CLL Support Association
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Holding Court: Clive James Writes about the end of life and CLL

Friends,

A dark poem just posted on my blog- bkoffman.blogspot.com for the end of the year and the end of life from a fellow CLL patient.

If you know how I might contact Clive James, please let me know.

Stay strong

Brian

bkoffman.blogspot.com

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Brian, I don't know if you caught this previous post about Clive James being open about his life with CLL? Sorry, I can't help you get in contact with him, even if we are both Australian :( .

healthunlocked.com/cllsuppo...

I'm not sure how much of his current health challenges are due to his emphysema (most likely due to smoking) or his CLL. It can't be easy struggling with low oxygen uptake due to both illnesses...

Neil

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Brian you might be able to contact or send a message to Clive James through his literary agent. The contact details are on this link; - good luck! I share your desire to send best wishes to him.

unitedagents.co.uk/clive-james

Newdawn

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Clive’s journey is followed by quite a few of us, . Clive is a very private man, it used to be possible to gain direct contact through his website which he managed himself while well enough. If you are not familiar with his works it is all hosted there.

Visiting there today I see he has posted: “Due to my ill health, I no longer have time to maintain a direct contact facility for this website. But I am very grateful to the many people who have written to me at the site over the last few years.”

Clive James website: clivejames.com/

Further info:

Earlier this year from in this group Should public figures with CLL declare that they have it? Clive James has no problem doing so

healthunlocked.com/cllsuppo...

2012 discussion in Macmillan group

Clive James living with CLL

community.macmillan.org.uk/...

Thu, Nov 27, 2014 11:39 GMT

Clive James reveals 'embarrassment at still being alive' – Daily TV round-up

uk.tv.yahoo.com/clive-james...

Clive James pens heart-breaking poem as he faces his own death

TV legend is suffering from terminal emphysema.

Fri, Sep 19, 2014 12:40 BST

uk.tv.yahoo.com/clive-james...

Daily telegraph in May as Clive departed from the telegraph

Departure of TV critic, who has suffered leukaemia, kidney failure and lung cancer, is 'by mutual consent', says source theguardian.com/media/2014/...

Daily Mail June 1st Terminally-ill-Clive-James-74-jokes-final-public-appearance

dailymail.co.uk/news/articl...

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“You will die with CLL not from it.” ”If you’re going to get cancer, this is the one to get as it’s slow growing” “But you look so good.”

I resonated more with the dark writings of Clive James than any of the plethora of Pollyannish comments made by the medical community or the masses of people whose fear of negativism clouded their ability to empathize with the reality of my experience with CLL.

In 1 year, I went from a vital, working, very physically active, high performing intellect to a pajama wearing, foggy individual who can barely walk up the stairs to lie down. I cannot hold down any form of job due to extreme fatigue, brain fog, and the inability to find any comfortable position due to pain in my joints, bones and connective tissue. At the same time, I see patients with other forms of cancer receiving support from CCAC for medical equipment, nursing assistance and disability pensions, while I receive a reduced Canada pension because I am under 65 and fall between the cracks. I am uncomfortable attending church because of all the hand shaking and hugging amidst the coughing, nose wiping crowds that are working through the usual flues and seasonal colds. I am embarrassed from the looks I get when I don’t want to shake hands. Most often I should not be behind a wheel because of my inability to focus and tiredness. I get foot cramps, headaches…my knees feel like they are being twisted apart like when you remove a drumstick from the thigh on a chicken. My hands hurt so much and one of the fingers locks in the closed position. I can no longer go for a massage as my ribs and humerus hurt to touch. My skin bruises easily, I get petechiae the pop and bleed like crazy and pressure hurts my hands from doing simple things like turning a door handle, carrying a laundry basket or pushing a lawn mower. My hearing is going, my eyesight is “variable,” and I have persistent coughs, sinus issues and shortness of breath.

It hurts to see my wife go off to work and most of the time, I’m so sound asleep that I don’t even hear her get out of bed, getting ready to go, or the door closing. My ability to do housework is greatly waning and preparing meals has become challenging, as I have no appetite whatsoever. I can no longer care for my father who has stage 4 prostate cancer, and now visit him less and less in the long-term care facility we placed him in as I am sick for at least 2 days after every visit.

I feel alone amongst a medical community that appears to feel uncomfortable with their own lack of knowledge about the disease, it’s symptoms and its treatment. I no longer want to wait weeks to get an appointment to sit in germ filled waiting rooms to only receive shrugs from a doctor. At the cancer centre I travel 1 hour to pay for parking in a donated lot (if there is room), only to be greeted at reception by some young girl who exclaims, “wow you sure look different!” as she checks my health card. I then walk up the stairs slowly and then down what feels like a seemingly endless hall to a waiting room, sitting for 2 hours while I watch the volunteers closing up their coffee and donut station. When I finally get to see the specialist he asks the same question, “do you get night sweats?” to which I answer the usual, “no, but I get hot flashes all day.” He mutters something about not understanding why I am so tired, and then makes another appointment for me to go through all this again 6 months from now.

“You most likely will die with CLL, not from it.” I hate that saying. If my weakened state causes a stroke, a heart attack, or more aggressive cancers to take over my body…it is from CLL. If the depression, or frustration, or loneliness overwhelms me and I decide to end it…it is from CLL. “If you are going to get cancer…this is NOT the one to get as it is slow growing.”

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Thank you for your candour, our journeys are strangely parallel...

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DocM, there is much in your reply to which I can identify, though thankfully not the terrible joint pain and skin conditions that you suffer from. I too have felt quite ill at times from daytime hot flashes and I too get frustrated at running out of puff (or perhaps more correctly walking out of puff). I've been fortunate not to fall between the cracks, but that's only because my immunity was so badly affected by my CLL that I could no longer work.

While I can thank my medical team for helping me obtain a disability pension, it was through reading up on how CLL can affect my health and taking steps to minimise my risk of infection and running suggestions past my haematologist (like checking my Vitamin D level and subsequently boosting it into the normal range), that have helped me to regain some of the quality of life that I've lost. I've lived with stage IV CLL now for 6 years and it was the first two that were the worst. I hope this gives you the encouragement to keep looking for opportunities to claw back your quality of life from the lows you are experiencing.

Neil

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DocM

PM me your location, I may be able to suggest the name of a doctor with a firm understanding of CLL in your area... also have you ever been treated?

~chris

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Chatham ON. Both my family doc and the Windsor centre have been no help. I have received no treatment. I get CBC's every 3 months. WBC 33.3, RBC 153, Plates 22, Lymphocytes 27.3. Count doubled last December. I'm the one whose original blood test was filed by my physician for 1 year before it came to light by accident during a hospitalization from an infection.

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Go see Dr. Graeme Fraser at Juravinski CC perhaps

fhs.mcmaster.ca/oncology/fa...

He is Chairman of the CLL conference in Niagara Falls in April... think Brian, WWW and I hope to be there... maybe Nick

and Neil as well...

Along with Dr. Hallek, Dr, Keating, Dr. Flynn, Dr. Leclair,

Dr. Gibson, and many more, 250+ CLL patients and caregivers...

cllpag.ca

Hope you will join us!

Remember I lived in Rodney and Glencoe... I know the backroads to Chatham...... :-)

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One of the darker side of our disease is its unpredictable variability.

Certainly for the vast majority of us that need treatment for our cancer, CLL or its complications will shorten our lives. We will die of our CLL (though that may be changing - too soon to know). For a lucky and not inconsequential minority, that will never need treatment, these fellow indolent CLLers will indeed die with their cancer and not from it. And another group, that may include Mr. James, will likely succumb of their more aggressive non-cancer related illnesses ( heart, lung, diabetes, etc.) long before their dormant CLL reawakens.

What is true for our varied mortality also rings true for our disparate morbidity. For a blessed few, CLL is a non-event and life rolls on with little change. For most of us, its impact varies from devastating to a minor annoyance.

Finally, there is no excuse for a physician who doesn't listen and doesn't know.

Stay strong. Ask your doc or GP about Modafanil for your fatigue- it is used widely for cancer related fatigue in the USA and can be a big help, and if they don't know about it, ask for another opinion. And finally, blanketing fatigue is a legitimate indication for ameliorating therapies.

Brian

bkoffman.blogspot.com

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I was in the 'blessed few with a minor annoyance' group, for 14 years... then the needle swung to devastating... don't assume.

CLL can turn very nasty, very quickly... I have lost 9 Richter’s friends this year..

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Couldn't agree more. Remain hopeful and vigilant.

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thank you

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