Thank you that’s really helpful and I’m
So pleased that you have done so well. I’m keeping positive!
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Gresy post thank you.
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I think that i have calmed down enough to post again. Saw the Haematologist last Tues. One of the worst consultations i have ever attended. I was quite frankly expecting a little sympathy and understanding having been told that i have leukemia but no, he was brusque, curt and downright rude at times. He did agree that i have probably had it for around 7 or 8 years taking into account my past blood tests and that my symptoms of excessive bouts of fatigue, night sweats, weight loss etc have nothing to do with it because my blood works looks stable. He did however say that he would send me for a scan then decide. He said that if he puts me on w&w after the scan that i would get a blood test once a year, anything else that happens see your GP. So, still a little depressed but carrying on. Sorry to burden you with this but i had to get it off my chest.
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I am so sorry that you have had this experience mine could not have been more different with an open hotline to the clinic if I am worried about anything which is as it should be. I’m sure the nurse advisors on here will be able to advise on next steps
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Hi @Artstudio, I’m so sorry to hear about your consultation- it’s certainly no burden for us and I’m glad that you have reached out to share your experience, so thank you for doing so. Understandably this sounds like it has been a very disappointing experience for you. My understanding from previous posts is that you did have a list of questions/concerns to go through with them, may I ask if you feel that these were addressed? Have you by any chance been allocated a Clinical Nurse Specialist (CNS) that you might be able to approach?
I’m wondering whether you might find it helpful at all to give our Support Team a call to talk this through- if so, please don’t hesitate to call us on 0808 2080 888, and we can go over this with you, should you feel comfortable to. Please do take care of yourself and keep reaching out.
Best wishes, Tanya.
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Oh @Artstudio I am sorry about your experience with your Haematologist, you must have left there so upset and deflated.
We are here for you to get things off your chest.
@TanyaBloodCancerUK has given you a brilliant reply so all I can say is that sometimes I feel that some people miss out on the people’s skills training.
Please look after and be kind to yourself
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Hi @Artstudio. I’m so sorry you had an awful experience with your haematologist.I would be feeling the same.
Please give the support line a call for advice. Perhaps discuss seeing a different consultant?
Have you got a date for the scan?
Please take care.
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I will have a chat with them, thank you so much KayC.
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Hi Tanya,
Yes it was disapointing and i did have a list of questions but as he was poo pooing everything i was trying to say it threw me and i lost track. No, i have not been allocated anything or anyone. Thank you, i will ring the support team.
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Hi Nichola75,
No i dont have a date yet and i will be having a chat, hopefully with my GP about a possible different consultant. Thank you.
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Thank you Erica, he seemed to have missed the people skills training. At one point he seemed annoyed that the ‘GP who refered me to him couldn’t add two amd two together’, no respect for even his own colleagues. Anyway, thank you again.
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Good morning been diagnosed with Chronic lymphocytic leukaemia (CLL) In may, been found early and thankfully don’t fell I’ll, how ever I’m very tired. Im on watch and wait, is it normal to feel fatigue this early
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A great big welcome @Ali I am so glad that you have found our forum.
I also have Chronic lymphocytic leukaemia (CLL), I was diagnosed 18 yrs ago and I have always been on watch and wait and I count myself a very lucky girl.
However one of the symptoms that I was diagnosed with was fatigue. So I still suffer from it, but I have really got to know myself and I manage it on a day to day basis. Since diagnosis I do not deal with what personally stresses me well, it gets all too much.
My fatigue can be brought on by me overdoing it emotionally, physically or practically.
It can come on immediately or up to 48hrs later.
Sometimes I need a nap and at other times some fresh air and suitable exercise helps.
I use my energy earlier in the day and I don’t do evenings.
I am more than happy to answer any questions you might have and share my experiences.
Please take lots of care of yourself and be kind to yourself and please keep posting
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Hi @Ali and welcome to the forum family. It’s great that @Erica can share her experiences with you. I think it really helps. I look forward to hearing more about you x
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Hi I am doing well. Had an appointment at the hospital this week as I am taking part in a 5 year Oxford research study into disease progression of Chronic lymphocytic leukaemia (CLL) so good if that helps people in the future. I feel tired a lot but have joined a spa with my husband so we can do appropriate exercise and relax too x
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Oh @KayC I am glad that you are doing well and thanks so much for taking part in a 5yr Oxford research study.
Joining a spa with your husband sounds wonderful to me, enjoy spoil yourselves and keep posting.
Hi @Ali I have been thinking about you and I just wondered how you are doing now?
Look after yourself
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Good morning sorry not been on not the best with Technology, had to reset password, I’m ok good days and some not so, but I’m getting to know when I just need to rest, not got to see consultant till December so I guess that’s good, I did ring my nurse the other day as I can feel another swelling on the right side of my neck that has come up after my first consultant so she was going to send him an email. Not hear anything so hope it’s ok
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Hi Ali
The tiredness is frustrating isn’t it ? I’m the same don’t see consultant till December . I don’t think I have worked out how to find the balance to cope with the fatigue yet I tend to carry on as normal then realise how tired I am so I need to get better at it. Good that you have got that direct link to your nurse for advice x
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