High Grade Diffuse Large B Cell Non Hodgkin Lymphoma

Hi  and welcome to the Online Community but sorry to see you finding us.

Your journey will for some on the site sound like "yes that was me" but for other not but these journeys do take us all on a rabbit trail of thoughts, emotions and what ifs?.

Every presentation of Lymphoma will be different and bring various treatment plans and the opinions of the experts will also be different. I trusted my team fully and I am still around living well.

The infertility question is a real one but I have meet so may men and women in the same place as you but once the dust settles life comes into perspective but lots have went on to have family.

I am coming up to 20 years living with my rare type of T-Cell Lymphoma and back in 1999 I was told that "you will die from this"........fast forward 18 years and my team were telling a few years ago that I am in remission with no disease evident and the hope now is that I will die from something else.......I am happy with that and it's a good foundation to carry on with living life as full as I can. Yes I am open to other cancers but its not at the top of the issues on my mind and will just deal with it if it comes along.

I did ask my team "was there any factors.....life style etc that had a factor as to my diagnosis?" and the consultants clear reply was "You were given life's hand and you have to play it and no overthinking makes any difference, all you have to do is live"

My condition and the treatments used did just about kill me on two occasions but I am still around and my life view in wide and full. The past is disappearing and getting fuzzy at the edges. 

Its like driving s car. the windscreen is big and wide so you can see the future, the past can only be seen in the little rear view mirrors, that is on purpose as if we concentrate on the past we will coach and miss the future that is available for us.

As I have said my journey was long and complex and you can see it in my profile just hit Thehighlander and see my story.

The post treatment journey can be as hard as the treatment its self and takes commitment and determination to get through it.

Your last sentence asks "I could use some answers. No matter how painful they are" over the past years helping on these forums I have had the privilege to support lots of folks through their treatment journey..... unfortunately I have also had to send my condolences more than I would liked to the families of those who lots there battles.

I challenge you to grab the opportunity to live, don't look for reasons, your other sentence "Is cancer a punishment? Was it God's will to send me a lesson upon which i can reflect? are just not helpful and are just ways of diverting yourself away from moving forward with life.

I am sure that you will have thoughts and questions so we are always around to help out.

metaphorically speaking, bliss is a combination between self-induced ignorance and acceptance of uncertainty. On one hand, you stop over analyzing certain aspects of your life, especially the one you have no control over (your disease, for example). You move on, live your life as if nothing happened, because most people would show little close to no incentive towards understanding your true feelings. That may seem like a good solution in the short run. But the thought of relapsing never goes away. You feel emotionally unstable at times, knowing that someday, somehow, an "old buddy" will rise like a phoenix and give you the lesson of a lifetime. Sure, we can get by, we stop thinking negatively, we start practicing new sports, new hobbies, eventually we surround ourselves with people whom we love and care about, but the cloud of uncertainty never leaves your side. It drains you emotionally and spiritually. In such cases you see people getting closer to God, but what i feel right now is a mix of anger, ignorance and hopelessness. I feel like i have lost the right to live a normal life. And it's kind of ironic, because prior to the diagnosis, i was destroying my life with all my bad habits. I want to believe, i want to move on, i want to stop punishing and hating myself. I look at people on the street, couples, colleagues and i wish i had done more. I feel like i have exhausted my will to live and carry on. You know what's worse? You spend so much time observing, analyzing, deciding and acting upon things you obviously have no control over, hoping to walk on a path that defines your identity, as a whole. And the outcome is often paved with regrets and painful memories. In our case, these memories never fade away. They remain engraved in our minds. Some of us are filling that hole with things i have mentioned above. Others reflect upon them until they break. Either way, you lose a part of yourself. And the worst thing is that nobody understands you because each case is unique. Over analyzing things gives me a better hold of what might come up next, but it's draining my energy just as fast. Moving forward, as you mentioned, sounds like a cliche. We move forward because it's in our nature. We live, experience, learn and die. Knowledge keeps us afloat. I know keeping a healthy mindset in this period is crucial, but i'm seriously overwhelmed. I never, ever expected to be diagnosed with this. Whenever i attend uni, i look at these people and i feel hopeless. They have a life ahead of them. And here i am, struggling to understand my situation, objectively, without allowing my feelings to perpetuate a toxic mindset. 

I don't know what else to say. It's just heartbreaking. I feel as though my life has turned upside down, and no matter what i do, i will still end up suffering. It's like a time limit has been imposed on my life. You either live it properly or you die. I've seen and felt things, some of which i cannot fully understand or explain without looking like a maniac. My grandma is a strong believer, she has seen and felt things too that do not fit in the rationality and logic catalog. 

Have you had such experiences? 

Hi again "bliss is a combination between self-induced ignorance and acceptance of uncertainty"

Your two statement with regards to bliss are interesting thoughts. Self induced ignorance is not a way to live regardless of a cancer diagnosis or not. Living a life with a plan for me is very important, why live without having something to aim for. Yes my cancer diagnosis 19+ years back did interrupt part of my life journey but I did not let it define my life. Indeed it made a big difference in how I have went on to live my life and the things that I have achieved.

Acceptance of uncertainty is just part of life and again, is not part of how I plan to live my life out. Yes death is a certainty for all but as a man of Faith I also see living this life as being part of a longer journey.

An Online Community platform is not the best type of communication method to use to talk about the issues you are working though. I am assuming that you are not in the UK as I would recommend that you look for one on one support as this is the best way to unpack the stuff we put into our rucksack of stuff we collect during treatments.

In the UK we do have access to this type of support through various organisations and you may well have the same in your area - I would recommend that you seek this out.

We do have our UK Macmillan Support Line Services on 0808 808 00 00 as an option but you have to consider the call costs.

This paper by Dr Peter Harvey - Life after Treatment is worth a cup of tea and a good look through

Always around to help out and listen.

Hi Era Beatles,

Just popping in from another blood cancer as I saw your post on the homepage and just wanted to add that I think your thought processes, whilst unique to you, are entirely normal. I think I severely overestimated how alone and unique I was. There are loads of people out there who are having, have had or are going to have very similar thoughts to yourself. That might not be a comfort, but I hope it gives you some hope that you are not alone in this and you are much more connected with a fair proportion of the human race than perhaps you might realise. And there remains beauty in everything if you know where and how to look.

The brain is a fantastic thing. I know you’ve been to some very dark places, but your brain has the potential to come out of those places. I cannot tell you how you get there, that answer lies within you. The answer might be to think very deeply. It might be to not think about it at all. It might be a complicated combination of an infinite number of fluid thoughts. It could be a really simple fixed idea. But I agree with Mike, talking with someone is a good way to unpick everything that is unique to you and will enable you a better chance to help things make sense for you.

Wishing you all the best,

Greg

Hi Era Beatles,

Wishing you all the very best. I can relate to a lot of your thoughts. 

- Cancer arrived at an unfortunate time  - tick. Is there a good time I wonder?

-feeling angry about how life “should” be (without cancer) and that we have lost what should have been - tick

but where do we get our idea of how life “should” be? Why do we assume others aren’t suffering in all sorts of ways we have no idea about?  Why do we expect to lead a life without a long term health condition, or even a life shortening one? 

The anger and despair you mention is a normal part of our adjustment reaction to loss, first defined for bereavement reactions by kubler Ross, We’re literally grieving for the person we were before we had cancer. See https://goo.gl/images/Kt2GPm . I like the messy, snakey version of this, as it’s not a straight pathway, in my experience. 

The NHS five ways to wellbeing help us to navigate our unique path to maintain our own mental and physical wellbeing and you deserve to be very proud of all you have achieved in caring better for yourself. Ive found staying connected to “real” people (who care about me) has helped me, as has being outward looking and trying to learn from others, instead of introspective overthinking, self analysis (I’m an introvert so more prone to that). Through showing compassion for others whilst being outward looking,  ive learnt how to better practice self compassion - I was struck by the fact that you weren’t able to acknowledge any of mike’s/the highlanders journey with his cancer in the way most of us would, when a fellow forum peer reaches out to try to comfort us, as he did for you, for example. Why do you ditch your friends? These are offered as gently challenging observations/questions to help you with gaining more self awareness and I’d suggest are best explored with counselling and cbt support, and not to be answered on this forum. 

Reasons to feel grateful could be: that you’ve responded to treatment so far, not all of us are that lucky. You’re young and therefore im assuming you don’t have dependents to worry about like older people with this condition, you’ve discovered you like yourself enough to look after yourself, get second opinions and do what ever it takes to have the chance of more living. The fun starts in now choosing your attitude and what values you now want to guide you in how you live going forward. Like the enlightened Scrooge moment in the Christmas Carol. A good place to start is working out what you want more of in your life and what you want less of. I told my family and friends I wanted more comedy in my life, so we now catch comedy circuit shows when they are in town. We even went to the pantomime without kids this year and loved it, as our kids are now of the age to be too cool for pantomime. Silliness is sublime when our every day stuff feels heavy and complex.

Wishing you all the best for your recovery after your treatments, and plenty of self compassion ( you’re stronger than you think you are and you most likely already have the right answers to your questions, so maybe you could now choose to stop searching for those unanswerable answers?), and a fantastic 2019 in remission and beyond.

Ive loved my first year in remission and im grateful for every day,week, month, and year - and for hopefully some more years of the same. 

A huge thanks to all the fantastic DLBCL forum peers, here, for all their support to me over these last (almost) two years. You’re amazing, awesome and lovely people. Happy New Year to you all.

Hey Era_beatles,

i was diagnosed with DLBCL this year and completed 6 rounds of r-chop on this past august 23rd. I was told i am in remission with no signs of disease on my last scan.  yes it is a relief to hear that and yes there will always be the fear of it coming back but as you have said and others on this site those are things we truly can not control.  i am 38 with a loving wife and 2 beautiful daughters.  they were my driving force going through the treatments as terrible as they were.  but now that i have gotten through them my perspective on life has changed dramatically.  i will not preach to you because you are your own person and you will move on from this how you please.  i will say this...  you are 21 you have been given a new lease on life.  you have stated that you have abused your body let yourself go been a bit un-social.  those are all things you CAN control it just comes down to you and if you want to change these things.  i opted to not take off of work during my rounds of R-chop and by doing so I learned a lot about myself and how to endure a truly terrible treatment but at the same time to remain positive and just keep moving.  the mind is a very powerful muscle and judging by your writing you're a very smart individual.  your mood, actions, decisions, and energy are amazing components to our daily life that we have control over all of which will creates our reality. its a choice to be in a bad mood, its a choice to over think and over analyse things, its a choice to stay inside and play video games.  once you understand that these are decisions that only we can control i think this will help you get through these trying times.  my doctor opted to not move forward with radiation after R-chop i guess only time will tell if that was the right decision or not. 

in my mind now moving forward whatever does come up in front of me i will take it in stride.  something that i've learned is that no matter how hard things are in life you WILL get through it one way or another it is how you deal with the hardship and how you learn from it that makes you stronger.  there are no right or wrong answers as much as we think there are.  the one thing i can assure you is that you cant change what happened yesterday each second is an opportunity to turn things around. 

i hope i gave some insight.  i sort of rambled there but felt as if i could at least offer my opinion on this matter as it is still very fresh in my head and my scar from the meta port still itches. 

i wish you well on your journey and nothing but the best for you. 

Lou       

Thank you all for the replies. I may have gone a bit overboard with my second post. Seeing that some of you have actually gone through hell, I suppose i should consider myself lucky for being where i am. Though that does not change the situation, at least from my perspective. My guitar teacher, who is suffering from a rare type of Haemophilia, told me something along the lines of: "The road to success is often paved in hell". In Romanian, this saying has a lot more meaning behind. But being a language that evolved from several dialects of Vulgar Latin, when translated, it loses its meaning. 

I guess i should apologize for spreading a mindset that serves no good to people who are reading and going through similar, if not worse circumstances. I didn't mean to do harm to anyone. I've been depressed for quite a while now, and i didn't realize how toxic my thoughts must have been to people who came across this thread. 

I sincerely believe that there is something i'm missing regarding my disease. Maybe it's just a hunch. All i know is that my treatment went buttery smooth, and some things that should have gone terribly actually turned into a positive outcome. Thus my questions regarding God. Some people find aegis in religious belief and others, often guided by the Apollonian philosophy, deceive themselves by not accepting help from a force that they cannot feel, see or understand. 

I appreciate the support.

Hi Era Beatles,

Definitely no reason to apologise, if there is a space where we should feel free to discuss what is on our minds, then this is it. I was just worried for you. Hence my response to say that the answer to those questions you are asking are within yourself. I doubt that anyone will be able to answer them for you. You have the right, opportunity, will to decide whatever path makes sense for you. Or decide that the questions don’t really matter anyway. Your answers are never going to be the same as anyone else, but you are not unique in asking them, so you are not alone. And the brain has 60,000 thoughts a day, you should not focus on any one more than any other.

If you want to delve deeper into the spiritual side of things you mention, but don’t want to offend any particular religion, you could always try posting in the Atheists, agnostics and people who don't believe in god - Discussion Forum part of the forum. It might not be the perfect place for where you are at, but it is a suggestion if you feel you might be upsetting anyone (which I don’t think you are, I am just trying to help by responding to what you write in your posts).

All the best

Greg

Hi again, if all that has been achieved through these posts is that you now see that your journey although hard, is not as hellish as you may first have thought then this is a result in my book and a good foundation for you to look to go forward with moving on with life.

Your final sentence abd question about the acceptance of a higher power working in how our life's journey pans out is indeed fascinating but under the Online Community Guidliness would not be allowed to be discussed in these cancer specific support forums.

We do however have a specific forum that can be found under Groups then Cancer Expereances where folks from a spiritual or not background do support each other on their cancer journeys. 

Take care and I do wish you health and wholeness going into and through 2019.

Hi my 75 year old mother was diagnosed with high grade dcbl lymphoma in her stomach along with a few other nodules of follicular lymphoma. She underwent 5 cycles of mini r-chop chemo with petscans after each cycle. After the 4th cycle it was great news in that the mass in her stomach had reduced to half its size. We had been told it was not curable but could be contained for a couple of years. After the 5th cycle and petscan we were informed the mass had grown again and was now resistant to the chemo - we were all deeply shocked. Mum asked for honesty and was told it would definitely be her last Christmas but she must try gemox chemo- if she didn’t, it would be a matter of days or weeks. So gemox started on 14 December which was tougher on mum, she has nearly lost all her hair now & all food tastes the same to her so decrease in appetite and very tired but she carries on regardless bless her, she’s an amazing strong woman. Next consultation is 2 January and gemox on 4 January. I have been signed off work until 3 January so intend to get that extended. Both my sister and I and my 80 year old dad live at home together and we are very very close. Mums sister has terminal cancer & I was at hospital with her before Christmas when she was admitted but foolishly discharged herself two days later, it’s pitiful to see someone so I’ll. I’m so scared of what’s ahead for mum and scared I won’t deal with it very well. I need to be strong & want to help mum with no regrets until the end, I lover her so much & am fearful of life without my best friend and my rock. All advice kindly appreciated.