CLL – Five Years and Counting

I was initially diagnosed with CLL (chronic lymphocytic leukaemia) in around May 2014, which means I have now been on what is known as watch & wait, sometimes called active monitoring and also known as watch & worry by most of us living with CLL, for over five years.  What this actually means is regular blood tests to see how the leukaemia is progressing, if it is progressing, and whether any other symptoms have arisen.  If they have, for example, some mix of the following symptoms; strong night sweats over a period of at least two weeks, repeated infections, swollen lymph glands which stay swollen, enlarged spleen, then treatment may be indicated.  I haven’t reached that stage yet, but will eventually.

This helps me survive. Not funny, but true.

If you met me you would think there was absolutely nothing wrong with me.  Unless you met me on an aeroplane, in which case you would see this (picture on right).  It’s necessary to avoid infection from the recycled air on all flights.  I know from experience I get ill, and that was before CLL was diagnosed!

It’s frustrating though; I had people taking the pee out of me when I posted this image on Facebook, which I did to try and pluck up the courage to wear it as I knew that people would react to it.  As a result of the comments, I could not wear it for my initial flight and of course got very ill at the other end which nearly spoiled my trip.  I wore it on the flight back and was perfectly fine.  My lesson was learned, but I doubt the people on the flight did if the comments from friends and family were anything to go by.

It hurt, to read the humour at what I looked like whilst the understanding that it would prevent my possibly needing chemotherapy or other forms of treatment for some time to come was completely lacking.  I understand though, that this is due to a lack of knowledge and information about what is the most commonly diagnosed form of blood cancer in the UK.

I help to administrate (and get a lot of support, advice and community from) a CLL Facebook support group for UK patients, and I asked if they could let me know what one thing they would like people to know about CLL. Ages given where mentioned.

Tina, 47 –  “I would like muggles (people with no CLL awareness) to know is that the risk of infection is very real and we have to take precautions, so whilst a lot of us may look healthy, we are not and we have to avoid illnesses.” (yes, that’s me, I started it off as I’m a firm believer in if you ask others to do something you should be prepared to do it yourself).

Diane – “I wish they could understand how tired you get, even though you usually look healthy.”

Veronica, 64, W&W 4 years – “Wish doctors etc. would recognise that fatigue is REAL (capitals by Veronica) and often debilitating.”

Jason – “Those that have heard of CLL think it’s a good cancer as they have heard or read something along those lines.  I can include my wife in that as the only appointment she attending my dx the doctor told us that and even though a few months later I got told I had bad markers (17p in my case) which complicates things everyone thinks all is ok and I will live forever – not against doctors telling people on dx that it’s a good treatment because that is a good way of breaking bad news but more needs to be put out there that there are many other forms of CLL which are not good.”

Tom – “The fatigue/tiredness thing is a problem and the fact it comes out of the blue and stays for a while is too.”

Louise C – “Tiredness and fatigue, it’s the pits”

Paul – “the effect it has on our loved ones.  Those of us living with CLL “feel” the effects, but our loved ones have to cope with the fall out and yet provide us with so much love and support.  In a way their challenges are worse (if that is the right word) than those with the condition.”

Wendy, 5 ½ years W&W – “The tiredness for me …, also people saying but you haven’t had treatment.  It took me a while myself getting my head around it has to get worse before treatment is offered.  It’s the opposite to other cancers.”

Denise, 3 years W&W – “it was the sudden impact of being diagnosed… and the effects on my immediate family.  Staying away from infection and getting friends or others to understand is very hard.  I also have fibromyalgia and chronic fatigue syndrome so it’s really hard for me to know why I’m so fatigue; could it be the CLL?  I’m never sure.”

Mick – “Fatigue.”

Shelley, 52, 2 years W&W (husband also diagnosed, 8 years W&W) -“ People think we don’t or can’t possibly have ‘serious cancer’ because we aren’t rushed into treatment.”

Louise L, 49, 2 years W&W – “It’s the fatigue that’s the biggest thing for me, I had to give up work because of it.  And that people keep saying ‘why can’t they just give you chemo’, I get fed up of my own voice explaining it to people.”

Janet – “Fatigue is the worst when you say you’re tired and people think sleep will cure all.  I feel as though somebody’s turned the power off … the worst comment ever ‘you don’t look sick’.”

Heather, 56, 1 year W&W – “for the consultants and doctors not say … CLL/SLL IS NOTHING!! Not only its affecting fatigue levels and infection risk but the mental effects on us knowing that cancer is running through the whole of your body can have … already had a breast cancer diagnosis 3 months after [diagnosis with CLL] and fear another type coming at any point!”

Jean – “the fact that after treatment everyone assumes you are cured which isn’t the case, we still have to be monitored and have to still live with watch and wait as before treatment.”

Mike – “I have had one or two quite negative responses.  One person even started asking questions that seemed to be bordering on “I don’t believe you really have cancer.”  Oh, and there’s the “at least it’s not serious cancer”.  For now, I no longer mention it to anybody.”

Jillian – “for the 4 years I was on W&W I never actually felt sick, potentially a bit more tired than I should have been.  To some extent I felt like a fraud.  It was only in the last week or so before my treatment that I really felt pain and tiredness, and then I succumbed to a rotten cold that delayed my treatment.  I consider myself really fortunate to have had such a positive experience.”

Phil – “The fatigue.  Then helpful idiots saying ‘you should have gone to bed earlier’.  If I went to bed much earlier I’d still be at work!”

Lynne, 12 years W&W – “the fatigue, and catching cold after cold.”

Louise K, 53, 4 years W&W “when people tell me I have a lucky cancer (is there such a thing?)”

Kenneth – “the mood swings and pain.”

Gillian – “when people say you look so well.”

Bernie – “people saying “you look well” when you just want to crawl into your bed and sleep forever.”

Elizabeth – “if I had a pound for every time I heard [you look well]!!! I find it so annoying and all I can think of to say is “appearances can be deceiving”!!! How can people judge how you feel when they’re not in our shoes?”

Joann – “I would like the muggles, doctors and specialists to recognise and raise factual evidence that even people on W&W have real debilitating symptoms for example fatigue, night/day sweats and joint aches to name a few, and for them to realise that this condition affects people’s everyday life.  People in this group have a real struggle when it comes to things like claiming for PIP or free prescriptions when in my opinion it should not be questioned; this illness is real and should be treated accordingly … even professionals think that if you look okay then you are when you’re really not.”

Mary – “my initial issue was to be informed you have CLL and then told that your first consultant appointment will be in four months’ time.”

Terry, 12 years W&W – “I feel like a fraud because I am not sick enough to receive treatment but still feel the effects of CLL every day.  I cannot commit to things because of the fatigue, it feels like someone has pulled the plug out.  I work when I can but it can knock me out for days.  Sometimes I feel like I am living half a life because of the amount of time I have to rest, it is so frustrating.”

Diane – “For doctors and consultants at hospital to actually be aware of and recognise what the main symptoms are, never mind the list of other things it does to your body.  And to recognise how difficult and frustrating life becomes for those with CLL but also difficult for the partner/relative etc. watching the one they love being robbed of aspects of their life, things that were ‘normal’ before but now so different.”

Mark – “I have had cancer twice and on balance dealing with CLL is somewhat harder because being treated the first time was done within 9 months of diagnosis with just the follow-up appointments afterwards.  [with] CLL many of us wait of years before treatment commences and that in itself is mentally wearing which only adds to the fatigue and people forget your life-threatening condition.
I also think there is one other point to consider and that is the loneliness of the disease.  Coping with feelings which can crop up at any stage and for those of us with nobody to share our woes relating to the disease, and indeed attempting to begin a new relationship with someone and you have to tell them about your unwanted passenger.  In truth, I feel like a leper at times and I can’t do a thing about it.”

Lisa – “You look really well so you can’t be sick so it can’t be serious.”

As you can see, it’s not just muggles but also medical professionals who have a lack of awareness of CLL.  We are at a higher risk of developing other cancers such as melanoma (skin cancer) or breast cancer.  GPs will often have minimal or no understanding of the implications and experiences to be expected with CLL.  We have to be our own advocates and push for what we know is best practice such as annual flu vaccines, five-yearly pneumonia vaccines, priority patient status for immediate GP appointments if we have an infection as we can develop sepsis incredibly quickly, and so on.  There is no mental health support offered or available for the majority of us.  Treatment and monitoring even in watch and wait varies enormously according to patient experience and geographic location.  It shouldn’t.

Please share this blog.  Please let people know about CLL and blood cancers, and please be patient and understanding with people, no matter who they are, as you never know what they are dealing with.

For Blood Cancer Awareness Month, September 2019.
#BloodCancerAwarenessMonth
#CLL

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