Well this is a first for me! Thank you to Kate from Blood Cancer UK, with whom i had a long chat about my situation. And thank you to anyone who has taken the time to read this.
So, my story is that I was diagnosed with Follicular Low Grade Non Hogkin Lymphoma, back in October 2019. And then in December of 2020 my haematology Dept advised me that i have CLL. Wow. Didn’t expect that. I am very fortunate that both these conditions are yet to impact my physical health, and i am part of the watch and wait community. But, that said, i have struggled greatly with stress, anxiety and low moods since my CLL diagnoses. I would normally consider myself a fairly positive person, but i now feel trapped in a very dark place, waiting for something awful to occur. Up until my CLL diagnosis, i felt i was coming to terms with my NHL diagnosis. But now? I’m struggling.
As such, I’d love to hear from anyone out there who has had (or is experiencing) a similar journey, and may have some good advice about moving forward. I really don’t want these conditions to dominate my life. Any help would be very much appreciated.
Hi @Martin-R, I am glad that you have spoken to Blood Cancer UK, a good move.
Thank you for having the courage to post on our support forum.
I have CLL and I am also on watch and wait, it is also called active monitoring which perhaps is more descriptive. I was diagnosed in 2003 and I have been on watch and wait ever since. The watch and waiters are certainly a special community, it takes me time to get round it.
Personally I think that you are being very hard on yourself, you have been through a lot over the last approx. 18 mths.
You have had two diagnosis’s, a double whammy, and Covid times to shock you in that time.
When I was first diagnosed I came home and wrote my will and funeral music !!
My emotions have definitely been oscillating in Covid times.
I still get anxious before medical appointments and tests.
You say your conditions do not impact your physical health today, I manage fatigue which is my main symptom.
My diagnosis has given me the opportunity to assess my life and see what do I want to do and who do I want to do it with.
Today my diagnosis does not dominate my life or enjoyment of it, but as I said before It takes time.
It took me a long time to come to terms with my diagnosis, so perhaps give yourself time and be kind to yourself and even spoil yourself.
We support each other on this forum because perhaps we understand each other as no others can. Please keep posting I look forward to hearing more about you.
Hi @Martin-R and welcome to the forum. I have follicular lymphoma and am on watch and wait and I completely understand how you are feeling. I still find it really difficult to get my head around 4 years on and although I can’t say I’m getting any closer to accepting it, what I can say is that I have found ways to manage it.
Counselling has been something I’ve found really useful and have requested this a few times over the last few years. It just helps me to rationalise my thoughts and feelings and gives me coping strategies. If it’s something you think might help then your team can point you in the right direction.
Being part of groups like Blood Cancer UK/Lymphoma Action/FLF really helps.
There are lots of webinars on Watch and Wait and supporting your emotional well-being. These just make you realise you are not alone in the way you are feeling.
One thing I’ve learnt is don’t compare yourself to others. It’s ok to find it hard. What you don’t want it to do is to let it stop you living your life. When it gets to that point I think you need a bit of help. For me, that help has made me make some positive changes which I don’t think I would’ve done without it.
I really could talk forever about the emotional impact of blood cancer. It’s something I’m really passionate about and something I know the charities are too.
Give yourself a break and be kind to yourself. People always ask me what I would say to other people in my position and if I listened to my own advice I’d definitely be a lot kinder to myself.
Keep sharing - We are all here for you x
I’ve been on active monitoring for CLL for 6 years and, apart from the inconvenience of 3-monthly hospital appointments, I can honestly say that it has affected me negatively until Covid struck and being labelled CEV. Before having to shield, I largely ignored CLL as my father-in-law, who is a GP, told me it’s one of the best forms of cancer to have and that I’m much more likely to die WITH CLL than FROM it - this put it into perspective for me. So, it hasn’t stopped me doing a single thing (shielding excluded), in fact, if anything, after my diagnosis, I was so determined to have the upper hand, that I probably was more active, energetic and living life to the full!
I now have rather large tumours (nodes), with the biggest on my spleen, but still not needed any interventions. Of course, I will need treatment at some point, but there are treatments which merely require taking tablets at home - no need for invasive chemo.
So, whilst it’s not pleasant to have any diagnosis of ill health, I am rather glad I only have CLL, as opposed to so many other terrible diseases. It doesn’t define me and certainly hasn’t stopped me living my best life, even whilst shielding! Hope this gives you another perspective and some optimism?
Hi I was diagnosed with CLL in January this year and I’m on watch and wait. My main worry is coming out of shielding and lockdown and seeing people. I do take my dog out for exercise to try and keep fit. I’m okay with meeting family outside it’s the meeting inside when we can that worries me especially until they’ve had their injections. I don’t go in shops and have shopping on line. Some days I’m okay other days I could sit and cry.
How am i feeling? That changes from day to day, and sometimes throughout my days. I’m kind of struggling tbh. My mental health has not been the greatest in recent years, which probably doesn’t help. Well i know it doesn’t. But i really don’t want these conditions to define who i am. At the same time i do need to deal with them. Otherwise they will be the elephant in the room, so to speak. Thats no good either.
Anyhow, I’ll get there. It is very humbling, and at times sad to read other peoples stories. Kind of puts my own issues into perspective.
Thank you for your kind message of support. That is very encouraging regards your own journey and attitude towards CLL. Mine is at its very early stages, and its only my blood results that have taken me into that diagnosis (from last Dec). Haematology found my CT to be very positive. Nothing doing else where. Anxiety appears to be my number one enemy right now, and thats something I’m working on improving. i am sure It will help me a lot being part of this forum, and being able to share stories and hopefully also support other people. Its a bit of give and take.
And yes your message has given me some perspective and optimism. I do hope your health continues to remain stable. Thanks again.
Oh @Shelz, I think it is so natural for your thoughts and emotions to be so up and down, we have been shielding for a long time now.
I do the same practical and emotional things as you, minus having a dog.
I don’t think anyone understands what it has been like for us shielding for a year if they haven’t gone through it. Sometimes on my exercise walk I look around me and see the world going on as normal (or my old normal) and feel in a parallel universe.
Does anyone relate to this.
Hi @Martin-R I think that you are so right that if you are prone to struggling sometimes Covid times are going to make it 10 times worse.
I find being part of our community forum really helps me, this is the one place where I can be me and know that people will understand.
Please keep posting.
Hi, my Husband has CLL, diagnosed around 11 years ago. He is on watch and wait. We attended his Daughter’s wedding recently and I was extremely worried that the vaccine would not have been effective for him. So I bought a test kit (the Spike one specifically for vaccine antibodies). Turns out he has the top level of antibodies. Don’t assume that the vaccines are ineffective for all CLL sufferers.
Hi @BevA thanks for posting, welcome, you have just showed the value of this forum by posting you and your husband’s experiences with others.
There is a lot of information on the Blood Cancer UK website about tests and antibodies etc.
I look forward to hearing more about you both.
Hi Erica, Thank you for your msg and support. Apologies for the ‘radio silence’ after you posted it. I totally stepped away from the forum just after posting my message. Couldn’t deal with it.
Feeling a lot better now, mentally, thank goodness. Though I have now started to experience some fatigue. Most nights, after I come home from work, I am pretty much heading to bed. And not waking up totally refreshed either. Don’t know if this is due to my health or just a result of being 59? I do need to get fitter. I’ve always been a fairly fit guy, playing competitive football til I was 53.
Anyhow. I hope you are well, and thanks again for your message.
Hi @Martin-R. I think sometimes we have to step away and it’s really good that you know your mind and body well enough to know that’s what you need. It’s really great to hear from you, and to hear you are feeling better mentally. Often that’s more of a challenge than the physical isn’t it.
Did you find anybody in a similar situation as you? I have follicular lymphoma but haven’t heard of anybody with that and Chronic lymphocytic leukaemia (CLL).
I’ve started swimming which has made me feel a lot better.
Hi @Martin-R yes, that is fine to step away from the forum, sometimes that might be what you need to do.
You do seem to know yourself well and what you need to do.
I remember after my diagnosis I worked full time for 5 yrs, but all I did was work, sleep and run a house and you are right however much I slept I never woke up feeling refreshed. I was lucky enough to get made redundant at 58 yrs old, a win - win situation.
Fatigue plagued me too.
I started walking along the Thames towpath at lunchtimes and hardly walked any distance to start off with but slowly increased the distance, fresh air helps me.
Look after yourself and we are here when you want to join us.
Hi Erica , when I was in hospital just after being diagnosed it was starting to settle into my head till they started me on my painkillers and chemo regime , after my 10th day I was on another planet , wasn’t me in the mirror and after that morning I then refused to look at myself from that point on , and at that point my hair fell out also which made it worse for me , I had chemo/sleeping hats that I wore , 2 mths later I was able to get a wig , very emotional day , I hadn’t seen myself for 11weeks at that point & suddenly seeing yourself with hair oh wow , my tears were true tears I even got a hug of my nurse , people say I know what you’re going through , I can understand… sorry no , no I’m not sorry if you haven’t been affected by cancer and all the effects it brings then you can’t all you can do is see/watch as that person holds it together… I hold it together Infront of my boys & once their away if needed I let it out , if any of you are going through a bad time male or female cry - let it out…
You worded your post so well @Jay and the truest words you said was unless you haven’t been affected by cancer you cannot imagine what the diagnosis is like.
Also loosing your hair is so, so traumatic on so many levels.
Crying and letting it out is so, so important, I know the cost to my health if I don’t.
Also I finding posting on our forum is so cathartic.
Be kind to yourself, it is also really important.
Evening Erica , I had a fab day with Andrew , went to Cardwell Garden Centre for juice and biscuits , home , chill have dinner then I took him back to the care home… Gary didn’t want to come , but he wants time with me alone , so I said if ok next Wednesday he can come up for a few days… Weather up here is awful , not really the weather for tempting you to go out , but what have you got planned for tomorrow and the rest of the week ? Xx