Tag Archives: Rituximab

An evening with The Speaker

That was quite an experience, but as I had hoped, an interesting one. Tonight was the night I gave my little speech to invited guests at Westminster as part of the Lymphoma Association’s launch of a new policy/lobbying document.

They are raising awareness of the long term psychological impact of being a “survivor” in order to try to get more support for those that need it. They have used my story as part of the document and asked me to tell it tonight.

On arrival at Portcullis House, the working offices of most MPs, queuing for about 20 minutes before going through full airport security to get in, we waited in a holding area until being ushered through the tunnel to the Houses Of Parliament and into The Speaker’s quarters. This isn’t where he and his good wife live, but the public rooms below. They are, as you would expect, very grand with high ceilings and very nice wallpaper, courtesy of a previous occupant of the position. Paintings of some of the previous Speakers look down on you – literally and figuratively I suspect. It will be the wigs that do it.

The Speaker himself joined us and introduced the event, which consisted of several short speeches by the Chief Exec and other members of the charity board. And one from me.

All in all, it was a good evening and I had some very nice feedback from people in attendance. Surprisingly, I didn’t feel nervous, although friends from Manchester support group said that I looked it (!) and all in all it was an interesting thing to do. Let’s hope that those there in a position to help actually do so.

I had a glass of The Speaker’s wine and some of his sausages on sticks, so that’s all good.

Unfortunately… the train home has been delayed by half an hour due to a “medical emergency”. I’ve never seen anyone having CPR for real before, so having to swap trains is actually a minor inconvenience compared to what that lady was going through. I hope she’s OK. Will have missed the last tram back to the office now, though, so it will end up a very long day.

Now… Where’s the tea trolley?

Unprocessed film and news from my recent consultation

The fact that there was still an unprocessed film from my week in Cornwall at the end of June is testament to the amount of pleasure I am getting out of my photography at the moment. I am hoping that a forthcoming visit to France and Istanbul will get the creative juices flowing again.

However, given a very rainy Bank Holiday Monday, I finally got round to processing the film. Not very successful, I have to say – the processing was fine, it’s what I found when I’d done it that was a bit of a disappointment. I managed to scrape together a couple of shots from the roll, so I thought that I might as well put them on here.

The first shot is of Mevagissey. I am pretty sure that there’s a colour one from there on posts from June, but this is obviously a black and white version. The colour is better, since it’s a colourful place, but never mind that.

Mevagissey

The second is from Port Isaac on a day which probably gave us the worst weather of the holiday. Either heavy rain or horribly overcast. But, beggars can’t be choosers and it’s too far just to pop down to take advantage of good weather.

Port-Isaac

Since my last post, I have been to see my consultant for a regular 4 monthly check-up. 

He has slightly changed his story with regards to what he could see on the CT scan from last year, but it doesn’t materially change anything particularly. He does want to do another scan in December and will send me an appointment nearer the time. He is proposing to do further scans “over the next few years” and then stop doing them until he thinks it necessary again. These series of scans will be used to act as benchmarks against which future, but not so frequent, scans will be assessed.

This is a good thing for a few reasons, but mostly because he obviously expects me to still be alive in a few years after he has done the series of annual scans.

I asked him about “remission” (or “partial remission” in my case) and when that would normally be measured from. This is from the end of the chemotherapy that has caused the disease to shrink. It ignores the maintenance, because that is intended to just increase the remission period. That said, he suggested that there is some evidence to say that the Rituximab maintenance can also continue to shrink the disease during that period. So that’s also good news.

What this means is that I have now been in “partial remission” for four years and with no sign of the disease returning at the moment, this is another successful visit over and done with.

Steady as she goes, once again. Keep on watching – and waiting…

Twitter is rubbish and brilliant. At the same time. Lymphoma news I couldn’t easily have found elsewhere.

Two updates for the price of one, today…

I’ve been on Twitter for a few years now. At first I just couldn’t understand what it was all about, but as it grew and by following friends that I knew who had migrated from elsewhere on the internet, I soon got the hang of it. It has rapidly grown into one of the biggest wastes of time on the internet (as if that wasn’t bad enough in itself) and also one of the most useful.

If you have an interest in tropical fish, or cabbages, want to know what’s happening in your town, or Liverpool Football Club (other teams’ Twitter feeds are available, apparently..) you can do so easily just by following individuals and companies on Twitter. The same is true of Facebook, but there are massive privacy issues on there that Twitter have so far, for the most part, resisted adopting. Long may it remain so.

So, by the judicious following of a couple of organisations, I have learned some interesting things over the last couple of weeks.

For example, Lymphoma Research have recently posted a link to an article on “Reduced intensity treatment in early-stage Hodgkin’s lymphoma” which, although not directly related to the lymphoma that I have, was an interesting read nonetheless.

Another source, Non-Hodgkin’s Today have lots of useful links, such as this one comparing cancer survival rates across various countries and this one on the “The evaluation and optimal use of rituximab in lymphoid malignancies”, something that is definitely relevant. There was this one, from a couple of months ago, about a new drug from a company called Gilead, which is being tested right now for those people who are no longer responsive to Rituximab.

All good stuff and very difficult to find if you are not pointed in the right direction.

Another new buddy link this week

The Lymphoma Association called me a couple of weeks ago asking whether I would be able to take on another buddy – a request to which I gladly said “Yes” – and my new contact phoned me on Tuesday. As with Buddy Nr 1, we had a really good chat and I am pleased to say that the feedback he has given the Association was very positive. It is interesting that I seem to be getting as much from these contacts as the people seeking a buddy and I regret not calling the Association and asking for a buddy myself when I was first diagnosed.

I have also been asked whether I would consider putting myself forward as a lay-member on a NICE Committee considering further issues relating to follicular NHL. This is something I would really like to be able to do. I enjoyed the small contribution I made a few years ago, when they were considering the use of Rituximab for first-remission maintenance and I think that I would have been able to make a positive contribution again. Unfortunately, they need people who are available in Cardiff every 4-6 weeks, for 18 months. There is no way that my employer would allow me so much time off work to do this, so I will have to set this aside, which is a shame.

Despite my “no looking back” policy, it is appropriate to look back just one year, to my son’s wedding. This time last year we were enjoying the wedding breakfast on a really wonderful day. So, Happy Anniversary to the still happy couple 🙂

Maybe at the end of the year I will allow myself a reflective post, looking back on a most remarkable 12 months.

And finally, I heard today that our multi-storey car park project in Blackpool has been shortlisted for The Lighting Design Awards 2014.  One of my goals for all of the projects there was to win some awards, so let’s hope that this is at least the first shortlisting of many. I need to get up there and take some more photographs of it in the evening now that it’s completed and open to the public so that I can record the lighting system in all its glory. It’s been a challenging project, but working with a good team, we have achieved a remarkable transformation of this old building. Time for another photo…

Car-park

This is very worrying…

I picked this up via a Tweet from a group called @Hodgkintoday who pass on snippets and links to research in the field.

This early study links the use of Rituximab to an increased risk of melanoma.

http://www.karger.com/Article/FullText/350681

Now, there are side effects to pretty well any drug that you can think of, but it would be a supreme irony if one were to get a melanoma as a direct result of taking a drug to assist in a different cancer.

One to ask my new consultant next week, I think.

Working while on holiday (revisited)

With thanks to my friend AF for the link, here is an interesting article about the wisdom of keeping up with office work while on holiday.

Staff holiday – why it could be bad for business

I have posted about this before, while I was on leave, and it is interesting that professionals in the insurance and HR industries are thinking about the effect that this has on people.

Still deciding about two weeks next year, but I will take soundings from those colleagues who have been taking split weeks as well as those who have completely left the office behind for two (or more). What I have noticed is that some of the more senior staff within the organisation do tend to go completely off radar while on holiday as do those who read The Guardian. Maybe I need to reconsider the Blackberry in the bag next time, or at least have the email function switched off.

On the other hand there are others with whom I work who refuse to check emails while on leave, then complain that it takes two weeks on their return to catch up with themselves, while in the meantime, decisions get undecided and progress on projects slows. And their stress levels get turned up to 11.

What I did notice myself, having been keeping up with emails, is that I didn’t really feel that I got the best out of my holiday.

I don’t think that there is any easy answer and I don’t think that there is a right answer. But keeping the balance right is the important thing.

Another month… where do they go?

I suppose that it’s a good thing that a month has gone by with no post to this blog, but the whole point about a blog is that it is updated regularly – I don’t think that once a month qualifies  really. So apologies for that.

What it DOES mean, though, is that I am continuing to be well and not calling upon the good services of the health service of my consultant. It also means that this week is the week for my next quarterly check-up. Friday morning to be precise.

As I have posted before, this is most likely to be my consultant’s last clinic for me. This puts me in a bit of a dilema, really. Do I continue attending the local hospital, where I have received excellent treatment through him and the staff on the haematology ward, or do I consider a new referral (presumably via my GP), to The Christie, the large teaching hospital in Manchester. While that is 50 odd miles away from home, they are one of the two top oncology hospitals in the country. They have excellent facilities and do pioneering work.

My consultant has hinted before that “next time” he might refer me to The Christie in any case as they have the ability to administer interesting treatments such as Zevalin, a monoclonal antibody radioimmunotherapy. This stuff is like the Rituximab, but with added radiation. So, not only does it lock onto the CD20 marker on the diseased lymph cells, like Rituximab does, it also administers a dose of radiation to it while it’s at it. All clever stuff. They also have the ability to do stem cell transplants and other more serious treatments that a more local general hospital might find too much. Who knows what I might need in the future (if anything), but if there is a need for something more challenging, The Christie is the right place for it and it might be of benefit to get into their own system sooner rather than later.

Let’s see what Friday brings.

So, what else did April bring? Easter came and went without so much as a whimper and we did go to the Grand National this year for the first time in a few years. It’s a great day out (especially if someone else is paying – thanks to Adrian!) and fortunately, everyone and their horse got round safely. As usual, we didn’t win any money, but we didn’t expect to.

We also had a trip to Whitby in North Yorkshire last week with some of the Leica gang. We had a good day there and a good overnight stay at The Morritt Arms Hotel, just south of Barnard Castle on the A66. We have stayed there once before, but the owners have spent some money on it recently and it become even more comfortable  Very good food, reasonable wine and very friendly staff. Highly recommended.

Now, it’s time to take stock and think about the summer holiday in Islay coming up at the end of June. This makes it sound like life is just the gaps in between holidays and weekends away – which I suppose it can be really…

I have been invited to speak at an international conference on car parks at the end of May, so that will be interesting, if you like car parks. It’s only in London, not Sydney, or Tokyo, or somewhere similarly exotic, but one can’t have everything.

Our project in Blackpool is really starting to take shape now – the steel frames for the council office and the supermarket are almost complete and the scale of what we are doing is there for all to see. It’s very exciting and worth the time it took to get this far. We have excellent teams working with us up there and it’s a pleasure working with them all. I have put a photo of the site in the Photograph of the Week tab.

Finally, I can’t let today pass without mentioning Betsy, who is two today. She has finally turned into a lovely little dog and has become sensible in her teenage years. Happy BIrthday Betsy. 🙂

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