LUPUS UK
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Knitter required?

My good friend just told me I need ripped out and re knitted. I had a lump in my neck, went to my doctor who sent an urgent referral to see an ent doctor, saw him on 23rd April, he sent me for a biopsy which I had done about a week later, the doctors that did it said its probably a thyroid problem and not to worry. I was hoping for maybe hypothyroidism but alas no, over a two week wait I was getting worried, my mouth has been so dry I am choking at night, he also said there is is grey area in the salivary gland, I had a salivex capsule stuck to my mouth as I cudnt have been able to lie for half an hour without choking. He asked me if I've heard of schoegrins? That was the second doctor that asked me that in a week. My rheumy only goes with positive results so I've not been diagnosed with it. Anyway as I'm packing my bags for a nice wee holiday which would have been on 19th May, I got the dreaded call to say I have a lymphoma! I've been in shock for a few days, an hour after my call I got an appointment to see a specialist the next day. The Hemotologist I saw was lovely and said radiotherapy would shrink it but with me having autoimmune problems it could be more complicated. They have to do a bone marrow to make sure it's not a plasma cancer and a full ct scan, my phone will be stuck to my hand all next week. I am hoping my immune system keeps doing its usual and gives negative results as a plasma cancer is harder to treat and it's more aggressive treatment. Doctor also noted the grey area in my salivary gland but said they would deal with it later. Had an awful night last night being sick and that's before my treatment, I feel positive this morning hence I'm writing this post. Will keep you posted, have a great week xx

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Hello Lizard28,

Gosh, what a terrible few days you've had and are amidst. I was drawn in by your title (I'm a knitter), but it was quickly obvious this was far more complex and distressing. I'm so sorry to read this has been your diagnosis. That must have been such an awful shock for you.

I just want to let you know that I know the horrible feeling. 6 years ago I had breast cancer diagnosed, also with a holiday looming that had to be cancelled. The lead up to the treatment was one of the hardest parts. Phone always at arm's length as you try to get every possible thing done you can think of. It's just unbelievably stressful. And more so as you think of all the other places it could have spread.

Sending you all my support at this very sensitive and difficult time. Everything should move very quickly for you now. If that is any consolation... I'm really so sorry.

Panda x

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Thank you so much Panda for your kind words, I just wish I knew what was ahead of me, my phone hasn't left my hand all morning and hope I don't have to wait much longer, I'm trying to stay positive xx

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I hope you don't have to wait much longer either. It's a hard wait.

My experience with the NHS cancer team was exemplary every step of the way, if that is of any help. They really will take care of you. And when you don't have the strength to feel positive all the time, someone there is always willing to be that for you.

Let us know how you get along. xx

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Good Morning,

I started to read your post yesterday and got side tracked by something. I'm so sorry I didn't carry on and get back to you! I've also had breast cancer in the past I think over 10 yrs ago now. It's not the same but it carries similar worries. Funnily I was just about to go on holiday as well. They took the biopsies (had two lumps) and I went away to Scotland. The children were very young and I could only imagine the worse for them. But here I am yrs later and grown children. Again it's a different illness, but the worry is the same. I truly feel for you 🌹

I pray you have the absolute best treatment they have. I've been reading up a bit on Lymphomas in the neck and there are very good prognosises. I will pray for you if that's alright with you. ❤

Feel free to message me any time. I'm a good listener...

Big gentle hugs

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Thank you so much, I just kept thinking the lump will go away, but alas no. I'm just worried now about the plasma cancer doctor said, this old immune system gets into everywhere, I didn't know it could make things complicated but I'm trying to just think it's a lymphoma and as you said the prognosis is better than most cancers, thank you for your support, it means a lot xx

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❤❤❤

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I have just read your post, I’m not very up to date with my emails. What awful news for you and such a shock. I do hope that your next appointment will help to put my mind at rest.

Very best of luck and good wishes

Foss

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Thank you for your reply, just had my bone marrow tests done today which wasn't too bad, was dreading it. Now the two week wait for the results.

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Hi Lizard28 💕💕💕💕

I’m soooo sorry to hear about your lymphoma diagnosis. I just 🙏d for you dear. I hope everything goes great for you. Take care and sending gentle gentle hugs 🤗 love 💕 and kisses 😘

😊🌸🌿🦋

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Thank you honeybug for your kind reply. Hugs are very much appreciated xx

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So glad to know that it wasn't as bad as you thought. It sounds utterly dread-able! Way to go you, just putting your head down and getting this underway. Your courage is shining through. Do some lovely things for yourself these next 2 weeks, k?

Panda x

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Thank you Panda2, this wait is just awful, I have a full ct scan on the 5th June then hopefully the 11th it will all be clearer. Thank you for your words of encouragement, it's much appreciated xx

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