @Mark6774 says It did help me to talk or post how it is for me.
Be ever so kind to yourself and sending you loads of virtual hugs, please do keep posting