I was diagnosed with CLL in June 2011 with a count of 31 at the age of 53.
Like many, it was a chance discovery. The tests were intended to confirm a kidney infection. Otherwise, I felt, and had felt very well. I still do.
Initially the medical approach was, "It may be an error we will re-test" 'What is possible CLL?' I asked, having read the report. An explanation followed.
By the time CLL was confirmed I had pottered around the web and was not surprised to learn I had not fallen foul of a typical cancer. You know the type...
CLINICIAN "Mr. X, I have some good news and some bad news."
ME "What's the good news?"
CLINICIAN "You have three days to live."
ME "Jesus! What's the f#$*ing bad news?"
CLINICIAN "You should have been told two days ago."
Oh no, nothing straight forward. I have a cancer that may kill me within 12 months no matter what treatment I have, or, I could die of old age never having treatment, although my life will probably have been shortened. Oh yes, and anything in between.
ME "Oh, that's good news... I think. Actually, I don't know. Do I? What do you think? Oh, you don't know either. In that case I will have to wait and see."
I have always had excellent health, I have always been able to overcome adversity. I failed very badly once and I have not repeated it since. I kneel before no god, and no one will kneel before me. I do not take kindly to being dictated too, by anyone, or anything. I am not pleased!!
That was my reaction.
There have been a few occasions in my life when I thought I would be dead in a second or so. I know I am not afraid to die. I was not angry, I did not ask "Why me?" I did not shout "It's not fair!" I was not bitter.
My thoughts were for my family. How do I tell my wife and two (adult) daughters I have cancer? They know two of my sisters were killed by cancer. They know my third sister was lucky to survive it. They know my wife's family has a history also, and all are dead. We are very close. My girls still hold my hand when walking about.
What will happen when I tell them? Their belief in my indestructibility will be shattered, their expectation of my continuing will be destroyed, and for what? There is nothing they can do. They will fret and be fearful every time I sneeze. They will constantly wonder if I am alright in response to otherwise insignificant events.
I will not tell them. My place as a husband and father is not to expose my family to such pointless distress. Not to mention the shock of learning the truth. Their sadness and fear will make no difference. I can easily save them all that.
My tears dry. I will tell them when I can no longer hide behind silence. I am at peace and content.
15 months latter I develop Neutropenia. Whilst in hospital, when my wife was visiting, some bloody doctor opens her mouth before engaging her brain. Her expression betrayed her realisation. My outward response was polite and understanding. Inside, I was ready to rip her stupid head off. I only stayed for a day or so, my count increased and I had repeatedly declared I felt fine.
Now my wife knew the truth, my daughters would have to be told.
Don't ever get cancer. Sooner or later, you will have to tell your children. For the first time in my life, I knew what fear was. When I think about the expressions on my daughter’s faces...
I visit the consultant (in Somerset) every 3 months. My count goes up then it drops back down. Then it goes up. It was at 47 in June 2012. Next week, it will be what it will be.
I am not going to stop eating curries because they contain something people with CLL should not eat. I am not going to sell my motorbike for fear I suffer an injury that leads to an infection that kills me. I am not going to stop kissing my dog in case I catch something.
I will take responsibility for my choices and there consequences (my family agrees), and If I am to die at the hands of my cancer, I will look my death in the face and I will smile. My death will ensure I am free to walk the path I must follow and for that, I am grateful.
Many people are frightened of people with cancer. Give them your support and your strength, for they are weak.
When people say "I am so sorry, how awful, how do you cope?" Tell them this...
"Omeba die, people die, mountains die, planets die, stars die even galaxies die. Some live for minutes, some for billions of years, but no matter who or what you are, life is always fatal.”
It's difficult to find the words to respond to your blog - I have so many questions really.
Like you, the hardest thing I have ever done was to tell my son and daughter (also adults) about my CLL. I told them in stages; at first telling them there was something wrong with my blood and then after CLL was confirmed, what it was. I didn't mention the word 'cancer' but my son was astute and asked. I had to say that it was and I could barely get the words out of my mouth. I have promised to be open and honest with them, though I have spent the last 2 years playing down how bad or scared I feel at times. My husband has known from the start.
Before the CLL, I had a Breast Cancer scare and my kids were really upset that I hadn't told them until after I found out I was OK (apart from CLL) - they seemed more upset to have been kept in the dark. I had a similar dilemma when I went through all the investigations for Lung Cancer this year and I do confess that I couldn't tell them the whole truth - again playing it all down. I didn't have it, after lots of different scans but I'm sure the memory continues with my kids. I mentioned it recently, forgetting that I hadn't told them everything and they were shocked.
It is very hard when you are trying to protect people from difficult things. Now they keep things from me, as they don't want to worry me!
So, enough about me..... were you having treatment when you were in hospital and how are you now? I am not sure whether one is supposed to question a blogger or just make a comment.....
I like the quote - try "not to lose the joy of living in the fear of dying"
"Were you having treatment when you were in hospital and how are you now?"
I have received no treatment and, since quiting smoking, I have not felt as fit since I was in my twenties. I run with my dog etc. I did suffer an assault by several strains of the common cold prior to my hospitalisation, but only felt as if I 'had the sniffles'.
Other than that, I am very well, despite having the label 'cancer patient'.
You have endured more than your fair share of encounters with the big C. Rumours of breast and lung cancer are enough to put some people in their grave.
I am lucky, I know my lungs are clear (when last 'scanned'). In fact, the consultant found it difficult to beleive I was an ex-smoker.
I must give credit to my spiritual tradition for part of my response to my condition. Death is regarded as a transformation necessary to continue life (in a rather matter-of-fact way). If I have time, I will tell someone if I still feel the same way just before I die.
Thanks for sharing this, I remember it was not knowing what or how to approach my kids about living with this disease that first prompted me to contact the CLLSA for insight.So hearing others experiences here is most revealing. Thank you. I look forward to reading more.
I'm glad that you are feeling so well and that you don't need treatment yet. I gave up smoking 3 years ago but that's when my major health problems seemed to spring to life.... I guess things could be worse if I hadn't stopped!
I have no dog and don't / can't run and there have been times when I have felt like I was almost in my grave. Luckily, I am in a positive place at the moment though......
Cancer does seem to focus the mind.
I have yet to develop a more healthy approach to death; I subscribe to Woody Allen's belief:- "It's not that I'm afraid to die, I just don't want to be there when it happens".
No, I didn't actually mean it to be funny but when I saw what I'd written, I realised there was a paradox there. I meant it seriously and I really hope that I didn't offend. However, I do have a dark sense of humour and can appear flippant; I have to take care with what I say.
I am very afraid of death and don't think it's amusing - I have no belief in an afterlife and so I have no comfort there. I envy those who have a different attitude. I fear for myself but mainly for my children and husband ie. those I leave behind.
I hope you are able to maintain composure, should you need treatment but nobody could blame you if you didn't!
I cannot empathise with your fear of death. I have no understanding of how that feels, other than it must be... to fear that which is unavoidable, for every one and every thing.
I cannot imagine.
My father was terrified by the prospect of his death. He died at the beginning of the year aged 94. For those who look on, dementia is a terrible thing. For some, an inability to understand their pending death, is a blessing.
Such surprising contradictions and almost unforeseeable advantages teach me there are always benefits no matter how bad something may appear.
Life after death?
My spiritual tradition does not believe in life after death. It does not believe in death. However, I do not accept this simply because the same doctrine has been passed on for the last 5 to 10 thousand years. That would simply be a case of accepting what one is told and abdicating one's responsibility to consider if such tellings withstand reason (in my opinion. No offence intended).
Scientifically one can neither create nor destroy. So what I perceive in my universe is constant recycling (re-birth if you will). Does that mean my consciousness will also be re-cycled? If one cannot destroy, it must become something. Is that something me?
I do not know. I cannot recall what happened the last time (if there was a last time). All I can conclude with any certainty is 'it's possible'.
When one reconsiders surprising contradictions and almost unforeseeable advantages, 'it's possible' beats the hell out of an emphatic 'no'.
Thank you Tim for taking the time to share your thoughts.
I would never say an "emphatic no" and I try to keep an open mind, believing that I don't know what will happen for sure and that anything is possible.
I can accept that all things are connected and that life may continue in a different form, meaning that nothing dies; merely changes.
Unfortunately though, this gives me no comfort, as I still believe that my life, as I know it, will end.... I hope it is later rather than sooner......
I confess that I was not expecting such a philosophical discussion but it gives me food for thought and for that, I am grateful.
Take care
sparkler x
Hi,
In the three years since my diagnosis, I don't think I have ever read anything so close to describing all the emotions etc. that I have experienced until now. Thank you!
In particular, your comments:
'Don't ever get cancer. Sooner or later, you will have to tell your children. For the first time in my life, I knew what fear was. When I think about the expressions on my daughter’s faces...
This is exactly why, 3 years on, my children are still blissfully unaware. They were 8 and 13 when I was diagnosed and the anguish both my husband and I went through about what we should tell them, still haunts me. I know at some stage we are going to have to tell them and that is still my greatest fear.
In the meantime we are living life to the full and loving every minute.......well as much as living with one teenager and teenager-in-training allows!
I am looking forward to reading more,
Jo
x
in reply to
Hello Jo;
We were lucky, our teenagers were rather civil.
I envy your ability to keep your children safe from the truth. If my path had been such, I would have gone to my grave without anyone knowing.
I feel as if the doctor (who let-slip the truth) has dishonoured me by proxy. Although I show it to no one, I am still very angry over what she forced me to do against my will.
Yet, in contradiction, my spiritual tradition tells me it meets a purpose, even though I do not understand. It is my responsibility to learn what purpose it serves, and benefit from it. It is sometimes difficult for a Northerner to accept this (we are different to people 'south of the Danelaw' we have a tendency to be more... 'direct' when provoked).
As I write, It occurs to me the benefit may be, I have returned to my earlier state of fearing no thing. Actually, yes. It had not occurred to me until just then. I could still happily make her shoulders lonely for her head
I found it a great relief to tell the family. My wife was not so sure. In the end it was becoming more and more difficult to explain time off work, after 35 years with only a few days off, and the excessive tiredness. Now they know they have premission to discuss it if they want to but more important understand when I need to rest etc and are careful not to invite us over if the grandchildren are not well.
So for me it was a positive - but everyone has to make their own decision on their journey.
We were some what confused at diagnosis. Dr said this should not shorten your life but sort your affairs out. Nothing like mixed messages
It's hard to tell family what is going on, but i made the decision that I had to be honest with my children - aged 22,20,16 when I was diagnosed. It was hard to tell them but I felt that if they knew what was happening then they would trust me more. CLL is not a taboo subject in our house and I personally feel that makes it easier to deal with. I promised to tell them the truth about my CLL - but that doesn't mean they have to know everything! They know treatment will happen in the future and they are more prepared for that happening.
We all have to decide what's best for us and our family and I hope I have made the right decision for mine.
Just goes to show - we're all different. I was diagnosed in 2004 at the age of 41. Children were then 12, 11 and 8. Although it was difficult at times, my husband and I decided not to tell the children until I needed treatment. Two and a half years later, one of the most difficult things I have ever done was to tell them but after asking lots of questions and a few tears it was a great relief to have it out in the open. I had FCR early in 2007 and although my counts are now creeping up again I have had 5 really good years in remission.
My diagnosis, like many others, was a complete shock - always been fit, active and well. However, although at times difficult to deal with, I now appreciate things more and try and enjoy life to the full.
Think we all know our own families and there is no right or wrong way re the timing of telling the children or other family members. It is a personal issue and even though it was a huge relief once the children did know I would stil, with the benefit of hindsight, not tell them until I felt they needed to know. Because of their ages I felt that for them ignorance was bliss.
Hi I told my husband straight away. He is emotionally strong and although shocked took it well. We waited until after Xmas to tell my children all in their 30's (I'm 56 now but was 50 when first dignosed) Again they coped with the news well. Although I try to not worry them or myself too much I cannot protect them from the truth. Which is sometimes bad news. When I went through treatment (I start Oct 2010 finished March 2011)their love and support got me through it. I loathe this disease and the effect it has had on me. I feel that instead of being able to all the things I couldn't do when I had young children I have to pace myself and not do too much in any one day. Its what you have to do when you have a chronic condition. But as the song says always look on the bright side of life. Good luck.
I have to say that your message has made me smile with your views on having CLL, u put a different perspective on it and I think that it is great.......my mother passed last month with CLL at the age of 62.....we as a family had a terrible time of it and my poor mum was suffering quite a bit before she passed....what i will say to you if you can is tell your daughters.....let them support u because u will need it, I left this site shortly after my mum died but I keep finding myself back on it at night having a look to see how other people are coping with this horrible disease
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