Updates

Had a chat at the clinic today and they are still concerned about my cough. I was sent for another chest X-ray to see if there had been any improvement, which there had. Discussion about whether or not to continue with the Rituximab - this will be treatment 10/12. Decided to go ahead this time and review for next time.

Respiratory clinic

A new day and  a new clinic. I had some lung tests that involved blowing into a tube for as long and as hard as possible - you have to do it three times to make sure they are accurate readings. I kept stopping to cough. The respiratory specialist was very nice and we discussed my lungs in detail - I even got to look at the pictures from the scans and X-rays. Interesting, but a bit spooky to actually see the shady parts on my lungs where there ought not to be. He sent me for another X-ray, and also did a test with Ventalin to see if that helped, but it didn't. He came to the conclusion that there was no signs of anything more serious on my lungs, but that there was a low level pneumonia that would probably gradually clear up. He did suggest trying a steroid inhaler as well to see if that helped with the symptoms.

Coughs and colds

Everyone around me seems to be suffering with coughs and colds, but I seem to have avoided all of them! I have suggested that others try the Rituximab, but no-one has taken me up on the offer yet...

However, over the last couple of months I've had a cough and at the beginning of March had a bit of excitement. I woke up in the middle of the night with a very strong pain in the middle of my chest. It didn't go away, and eventually Keith called 999 he was so worried. After a few minutes of questions, they sent an ambulance with a very helpful paramedic. He checked me over and said that the pain was not my heart, but probably I had pulled a muscle in my chest from coughing. Painkillers soon sorted it out and in a day or so I felt much better - if I didn't laugh, cough or sneeze!

The cough didn't completely go, and at the end of March got much worse so that I was taking cough mixture several times at night and getting tired and breathless, so went to the GP. He gave me antibiotics and sent me for an xray, so I went to the walk-in clinic in Cobridge. They called me back the same afternoon to tell me they wanted a CT scan as well, so another appointment early the next week. The CT scan showed 'changes' in an area of my lung (they have so many scans they can compare!) so an appointment with the respiritory consultant in a couple of weeks to see what they think. Last weekend lost my voice too which I think maybe connected, but will be able to find out more soon.

Half way house

Treatment today will be halfway through the Rituximab. All going well, and gut now settling down with new regime of laxatives

Piriton

As part of each Rituximab maintenance therapy they give me a steroid and an antihistamine. The Rituximab and the steroid are fine, but the antihistamine makes me very drowsy. I drowsed all afternoon during the treatment, too sleepy to read my book, and it was too noisy to actually sleep. It's nearly bedtime now, and I'm just about starting to feel more awake!

This treatment will be the half-way point of the maintenance therapy. It's a little scary to think about when it finishes and I will have to stay in remission on my own. I know I managed for 25 years before, but not sure how long it will be this time!

My hair, as predicted, has grown back curly! I've had it cut short and layered and am experimenting with it, but seem to be good at getting it looking frizzy, not so good at the loose curls I was hoping for!

More results

I met with the gastroenterologist on Monday and the tests have all come back clear. He thinks I have a 'sluggish' gut and that is causing the constipation and then the diarrhea. He had prescribed a selection of laxatives last time, but they didn't seem to make much difference. He has prescribed a slightly different selection for me to try, assuring me that they are safe to take in large quantities (not sure I like the sound of that!)

I've been researching this a little myself and am going to include a probiotic (Yakult) in my diet to see if that helps. In addition, I'm going to try a home-made mixture of prunes/figs/dates/currants as well!

Hopefully, with my normal healthy diet and exercise, my gut will start to settle down and get back to normal.

Review

Review at the hospital today and I was able to talk about the problems with my gut. They assured me that the endoscopy was to rule out anything serious, but they are sure there's nothing serious. My blood counts are improving - white blood count nearly normal!