Category Archives: watch and wait

52 not out

Another birthday has been and gone. Another year chalked off and another year to look forward to. I had some very good presents – posh toiletries, lots of books, the usual things that 50-somethings get  – and a night away in Boot, in Eskdale in the Lake District. Thank you to everyone!

We stayed at The Boot Inn, in the village of Boot. We have stayed there before, as a break on a journey to Scotland about 5 years ago, and it’s unusual to be able to get just one night in the Lakes at a weekend. However, they will let rooms on that basis and very welcome it was too. It’s a decent place to stay, but was extremely hot, being at the end of a heatwave, with temperatures up to 30C. The food was good (best black pudding I have ever eaten) and the beer was local. Very good value for money too, so highly recommended.

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We took the opportunity to visit some towns on the coast that we haven’t properly been to before. Ravenglass is very attractive. Whitehaven and Workington maybe less so, but interesting nonetheless. Cockermouth is a lovely little town now that it has dried out from the floods of a few years ago – the sort of place that you wouldn’t mind living. Home after a picnic under a tree at Watendlath.

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And now, I realise that another three months have gone by and it’s time to pay a visit to the hospital. Friday morning. As I have said before I am a bit disappointed that I have to start a relationship with a new consultant, and I am obviously hoping that I do not have to see the locum, who could easily change again by the next time I see them. However, I should count myself lucky. It appears that if I were at the Christies in Manchester, I would be seeing a different consultant or specialist every time, so as not to only be seen by one person.

I suppose this does have the advantage of getting a “second opinion” each time you pay them a visit, but I do think that I have benefited from being in the care of just one person for these last four years. Let’s see what Friday brings – I always have choices I can take after this consultation.

I have been getting tired recently and occasionally I can feel the nodes in my neck, particularly after a couple of drinks. When I was first diagnosed, a bottle of Peroni beer would make itself known in my neck within half an hour (wine wouldn’t, for some reason). I’m just hoping that this doesn’t mean that the second half of 2013 is going to go the same way as the second half of 2009… you can read for yourselves where that led to and I am hoping to have a few more years yet before opening up that particular door again.

Whatever – there’s nothing that I can do about it and I must cherish what I have, rather than what I can’t have. Be satisfied with my lot and enjoy the moment.

And I am. I try to make the best of every day and every opportunity that comes along, but it’s very difficult sometimes. But I had a bad weekend a couple of weekends ago, where I was over-thinking things and feeling very sorry for myself. Sometimes you need weekends like that just so that those kind of feelings don’t come to the surface too often – get them all out and over and done with. Until the next time.

I wonder what happened to the research that the psychiatrist was doing a few months ago. I never did hear anything else.

Negative and Positive thoughts after the Lymphoma Association AGM

I had the pleasure of attending the Lymphoma Association AGM and Conference in Guildford a couple of weeks ago. This was my fourth conference and this one was the best yet.

One of the speakers did a presentation on “Watch and Wait”, a subject too close to my heart, suggesting that the longer that one is on this particular regime (i.e. do nothing but attend regular clinics and wait until symptoms appear) the easier it gets. Well, I have to tell them that they are wrong. It doesn’t. As time progresses, the waiting becomes more onerous. Someone else at the conference described it as “Watch and Worry” and, while I don’t necessarily worry about it, I am somewhere between a worrier and a waiter.

I am finding that, knowing the typical progression of the disease (as I described last time), it becomes increasingly obvious that the months are going by at a rate of knots. It seems like only a week since my last blog entry, but at the risk of repeating myself, it’s actually a month away now. So, contrary to the advice of the speaker – who was not a sufferer themselves – this particular patient is not finding it easier over time. Yes, I know that there are some people who have been on “Watch and Wait” for over 20 years – poor sods – and I know that I am young and relatively fit so some of the stats might not necessarily apply to me, but that doesn’t make it any easier. However, it is important to think positive and remain optimistic. The conference was very good at providing good cause to be so.

It was very well attended this year – over 200 people in the audience. As I have found in the past, the most interesting and relevant presentations are those which give a brief insight into upcoming treatments for lymphomas. I would hazard a guess that for the vast majority of attendees, be they sufferers or loved ones / friends, the most important aspect of the event is to know that there are some very clever people around doing extraordinary work, to make our lives better for longer.

One particularly interesting development, to go along with the established treatments and those that are coming through already (such as the Zevalin I have written about before) was that of the use of genetically modified T-Cells. T-Cells are part of the immune system, with one type of T-Cell being especially good at killing rogue cells. The use of other people’s T-Cells can be very effective at killing your own lymphoma cells. But… the problem is that they kill other cells too, including those in the liver, skin, gut and elsewhere. This is not so good.

However, by genetically modifying the patient’s own T-Cells, which would normally not attack other host cells, this problem can be overcome.  The technique was described as a bit like the addition of the Rituximab marker to the patient’s T-Cells, so that these cells would only latch onto the diseased lymph cells, and no others. This all seems very exciting, and having been used for other kinds of cancers, trials for lymphoma treatment start in 2014. This is extremely expensive medicine and would only be used as a treatment of last resort in the medium term, but it does sound very exciting.

I do think that genetic medicine really is going to be a massive contributor to the wellbeing of the population during this century. Now that the cost of doing a full genetic map of an individual has come down in cost so dramatically (they are talking about getting down to £100 per individual soon), treatments specifically tailored to an individual on a genetic level will soon become a reality for normal people. Whilst it is already possible to work out the genetic composition of an individual’s lymphoma, and put together a specific treatment regime for that, the costs are prohibitive. Maybe, this is all about to change.

I hope so. And if that’s not positive news worth thinking about, I don’t know what is.

The Psychologist

What an interesting afternoon. I attended a meeting with a psychologist for the first time in my life yesterday. Well, that’s not quite true, Ann is a psychology graduate, but that’s not quite the same.

As part of the PhD study that I mentioned previously, I attended a session at the hospital to assist in the development of an evaluation process for people diagnosed with NHL. It would appear that there are standard psychological testing systems regularly in use for cancer patients, but none specifically for those of us with NHL. With a bit of luck, and some hard work on the part of the PhD student (!) this will change.

There were two patients there, myself and a slightly older man (Man 2 – we remained anonymous for the purpose of the study) and we spent a couple of hours talking with the student and her assistant about our experiences. With just the two of us there, we both had plenty of opportunity to speak freely and at length in response to the ongoing discussion. If there had been more than just the two of us, I suspect that we, as contributors, and the student doing the research, would have got less out of the session.

By happenstance, Man 2’s experiences were slightly different from mine – everyone’s disease is different – so the session managed to cover quite a broad spectrum of what it’s like to be diagnosed. He didn’t realise that he had NHL until inexplicably he lost a lot of weight and had the night sweats (two of the classic symptoms). My experiences meant that I knew I had it before I had the symptoms and could therefore “be prepared”.

We went through several pages of “needs” identified as part of the general cancer patient questionnaire and in some detail discussed how these needs were relevant to our situation. Since everyone is at a different stage of life and disease, it was interesting to learn what Man 2’s needs were, compared to mine.

The “needs” covered sections such as the psychological support ones, financial, sexual, relationships and so on. The sort of things that one would expect in a study like this. What was most interesting was how the two of us were open and seemingly honest about sharing some pretty private thoughts and feelings with three complete strangers. I have never spoken of such things before, outside of the family. Indeed, there were probably things that I said yesterday that I have never said before. I suspect that it is inevitable that some things remain unsaid in normal circumstances. When speaking to a stranger, who is interested in understanding the experiences and thoughts, somehow it’s easier. Much less personal and less likely to cause upset.  I can’t remember what they were, but one seems freer to talk openly to a stranger somehow.

Both of us agreed that some of the “needs” were not relevant to our situation at all; body image, for example. With some cancers, melanoma or breast cancer, body image after treatment can be particularly relevant and important to the mental wellbeing of the patient. With lymphoma, for the most part, no one can tell that you are or have been ill. 

The whole session was most enlightening and extremely well chaired by the student, given that this was her first session. I will be interested to read the summary of her findings in due course.

Maybe I would benefit from finding a Dr Melfi . (Yes, I know she was a psychiatrist..) Or maybe that’s just for the likes of Tony Soprano. Either way, as I said in the meeting, I always feel better about the situation after having spoken about it.

I felt much better yesterday. Yesterday was a good day.

 

Shirley, Cologne, Seal and wedding preparations

The presentation to the Shirley Photographic Society went very well indeed. As I was driving down the M6 from Blackpool, I was thinking that it could go one of two ways – fortunately, it seems to have gone the right way.

They were generous hosts and a nice bunch of people and I spoke for nearly an hour and a half on a selection of my photographs. They were very complimentary during tea afterwards and they offered me a fee, which I asked to be sent to the Lymphoma Association on my behalf. I have no idea what the fee was, but it will have been gratefully received by the Association.

Unfortunately, the M6 was closed due to an accident in the Stafford area on the way home, so I had to double back and come the long way round via Telford and Wrexham. Still, it was a good evening.

I have also been to Germany this month to the Photokina photography fair. I was invited to attend the private Leica launch party as a guest of the owner of the Leica Forum and happily accepted. I used Eurostar and the DBahn train service to get to Cologne via Brussels with the view to taking in some of the scenery between the Channel and Cologne. Unfortunately, there isn’t much to see as it is extremely flat, but the train service was very good and got me to the city at just the right time for the event.

A couple of new cameras were launched, to pretty much universal approval, especially the new “M” model, which looks particularly interesting and, for Leica, at a very good price. Saving up already…

The party was finished with a concert from Seal, a great friend of the Leica owner, Dr Kaufmann. Very good he was too.



The highlight of the evening, though, was an interview with Nick Ut, the photographer who took probably the most iconic photograph of the Vietnam War, that of Kim Phúc, the nine year old girl running naked from the napalm attack.


The rest of Photokina that I managed to see, was vast. It took around 20 minutes to walk from one end of the Halls to the other. Some are on two levels and every camera, film, lens and accessory company in the world seemed to be there, from the global giants such as Canon and Nikon, to small Chinese firms selling replacement lens hoods. No wonder that the hotels were all full and the city was buzzing.

The wedding is now only two months away, so this weekend, some serious shopping was necessary. Two decent pairs of shoes, two suits, two new shirts and a tie later, Ed and I are ready. The girls finished their shopping too, and that seemed to go pretty smoothly too, considering… That’s good to have that out of the way, and, from our point of view, it doesn’t leave much to be organised. Mustn’t forget to sort out some taxis.

Now it’s only three weeks until Copenhagen. I have downloaded some information about the Kulturnatten which is an annal event on the 12th October and, while I can’t see myself dancing the night away until dawn, I can see a late night in store. It’s going to be very interesting. I have wanted to visit the city for years, so this is the perfect reason to go. For the competition shots, I’m probably going to try out some of the high silver black and white film I picked up in Germany this week, but I must try some out first. Next weekend…

Health-wise, I am learning that “watch and wait” isn’t so bad. This coming week is the week when I would have been going in for a top-up, so it’s from next week that I am really exploring uncharted waters. I have the next check-up at the end of October, and I am sure that everything will be fine then.

I did think that I had had a night-sweat earlier in the week. I woke up convinced that it was happening, but I am pretty sure it was only a dream. Will have to watch for this though, as I suspect that my symptoms will be the same when they return.

That said, there’s lots of good things to look forward to!