How CLL has effected my life

[jangreen]

I am now 56yrs old and was diagnosed when I was 50 in 2006. I was unhappy in the way I was told by the phone by my GP who just dismissed CLL. I have since changed my GP.I was sent after some pushing by myself to my local hospital. Although I was happy enough with them I asked to be referred to a specialist at a London teaching hospital (I got a list of specialist from CLL support group). The cancer grew slowly until May 2010 when I went through a very stressful event. In the same month I experiance night sweats. The next blood test (end of July) was the first bad one I had and was called in to have another one. After discussing the results of the second one my specialist said we would wait a month and see. However, when I saw him in Sept 2010 he felt the time was right to start treatment. I was put on a trial to try to clear up as much residue as possible. Although I was well prepared for Chemo (I had visited the ward, had tests on the ward and met the research nurse) it was the worst time of my life. I was very sick even though I was taking anti sickness drugs. Was admitted to hospital for a couple of days and on another occasion was stablised on the day ward. I rang the support groups phone line and was given strength I needed. After chemo I had no strength at all. I had a problem with my immune system and was given injections throughout treatment but even when treatment stopped it was still a problem and I had to have another bone marrow biopsy with lots of blood tests. They still do not know what was wrong but my immune system it just about OK now.I went on a Survivors course at my local hospital which helped but really it has taken about 18mths to get well It didn't help getting shingles 8mths after treatment. I have found that as a patient you have to be pro active which isn't always easy. I have had the love and support of my husband without which I would not have coped. I do stay in good spirits, I am a glass half full person and wishes everyone a Merry Christmas and a Health New Year

[Newdawn Administrator]

Thanks for sharing your experience with us jangreen, you've obviously had a tough time with treatment but I sense you've had tremendously strong support throughout and your personal optimism has brought you through it.

The way in which we are told of our diagnosis is such a defining moment in our lives and it's so bad that you had an insensitive experience. It never ceases to amaze me how certain medics can still remain uninformed about the impact of CLL and deliver the news as if it's a cosy long term condition that we should go home and 'forget about'. Hopefully those days are changing and I hope the work and messages we can put out here helps with that aim.

The 'Survivors Course' at your hospital sounds very interesting, I haven't heard of that before.

Hope you have a wonderful Christmas filled with renewed hope.

Newdawn x

[Donegal]

Hi Jangreen - I had a similar experience. Told in an offhand manner by a houseman that my Leukaemia was not a bad type - I had no inkling and got a big shock at the L word. That was about 14 years ago. I had Chemo last year- bad experience as you said but not with as many complications! I had the Shingles before starting treatment! Today I am 15 months post treatment and beginning to live life again - walking,drinking green tea,far more energy and life is looking much better. Enjoy Christmas - life is good!!!

[David39]

Hello jangreen and thank you for posting. I can relate to some of your experiences only too well. The way one is informed that you may have CLL does seem to be something often handled badly by the medical profession and I do wonder why. Do medics become complacent about the chronic, rather than acute, nature of the illness and insensitive to the huge impact on sufferers of the news that they have any form of cancer? I don't know.

I received the initial news in a letter following a routine occupational health check. It was covered in two lines which said I might have CLL but it didn't need treatment yet. It was followed up by a 2 minute conversation with my GP who really knew nothing about the illness. Thankfully the consultant haematologist I saw at my local hospital was a lovely lady who spent an hour with me talking about the ins and outs.

Chemo affects different people in different ways and you clearly had a very bad time with it. I had an unpleasant first cycle, though not nearly as bad as yours, and I can relate to the misery of the sickness and debilitating fatigue. I completely agree with you that as a patient you have to take a proactive role in the management and treatment of your CLL, rather than just 'be done unto' by the undoubtedly well-intentioned medical profession.

I'm glad that you are undaunted by your experiences and remain in good spirits. Best wishes to everyone for a peaceful Christmas and a healthy and optimistic 2013.

[2003UK]

Hi Jangreen

I can only relate to part of your experiences as fortunately I am still in the watch and wait phase and luckily I have not had your treatment experiences.

Although it was 9 years ago I can vividly remember being diagnosed.

I had had a minor gynae op and I still did not feel well after about 4 months. Again I was really affected by receiving the diagnosis by letter and the word 'severe' appeared in lurid zig zags in my mind.

The gynaecologist took blood tests and when I returned to him he said 'I have never had to tell anyone this before but you have chronic (which again appeared in lurid zig zags in my mind) lymphocytic leukaemia (my mind immediately thought an immininently terminal disease).' Then he said 'I cannot do anymore for you (confirming my thoughts) go and see your GP.'

I was then in shock, and I freeze and my body shuts down at such times, and the next thing I remember is leaving his office, although knowing me I said 'thank you' to him!!

I then remember his nurse running after me, obviously concerned, and the gynaecologist calling her back which I interpreted as 'there is nothing more anyone can do for her'.

Co-incidently I have just been diagnosed with severe osteoporosis by my GP on the phone, and although I knew something was seriously wrong, it again really hit me and I felt, and still feel, really dismissed, lonely and tearful about it.

Today is good, although the weather is what you might call inclement.

Festive greetings to you and all from another glass half full person.

2003

[jangreen]

Thanks for all your comments. Although we share an unpleasent experience being about to "talk" to someone who understands is really important to me.I find it makes you realise that you are not alone and to trust your own instincts. If it hurts you it hurts others.