I can imagine the wait is tortorous, but I’m pleased to hear you feel a little more relieved. Do you have any questions about watch & wait, or anything worrying you?
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Hi, I think it’s just going to be getting to grips with what might be as a result of Lymphoma, what might be my other conditions (chiari and lupus) and what might just be normal. I have got another urine infection so on antibiotics. It will just be good to know the staging so I know what I am dealing with and maybe what I need to look out for.
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Yes, I think we are complex beings and it is very difficult to attribute a symptom to just one of our different conditions. As I believe infections are a common symptom of Lymphoma you might attribute them to that or are they a symptom of another condition you have or are you just very run down??? It sounds as if you have questions forming in your mind. What helped me was to write down all my fears and all those questions before medical appointments when my mind goes blank and then either you, or if you have someone with you, writes down the responses. Be kind to yourself your body has gone through a lot emotionally and physically. Please do let us know how you get on and we are all here to support you.
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So I had my second appointment with the hematologist today. She said the lymph nodes below my diaphragm are also affected (my original scan was only of my chest) The nodes in my neck and armpits have grown slightly. She said I could start treatment now but she would rather do another scan in 3 months and if there is more growth start treatment then.
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Hi, thanks for letting us know what the Haematologist told you today. Now you have had just a little while to absorb the information what are your fears, thoughts and feelings?
Pleased I am not having treatment now, however a little concerned the nodes in my neck/armpits have grown already - is this normal?
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Hi, I don’t think there is normal. The only thing that is normal is that I expect most of us would be feeling at least a ‘little concerned’ when we receive news that something has increased. Now I think and hope we are all looked at as complex individuals and medical teams take all sorts of things into account before discussing the way forward with patients, including medical history, blood tests, other tests, examining the patient, age, how the patient says they feel etc. Don’t forget the Bloodwise support line on 0808 2080 888 are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message - they say they will get back to you within one working day. Please keep posting how you are and how you are feeling and thinking over the next 3 months, we are all here to support you.
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Dear Stella, the watch and wait procedure is very unsettling for most people in your situation so your feelings are totally normal. In a way all blood cancer patients are in a similar situation as you once they reach remission of their condition it’s the dreaded 3 monthly review which may last for quite a long time. You sort of live in an emotional limbo of hoping for the best and being concerned about the future. But it will get easier with time and eventually become a background noise in your life and not something you think about all the time. It just a question of adjusting your mindset from one of fear to one of acceptance of you new reality. I hope this helps.
Alfie
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Wow, Alfie and @SP7, Alfie you just manage to say it so well, thank you.
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How have you been since your last appointment Stella @SP7?
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Not too bad thanks. I struggled last week with the humidity but I think that was due to my chiari causing an awful headache. Work is busy as we approach the end of term so fatigue is a big issue but okay other than that. Hope everyone else is as well as you can be. Stella
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Pleased to hear you are doing ok. I like sunny weather but humidity is horrible. My nurses at dialysis are from the Philippines where humidity is a big problem and they love British weather.
Best wishes alfie
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