What could be so hard about taking a shower, you ask. Normally I’d agree with you but right now I have a permanent drip feeding into my arm. It is driven by an ambulatory pump, which sits in a small waist pack attached to a belt. The pump feeds into a PICC, which is a semi-permanently installed tube running into my arm at the elbow, up over the shoulder and emptying into a large vein in my chest. The difficulty is caused by needing to keep both the pump and the entry gubbins clean and dry.

As you can imagine, I’ve gone through several design iterations to solve these problems. The arm turns out to be relatively easy to waterproof. I simply wrap my arm from wrist to biceps in cling film, and tape down the seams using micropore. That works pretty well. At least no water has got in so far. The only complication is that I prefer to wrap my arm myself, which is harder than having someone else do it, but my independence is important to me. It allows Gillian to have more of her own life. She gets little enough of that at the moment that I don’t want to encroach on it any more than I absolutely have to. But I’ve mastered the art of the dry arm, and am now flying solo.

The pump problem

The pump, on the other hand, is still not a 100% solved problem. The first idea was to hang it from a wire coat hanger outside the shower stall. Well, it certainly kept the pump dry. I did have to shower with my left arm vertically raised, all the time (picture a rather over-keen schoolboy yearning to answer the teacher’s question) meaning I could wash only with my right hand. I can reach most places with that hand, but not my right armpit. Maybe I could stand on tip toes, get Gillian to hold the pump a bit higher to give me more manoeuvring room, and yes! I gave said armpit a quick wash. Verdict: clean, eventually, but too tiring and inflexible.

Second attempt

We bought some largeish ziplock bags, put the pump in and closed the seal. We taped around the tube where it appeared at the corner of the ziplock. That seemed pretty good, but we put it in a second bag, just for extra safety. I carried the bag while I was in the shower. True, I had to sit down so that I could put the bag on the floor, but I had a lot more manoeuverability, so it was a definite advance. Still not perfect. More experimentation needed.

Final attempts

I wanted to free up my left hand, as it would make washing that much easier. The double bag method was working well, so we kept that. The idea was to try to tie a length of paracord to the bag so that I could simply hang the bag over my shoulder. We had a few goes at this, starting with taping the paracord to the bag. Big failure: after only a minute or two the water unstuck the tape and I was reduced to carrying the bag in my left hand again. The next design tweak was to replace the outer bag with one that had handles, to which I could tie the paracord. Better, but a disturbing amount of water got into the outer bag — acceptable — of which some got into the inner bag — definitely not acceptable. Tomorrow’s attempt will involve me trying to turn over the top of the second bag so that the water would have to climb uphill to get in. If that doesn’t work, I have enough paracord that I might even make a macrame bag. Maybe.

UPDATE

A couple of friends contacted me ask whether I knew about boat bags. I didn’t, but a quick search turned up loads, including some that might very well be exactly what I need. Even better, one of those friends, Katie, is putting a selection of boat bags in the post for me so that I may borrow the most appropriate one. Thank you, Katie.

I was recently asked what I thought of Barbara Ehrenreich’s writing on a positive attitude to cancer. I hadn’t read much of what she has written, but I found a piece on the Guardian that I believe sums up her opinion quite well. In brief, she finds that positive thinking is touted as an unthinking mantra, despite the lack of evidence that it actually makes a difference to clinical outcomes. Its proponents are quite aggressive in preaching the gospel, and seem on the whole to be fairly unsympathetic to those who can’t maintain that positive attitutude, no matter how they try. Moreover, they have no answer to the person who does maintain a positive attitude but whose condition worsens anyway. What can someone in that situation feel, except that they have failed?

In those circumstances, the “positive thinkers” are nothing less than cruel.

How does that square with my oft-stated wish to remain upbeat and positive. I think my approach is very different. I don’t welcome cancer as a gift. Alarmingly, some positive thinkers encourage cancer patients to do exactly that, according to Ehrenreich. Instead, I take the approach to optimism taught by Martin Seligman and others of the Positive Psychology movement. In his book Learned Optimism, Seligman shows that you can distinguish optimistic from pessimistic people by looking at how they react to events, both positive and negative. For example, the reaction could be “Oh, yes, that sort of thing is always happening to me.” You can’t tell from the reaction whether the event is perceived as good or bad. If it was a good event, then the reaction was very optimistic, whereas if the event were bad, then the reaction would be very pessimistic.

The reactions can be analysed for three things: how general the description of the event is; how pervasive in time; and how personal. A pessimistic person might say of a good event “Oh yeah, he compliments people like that all the time,” or “it was a lucky chance.”

An optimistic person treats bad events the same way as a pessimistic one treats good events. Both types seem to work hard to entrench themselves in a certain mood. I know which mood I would rather be in, and Seligman tells me that I can largely choose: people can choose their reactions so as to account for up to 57% of their mood. That is a huge proportion, and essentially gives the lie to the idea that there are naturally optimistic and pessimistic people.

I choose to be optimistic. That doesn’t mean that I take the view that all shall be well, no matter what. It means that when something happens I look for a positive explanation of the event. For example, when I found that my cancer had spread, putting it into stage M1, or stage IV depending on how you count stages, I could have taken that as entirely bad news. But I knew that the cancer had spread only to lymph nodes, and not to major organs. I’ll feel a lot better in the future, simply because my organs aren’t involved. That is something to be pleased about. I have countless other examples, too.

My attitude is different from positive thinking, because it is rooted in the facts of my case. The events happen, I choose how to react. I don’t react the same way no matter what the events are. For me that is a critical distinction. So far, it works. My mood is generally rather good, and I like it that way. It makes coping with the crap that much easier.

After trials, tribulations, and postponements I finally got my date, and went into hospital on Monday this week, as planned. There was still plenty of snow around, so we decided that it would be safer to get a professional driver to take me. Stuart, the taxi driver, was great. He drove sensibly in the conditions and I never had a moment’s worry.

I’ll try to remember accurately, but my memory of these events might not be perfect. Please forgive any errors of fact. They are the fault of my memory, not faults in what took place.

After being clerked in, the first order of business was pre-hydration, on a drip, overnight. In other words a litre of saline was pumped into my blood stream, and I had to monitor how much I urinated. I still had an infection that wasn’t quite clear, so only two of the three chemotherapy drugs that I normally expect to have would be given me.

On Tuesday, my birthday, the cisplatin drip started, preceded by an injection to help me cope with the sickness. I also started taking various pills to help with the sickness. These worked extremely well, and I hardly had any bad moments from that point on. After the cisplatin drip was finished, there were two other drips, with potassium and sodium salts, to help my kidneys cope. It was a very long process indeed, and I was glad I hadn’t tried to compress it into a single day. Some people do. I don’t know how.

I found it very difficult to sleep on Tuesday night, partly because there was a crisis in the bed next to mine, and partly because I was just not at all sleepy. The experience of that night is one of the most important I have ever had in my life, and I want to describe it more fully in a separate post.

On Wednesday the pump for the 5-FU was fitted, and I was sent home in an ambulance. Paul and Martin were great company on the drive home, and we had a lot of fun. The whole of Wednesday was great fun, in fact, something that surprised me greatly, but pleased me a lot. What a pity it turned out to be chemically-induced fun! Nevertheless, I want to try to remember how that day felt. It was a good feeling at the time, and I’d love to be able to recapture it for every cycle start. I was happy to talk with people, both staff and patients, and have fun conversations with anyone. I think other people enjoyed my company too. It was a lovely feeling, and well worth the attempt to recapture.