Darkside: the new era starts tomorrow. I will make it count

I see the new consultant in the morning. I have my history printed thanks to this blog – without it I’d never have been able to remember exactly what happened and when – and I have the other details that he will need.

I do feel a little like it’s all starting over again. It’s starting afresh, having this “second opinion”, which is good, especially as he is even better qualified than Consultant Nr 1, but I don’t expect to have quite the same relationship with this one as I did the last.

Which is a bit of a shame. These people become extremely important in your life when the decisions that they make can quite literally mean that you have a better or worse chance of living to your 60th or 70th birthday. It would be nice to think that you can become fairly friendly with them, under those circumstances. However, much like it doesn’t do to get too friendly with staff, should you need find the need to sack some of them, so there is a good reason why the consultant/patient relationship needs to be kept at arm’s length. They need to be dispassionate about the decisions that they encourage you to make when it comes to treatment and don’t need to get themselves personally involved any more than any empathetic person would.

Not that I think that I was very friendly with Consultant 1,  but I had built up a rapport with him and his staff and he did get a couple of bottles of wine and a Christmas card from me. Regardless, I am not seeing these people to make friends. I am seeing them to get the best advice and treatment that I can so that I can spend more time with my real friends and family.

That’s what this is really all about.

Which  brings me to “Darkside”, a radio play written by Tom Stoppard around the music and themes in Pink Floyd’s Dark Side of the Moon, an album that has been the soundtrack to my life for nearly 40 years. I can’t claim to be 12 when I first heard it, but I can’t have been much more than 14. It’s the only vinyl album that I wore out twice. I listened to the play on the way home this evening – some challenging themes of life, death and philosophy in there, but I felt that there was something missing. The narrative was a bit disjointed. The fading in and out of the music meant that neither the music nor the play were allowed to speak for themselves, if that makes sense. The play would have been better without the interludes and the music most certainly doesn’t need a play over it. Oh well. Maybe they can develop the play into a “proper” play and flesh it out fully. An interesting and worthwhile idea, though.

The most important thing to take from the album, in my opinion, is the lyric from the song “Time”

“And then one day you find 
Ten years have got behind you 
No one told you when to run 
You missed the starting gun”

And from the play

“Life is not a drill”

I have been listening to that album for 38 years and sometimes it’s still tempting to think that the starting gun hasn’t gone off yet. Well it has – a long time ago. I missed it, and have been playing catch-up ever since.

We come this way once and once only. One day it really will be your last and those ten years or even ten days that got behind you will feel like a lifetime.

Make the most of every day. You know it makes sense.

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.

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.

Sorted…

I am happy to be able to report that I have been invited to attend a consultation with the new Consultant in a couple of week’s time.

This is certainly good news. You will be able to tell from recent posts that I have felt a little bit in limbo since the departure of “Man Nr 1” and this now feels as if I am back on the right path again. Well, back on some sort of path. At least I feel back in control of my destiny now. I appreciate that not everyone has this luxury, to be able to pick and choose Consultants seemingly at will, but I am appreciative of the support that my BUPA contributions over many years are able to give me.

The only regret, if that’s the right word, is that I will be moving away from the fabulous team that have looked after me so well whilst I was having my chemo and my maintenance. I think that I will need to drop them a card to thank them for their hard work and dedication and let them know that it’s nothing personal!

So, a new chapter begins before the end of August.

Nearly there with the new consultant

I have spoken with the potential new consultant’s PA who advised that she will need a referral from either my GP, or the previous oncologist. Given that he is now on the other side of the world, I spoke with my GP yesterday and he is to fax (remember them?) a letter of referral over to her.

I anticipate that she will contact me by post in the next week to arrange an appointment with him shortly.

All this is good. The new man is one of the top 10 in his field in the country, from what I can gather, so he should know his stuff.

Two steps forwards…

Subject to a call tomorrow, I think I might have found myself a new man, as it were. His PA is on leave today, but having spoken with one of her colleagues, I have put in train the necessary process to have my notes transferred to another hospital.

I will try to get to see tis new consultant as soon as I can so that I can start the process with him sooner rather than later.

In hindsight, I should have allowed my previous consultant to handle the transfer process at the time, but I wasn’t to know that I would feel so let down by the fellow I saw at the end of July.

More tomorrow if there’s more good news, or even if there isn’t.

Decision time then…

In the past week I have been doing some research into the availability of haematologist/oncologists in the North West. So far I have been concentrating on the Chester/Wirral/Liverpool areas, but I think I might have to cast my net a little wider, so as to include the Christie after all.

There are very few of them about, if truth be known. I have asked the advice of the BUPA liaison company at work (we are not allowed to talk with BUPA directly) and they have come up with a name in Liverpool who I need to investigate further. We found one in Chester, but she’s recently retired and the name of the guy from the Wirral who couldn’t/wouldn’t see me for two months when I was first diagnosed was also suggested. I turned him down. What I need is someone who works in both private and NHS clinics again.

I have been offered the name of a specialist at the Royal Marsden in London, but the thought of having to go there to see him on a three monthly basis and worse still, have to go there and come back after treatment, really is a bit of a non-starter.

So, I will look into the Christie in a bit more detail.

I met with a friend for a coffee in town on Monday and, while it was a warm day, my face was absolutely dripping with sweat when I arrived at the rendezvous. I’d only walked about 300 yards – this is not a great sign. The radiologist that I saw in 2009 questioned me about a very similar incident when I was in a consultation with him, and within 3 months I was in the electric chair. All needs to be watched carefully.

I will gather all the information that I can and see if I can make contact with a new person this week, with a view to seeing them before the end of August if possible.

The reason for this “urgency” apart from the blog entries below? Well, I if I do need treatment soon, I want to be in the care of someone who cares and with the lymph node “feeling” still there, it might be sooner rather than later.

In other matters, a trip to see Roger Waters’ “The Wall” is coming along soon, as is the Wetzlar photographic trip, to include a week in the Bavarian Alps afterwards. The last holiday seems like a long time ago (in truth only five weeks) but October is a fair way off. Maybe I can take a few days off in the meantime.

I sold my Hasselblad (body) this week so now need to dispose of the lens and the Lee filter system that I bought to go with it. I enjoyed using the camera and loved the magic look of the photographs that the medium format produces, but I wasn’t using it very often. Even on Islay this year, I only took three photographs with it, so when the person from whom I bought it expressed an interest in buying it back, I said “OK”. Maybe if and when funds allow, a MF digital camera might be the way to go, but until then, I will stick with the Leicas and the Nikon.