The listlessness still prevails, but thankfully worrying about my results although unavoidable, was a waste of energy, and to be honest I was being a real pain in the backside for a good few days before (unfortunately for Ade). This was mostly due to my bad run episodes in November, so I had convinced myself there had been a change for the worse.
Luckily it all remains stable, and the gallium scan showed no new aliens either, you can imagine my relief. Following a discussion about my episodes and the associated symptoms, especially the excruatiating pain with my consultant it was concluded that I am showing classic symptoms of obstruction. So my primary alien is hopefully coming out before it can cause a proper blockage, I have an appointment to see the surgeon on the 12th January and discuss the procedure. I now also have morphine for the pain, but at the moment things are behaving, so thankfully I have not had to resort to it. Long may that continue, because if I have another really bad episode I have to go straight into the Christie.
On the pain front, I can safely say that I have never experienced such extreme discomfort, being constantly on the loo is nothing compared to the cramps and bloating that this can cause. These episodes have a definite cycle for me too, they usually start early morning, about 2am, and if I’m lucky last for about 12 hours. Which subsequently leaves me washed out for about 3-4 days, and I need to wear loose clothing until the bloating subsides, but I do know that compared to others with this I get off very lightly, for which I am very grateful. Although, emotionally I continue to be a bit up and down, but I put that down to the hormones being a bit haywire at the moment.
Although I had already attended my first Christmas party on the 2nd December with some of the volunteers from the Donna Louise Trust, which was great fun, my heart was not really in the Christmas spirit. Then we had our friend Janine’s special birthday party on the Saturday, which included a quiz, and we do love a quiz. I can’t remember how many teams there were, but we didn’t do to badly at all. I liked too that even though it covered a number of categories, it was all based around the birthday girl, very clever:-) Also found this group of posers too!!
However, following my positive results and jab, I was finally able to get my head into a Christmas frame of mind, even the post jab lag was an unusually lightweight one this time. We went to the Christmas market in Birmingham on the Saturday after, with our muckers Greg & Shelle, it was a bit of a wash out weather wise, but that didn’t stop us having a good time. We didn’t spend much time wandering though, it was more of an eating and drinking fest!! Then on the Sunday we went to see Jools Holland and his big band, which as always was brilliant, its great being able to dance in the aisles, and it seems to be becoming a bit of an annual pilgrimage.
Cards were finally written and posted, decorations were put up in stages and the mince pies were made, and I did my last stint of the year at the Donna Louise. Then I met up with my old work colleauges for a lovely Christmas lunch on Wednesday 21st December, and the final food prep is now properly underway.
So I would like to take this opportunity to wish you all a very Merry Christmas, and best wishes for the New Year, and I expect my next blog will be after we have done our sponsored walk for the NET Patient Foundation on the 8th January. If you would like to sponsor us and help us to meet our target, all donations will be very gratefully received, here is the link:-)
4 thoughts on “Trying to get into the Christmas Spirit”
I found and followed your blog as my (now ex) husband was a NET patient, he had all those issues you mention about blockages for several years, without diagnosis. His liver NET was seen on an ultrasound and dismissed by the scanner as being a granu-something, one of the GPs even accused him of being an alcoholic due to his liver issues! Hopefully removal of the alien will make things much more comfortable for you.
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Hi Emma, thank you.
Yes a good few GPs need to be better educated, I had a couple of scans over a few years where I was told I had cysts on my liver which was nothing yo worry about. Makes you wonder?
Have a lovely Christmas
Merry Christmas to you and yours, Kath. I’m glad the pain has subsided. 🙂 I hope surgery will be in the distant future if at all. Maybe you will get lucky somehow? 🙂 I would love to see a few pictures of that Christmas spread that I know you are preparing! 😀 God bless you! Ed, Lisa and David
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Hi Ed, I think it’s a certainty, I was always a watch and wait andbetter out than in. I will send you some pics, and wishing you, Lisa and David a great Christmas. It’s definitely for the kids, big or small🎅🏻🎄x
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