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It is tough going at the moment. I am still writing, though I seem to keep finding other things that need doing.
Since the original episode, I have been on steroids now for nearly five years. This is making my consultant nervous, so he has decided to do something drastic. Since that time, medical techniques have moved on and there are apparently new ways of dealing with my condition.
Basically, it amounts to chemotherapy.
This all came out of the blue at my last checkup, which was in late July. He suggested a course of Rituximab[1], which is a drug often used for autoimmune diseases, particularly Rheumatoid Arthritis. He suggested that this would happen during August, so we went ahead and booked a holiday in the middle of September.
So, no letter arrives until three weeks later, giving the first date as the 30th August and the second on the 13th September, 14 days later. We're booked away from 10th (Monday) to 20th (Thursday) so that wasn't going to work. I made a phone call and managed to get the dates brought forward to 20th August and 3rd September.
The first session lasted eight hours. For those of you fortunates who have never experienced such a thing, you sit in a comfy chair for eight hours connected to a drip. You can't really use the arm the cannula is in because the pump gets huffy and stops, which means the whole thing takes even longer before it's over. I took my Kobo e-reader, which was fine, I can use that one-handed (no sniggers at the back, there!).
There is a bathroom nearby, but you have to wheel the drip stand and pump in while you do your business, which can become awkward. Lunch was offered, but the selection of sandwiches wasn't very inspiring. There is also fruit and yoghurt, etc for those that want them.
They take blood pressure, temperature and pulse every hour or so to make sure you don't have an unfavorable reaction to the drug. You also get given an anti-histamine and paracetamol, plus a lot of saline solution to flush tubes, etc. That's partly why it takes so long.
After the first session my partner and I went to one of the hospital cafes and relaxed for a while, then made our way home. I can't say that I had much reaction to the procedure at all.
Last Monday 3rd I went for the second session, this time on my own as partner was required for grandparent duty looking after the twins. This was supposed to be shorter, but the pump kept objecting every time I so much as moved my hand and I didn't get out until after 4pm (after an 8:30 start). I felt like rubbish getting home and did almost nothing the following day. Ever since then I've been a little better each day but I'm still not right. What a way to set up for a holiday!
...And on Monday (10th) we climb on a train and make our way to Brussels. We'll stay there for a day and then go to Berlin on Wednesday 12th. Five days there and return on the 18th as far as Cologne, where we'll have another stopover, returning to Blighty on 20th. All journeys by high-speed trains. I just hope that both of us are in some fit state to do some sight-seeing once we get to these places.
So, nothing to show for myself here until the end of the month, probably. I have stuff written but nowhere near a complete chapter of anything. My time has been taken up with preparing for the holiday, general household activities and being mostly asleep. Oh, and trying to sort out my computer problems, which still haven't been resolved. To write, or to compute, one needs brain power and there's not been too much of that around lately.
So, there it is. Yet another list of lame excuses for not churning out eagerly awaited story content. We'll see what I can do once we return from the European Empire.
Penny
[1] Rituximab works by tacking a molecule onto b-cells in the blood stream, which cause them to self-destruct. B-cells are the ones which generate antibodies when required, which then attach to 'foreign' cells so that T-killer cells can get rid of them. A variety of b-cell also acts like a kind of library, 'remembering' antibodies in case they are required in the future. This is why we get immunisation jabs, so that they can be added to that library.
In order to stop my (or anyone with an autoimmune disease) body making antibodies that attack me instead of foreigners, they have to kill off the library b-cells so that the whole history is nuked and can then be rebuilt from scratch. Obviously, this comes with risks, such as not being anywhere near small girls who have just started school.
Well, nobody said it was going to be easy.
Comments
At least you are trying something sensibly
My brother needs a hip joint replacement. His joint as no surfaces pretty much. He has tried even exotic stuff like stem cell injections as he is deathly afraid of that surgery.
I have to roll my eyes at this as bro has always prided himself as the tough big brother. It needs to be done. He has been overweight for a number of decades and is pre-diabetic too consequently. I have always been of normal/under weight so that keeps stress to my body to a minimum.
Anyway, I had have had surgeries for bottom/appendix/wisdom teeth etc so am no stranger to doing what is necessary when surgery is called for.
So, since I have not been through joint replacement, is it something that should be that greatly feared?
I've had both knees done
right in 2000 and left in 2015. Both are doing well and I have no regrets. The key is the follow-up therapy. It is critical. In my experience, even more important is pre-surgery exercise. Flexibility but not weight bearing. Too many people let the pain of bad joints stop them which allows the muscles to atrophy making the post surgery therapy harder. Then the patient has to not only recover from the trauma of surgery, they need to rebuild the muscle.
On the strange side, my grandfather taught me while undergoing chemo for cancer that pain is good. As long as you hurt you know you're alive.
Boys will be girls... if they're lucky!
Jennifer Sue
Chemo sucks - big time
I would not wish it on an enemy.
Everyone has a different reaction to Chemo. I hope that any reaction you have is minor.
I really hope that your trip abroad works out but don't be surprised if all you want to do is sleep.
Take things slowly. Try not to have to rush for a train or even a lift.
Enjoy yourself and get home safely.
Samantha
I think they call it
I think they call it 'infusion' therapy, not chemotherapy. I have a customer that runs an infusion center.
I'll get a life when it's proven and substantiated to be better than what I'm currently experiencing.
Thanks for the Update
Hopefully, this new treatment will improve your life. Please do what is best for you and your family. You are in my thoughts. Take care.
Be well my sister.
I am quite taken with your stories and inshallah, you will write many more. Do have a lovely time traveling.
Regards
Gwen
As much as I enjoy your stories
Your treatment is much more important, stories can wait. Have a nice holiday.
Best wishes
Sophie