Excellent news from NICE

After what I thought to be a false start back in February (previous blog posts refer), NICE have today issued “draft” guidance on the use of Rituximab for maintenance therapy in first remission cases of follicular NHL, such as mine.

I look forward to discussing same with my haematologist at my next session on Thursday. Maybe I will be able to have my treatment during normal hours now.

I was interviewed by the BBC about this yesterday morning, so I need to have a look and see whether I have made the cut or been spiked under an Icelandic Ash Cloud… 🙂

Leica Akademie, Lymphoma Association AGM and more

Well, it has been a couple of weeks, now…

Lots has happened, since 6th May.

Firstly, we appear to have a new dog. Well, she’s not quite with us yet, as she was born on Good Friday and will be ready to join us when we get back from New England. We have named her Betsy and she’s a Jack Russell. Here’s a photo of her trying to steal some grub from her mum.. “Ahh…”

She is from a litter of three boys and three girls and looks like a proper little cutie. We have spoken with Pippa about her and she’s fine 😉
Rebecca has set off on her round-the-world trip and, as I write this, she is between China and Japan, having already ticked off the Great Wall and Xian terracotta warriors. She seems to be enjoying herself, on the one occasion when we have spoken with her, but we do get the odd email every other day, so that’s OK!
I attended a very good day at the Leica Akademie last Wednesday. The man on the Vespa is the result of that outing. I have to say that Will Cheung was an excellent host and good fun to be with – a really nice guy. Thanks have to go to all at Leica UK for helping to make this happen.
Yesterday was the AGM of the Lymphoma Association. I went to last year’s at Reading University; this time it was at Nottingham and as usual it was very informative. There are a lot of new treatments coming through – the GA101 “grandson of Rituximab” looks very interesting (one of the fellow members of the Manchester Support Group has had this treatment and her lymphoma has all but disappeared), as is some of the work that the Germans are doing with a drug called Bendamustine, yet another chemo-therapy based upon mustard gas. I have probably said this before, but what a debt we owe to our Great-Grandfathers… The Association are putting my name forward as a possible “patient member” attending a meeting of NICE in Manchester in August. They are discussing the use of Rituximab and the Association feel that I may have something to contribute. I have said that I am happy to help them in their work in any way, of course. The only way that we are going to get to a better place with this is if we all play a small part.
So, now we are in that “ground rush” period before going on holiday. Only one weekend left (Sunday we have to go and see the puppy again…), and an awful lot to do at work. Just need to keep an eye on that bloody Icelandic volcano…
Oh, and I bought some tickets to go and see Roger Waters “The Wall” this afternoon. Something to look forward to in that “post-holiday-blues” period 🙂

Into my third year

It was the second anniversary of me discovering that I have a problem this week. Time marches on, but with the fantastic support and help of those around me, I am currently “well”, which is a great thing. My haematologist spoke of 5 years as a typical prognosis when I first saw him in 2009. I fully expect to get more than that, but I know that as the years tick by, this is going to press on my mind more and more. I mustn’t let it.

I have come through radiotherapy and chemotherapy pretty much unscathed and the maintenance regime that I am currently enjoying is not affecting my life at all, really, apart from having to go and receive the treatment.

I do get a lot more tired than I used to though. If I didn’t know I was ill, then I would pout this down to getting older, but I am not so sure that’s the reason. Having cancer, even in remission, must take it out of you.

It’s “always there”, in the back of your mind. It never goes away. This is quite difficult sometimes, as to all intents and purposes, I look perfectly healthy, and those around you either don’t know that you are ill at all, or have forgotten. While, that’s a good thing, sometimes it would be nice for those that do know (not immediate family, of course, but colleagues and acquaintances) to ask after your health once in a while. Some people do, but most people that do know have either forgotten, or just don’t feel it necessary or appropriate to talk about these things.

This is a purely selfish rationale, though. It’s nice to think that other people are thinking about you, but they have their own lives and worries etc. What I have promised myself, is that I will try to remember when people I know have similar problems, and I will ask after them. It’s a nice thing to do.

So, things could be a lot worse. I could have been born twenty years before, in which case I would be looking at a very different future. I could have been born somewhere else – ditto. I might not have had the benefit of a supportive family, friends and employer and I might not have been able to benefit from private medical insurance. I am a lucky man and, sometimes, it’s necessary to remind yourself of that fact.

Now, all I have to do is think of a third year title for this blog. Adding “Still” was fine for the second year, but something needs to be done moving forward into the third.

Answers on a postcard to the usual address, please.

So, the Royal Wedding has been and gone

And so has the camera.

After putting a roll of film through on the Saturday, I had thought that it was much more difficult to focus than either of my other two Ms. I put this down to the reduced magnification viewfinder. Unfortunately, this wasn’t the case. The viewfinder is actually mis-aligned in the vertical plane, and will never give a coincident image, until it has been adjusted. The camera is now back in Germany, being sorted out. I have been in contact with various people there, courtesy of great assistance from Jenny at Leica UK and Andreas from the Forum, and I am hoping that it will have been returned by next weekend. It definitely arrived in Germany before this weekend just gone, so fingers crossed.

Watch the wedding in Rebecca’s flat in Edinburgh with a lot of other “young people” – a good morning actually. I thought that the wedding was a great spectacle and I enjoyed watching it more than I thought I would. After that, we drove all her stuff back home, ready for her to head off round the world next week.

I also met Luke, her boyfriend, for the first time – a thoroughly decent and nice guy, if first impressions are anything to go by. I would expect nothing less!

Now, tomorrow, Bank Holiday Monday, we are off to see a new puppy, born on Good Friday. It’s from a litter that belong to a niece’s husband’s brother, and we have been receiving photos via text messages for several days now. It looks like “Betty” is the chosen name, after some deliberation, it has to be said. Audrey was right up there for a while… I suspect that she will be the one – it’s not possible to go and visit a week old puppy and not buy it. She will be ready to pick up when we get back from the US, so that’s all working out quite well.

She’s a Jack Russell… going to be an interesting summer.