Thank Willow I didn’t know really know where to get info and sites give you scary prognosis I’ll certainly read up on BCUK and MPN voice Thanks again Ginny
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Hi @Ginny421 when I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18 yrs ago. I found a site on Google that said I had a 5-10 yrs life expectancy and I am still here.
Firstly I had this weird sensation of wanting to pull the Blood Cancer out of me.
As @Willow knows I see things very visually and now I think of it as the War of the Roses inside me, the red and the white being my blood cells.
Yes, I still get anxious before my blood tests and all medical interactions, but we are only human.
Be kind to yourself
Hi Erica That’s wonderful I really feel heartened by your words What a great analogy Thanks Ginny x
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Interesting and reassuring to read this thread. I have been on 7x 500mg Hydroxycarbamide per week for 4 months, and recently had my first post HC blood test. From over 800 platelets it had come down to 560 in 8 weeks, which I thought was very good. My consultant seemed to have other ideas as he wanted to double my dose! Why? I asked! Because it often plateaus!! I said, am I not on this for the rest of my life. Well, yes, he said, until it doesn’t work anymore! My goodness I thought! I said I was not at all keen, and he came back with 'well it is your choice! That is seeming to me more and more like a cop out, or an I don’t want to discuss this with you comment. I said I am feeling tired on this dose, and I have decided to stop teaching singing in July, so I am not prepared to consider a change until a second blood test, and until I have stopped teaching. He said I would be having a different consultant for my next consultation, which may well be a good thing. I think that it is possible the platelet level will have reduced to below 400 by the next blood test in June, and I was concerned if I am to be on this a long time, that the platelet level would go too low, and then we begin a see saw, trying to stay in normal parameters.
Why, I ponder, do I have to feel I am being rebellious by asking questions, or questioning procedures. I haven’t had this problem with any other consultants for other matters. Being an ex nurse (from a long time ago) means a little knowledge is a dangerous thing, but it also means I am unwilling to accept without question.
I too have had difficulty with the concept of a cancer without a ‘cure’! A cancer which has only more recently been called a cancer. A cancer to be managed, not cured.
Because of that, I am especially concerned to be able to balance as much of a normal life with the need to have medication which does have effects. I don’t want to double a medication if it is not absolutely necessary, especially if that could increase the possibility of side effects.
Meanwhile the tulips are nearly over in the garden, but have been performing beautifully, and I am staring to get back to doing more drawing! Flowers wait for no-one, and demand to be drawn or painted!
Thank you all for your stories!
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Hi @Modesigns I certainly would not call you rebellious, it sounder to me that you were being pleasantly assertive and logical in your thinking and questions.
Perhaps your consultant missed the ‘People skills course’, are not used to someone asking questions or you just got him on a bad day, as you say you have never had this with any other consultants.
I am also one that feels seeing another consultant is like getting a 2nd opinion.
I also ponder a lot usually whilst I am out walking.
I also have had a lot of difficulty with the concept of having a blood cancer that can be managed, but not cured. When I was first diagnosed I just wanted to pull the blood cancer out of me, I am not sure quite how mind you.
Yes, the tulips have had their day.
Yes, flowers wait for no-one and demand to be drawn or painted, go forth.
How do you feel about stopping teaching in July, end of an era?
Look after yourself and enjoy your artistic talents.
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Hello @Erica! I hope you are enjoying the warmer weather and a little bit of sun.
My normal consultant doesn’t easily engage…so he may not have done the ‘people skills’ course, or he slept through it perhaps!
I am glad to be stopping teaching in fact. I have some really good students, and I will miss them, but I don’t have that extra enthusiasm, energy and inspiration that I have had, so I think it is time to hand them over to someone else. At 75 I may not have had it anyway! Chemo makes me more tired, and it is easy to justify stopping because of that! Sometimes good to have an over-arching excuse.
Walking ponders are excellent aren’t they! Silly thing I don’t remember all the things I pondered until I go out on another walk! All best, MOXX
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