It tells me how often pages are viewed (about 30-40 page views per day, over the past month, on average, and even on Christmas Day about a dozen of you checked up on me, which was nice of you!), and who the top referrers are (Frosty Intervals by a wide margin, but also Kevin/Joan’s and Ryan’s blogs usually feature). One stat which I found interesting this week is the record of the top-five search terms that people use to find the blog:  “icyjumbo blog” and “A mammoth undertaking Chris Booth” are both fairly obvious ones which I would expect. But this week a new search term has appeared on the top five list – “icyjumbo pillows” which is leading people to this post about a way of arranging pillows that my Gran learned as a trainee nurse before the second world war.

There was clearly a story behind this spike in interest in an obscure blog page written over 18 months ago. It turns out that my sister has a colleague whose husband is recovering from a fairly significant operation.  He slept pretty badly in hospital, as he couldn’t get comfortable even with the fully-adjustable hospital bed, and his wife was concerned about how he would cope back home in an ordinary bed. So my sister told her about our family’s way of arranging pillows, and said that I’d blogged about it with detailed photographic instructions when Chris had a bad back. She did a search for “icyjumbo pillows”, found the photos, and printed off the page for her colleague. It was subsequently reported back that the colleague’s husband had slept so much better using “the pillows” than he had in hospital, and was really pleased to learn the method. It looks to me as if he’s been recommending it onwards, possibly to other patients at the outpatients clinic, and telling them how to search for it.

That’s really nice to know – that complete strangers are getting a better night’s sleep as a result of a throw-away blog post which has taken on a life of its own since I posted it. My mother is rather annoyed though – she says that if she’d known I was going to post the photos, she’d have ironed the sheets first!

Normally I know the day I will go in, and am supposed to ring at 08:30 to confirm,  but often the ward’s bed manager will phone the night before to say there is a bed free and that I should come in. Sometimes, however, there is a delay as there was this time, so there is no guarantee that the treatment will happen on the scheduled day.

Before I go, I will pack a bag of necessaries. I think you’d be surprised at what I consider necessary, so I’ll list them here:

• two changes of clothes, just in case I have to stay an extra night (as I did this time);
• enough money to get a taxi home, or the phone number of a reliable alternative transport, in case of unforeseen emergencies;
• washing things, including a flannel so that you can have a stand-up wash — you won’t be able to shower with the drip attached;
• a towel;
• snacks and drinks;
• something to keep you occupied — I like to have a choice of books, and iPod, and a laptop with a 3G dongle;
• pen and paper, to take notes about when to take prescriptions, and to write down blog ideas ;
• a mobile phone, to keep in touch with the outside world;
• chargers for all the electronic devices;
• slippers and dressing gown;
• all the medicines I have been prescribed, including the ones left over from the last hospital visit, and my drugs chart which tells me what I take, when.

Eventually I will get a bed, and then I try to get to the hospital for mid-morning, certainly by lunch time. They will detach my bag and fit a pre-hydration saline drip as soon as I arrive. The drip is hung on a rolling pole with a pump that is set to deliver a set amount of liquid over a set period of time. The pre-hydration lasts for about four hours. Towards the end of that drip I will get the first anti-nausea injections (through the drip line), and the first chemotherapy drug, epirubicin, also as an injection or three through the drip line.

The second chemo drug, cisplatin, is given from a bag as a drip lasting another four hours. After that come two post-hydration saline drips, each lasting six hours, so the second one is put on some time in the middle of the night. The pumps have sensors to detect when any problem occurs. Each problem seems to have a different alarm code. The most common problem is an “Occlusion below pump”, which usually means that I have bent my elbow and kinked the line going into my arm. That’s a little like putting a tight bend into a garden hose to temporarily stop the flow. This alarm is a bing bing bong. After a few times seeing the nurse deal with it, you realize that by straightening your arm you have removed the “occlusion” and can safely do what the nurses do, which is to re-start the pump. Simple. Other problems are a little more complex to deal with, so take an expert. And you will get used to the sounds of the pumps’ alarms going off. They do it all the time. They even do it to let you know that they’ve finished. Bing bong.

During the day you will get a menu for the following day’s meals. Even though you’re probably going home the next day, it’s worth choosing something just in case. And even if you do go home the next person in the bed will be grateful. The meals are not huge, however, so if you are eating normally when you’re not in hospital, that’s when the snacks will come in useful. But it’s not a disaster if you forget to bring a snack, because you can buy more at the tuck shop in the main lobby. You can also get a daily newspaper. If you’re really lucky someone will bring a trolley with sweets and newspapers so you don’t have to make the trek or rely on your visitors to bring you things.

A few times a day the observations torture team come around with their testing equipment. Perhaps they won’t torture you, but because I have high blood pressure, the cuff squeezes my arm very tight. They measure the oxygen levels in your blood (O2 sats, which they like to be in the high 90%s) and also take your temperature, probably in your left ear because most nurses are right handed.

The other regular-ish round is for dispensing your drugs. You will have a lot. You will likely have your own prescriptions which you will have been asked to bring in with you, and the nurses will dispense both your own drugs and the ones prescribed during the chemotherapy itself. These are mainly to control nausea and sickness, and they work extremely well. I never feel sick at all while I am having chemo, which I put down to the this drug regime. One of the drugs you will likely be given is a steroid, Dexamethasone, which is wonderful. Steroids give you lots of energy, and they make me very outgoing and gregarious. Everyone else is on the same drug, I think, so the ward is almost always a fun place to be. There is always someone to talk to if you want to. Often the nurses will stop and chat too, even though they are very busy.

The last things that happen to me before the visit is over is that I get a new bag with the final chemo drug, 5-FU or 5-fluorouracil, attached to my PICC line, and then that I get a visit from the pharmacist to make sure that I have an adequate supply of all the drugs I need. The pharamacist will be giving you a TTO pack, which stands for to take out I think. That pack will have everything you need to get you through to the next visit you make to the hospital, which is for my weekly bag change in my case. There will also be some anti-sickness drugs, probably more than you need, so you will be asked to bring back the spares on your next chemotherapy visit. It’s worth writing down what you need to take when, because it can get quite complicated.

I have found every single chemotherapy hospital visit a really good experience. It’s strange to recognize it, but it really is true. You are totally looked after. The drugs keep you feeling good, and the people always turn out to be friendly, and to have a lot in common with you, which gives you someone with whom you can compare notes, and from whom you can get tips. Whatever it is, it’s not something to be afraid of. I welcome my visits to the hospital. You probably will too.

Things were going rather well at the beginning of the week. The sickness of the previous week seemed banished and I had plenty of energy. I had found an even better arm protector for the shower and I was looking forward to the third cycle of chemotherapy.

But in the second half of the week, I found that I had hurt my back, probably from over-exuberant snow shovelling, which made daily living quite hard and sleep almost impossible. Losing sleep is one of the best ways to lower my mood, so I haven’t felt great during the last few days. Even so, we did manage a nice day out driving around the countryside and visiting an English Heritage site on Friday. Better yet, we went to the John Williams concert last night, which was wonderful. His style is so economical, and he is so normal, that it is a wonder that such great music comes from him. He played Albeniz’s Asturias, Brouwer’s Volos Concerto, and Myers’s Cavatina. I don’t know why he is so keen on Cavatina, which always seems overly sentimental to me, but he is, and it brought the house down. I preferred the Albeniz, which I have played myself (very badly and slowly), and I found the Brouwer quite a challenge.

I slept very well last night, and was looking forward to a fun day when the nurse phoned to say that there was a bed free, and that I should come in this afternoon, so here I am. I shall be in for two nights, which means, unfortunately, that I shall have to cancel two dates with friends. Such a shame, as my time to see people is limited not only by their availability, but also by my medical necessities.

I have finally cut my morphine intake right down to zero, and am delighted about that. I didn’t want to be dependent on pain killers, especially ones that had such a … errr … clogging effect on my insides.²

My weight continues to rise, and was 11st 10lb (164 lb for our American readers — hello Ryan) this morning. That means that I have put on at least 7 lb in the last two weeks, which I find amazing. I have been told that there is no reason why I should not continue to put on more weight if I can do so. I asked about exercise, and was gently dissuaded from taking too much, not while I am on this aggressive a treatment regime. But walking is OK. How about that! Eat more and don’t bother exercising. Treating cancer truly is a weird way of life!

I’ve been eating better, partly I think because I am not suffering from so much nausea. A nice consequence eating more has been that I have gained a surprising amount of weight. I weighed 11st 8lb this morning, an increase of six pounds in the week. I don’t believe all of that is true body weight, though. Some of it must be because I have replaced the contents of my gut, I’m sure. To cap it all, I’ve finally got rid of the constipation that had been bothering me since I started taking morphine before the chemotherapy started. Phew!

There has also been very little pain from my cancer, so I reduced my morphine intake once again, and am now taking only 10mg per day. I see no reason at the moment why I shouldn’t come entirely off the morphine this week. I have had some niggly pains which are probably related more to the chemotherapy than to the cancer. For example, my teeth feel very sharp, and so I have a sore mouth where I’ve caught my tongue and the inside of my cheek on them. The skin on my thumb has split, and is taking a long time to heal. Split fingers and a sore mouth seem to be common complaints associated with the chemotherapy, so I suppose I must expect something of this sort. Finally, just to add injury to insult, I’ve pulled a muscle in my back which is simply annoying. I think that happened when I shovelled the snow that fell this week. (Of course, that I was able to shovel snow is another good sign )

Another niggly thing has been the sniffles, which haven’t improved. Worse, I have been blowing my nose so often, and the lining of my nose has been thinned by the chemo drug, which has resulted in some spectacular nosebleeds. The worst lasted 45 minutes, which was a little worrying at the time. None of the others since has been so bad, which is a relief.

I think that a combination of the reduced morphine levels and the sniffly nose has made it harder for me to sleep well. Even that has improved towards the end of the week, but I would prefer to get a little more sleep this coming week.

To finish on a high note, I have finished taking the photographs which were the second half of the tasks for my project. I’m extremely pleased with them, although I haven’t heard anything from my collaborator. I do expect to find out what he thinks later on this week. I’m sure he’ll be pleased too.

To summarize, although I was quite sick at the start of the week, most of the things that were bothering me have improved, leaving only a few niggles. I’m much stronger, which meant that I could clear the heavy snow that fell, and my photographic project is going well. A good week.

Here is my little sister, Sophie, with Sally. Sophie’s hair is still blonde, but not quite as fair as it was then.

Here is the whole family, my father Alan, then me, then Sally and Sophie. I do remember the dog’s name, but it’s the answer to a security question, so I shall keep it private.

Finally, here I am siting on my mother’s lap. It looks as though she was reading to me while we were having tea. I think the plasters on my knee were new, so I may have been in need of some comfort. I’m afraid I don’t remember the ayah’s name, much to my shame, but I was less than five years old when we left Kenya.

I wish I could remember more about what Sally liked about Kenya. I’ve already mentioned the warmth. I also know that she enjoyed playing tennis, and I inherited her Dunlop racket when I started playing tennis when I was eleven.

When I was very young, and we were back in the UK, I can remember that she played the piano a great deal. I remember a lot of Beethoven sonatas. Later, after she contracted multiple sclerosis, she found that her fingers wouldn’t do what she wanted to, which meant that she played a lot less. She would still accompany both Sophie and me as we played the violin and cello respectively, or when I sang. Sally was always very proud of our (Sophie’s and mine) accomplishments. I particularly remember one evening when I was nearly nineteen years old. I had sat the Oxford entrance exam, then left school to take up a gap year job 150 miles from home. The letter was sent home, so my mother sat waiting for me to get home from work and phoned me at one minute past six. Her voice was trembling when she told me what she was holding. “Go on, then,” I said, “open it.” She did, and whooped, as the letter started with “I am pleased…” I am certain she was happier than I was that evening, and I know that the achievement was celebrated with some earnestness that evening. It still makes me smile to think about how happy she was that day.

If you have happy memories of my mother to share, please write about one of them in a comment. I’d love to know how you think of her.

Chemotherapy drugs are very powerful. Not only do they attack the cancer, which is good, but they also attack the entire body, including the immune system. The doctors told us that it’s very important to keep a careful eye on how my body is responding to the treatment. Part of that care is ensuring that I come into contact with as few bugs and illnesses as possible, as it is hard for me to fight them off, and they can potentially be very dangerous, even something as apparently trivial as the common cold. I took seriously what I was told, but I didn’t think too much about the implications until I noticed that my body was reacting in a different way to cuts, bruises, and a cold sore.

First, I have had a cold sore for nearly ten days now, despite treating it with aciclovir four or five times per day, from as soon as I noticed the tingling in my lip. I am used to getting cold sores, with one breaking out every year or so, usually when I get a bit run down. Normally the aciclovir would get rid of it in two or three days, or if I left it too long before starting the treatment, then it took a maximum of five days. This time it’s taking a lot longer. Thankfully the treatment is working and the cold sore has almost gone now. It will be nice to be able to kiss Gillian once again. That’s the incentive for continuing the treatment so carefully!

Second, I’ve noticed that the skin on my hands seems a little more prone to splitting. Maybe it’s because I’m being more rigorous about washing my hands, but they don’t seem to be that dry. The skin just splits spontaneously. Normally these splits would heal in a day or two, without any help. Now, however, I find that I need the help of an antiseptic, which does the job nicely.

Third, I’ve caught my lip between my teeth when chewing, and now I keep catching it. Not hard enough to break the skin, but maybe enough to bruise it a little, and make it swell a bit.  The only way I’ve found to stop catching it is to pout while eating. What a sight that must be! But it’s such an odd thing to do that I forget, and every now and again I catch it again. I am chewing less forcefully, so I hope it’ll heal properly. I’ve been given a strong mouthwash to help prevent mouth infections, and I think that is probably helping out too. And speaking of strong, the mouthwash is so powerful that I lose sensation in my tongue for about 15 minutes after slooshing and gargling. It was quite disturbing the first time it happened, but I’m getting used to it now. I can tell it’s doing some good at any rate.

Finally, I’m under instructions to take my temperature at least twice and sometimes three times per day. So far it has stayed below 37 C, so all is well. If it goes above 38 C then I need to call the doctor straight away. They were quite serious too, so I’ve been really good about it.

Tomorrow will be my last day of purdah for this cycle. On Wednesday I’ll get my bag of 5-FU changed, and on Thursday I’ll celebrate leaving purdah, when I meet friends for coffee. I’m really looking forward to it.

I woke a couple of hours later in pain, and needing to urinate — recall that I was very heavily hydrated as part of the chemotherapy. Suddenly one of PNB’s family was sent running for a nurse. There were sounds of distress from the next bed, so it was with some relief I heard the nurses walking up. Another medical person was sent for, and the three of them started work.

Over the next three hours these three battled through various difficulties, all the time displaying standards of professionalism such as I have never seen. Three or four times it seemed to me, listening behind the curtains, that huge problems were met, confronted and overcome, with only what was available in the middle of the night, and boundless courage. At times the difficulties pressed more heavily than I thought anyone could bear, but the team all rallied around, worked their information–decision–action loop again and again, and it got them through. At about 5 a.m. PNB seemed once again stable.

I felt amazingly privileged to have witnessed, even at a remove, an episode that was so frequently trying, so frequently almost past hope, yet was recovered every time by this team of people working relentlessly as a true team. They supported each other professionally, medically, emotionally, in short in every way possible. Their principle tool for that appeared to me to be the information–decsion–action loop, as I could hear it being invoked all the time. And boy! did it work. It was an utter inspiration to me that you don’t have to be flattened by events, you can manage yourself and them, no matter how difficult, provided you apply that one discipline.

I couldn’t help but tell the team the following morning how impressed I had been with what they had achieved that night. Thankfully, it was taken in the right spirit. I realized later was that I was certain that everyone on that ward would have behaved similarly. I don’t believe there is a better group of people caring for cancer sufferers anywhere in the world, and I am humbled that I have been lucky enough to be cared for by all of them.

Not so bad, really, as they still have to insert the PICC line, and that can’t happen before tomorrow anyway, but not a little frustrating.

More news as and when…

As we guessed, the duct was blocked by an enlarged lymph node. The upside was that it was possible to use a stent to cure it. The downside is that now the lymph node is being squashed by the bile duct! That is more painful than I was expecting. Moreover, my gut appears to be filling with black bile, at least I think it’s that variety of bile, which is making it hard to eat. The general pain has made it hard to get comfortable in any position, despite liberal application of the strongest painkillers I have. This evening, however, nine hours after the procedure is over, the pain is becoming quite tolerable, and I don’t think I’m going to need another pain killer until bed time.

The most nerve-wracking part of the day was returning home afterwards. While I was in theatre, the snow came down, and laid a two inch blanket over the whole of Worcestershire. The drive home lasted three times longer than the journey in to the hospital, all the time facing the prospect of not being able to climb the final hill to our house. Fortunately a lorry led the way through Malvern and up British Camp, so we were able to drive all the way home. I didn’t fancy a repeat of an earlier experience, where we walked nearly four miles in the snow. More, even heavier, snow is forecast later today, which may make tomorrow’s visit to the hospital too difficult. I hope we can do a telephone meeting instead.