UK CLL Forum, UKCLLFORUM

Patient Profile for: Robert Cork



General
Mutational Status
Positive Prognostic Markers
Neutral Prognostic
Markers
Negative Prognostic
Markers
Chromosomes
Clinical Presentation
Drug Allergies

DOB:
Male

       

 


 


General

I was diagnosed with CLL in July 2006.

I had previously had a bout of pneumonia about 7 months prior to that.

I had felt as though I had, after a long period of feeling knackered after the pneumonia, been getting back to my old self. But then the sweats and weight loss began again (the weight loss I don't mind as for me it's no bad thing) and the fatigue I have so often felt before was back.
This time a visit to my GP had me off work with fatigue, an appointment at the hospital and no other probing questions asked (I found later they already knew/suspected I had CLL).

Over about 2-3 years before this I had quite a bit of time off from my previous employer due to what I thought was stress related things - fatigue, night sweats (thought it may down to drink but I hardly touched the stuff over that period apart from the odd blow out), feeling low and having bad moods and just not being my usual self. In fact after a 4 or 5 bad nights every other week with the sweats and the nightmares I must admit I did think I may have been going mental.

My GP and I had many a near fall out during this time as I felt I didn't need tablets for my head and I refused to take anything or got to counselling as I felt all I needed was some rest - and the rest did work. And I was back to my old self after a month or two off each time, I could feel a change in myself, normally, after the first week.

Looking back, and knowing now what I know, I suspect this was the first of the CLL showing.

When they told me it was CLL, after the shock, I was quite relieved (although perhaps that is not the right way to describe it) to know that I had been right all along and I was not going insane.

Things are pretty stressful form though so I can see how any GP would originally have missed CLL.
I am in my late forties (48) and I have a partner (44) and two children. A boy 10 and a girl 8.

When my son was born my partner did not come out of the pregnancy too well and was swiftly diagnosed with Multiple Sclerosis. Although things for her are not too bad yet (compared to some) it is always present and as each year goes by there is deterioration in her health and mobility. She is also now Diabetic which also brings further complications and although she bears it all well it can be a bit fraught in the house.

I had always thought that whatever happens to her in the future my shoulders would be broad enough to carry the weight and bring up my wonderful children. I will be there for them as long as I can be.

Again, if I'm particularly fatigued, I hate how sharp or dis-interested with them I can be (and over recent years it has too often been the case for all them and for too long). As they often get the same responses from their Mother who has a more consistent everlasting fatigue than I can imagine - at least I have good days for long periods.

Yet through it all they remain cheery wee souls and I hope I am around for many years to tell them just how much they mean to me and how they do drive me on to do my best each day.

My present health status is - I am on a "wait see approach". I am more and more alarmed at how open to chest infections I am (and now it comes on so quick) I have also started to get more fungal infections (herpes 2) as well.

I had my last check up 170309 and do not have to go back for 4 months.

When I wake up the sunny days are still outnumbering the dark ones but I'd guess I have about 6 or 7 nights a month when I'm either mildly moist or pretty sweaty.

These nights increase when I am due to catch something. Again compared to others I am still lucky.

I'd love to give a more detailed update on my health but I go for my check-ups and don't really know what to ask. Well, apart from how long do I have?

There's also part of me that doesn't really want to know. I've read what I can on-line and some of the treatments that may be ahead I can wait to worry about when it's time and not until.

But I will be back to this site as it's good to have a chance to see how others cope and feel about things and if I can help I will.