Ticking along fine at the moment

White blood cells are down, as are platelets and haemoglobin. But, all to be expected and nothing too concerning at the moment and I told the specialist nurse that I was surprised at how not-unwell I feel. Let’s hope it’s like this all the way through, and that the treatment is actually working without me feeling it.

However, she has advised me that aeroplanes are far too filthy for me to be allowed anywhere near one.

So, plans for the gathering of the Leica clan in Zingst may now have to involve a long drive, a ferry or two and an iPod full of Radiohead, Pink Floyd and Beethoven.

Will get there if I can…

(Actually, said nurse advised against going “anywhere foreign” at all, as “you wouldn’t want to get poorly abroad”. I think I know what she meant 🙂 )

This is a real shame, as I missed last year’s extravaganza through being in hospital. This cancer really does mess up your life, even if you’re not “ill” with it, just by restricting you from what you are “allowed” to do. Will have to wait until the 4th treatment and the CT scan that follows, before making a decision.

Fingers crossed.

I got some shots down on the marsh at the end of the road at the weekend, with my newly converted 250 f4 lens on the Nikon. There’s one as this week’s photograph, but it really does show that there is no substitute for length. Really “need” a 500mm or even longer to make the best of the opportunity there.

Two steps forward, one step back

OK, so we are now in week two of this process and things are slightly different.

Until yesterday, I was taking the Prednisolone, the “P” part of the R-CVP. This is a steroid, and the dosage given is pretty high. Today is the first day of not taking it, and I can feel the difference. I am now tired (it’s lunchtime), whereas last week, it wasn’t until later in the afternoon that the tiredness started to kick in. I need to watch this, as I am back at work tomorrow, properly. Maybe I will need to to half days or similar for a while.

Apart from that, things seem to be going OK.

I was hoping that the Ilford print of the Hadrian’s Wall photo might have arrived today, but no luck, I’m afraid. It wil be interesting to see how they print that, from a digital file, onto real photographic paper.

So far so good

Well, yesterday was an experience. But nothing like as bad or traumatic as I was anticipating – I was actually surprised.

Arrived at the hospital at 8:15 and waiting for the department to open at 8:40. Had bloods taken (they check haemoglobin, white cell count and platelets to check that your blood is in good enough condition for you to receive the treatment)

Then, after seeing my consultant and signing the consent form, had a good meeting with a specialist nurse, who explained what each of the 4 parts to the cocktail were, and what they did and what the side-effects are, they put me on a saline drip for an hour or two. This is to make sure that you are well hydrated before they hit you with the nasty stuff. It turns out the drugs are prepared specially for each patient on the day. The dosage is generally patient-specific, excepting for the Rituximab, which is given the same to everyone. But, that too is made up specially. It costs £2,000 for a 250ml bag, and “We don’t like to put it down the sink if you don’t arrive”. Which is fair enough, when it’s my tax that pays for it.

The first two bags of drugs, the Cyclophosphamide and Vincristine go through reasonably quickly, but the Rituximab is the one to which people get an allergic reaction, so they start that off slowly and gradually build up the through-put rate. They give you anti-histamines and paracetomol at then start of the procedure, to reduce the likelihood of reaction, but I was very fortunate. Apart from my hands going cold for about 10 minutes, I suffered no ill effects.

In fact the whole day went very smoothly. I was there until an hour or so after closing time, because of the time it took to administer the last of the drugs, but next time, things will be quicker.

Toady, I am at home, as I will be for the rest of the week. I’m not feeling too bad, it has to be said, but I didn’t sleep very well last night and am pretty tired, so I just have to take things easy. However, In readiness for my hair falling out (which it most likely will), I have been to the barber and had a “Nr 3” all over. “Are you sure?” he said…

I have to go back to the clinic there on both of the following Wednesdays between now and my next course. They need to check the blood again, as the treatment basically wrecks the white cell count and haemoglobin levels. This will leave me vulnerable to infection, particularly at the end of next week, so on the assumption that I feel well enough to go back to work, I need to be very careful in meetings. If anyone has a cough or a cold, I will need to make my excuses and leave, as a chest infection could kill someone with such a reduced system.

In summary then, things could be a lot worse. The additional drugs that you have to take, to prevent the sickness and stop stomach upsets, seem to be working fine at the moment. Fingers crossed, things continue as they are.

It starts next week

Much as I expected, the results of the CT scan have meant a course of chemotherapy being recommended and booked. We start on Wednesday 10th February.

If I am lucky, I will need only six treatments, one every three weeks. If I am unlucky, I will need eight. So, this is it until at least the end of May, if not the beginning of July.

The cocktail of drugs that I am to be given is known as R-CVP and consists of Rituximab, Cyclophosphamide, Vincristine and Prednisolone. The first three are given intravenously, while the last is a steroid that is taken orally, over 5 days, starting on the day of the iv drugs. If you want to know more about these, there is a very good leaflet available here: http://tinyurl.com/ya8oo24 and Macmillan also have something very useful: http://tinyurl.com/y9mh3e7

Helpfully, these leaflets also list the side effects that may or may not come. Anything from a dry mouth and mouth ulcers, to a trigger for diabetes, or even other cancers. I could be manic or depressed, get constipation or bladder irritation. I could get pins and needles or low blood pressure, or… So, it’s all exciting stuff.

The first course is, apparently, the worst. Once they have seen how you react to the above, they can tailor the remaining sessions to a certain extent. So, if you do get nausea, they can include an anti-nausea drug the next time. It takes all day to administer the drugs in the hospital, and the first session may involve an over-night stay too.

I have been advised that I will need to take at least the remainder of the week off work and maybe the next week too. However, I expect that for the following sessions, just the three days will be necessary. At least I hope so. That would just mean that I would lose three days every three weeks, which isn’t so bad. But we will see. No doubt I will post here what happens…

If this treatment works, I have been advised that this should knock the disease back for the next 5 years or so, at which time another round of treatment, with more powerful drugs will be on the cards. Eventually, there could be bone marrow transplantation to look forward to and there is some good work being done with stem cells at the moment, which may have come good by the time I need it. I have decided to pass on the mistletoe for now…

One of my friends has suggested that I keep a photographic record of what happens while I am in hospital. I’m only going to be in there for a relatively short time, but I will look at making a project out of the next few months for sure.

So. Let’s get on with it. Plenty of people have been down this road before and come out the other end smiling. There’s no reason why I shouldn’t.

🙂

PS – Top Tip for a really excellent film to watch – “Moon”.