'The Never Ending Tale'

General chat
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Further to my Bells Palsy that never was, post. I had a two needle biopsy today, in the hope that my ENT and Haematologist could begin some type of treatment, for my Chronic lymphocytic leukaemia (CLL) and rogue tumour.

Not to be I’m afraid, as the Radiology Doctor could not access the tumour area to take a biopsy, as it was inaccessible.

He did manage to get three samples from my right neck lymph node. which at least may assist my Haematologist to progress to actual Chronic lymphocytic leukaemia (CLL) treatment.

Last week she took Bloods and said that she was happy with them. As it was a voice message, with language difficulties, I’m afraid, it was hard to decypher exactly what she said.

The gist of the conversation was that once she had the Biopsy of my right neck lump, and with the new bloods, she would begin some kind of treatment. (Hopefully)

With no biopsy result for the tumour, my options appear to be even more limited. I am seeing my GP tomorrow with a view to having another biopsy, perhaps privately, if needs must.

Without any treatment of the tumour, I would think it will be a watch, wait, and monitor situation.

I know this is perhaps outsides the usual request posts on this wonderful forum, but any thoughts, or views, by anyone, would be, as usual, very much appreciated.

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HI @Vindicatrix my thoughts are that the title of your post says it all.
I cannot imagine your frustrations, uncertainty, thoughts and feelings.
I however like your plan with your GP tomorrow.
Please do let us know how you get on and don’t forget perhaps be pleasantly assertive.
Take care of yourself

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‘Pleasantly Assertive’, In my book, Erica, that should be an 11th Commandment. :grinning:

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Hi @Vindicatrix.
You’ve had so much going on with biopsies and tests - it must be a really challenging time, especially as you want to get things moving.
It’s a tough one isn’t it. My thoughts are to discuss how you are feeling with your consultant. My consultant always says I know my body best and if want to talk about anything I can. I trust my team so would always follow their medical advice as I would hope they are doing the right thing for me at that point in my journey. However, if you aren’t confident and need a second opinion then that’s what you should do. I dont think there is anything wrong with that either.
I don’t know if that helps :blush:

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Thanks Nicola, I agree with you about trusting your team, and you appear to have a good one.

Unfortunately, my local Haematology department has only one locum working for them, and she tells me that the hospital has difficulty in recruiting, both, in Haematology, and ENT.

To be fair, my particular locum is doing as much as she can for me, but is frustrated I think by the added problem I have with this tumour.

That is why I am going down the 2nd opinion route regarding the ENT part of all this. Until they find out if it’s benign or cancerous, it is difficult for them to treat.

Thanks again, and I hope you are enjoying some good health yourself at the present, this Chronic lymphocytic leukaemia (CLL) of ours is has its ups and downs, does it not.

All the best. Ron

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It’s hard when you don’t have a consistent team.
I initially had 2 operations and radiotherapy for my lymphoma. In to my 6th year of active monitoring. It definitely has its ups and downs.
Keep us updated on how you get on :blush:

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You certainly have had your hard knocks Nicola, but I am sure we will all persevere for what’s best for us, (And smile as we do it) :grinning: Ron

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