Short update. Back in hospital again. Had a bad night last night with a lot of sweating and pain. This morning I called my gp and got a letter to go straight in (thanks for the lift Seb). They have taken my history again and want to do some more tests, ones they didn’t do last time. Cat scan echocardiogram and some kind of injection to the stomach which sounds fun and not at all painful….
The registrar compared notes with Dr Murray’s recommentions this time and resolved to carry out the tests suggested. They are also talking to professor Gribben tomorrow. I have asked them to check my spleen when they do the cat scan so I don’t have to have two.
Definitely staying overnight but this time I have a bed and my own room, so things are looking up. Let’s hope we get to the bottom of this.
Sorry for the continual updates, just easier than telling everyone one at a time. Hope you are all well in the real world. Bit of a scorcher!
Ross Jones said:
Sorry to hear this Marcus – hope it gets better soon!
Anna Mary Ellerbee said:
Happy they are checking you out good. Will be interesting to hear if your problems have anything to do with SMZL. Hopefully you will have a clearer picture and know what the next step should be. Do keep us informed as you can. Hoping for the very best for you.
Dear Marcus, First of all I would like to introduce myself: my name is Elena from Pamplona (Spain), 56 years old, proud mother of wonderful 26 year old triplets (2 boys & 1 girl) and diagnosed SMZL since February 2018. When my doctor told me this, I didn’t know the meaning of the words Lymphoma, splenic and marginal, only “zone” was in my vocabulary…
First shock was terrible, they began a lot of tests and analyzes that at first it seemed that it was going to be a mantle Lymphoma. Although they told me not to investigate on my own, I dedicated myself to looking for as much information as possible about the SMZL and thus I found your wonderful blog: You cannot imagine how happy I am and how much I learn with you!! Always read your new ones!!
I wanted to write you long time ago to tell you this and thank you for writting it but my English is not good…so I apologize both for the mistakes and for not having written you before.
I am still without treatment for now, or rather with the watch & wait treatment, which is sometimes very difficult for me to understand (I’ll explain why another day…).
Today I just wanted to thank you for your help with your blog and wish you good luck, from the bottom of my heart!!
Thank you very much for your kind comment. Comments like that make it all feel worthwhile.
I’m glad you have not had to have treatment yet and you are well. Triplets must have been a handful, but very rewarding now they are grown up!
It is always a shock to find out, and they struggle to diagnose our condition sometimes. Often confused with hairy cell or mantle!
How are you feeling at the moment, all good, counts positive? Watch and wait is tough, I’ve been on it for over seven years, and you often feel like saying, just get on with it! Ah well, probably better not to if the counts are good.
Anyway thanks for reaching out. It always makes my day when people do (like a lovely couple of ladies a couple of days ago).
Dear Markus, you always make my days with your post!! Thank you again!! Elena
Anna Mary Ellerbee said:
Elena, I am Anna Mary Ellerbee and live in USA. I have SMZL also and have been following Marcus for a long time now. Just want you to know we have a Facebook group, and Marcus is a member too called SMZL Support Group. We would love to have you join our group and I do think you would find not only answers there, but also people in your same boat who are struggling with the same issues you are. Please join us. It’s nice to “meet” you here and hope for the best for you too.
Dear Anna, Thank you very much for your comment!! I Belong to this Facebook Group, I read all the post, I learn with all the comments and with all of you. But it’s very difficult for me to express my feelings in english which for me is a great frustration!! Thank you again Anna and all the best for you!!