Cells in my blood, white blood corpuscles to be precise, have mutated and developed a sort of Lazarus capacity to live longer than the average cell.
In a comic book, that would be great, my blood lives longer than yours so I am Eternal Man! A hero who has lived for eons and who has accumulated the wisdom of Solomon and the muscle definition of Thor.
Sadly, in the real world, it means my blood is becoming overcrowded with geriatric and increasingly sickly cells. These old aged mutants collect in various glands, like a queue at the post office, and leave no room for the chirpy, fully functional white blood cells which my bones decide don’t need making any more because my blood is full up.
After a while my blood starts to resemble a once vibrant seaside resort settling into a graceless decline as it becomes a retirement town. My Dorian Gray cells will start to crowd out, not only, the healthy white corpuscles but also the rather more useful red ones that carry oxygen to my bits.
Instead of Lazarus Blood or the Juice of Eternal Life, doctors choose to call my mutation, Chronic Lymphocytic Leukaemia or CLL.
The Chronic part means it’s not curable, though it can be managed with chemotherapy. The Lymphocytic bit refers to the type of cell that has mutated, lymphocytes, and the Leaukeamia bit is the word that does have a superpower — the power to smack you round the face and force you to write a bucket list and regret not paying for life insurance, the Cancer word.
CLL develops slowly, it can take many years to gather its grey haired mutant army, and often it is diagnosed by accident in older patients. For me, its early days, I think I have had symptoms for a few months, tiredness to the point of exhaustion, a tendency to pick up and not lose infections and a painful neck (one of the favourite collecting points for the granny cells).
Two weeks ago I finally took these symptoms to my doctor, and he sent me for some blood tests then rang me the same evening to ask me to pop in first thing for a chat. That started a few bells ringing, but speculating is pointless. The next morning though he dropped the C word on me. Having lost (and not lost) a few good people to cancer, this sent me off into a short period of maudlin, which I easily cured by distraction, family and alcohol.
Currently I am waiting for a meeting with a Haematologist, who will decide the best way to control my geriatric white blood cells. The waiting is, I’m told, the worst bit and at this stage I would agree with that.
I’m good with this though, I don’t need superpowers to combat this problem, I need what I have already got but have sometimes forgotten, the most adorable wife and partner, family and friends that do what they do best — rally round, treat me as if nothing has changed and buy me beer, and a lifestyle and a career that mean I can take my time and focus on managing CLL.
I feel lucky, not everyone has such support, and I plan to pester everyone I know to help me do projects that do some good, you have been warned de-friend me now if you don’t want the embarrassment of having to turn down a request for a favour from me. I’ll keep you posted on the process, and will obviously let you know if I do develop an ability to climb up walls or jump tall building in a single bound.
Written by
mikedicks
To view profiles and participate in discussions please or .
There have been many posts on here describing CLL, but this has to be one of the better ones.
Watch and Wait (worry) is hard and can get very mentally exhausting as you try to "put on a brave face" or "be strong" for those around you.
This forum offers lots of help, buckets of advice and oceans of support. We all know exactly how you feel, what you are going through and the journey you about to start.
You will NEVER be alone, you will NEVER have no one or nowhere to turn to and you will NEVER have to be afraid to ask anything, no matter how silly it sounds or minor it may be.
We are the CLL family, unique, amazing, supportive, helpful and guiding for those that needs us.
I mean every word, because ,without this family i would have sunk into the black hole many times. Better than most pills and potions; understanding and support can work wonders..
You make a welcome addition to our community, though we wish you could have dodged the bullet that is CLL. Glad you found us, you will always have people to talk to who completely understand what you are dealing with. But you know, seems like you have the right spirit and the right people around you, to march along side you on this journey. Always someone to answer your questions.
Thanks Bubnjay, I have certainly got the right team behind me, but it's nice to find a place where people understand the thoughts that go through your mind, and where you don't have to worry that you are worrying or burdening your friends and family.
I am so sorry that we have a new person in this group of uncertainty. This is a great place to vent your fears and know that all of us understand and can identify and commiserate. I have found out that the normal healthy person cannot understand our situation and therefore we cannot get the help and understanding that we need. Only here can you freely talk about your problems, whether good or bad news. My husband thinks that I am a hypochondriac about it all, as I seem normal and am still active and as yet, untreated...this group is as good as it gets. I post little, but have learned so much, as will you. I really cannot express how this group has helped me to come to grips with the disease, and feel the caring of each individual. I hope for the best for you and please continue to post.
Fantastic, I really enjoyed reading that just a shame about the circumstances leading to its publication.
Welcome to your new group of friends and lets hope the research advances sufficient to allow this to be controlled with a daily pill rather than Chemo.
With a positive attitude like yours, the support team at hand that you already have in place, you will have a long happy life ahead of you. Granted, with your newly discovered mutant powers, there will be times of anxiety, times of frustration, times of worry, and times when you feel like you just need a nap.
Regardless of this new reality, and it's down sides; those of us with CLL have one super power that non-CLLers don't have. We have been forewarned, and reminded that life isn't forever (yes, I was one of those, I'm going to live to live forever, I have all the time in the world people), we have been given that wake up call that many don't get until they are literally on their death beds. We can make life and relationship changes that will make us and everyone around us happier. We can make the positive changes that really make a difference, before we find ourselves lying in a bed muttering the words; "If I just had more time". We have the opportunity to be happier and make those around us happier than we may have done before our diagnosis.
We also live in a time where medical advances are happening at light speed, we have an great chance of living to see a cure, a day when they will have to remove the "C" from "CLL".
Best of luck, and thank you for such an amazingly written description of CLL, you actually made me laugh about something that really isn't a laughing matter, two big thumbs up for that. In life, we have two choices, laugh and carry on, or cry and waist away in self pity. I'm so inspired by people like you who choose the high road, and I always try to emulate that attitude. I raise my glass to you sir (actually it's my coffee cup, but you get the idea). Have a long and blessed life, continue being the inspiration that you are today.
This is one of the "best " posts and as i sit at work, surrounded by birthday cards, chocolates and so many flowers it looks like the Chelsea flower show, i am reminded that so many people care about me, despite my CLL.
This is a good birthday, one i intend to cherish, not knowing how many more good ones i am going to get.
Best wishes everyone and lets kick the butt of CLL together,
Yes Happy Birthday Anne and hope you're having a lovely day x
Funny post Mike with an analogy that made me chuckle. Here's me thinking I'm in training to be a long term geriatric when the reality is my insides have already started queuing for their pension!
That's obviously why people don't cut us any slack...they see Magalluf and we are occupying Frinton-on-Sea!
It is my husband who has CLL,he will not use a computer but i have found this site a great help. It lets you know you are not alone dealing with this disease,it also anwers questions and provides links to useful information. It has also given me information on what questions to ask my husbands doctor. I always go with him to appointments as two pairs of ears are better than one. I wish you all the best on your journey.
YOU are, if not super, still a classic hero. We all are. We all fight the mutant zombies. We are legion. We share our craft and strategies. We listen to the tales of men and women wounded in battle, who or what helped them, and we learn. We value each day we are planetside with our loved ones. Our life has more meaning, despite the weariness.
Next time I'm taking a break from watching and and waiting, and having a cup, and watching the ballgame film on TV, I'll think of you and the others. But honestly, I can't drink too much beer, a battle left my gut a little sore. So it might be yogurt instead, ok? The spirit of good bacteria ...
What a brilliant description, never thought of it that way. Thank you for bringing a giggle into our CLL lives today. I am going to remember this one for a long time.
Ironically I have had one of the best birthdays EVER, thanks for all your good wishes.
CLL was an uninvited guest but put in the shadows, for now anyway, by the love and support of those who mean something to me.
THAT INCLUDES MY CLL FAMILY, of which you are all part.
this post will be one to savour and cherish especially when my skies seem black because re reading the wonderful description of CLL will make me smile.
I've just come across this post and I am so glad that I did mikeydicks. I'm going to print out you post and show it to family and friends as it does so marvellously explain in such imaginative terms the whole bloody meaning of CLL. I have found it somewhat difficult at times to explain to certain people what it is that ails me. As the mention of the word cancer to many is a shock and it sounds wrong as I don't particularly look sick. Anyway I just loved your great description of this darstedly disease could be worse though. And there is hope on the horizon for better and maybe chemo less treatments. I've had one round last year( chemo) and am waiting again to see if it was in the long run successful.
So cheers to you. You made me smile and lightened my heart.
I'm with Sheila... I'm just another Aussie who connects with your rebellious sense of humour and unique perspective. Make sure you keep up the posts Mike...what a treasure you are Fingers crossed for you from across the pond x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Potential Early Drivers of Disease in Treatment-Naive CLL Identified
Is my sore lower back pain a side effect of Acalabrutinib ?
IGVH Hypermutation test.
ibrutinib, opposite effect.
