Tag Archives: cancer

This is the end…

No, not that end, but the end of this blog.

And that’s because there is nothing left for me to say on it. After 10 years, it’s job is done.

I am well.

I have actually been well since the end of my chemotherapy in 2010, but it’s only after several years than one can be sure. As time, and research moves on, it is becoming clearer that, for the lucky ones like me, there may be a “cure” for B-Cell Follicular Non-Hodgkin Lymphoma after all. Cure may be too strong a word, but “remission long enough to get you to the end of your life anyway” is how I am looking at it.

Basically, there is a proportion of the population with this who respond extremely well to the chemo and fantastic treatments currently available. Some 80% of patients survive 24 months without relapsing and needing further treatment, or unfortunately, dying. If you can get beyond that 24 month period, then it seems that you are more likely to never relapse. I will be 10 years from the start of my treatment in February and am confident that I am through this now.

Rituximab, as I have said before, has been a game-changer and the newer versions are even better. Great news is that Rituximab is now off-patent and available at a much more reasonable cost, so hopefully more people around the world can benefit. But, thanks to the people at Roche who needed the high price to bring it to market in the first place. Let’s hope that the research ongoing today brings forward better and better treatments.

I will still see my consultant going forwards, but only once per year instead of every six months, but can foresee a time when I will stop that too.

I wouldn’t wish this on anyone, but I am thankful for all the people who treated me and supported me when I was ill. And I hope that someone with NHL reading this has got something out of it – that was one of the reasons for starting it in the first place.

Now, it’s time to look forward to a great holiday in the US in the Autumn celebrating Ann’s birthday, our first ever Christmas away from home and a couple of trips booked for next year too.

But most importantly, our daughter’s wedding in a couple of month’s time. It’s going to be a great day.

I will leave this blog with a couple of photos taken a fortnight ago near the Severn Valley Railway, near Kidderminster. What a beautiful spot this is.

Severn-Valley-Railway

Poppies

Thank you.

 

 

PS – Since Flickr now have a policy of restricting the number of photographs on their site and Apple have stopped iWeb, I might set up a photography page on here. I will add a link if I do.

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.

On being a “buddy”, stress and what it might do to you

Regular readers will know that last year I volunteered to be “Buddy” for the Lymphoma Association. When I had my training back in March, they said it might be some time before my first contact, but this week I was emailed by the co-ordinator and given my first buddy. (Actually, I am the “buddy”. I’m not quite sure if the term for the “buddy-needer”, but it doesn’t matter)

They called last night and we had a very good chat for about three quarters of an hour. The co-ordinator tries to match people who would like to speak with a buddy to buddies with the same or similar experience and I have to say that they did an extremely good job this week.

The person who phoned had recently been diagnosed with the same kind of NHL that I have and is going to have their first chemotherapy in September, after taking a short holiday. What struck me about this person’s history was that it was very similar to mine, especially in one important respect. They hadn’t taken any annual leave at all last year and very little the year before.

Now, I have been going on about annual leave, working while on leave and the length of leave taken recently, but that’s partly because I too had a period a few years ago when I couldn’t take the annual leave I was entitled to. About ten years ago, I had taken a new job as a Director of an office and found myself in an incredibly stressful situation. Two of my colleagues left within three months of me starting and the finances of the office were such that I couldn’t afford to employ anyone else to take their desks. I ended up doing three people’s work and running the office too. I would work until half ten at night and at least one day of the weekend, just to keep up. That year I had about 6 days annual leave – if I did want to take a day off during the week, I would have to work the weekend to make up for it. My health definitely suffered (although I didn’t know by how much at the time) and I was glad to get out. It did take me just over three years though. So, now, I do make sure that I take all of the annual leave that I am entitled to each year and do my best not to carry any over.

My buddy contact had a similar story.

Now, as far as I am aware, there is no known cause or particular reason why any individual might develop lymphoma. It’s not a cancer that has a common cause, such as lung cancer, it just happens sometimes to some people. I also know that two people having a stressful job and having the same disease doesn’t mean anything statistically, but it was an interesting aspect of the chat we had last night.

What is also interesting is this story that was published yesterday.

The Stress and Cancer Link: ‘Master-Switch’ Stress Gene Enables Cancer’s Spread

So, I have made a decision. Sod the Blackberry. Sod the emails. Sod work. Next year, I will take a proper, two week holiday, without any of that crap. The world won’t end without me. It might even be good for my blood pressure, if nothing else.

And if you are reading this, and don’t take your full holiday entitlement, or work stupid hours at the weekend, think on.

Your children will thank you for it.

Maurice Saatchi, cancer and innovation

As someone who might not even be here if it weren’t for people prepared to take risks, innovate, test, retest, lose battles, win battles and all the other cliché-ridden phrases used in the “fight” against cancer, I read with some dismay this piece in the Telegraph by Maurice Saatchi.

Without innovation we will never cure cancer

He is absolutely right. Innovation and free thought, unconstrained by the threat of litigation if something goes wrong, will find us closer to this futile goal. I don’t believe that we will ever cure “cancer”. Which cancer? There are hundreds of them, thousands, probably, and with an ageing population more and more of us are going to get it.

BUT, we will never even begin to get closer than we are without us all being prepared to take risks, either for ourselves, our patients or our fellow man.

If and when the time comes and I am asked to join a clinical trial for a new treatment, after some careful consideration, I am most likely to say “Yes”. I owe it to myself, my fellows who also live with this disease and those who are to come. But also to those who have gone before. The mustard gas victims  Those who were prepared to try new drugs and treatments before me – they are the ones to whom I owe the biggest debt.

As my blog title says, it’s “My turn this year”. One year it will be my turn to step forward and make my own contribution to this process.

Provided they are still allowed by law to innovate of course…