27 April - The doctor calls

Well that wasn't too successful. It seems that going from 1mg of dexamethasone (half a tablet) to nothing was too big a step for my body. I awoke with a mild headache and terrible balance problems. Olga took my blood pressure using our Omron blood pressure monitor and it was quite low, which is unusual for me.

Olga thought we should speak to a doctor but when we phoned the GP surgery we could not get an appointment until next Tuesday. We could go to the surgery at 5.30pm and wait to be seen as an emergency (!). Then I remembered the nurses at the radiotherapy and oncology department in Carlisle had given us a number we could call for advice if needed. Eventually we were phoned back by the consultant who advised us to increase the steroid dose to 0.5mg (a quarter of a tablet). But we were still advised to see a doctor.

About an hour later the phone rang. It was the GP surgery. Carlisle had been on the phone to them and a doctor was going to come out and visit us. Any of my readers familiar with the NHS will know that winning the lottery is easier than getting GPs to make house calls. The doctor's verdict was that the patient was OK but reducing the dosage of steroids can be tricky. We would carry on taking a quarter of a tablet a day and make an appointment at the surgery next week for a blood test.

Because the piece of dexamethasone tablet seemed so small I thought I could still give up the lansoprazole capsules which protect my stomach from the steroid. That was a mistake. I felt that quarter tablet on its entire journey through my system! So it looks like I'll have to carry on taking lansoprazole and dexamethasone for the time being.

26 April - Off the steroids

Fingers crossed that there are no ill-effects: Today I have come off the dexomethasone (steroids.) As a consequence of that I have also stopped taking the lansoprazole. The lansoprazole is meant to protect my stomach from the dexomethasone, but lanzoprazole itself has undesirable side effects when taken for a long period including liver damage and diarrhea so I will be glad if I can give it up. If all goes well then from now on, clomipramine will be the only drug I am taking specifically for the brain tumour.

I'm still suffering from excessive looseness of the bowels. It is not particularly bad, just annoying. If it doesn't clear up soon with this reduced medication I guess I'll have to see the doctor. Diarrhea seems to be a common after effect of chemotherapy so there may not be much the doctor can do about it.

I'm more concerned about the breathlessness and spinning head I experience after climbing the stairs. I'm even less steady on my feet than usual and have almost fallen over a couple of times.

My weight this morning was 97.8kg, the highest it's ever been and my legs feel like I'm wearing concrete shoes. It's hardly possible to eat less without going on a starvation diet, which isn't recommended as I need strength and energy for my recovery. Hopefully stopping the steroids will help with the weight gain.  I really hope that with the end of treatment my fitness will start getting back to normal.