Adjusting to life with, and after, lymphoma can have a significant impact on your emotional wellbeing & we are aware that each person has their own, unique experience of lymphoma.
As we approach 'World Lymphoma Awareness Day’ ( Sept 15th), we wanted to understand how you have personally coped with your own diagnosis & what has helped you?
Do you reflect and wish you were better supported at points along your diagnosis or is there any advice you would pass to someone newly diagnosed in order for them to feel better equipped?
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I found the period after end of treatment the hardest mentally (I had 6 cycles of chemo and Rituximab for my NHL). During treatment you are “in action” and seeing doctor/nurses every few weeks . Then treatment finishes and you feel like support vanishes and you are left alone with your thoughts - at that stage constant worry as to whether the treatment has worked, whether you will stay in remission or if the lymphoma will come back (also due to the Covid environment I haven’t had maintenance treatments which would have been a “normal” ongoing level of support). My consultant has been really good gradually weaning down visits/calls from 4 weeks to 6 weeks to 8 weeks to 10 weeks etc , think it would be helpful for people to ask and to know “what happens when treatment finishes?”. The further out from treatment you get, the more you learn to live with the fact that lymphoma may come back one day (as mine is indolent lymphoma so it’s treatable but never fully curable so it could be back in 1 year , or could be 10 years), and you learn to trust your body more although any twinges, new bruises, always spark that “is it back?” In your mind . Most days now I am in the “what will be, will be” mode of remission but always feel as though my emotions are more raw/near the surface than they used to be
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I have to say @CaroleCW how brilliantly your post is written, and I think you raise an issue not often spoken about with ‘what happens when treatment finishes’ and the emotional thoughts and feelings at that point.
This can come about with any of us on here perhaps in differing situations and I might start a topic on it, if you don’t mind, thank you so much.
Your last sentence is also so, so true and really resonates with me.
Look after yourself
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Thanks Erica. Think it would be great for you to create a new topic of “What happens after treatment?” And the emotional/mental aspects of it.
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i can identify exactly word for word with what you are saying could of been me wrote it .
i have NHFL .
there is always that niggly thought of is my cancer active and i dont know it, there is that period of time between 6 month blood tests relieved at okay result for a while then it fades till next test.I flip from is it unknowingly active to denial that it will never come back then constantly reminded with so many adverts on tv for cancer . i only had 1 scan after treatment ended none since ,maintenance was stopped due to covid.
i am a big marvel film follower they are an escapism for me totally absorbed forgetting about cancer ,however have just watched the latest film called Thor love & thunder only to find one of the main characters in it has cancer & chemo then dies at the end , was gutted , really, just too much had some tears it brought my thoughts right back to the :what if and when.is there no escape. i dont feel there is enough help out there ,maybe some support that is local in the communities we live in ,someone to actually speak to in person maybe connected via gp surgeries, not on phone or laptop .
seems the human touch is lost these days.
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Totally agree that it’s so easy for our memories to be “triggered” by things we see on the TV/in films . Take care x
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Hi @LauranBloodCancerUK. I relate so much to what everybody else has said.
Five years on from my diagnosis I am still on watch and wait with 6 monthly appointments. I am really lucky to have a great medical team around me and I trust them completely. Medically I have no complaints. For me, the emotional impact is difficult - some days more than others. Watch and wait is difficult. Not knowing what’s happening inside my body is difficult. Not knowing if or when it will return cause panic. Carrying on as normal, when sometimes, I want to scream drives me crazy. Trying to put it out of my mind is exhausting. Wondering how I tell the children if comes back. Worrying every pain or twinge is the lymphoma coming back.
So , with this in mind I think the after care is a huge area that needs improving. We are lucky to have support lines we can call. However, the lack of counselling available - over a period of time - is limited. Bupa offer 6 sessions and you can also get this through your hospital. However, watch and wait is long term. I don’t particularly need block sessions but a regular check in would be so beneficial for me.
I think things have improved over the five years and I’ve developed my own coping strategies. However, for me, that coping strategy is putting it to the back of my mind until something triggers it or I get overwhelmed - not the most effective method!
It’s a tough one to talk to people about - it’s hard for them to understand. Thankfully I have this forum which is a life saver.
I wish there were more long term options for support but also understand the funding issues with this.
So, that’s me. I could go on forever but just tried to get my main thoughts down. And breathe!
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January will be five years from my initial discovery. My husband and I plan to mark this with some time away to celebrate and mark this achievement. It is a huge milestone five years. I was diagnosed with a large abdominal mass that didn’t disappear completely after rchop or maintenance so I am left with that hang over term of you have incurable cancer.
Having incurable ( but currently treatable ) cancer is tough mentally. I try to look forward to the day when I don’t think about it.
For the time being it’s about enjoying life living every day the best life that we can as none of us know what is around the corner . My lymphoma in all likelihood may not kill me Im just as likely to die of something else . The way I look at it I could get hit by a bus crossing the road tomorrow so I need to stop worrying about what hasn’t happened yet and what has gone before. No point looking back I’m not going that way - onwards and upwards as they say 
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Yes, onwards and upwards and celebrating everything @Jules (usually with hot chocolate and shortbread) is my motto too.
Some time away sounds good to me, any thoughts on where you might go?
!8 yrs on and I still get nervous before tests and medical appointments.
However sometimes those negative thoughts do pop into my mind, usually when I am overtired and not looking at my self care. I am only human.
In the words of Rod Stewart 'so love the life you live, and live the life you love
Please keep posting how you are and be kind to yourself
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Hi @CaroleCW,
Thank you so much for sharing this. I think as others have said you have perfectly highlighted the difficulty of life after treatment. Often it is something that is not discussed with patients and can come along like a steam train. When all hospital appointments have slowed or stopped it seems that a new lease of worry is unleashed.
I think recovering from treatment is often naturally linked to recovering physically but the mental aspect of treatment and life beyond is of equal importance and something we would love to see discussed more at points throughout a patients journey.
Life after treatment often means you have more time and time means space to think…reflect, worry, speculate about what the future holds & that can be really difficulty for so many to manage.
Hearing examples of how others have coped is invaluable and im so grateful we have this space to share and learn from each other.
Take Care, Lauran
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Hi @skye,
I must admit i can fully relate to having that escapism in our lives- i think it is so vital and often i will refer to this ‘as doing my happy’. Not quite a Marvel film fan but love a ‘who dunnit it’ crime drama or indeed something that is mind numbingly easy to watch and transport me to a sunnier land.
Everyone needs to find ’ their happy’, that something that can help even just momentarily to escape almost.
You are so very right- there certainly needs to be more conversation & support around what comes next after treatment and how people can support each other.
I am aware that telephone calls are far from ideal for many but always remember that we within the support team are always on hand should you ever wish to talk anything through- 0808 2080 888.
Wishing you a lovely long weekend, Lauran
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Like everything you adapt.I didn’t realise that there was a World Lymphoma Day but it’s gone now as it was on the 15th and it’s the 18th now!I have learned a lot about these disorders since being diagnosed with Mycosis Fungoides a NHL subtype.I’d heard of things like lymphoma, leukemia and myeloma before but didn’t know much about them except for you’d best try and avoid getting them!I don’t think that I’d known anyone with them either and the relatives(grandparents) who had died of cancer had expired from more common Carcinomas ; Liver and Throat Cancer as I recall.I was meant to have a hospital appointment on the 19th of September and I believe that they were going to introduce a new medication called Methotrexate as the Interferon Alpha doesn’t seem to be working but due to the Queen’s death the appointment has been put back until October now but I don’t suppose a month will make much difference.
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Hi @Nichola75
Thank you! You have raised such a valid point about the lack of available support around the psychological impact of cancer as a whole. There is more & more seen online about raising awareness and social media, which is fabulous and means we can access wonderful smaller scale support networks however this is not accessible for everyone and indeed is typically not a place of trained support or something carried on long term.
Much work needs to be done in this area and often simply having a space to talk about it can be enough but wouldn’t it be wonderful to have real tangible support around a persons wellbeing long term.
I also could talk about this subject until the cows come home!
Thank you for contributing as it not only allows us within the support service team to understand individual experiences but also provides a sense of what else is needed.
Happy Sunday to you,
Lauran
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Hi @Jules thank you for sharing this. I can feel the positivity from your words and what a lovely take on life. I hope your time away with your husband is nothing short of perfect. Do keep us posted on your adventures.
Have a ball, Lauran
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Hi @Kevan7 I will copy your question to the Blood Cancer UK nurses @BloodCancerUK_Nurses.
I also had a hospital appointment booked for the 19th and last week had it confirmed by text and then later on cancelled by text and another one issued for October.
I know it is very different, but my husband has been on Methotrexate for his arthritis for years without any problems at all.
Please let us know how you get on and take care of yourself.
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I’m not concerned by the end of the treatment.
I still feel supported, but the median survival rate even after intensive treatment for angioimmunoblastic t-cell lymphoma is about 3 years. I know I have to die of something and that old chestnut about being hit by a bus blah blah, blah, but I’m scared every time something is physically wrong that’s the end. I also feel much less ambitious. I’m not sure I want to, or should work a demanding career if I’m likely to die in the next few years. I do genuinely appreciate I’m lucky to have survived and physically relatively unscathed. And no-one knows when they’re going to die and most probably don’t really think about it. But having to unexpectedly face your mortality head on, gives it much more of a tangible reality. Tough for all of us to deal with.
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Hi @Paul I was really touched by your post yes, our diagnosis really does make us reassess our lives and mortality doesn’t it and yes, I am far less ambitious too, I have learnt to say ‘No’ and decided what I want to do and with whom. I appreciate the day more and what is around me and guess what most of the best things in life are free.
Thanks @Paul for making me think and really appreciate the things I have to be grateful for today.
Look after yourself and spoil yourself
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Really tough @Paul. So much of what you said made sense, especially that fear of every ache and pain. It can be so mentally exhausting, which then makes a challenging job even more challenging! Take care of yourself 
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