Living with CLL

1 minute read time.

Since my mastectomy i do check regularly for any changes though it isn’t very easy as my left arm and hand are badly affected by MS. My husband checks for any changes too. I’ve just had my 6 monthly CLL check. Apart from the white blood cells everything was normal. The w.b.c. is 13 this time. Even though only 3 above the accepted level it has suddenly brought everything back and my brain is working overtime! Before lockdown I felt so healthy and upbeat too. I think because I’m classed as elderly and vulnerable it preys on my mind, it is never far from the surface and keeps bubbling up. I must be a nightmare to live with! The last few days of extreme temperatures can’t have been easy for anyone particularly those undergoing chemo. I also know that it affect MS sufferers adversely so why aren’t I being logical? As restrictions are lifted and life gradually returns to some semblance of normality things will get better for us all I’m sure. My next mammogram and blood checks are not until December so I must try to live life to the full and enjoy being able to see my family and friends again. We must all be positive however hard it is and whatever life throws at us otherwise we aren’t helping ourselves or anybody else

Anonymous
  • FormerMember
    FormerMember

    I have a question when you say you had your w.b.c.  checked and it was a 13 is that good? I'm looking at my blood work I had done when I was hospitalized in 2019 and mine was 6.6. But I was not told anything different. I have not been diagnosed with any type of cancer. But I'm convinced that I have something going when I had my mammogram done I have cyst alot in both breast, I'm now going thru lung and heart problems but any of my doctors are concerned should I be? I feel that something is going and no one wants to tell me. Should I see Oncologist to be sure. The cyst described to me were fluid filled they were not solid and I was told not to worry about it

  • Hi this is my first post. Hope I don’t make a fool of myself. 
    6 weeks into my treatment first four weeks I had not a clue what was happening to me and my body.

  • So 6 weeks into I’m getting sort of used to have CLL.I had no clue what it was how I got it how my treatment my head was full of so many different things question constantly asking myself how will I cope how will my family cope money,love,work,life so many things.it took the doctors from October to January to find out what was my condition we know it was CLL but they had to get the correct diagnosis & treatment for me. It was so hard going to the hospital getting all worked up only to be told “ no sorry the results weren’t back.In January 7th at last we had the results back CLL TP53 A Typical. we had a name a type and a treatment at what a relief. I started that day with lots of different types of medication some I can spell lol.

  • I do hope that’ll goes well for you.