A frustrating day

Having received the call from the Consultant last night, I phoned the hospital this morning to confirm that I wouldn’t be needing the appointment at 9 am. They confirmed that I was booked in for an “Open Appointment”, which allows me to arrive late in the afternoon session.

During the morning, I called the Consultant to see whether we were still OK for this afternoon, only to be told that he hadn’t been able to confirm with the hospital authorities that the nurse who has now offered to stay this evening would be paid overtime for her efforts. I told him that if necessary, I would pay her cash for staying behind so that she would be sure of being paid. He asked me to leave this with him until lunchtime when he should have been able to speak with the finance authorities to confirm.

He called just after lunch. “Yes, everything is fine for this afternoon. Please come in at 4:30”

That’s progress…

5 minutes later – phone rings again. “Sorry, just had a call from pharmacy to say that their drug making machine has broken down and they won’t be able to mix up the drug for you this afternoon”.

Good grief. This is now getting beyond a joke.

He then told me that he would be trying to find someone to help us out so that he could give the treatment to me before Saturday lunchtime. Obviously I told him that I would make myself available at any time, but it really shouldn’t need to be like this.

Why he couldn’t have just filled out the bloody form to make a special case to the Finance Department to have this done under the NHS, I don’t know. This is just ridiculous.

Finally, at around 5pm, he called me to confirm that I should attend at 4:30 tomorrow afternoon. He has got one of the nurses to stay behind on a Friday evening to help me out.

So, let’s just hope things go more smoothly tomorrow. I will obviously have to attend straight from the office (having been to a meeting in Liverpool ion the morning), but at least it will have been done.

Fingers crossed.

PS – the treatment is slowly going through NICE, so hopefully by the middle of next year, all this will be a thing of the past. We will see…


The nurse who gave her time (or that should be “sold” her time) two months ago so that I could have this treatment out of hours cannot do the same again tomorrow. I have just had a call from the consultant to say that he found this out about 5:30 this afternoon. This is not helpful.

So, tomorrow morning, he’s going to have to see if he can find another nurse to remain behind, or even ask one of them to come in specially on Saturday morning. Unfortunately, he’s off to Hong Kong for Christmas on Saturday evening, so this is all looking very pear shaped at the moment.

If we can’t do this before Saturday lunchtime, it will be after Christmas before we can do it. That’ll be the week when we are going to Scotland with Rebecca.

To be honest, I can’t think of a very good reason why we just can’t do this in the BUPA hospital and have done with it. It’s only giving someone a drug in a bag of saline after all.

Not happy.

Blimey. Nearly a month since the last one.

That must be good news.

This week sees the second of the maintenance doses of Rituximab and so far so good with this. I have had a cold for a week, that’s proving more difficult than normal to shift, but that’s to be expected. So, off to the Countess I go on Thursday. It appears that I have two appointments – one at 9 am and one at about 4 pm, so I will just go along with the flow and see what happens.

It was the Christmas meal with the Lymphoma Support Group yesterday. A very good meal indeed, I have to say and it’s good to chat with people for longer than is available during normal meetings. It turns out one of the members worked for years with the father of one of my friends from school – the school is 200 miles away from Manchester. It’s a very small world.

Another one of our party is currently going through her R-CHOP session – she’s on 6 out of 8 sessions. Her hair has fallen out etc. Unfortunately, it’s only 2 1/2 years since her R-CVP session, so my thoughts are with her, and I hope that what we are doing over the coming months lets me have a bit more time than that. She is on a trial of Gaudi, “son-of-Rituximab” as part of the R-CHOP (or should that be G-CHOP?), so let’s hope that does the trick. According to the fellow last month, the results are looking promising.

Had a flu jab at the GPs a couple of weeks ago. As I was putting my shirt back on, I mentioned to the practice nurse that I have NHL (which she would have read in the notes anyway of course), and she then offered me a pneumonia vaccine. Protects against 23 different strains of viral pneumonia apparently – for life, which is handy. Maybe this is why I have had the cold…

I do get more tired than I ever used to though. Or that might just be because I’m about to enter my 50th year… who knows?

Very busy at work. The big job looks like it might actually be getting somewhere this year, so next year could be extremely busy. Lots to do if we get over the Christmas hurdle.

Can’t say I’ve been very impressed with the very cold weather. It’s only got down to minus 7C here, but other places in the NW have been down to minus 12 or more. Our road has been a sheet of ice for about 10 days now. Both yesterday and today it took me about 2 1/2 hours to get to work (yesterday Blackpool, where it was snowing heavily – most unusual) and today in Salford. Just insane traffic today. In all my years of driving it never ceases to amaze me how traffic can be completely stationary for miles, yet there appear to be no reason why – it just seems to clear by magic for a couple of miles and then come to a standstill once again. Something to do with wave theory, I think.

I have found a very interesting family present for Christmas (well, I think so, anyway). I won’t let on what it is, of course, but it will be good to use it on Christmas Day. It’s unusual – that’s all I’m saying. Should be delivered this week with any luck.

Apart from that, I’ve taken hardly any photographs in ages, what with the miserable weather and this cold. But the book is coming along… so that’s OK.