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A very busy day

By Gillian

Today Chris had four hospital appointments in two hospitals in two separate counties. A very busy day!

He started the day in the Oncology ward at Cheltenham hospital, where he has been for the last two nights having his fourth cycle of chemotherapy. I drove down there to pick him up, arriving at ~10:30 this morning, to find the nurse just finishing plumbing him back into the 5-FU WalkMed pump. The team at Cheltenham knew that we had appointments in Worcester later, so had prioritised him in order to get him ready to leave hospital as early as possible. Once we’d packed up his bags, we were ready to go by 11am.

Then we drove up the motorway to Worcester, arriving around 11:45 for a 12 noon appointment in the nuclear medicine department. They injected him with a radioactive tracer to help the contrast for his bone scan later in the day, and instructed him to drink at least 2 pints of fluid over the next three hours to flush his kidneys and protect his organs from the radioactivity. He was also warned to stay away from pregnant women and small children for the next 24 hours, and not to fly within 3 days (or at least to expect serious questions from Airport Security if he did and set off the radioactivity detectors……)

After lunch we went up to the next appointment, for an MRI scan. This was scheduled because our oncologist is concerned about the fainting fit that Chris had a few weeks ago, and wants to check that it wasn’t due to an undiagnosed brain tumour. We’re all hoping that it was just “one of those things”, but if it is anything more serious then the sooner we know the better.

Unfortunately, no one had told the MRI team that Chris is permanently plumbed into the metal-containing WalkMed. They couldn’t let him into the scanning room, as the magnets would have ripped the battery out of the pump. But neither could they temporarily un-plumb him, as the unused 5-FU would have to be replaced with a completely new bag, and they couldn’t get hold of someone to authorise a new prescription. So after a lot of hanging around, it was decided that the best thing was to re-schedule the MRI for next Wednesday, when Chris has his bag changed anyway. So while he’s temporarily un-plumbed, we’ll nip along the corridor to get the scan, then go back to have the PICC line dressed and the new 5-FU prescription hooked up.

Finally, we went back to the Nuclear Medicine suite for the bone scan. We already know that Chris has a secondary tumour in his spine, as we’ve seen the sclerotic patch on his last CT scan. But the oncologist wants to know if there are any further bone tumours that could be contributing to his back-ache. We should get the results of that scan next Wednesday, when we can discuss treatment options (probably radiotherapy).

All in all, a very full day and we were both very pleased to get home!

01 04 2010 Gillian cancer Comments (4) Permalink

From hospital … at last

I was phoned at about a quarter to three this afternoon and offered a bed. The chemotherapy will start tomorrow, but because I am here it will be able to start bright and early. What a relief! Gillian was away on business, so Fabienne very kindly brought me to Cheltenham. Thank you, Fabienne, I’m so grateful you were there to help.

It’s been a little unsettling to have had all these delays. Totting up the plans and backup plans and backups to backups, I think we finally executed plan M. I can’t believe we could have been so creative as to have made 13 plans. We didn’t make them all right at the beginning, but as each plan dropped we made new ones. This is the longest delay we’ve had so far. I just hope we don’t have another delay like it.

There’s very little else to say, so I shall stop writing and settle in properly.

30 03 2010 icyjumbo cancer Comments (7) Permalink

Uncertainty

Our lives at the moment are ruled by uncertainty. I never know from day to day exactly how I will feel. Will I be nauseous? Tired? Full of energy? It’s impossible to tell in advance. The uncertainty doesn’t stop with how I will feel; it extends to my treatment. I was supposed to go into hospital four days ago to start the fourth cycle of chemotherapy, and yet I am still at home. Even now we don’t know when I will actually go in, although we do know that I am moving higher up the priority list. But underlying all this uncertainty is one huge, almost inevitable certainty, although even the date of my certain death is uncertain.

It is the uncertainty that makes day-to-day living hard to manage. Gillian and I have completely different ways of coping with it. I cope by simply ignoring the uncertainty, making as few plans as I can get away with, and a total refusal to be embarrassed when I do have to cancel plans at short notice. For example, I was supposed to meet a group of friends and ex-colleagues for coffee tomorrow afternoon. Who knows, I may still be able to do so, if I don’t go into hospital tomorrow, but I have had to warn them this evening that I may not make it tomorrow. But I’d still love to meet them if I don’t go in so I am very reluctant to actually cancel the date. Hard on them, and potentially embarrassing for me, but it’s simply part of life that I have become used to.

Gillian, on the other hand, copes by making backup plans, and secondary backup plans in case the first backup plan goes awry. It’s extremely stressful when the second backup plan gets activated and we have to start thinking about what to do in the now distinctly possible event that something else goes wrong. This matters far more to Gillian than it does to me, because she has a real life to lead, and has responsibilities at work, most of which are nowhere near as flexible as my own responsibilities. It’s easy to see why day-to-day life is harder on her than it is on me.

But the hardest thing of all  is that underlying certainty. It doesn’t bother me for myself, and there is no reason that it should. After all, I won’t be around to suffer the consequences. But Gillian, and the rest of my family and friends, will have a long time to live with my no longer being around. In the climate of uncertainty in which we live, this seems to me to be the worst sort of irony, that the certainty we crave will be delivered by the one event we all hope to avoid for as long as possible. We do both know that there is a small chance that I will live for more than the two years maximum that was predicted for me, but that is too remote a possibility to hang ones hopes on. Neither of us does so. I am content to manage by living each day as well as I can. I don’t think that can ever be enough for Gillian, and it saddens me enormously that it has to be that way. What can I do but apologise? Apologies are no consolation, I’m afraid, but they are all I can offer. In the face of all that, the only thing I can offer is gratitude and love, which I do without reserve. Gillian is a wonderful woman to look after and love me through this terrible time, and I am a lucky man. That’s the real certainty in this story.

29 03 2010 icyjumbo cancer Comments (7) Permalink

Cycle 3 week 4 update

What’s this? Week 4? I thought the cycles were three weeks long.

It’s true, they are, but there has been a delay in me going in to hospital to start cycle 4, so here I am, still at home, half-way through the fourth week of the third cycle. This extra long cycle means that I’ve had longer out of purdah in which to see people, and I’ve made good use of the time.

I had a long conversation with an old friend and ex-colleague, John. It’s been quite a while since I was able to have an extended chat, so we spent nearly two hours over a cup of coffee and a toasted tea-cake in a nice little café in town. Our conversation wasn’t of any great consequence to anyone else, but it was great fun, and wonderful to see him.

This weekend we were visited by my cousin David. I find him hugely impressive, as he runs his own small business leading walks around nice parts of England. Last year he was featured several times in The Times. This year he hopes to branch out into other parts of the British Isles. It’s an innovative way to make a living, and I was lucky to get some time with him before the walking season starts in earnest.

During David’s visit we went out on a fossil-hunting walk with Mark. He took us down some local paths that I didn’t know existed, looking for Silurian sea bed that has now turned into limestone plates. We found a few little fossils, but unfortunately nothing too exciting. Maybe next time…

My back is less painful than it has been, and I’ve been sleeping a little better, which has given me a bit more energy to do things. In particular I finally got back to recording a chapter of Dorian Gray for LibriVox, and had great fun with it, even though I found the characters of the two protagonists somewhat distasteful. I’ll be doing more recording some time soon, probably the next time I go back into purdah, as there’ll be little else to do.

My weight continues to rise slowly, and the nausea remains well controlled by the new treatment regime, so I’m rather happy with all that. All in all, another good week. Let’s hope that I can start cycle 4 really soon.

28 03 2010 icyjumbo cancer Comments (4) Permalink

Treating cancer with nanoparticles

Earlier this month some researchers from California Institute of Technology published a paper in Nature with the intriguing title Evidence of RNAi in humans from systemically administered siRNA via targeted nanoparticles. Let’s pick that mess of jargon apart, shall we.

RNAi is RNA interference, which means that the cell’s normal processes are interrupted. In this case the cancer cell was prevented from making a protein that was necessary for the cell to multiply. RNAi is a general name for a family of techniques. In this paper they achieved their goals by attaching small pieces of RNA (small interfering RNA, or siRNA) to a nanoparticle that they had constructed by combining two polymers in water. This yielded a tiny cancer-specific targetted bullet. It effectively switched off the tumour by interfering with the cancer cells’ ability to multiply, but it didn’t appear to trigger any sort of immune response from the body. Because there was no immune response no side effects would be expected. Best of all, the way to administer this is to inject the nanoparticles into the bloodstream, because they find their own way to the tumour and attach themselves to it. The more nanoparticles you inject, the more the tumour gets attacked. Nanoparticles that don’t find a tumour eventually break down and are eliminated from the body in the normal way.

The research for this is still at an early stage, having just successfully completed a Phase I trial, in which human skin melanomas were shown to be treated by the nanoparticles. There is still a long way to go before this becomes a viable treatment method for cancer, but it is an intriguing possibility for the future.

Evidence of RNAi in humans from systemically administered siRNA via targeted nanoparticles

27 03 2010 icyjumbo cancer Comments (4) Permalink

Cycle 4 postponed

I was due to go into hospital today to start cycle 4, but when I phoned in this morning I was told that they didn’t have a bed for me, and that I should try again tomorrow. I think I have to accept that going in on the planned day is an increasingly unlikely occurrence. Of four cycles, only the second started on the scheduled day. This uncertainty is one of the downsides of a public healthcare system like ours in the UK. The emergency care is second to none, but sometimes planned non-urgent procedures have to take a back seat when the numbers of emergency cases spike unusually high.

This is a factual statement, not a complaint. I have been the beneficiary of emergency care more times than I should like, starting when I was seven years old. I have never been disappointed with the treatment I have received when I needed it urgently. Nor have I been disappointed with the treatment I have received as a cancer patient, even when it was unavoidably delayed. The team at Cheltenham is superb, as I have written before.

However, this time has been a little more complicated than usual, as Gillian is away on business. She was only able to go  because Richard and Fabienne stepped in to babysit me overnight, and to take me to the hospital. The delay means that they have to babysit me for a second night, which is extremely kind of them. It is such a help to have such good friends. Thank you, both. I don’t know what we’d do without you, I really don’t.

25 03 2010 icyjumbo cancer Comments (4) Permalink

Recording for LibriVox

I’ve mentioned LibriVox quite a few times on this blog, but although I’ve been carrying out my duties as an admin on the site, I haven’t recorded anything for a long time. Someone posted a rather nice comment about an earlier recording recently which inspired me to get out my microphone again. Tonight I recorded, edited and uploaded chapter 6 of The Picture of Dorian Gray, by Oscar Wilde. This was the chapter in which Lord Henry persuaded Dorian Gray that he should feel no guilt for Sybil Vane’s suicide. We, of course, know better. Dorian treated a young, impressionable girl brutally, and the effects of that brutality showed up in the infamous portrait. Dorian has so little conscience that he is inclined to regard the portrait as the means of conducting an experiment to see how his moral choices affects his appearance in the portrait. Lord Henry is beginning to be revealed as almost psychopathically uninterested in other people’s welfare. The more I think about the content of this chapter, the less I like these two people.

The challenge, as a reader, is to find suitable voices for these rather unpleasant people. I made the decision early on that Dorian’s voice wouldn’t change throughout the book, to reflect the unnatural preservation of his body while the depiction in the portrait becomes more and more dissolute. I try to make Lord Henry sound bored and drawling, pleased with himself, purring like a cat with cream, or maybe even with a mouse. It has been a long time since I recorded chapter 5, so I was very glad that I kept some samples of how the main characters were voiced.

Now that I have re-broken the ice, I hope to be recording much more in the coming days. I have another long project on the go, the letters of Robert and Elizabeth Browning, in which I am reading the part of Robert, and a colleague on LibriVox, russiandoll, is reading the part of Elizabeth. This is a much larger work, and will take a lot more effort, but the individual letters are much shorter than normal chapters, so they make nice fill-in reading for when I can’t manage anything more substantial.

All that, and I had a long chat over a coffee with an old friend: a good day.

23 03 2010 icyjumbo librivox Comments (6) Permalink

Cycle 3 week 3 status

In spite of a slight hiccough yesterday, it has been an extremely good week. I’ve been on three excursions, received some test results, had very little pain, and even sold some redundant photography gear on eBay.

On Monday Gillian and I went to visit Gloucester cathedral. I remember it as being full of light, and rather airy, which indeed it was. I took a series of photographs of the nave, all at different exposures, with the aim of combining them into a single high dynamic range (HDR) photo. I’m still working on that as it has proved trickier than I expected. But the surprise of the visit was the wonderful enclosed cloisters, and their stained glass windows. When I’ve finished processing the HDR I’ll post some pictures.

On Thursday Hugh took me to Croft Castle, which was a lot of fun. And today Gillian and I went to visit Little Malvern Court which was opened in aid of the Soldiers, Sailors, Airmen and Families Association, with the Malvern Sea Scouts helping out. It baffles me why Sea Scouts would be set up in Malvern, which is almost as far from the sea as it is possible to get in the UK, but there we are. The grounds are quite pretty, and the house and church do provide a great backdrop for the garden. Spring is still a little late, so the daffodils and tulips weren’t out yet, but it was still very pleasant wandering around the gardens.

On Wednesday we finally got the results of the HER2 test, which were negative, meaning that it is pointless to try treating my tumour with Herceptin. Oh well, we always knew it was only a slim chance. We also got the results of my mid-treatment CT scan, which were very good. Both my tumour and the secondaries have shrunk, and we also found the reason for my back pain, which was the healing bone where a tumour had shrunk. Funnily enough, knowing why my back hurts has made it much less troublesome to me, and I even feel as though there is less pain. Weird.

There was a little incident yesterday when I threw up my lunch and then my temperature spiked, leading us to visit the hospital in Cheltenham. The senior house officer couldn’t really find anything wrong. He was expecting to find clear signs of an infection, but my blood counts were good, and my temperature went back down again fairly fast, so in the end he sent me home with some horse pills that he claimed were antibiotics. And indeed, judging  by today he was right to have done so.

I’ve developed a bit of an eBay habit. I bought an upgrade to my camera a few weeks ago, and decided that I shouldn’t keep the old one too. I had some lenses that couldn’t be used on the new camera, and some old compact cameras that I no longer used, so I auctioned off the cameras and the lenses. So far, even with the eBay and PayPal fees I’ve managed to recoup the price of the camera I bought. I still haven’t covered the cost of the two lenses, but I now have a complete replacement system with which I’m extremely pleased. You can tell that I’m happy because I’ve been posting quite a few pictures.

My weight has been stable, I’m still eating well, and have vomited only once this week. It has been another good week. In fact, this has been one of the best cycles so far. Let’s hope things continue in this vein.

21 03 2010 icyjumbo cancer
Day out
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Another unscheduled visit to hospital

By Gillian

Chris has been feeling odd all day today, but managed to eat a good breakfast (his famous scrambled eggs) and a full lunch – though we decided to stay at home for lunch rather than going to our favourite pub as we had originally planned, since we were both feeling well below par. However, after lunch he got really cold and shivery – even sitting next to the radiator, wrapped up in shawls and a blanket, he was still shivering. Then he threw up spectacularly and very, very copiously. But we took his temperature, and it was under 37 degrees so I wasn’t too concerned. In fact, after a short rest lying down on the sofa, he was well enough to watch the rugby match on the TV, as Wales trampled all over Italy.

We had planned to spend the rest of the afternoon and evening watching the other two Six Nations rugby matches today, but it wasn’t to be.  He started feeling worse again, so we took his temperature and found he was running a fever of 38.2 degrees. The standing orders from the hospital are that if ever his temperature gets above 38 degrees, we need to call the chemotherapy helpline for further instructions. So I phoned them up and explained the situation, and they said that they wanted him to come in straight away for immediate treatment.

That was a bit of a problem. My GP has been tweaking my antidepressant medicine (I went into deep shock followed by clinical depression when Chris was diagnosed) and wanted me to try a new drug that she said would help me sleep. Well, it certainly did, and in fact I was still like a zombie late this afternoon. So I did not feel safe to drive – I was struggling to keep my eyes open. And the hospital could not send an ambulance for Chris for at least four hours, which was far too late to get him the help he clearly needed. So once again we had to call on friends to help out, and Richard willingly agreed to sacrifice his Saturday afternoon and evening to take us to Cheltenham hospital. Thank you so much Richard – it’s such a comfort knowing that we can call on you (and indeed the rest of your family)  for help when we’re stuck!

At the hospital the nursing staff and duty oncologist went through the usual routine of blood tests, urine samples, blood pressure etc plus a chest X-ray which was a new one for us. I think they were looking for a lung infection, but in fact the X-ray looked normal. His temperature was still high and he “felt like crap”, but the blood tests showed that he was not neutropenic, that is his white cell counts were close to normal and should therefore be capable of fighting off an infection. They had found a bed for him and would have admitted him if his blood counts had been low. However, his temperature was reducing and he felt slightly better so the oncologist decided that the best place for him was his own bed. He sent us home with some horse-pill-sized broad-spectrum antibiotics and Chris went straight to bed.

I’m under instructions to keep an eye on him and if he gets worse or has another fever, I’m to take him straight back into hospital. So I’ll just stick to my old medication and won’t take another of my new pills tonight as I want to be clear-headed tomorrow. I’m just not prepared to take the risk of being caught out again by being unfit to drive in an emergency.

20 03 2010 Gillian cancer Comments (2) Permalink

A day out at Croft Castle

Yesterday Hugh, a friend and former colleague, picked me up at home and took me to visit Croft Castle, which is about an hour’s drive away. It is a grand old building, but not the first built on the site. There have been Crofts living at Croft Castle since 1086, although not without interruption. The house is now owned by the National Trust, although there are two apartments in which various members of the family still live. A profligate son in the Eighteenth Century spent all the family money on an estate in Wales called Hafod, which was at the centre of the Picturesque movement, which meant that the house passed out of the family for a few generations to pay the debts he incurred.

The house wasn’t yet open when we arrived, so we wandered around the grounds for a while, then had a short introduction to the family while we saw a few rooms in the house. Then it was time for lunch.

After lunch we went back to the house to explore it properly. Just outside the front door was this remarkably camp looking lion, who accompanied a Wyvern on the other side of the door. The Wyvern looked much more macho, but was less photogenic for it, so you get to see just the lion.

Inside the house the rooms were furnished in a late Eighteenth century style, I think. (I’m no expert on these things, and I didn’t take notes.) One of the most interesting ideas the Trust had had was to close the shutters in a couple of the rooms, and light them only with (fake) candles, so that we could get an idea of just how dark a Victorian or Georgian evening in the Drawing room would have been. It was surprisingly dim, with just a few pools of light around the candle-lit areas. It must have been extremely difficult to see the cards, or read music or a book, but we’re told that that is exactly what people did. I got the distinct impression that the pools of light would have made a number of isolated islands of people, who could have conversed in some privacy, certainly much more privacy than you might have imagined in a single large room. I now understand how some of the conversations reported in Jane Austen, for example, could realistically have taken place.

A number of the rooms have beautifully decorated plasterwork ceilings, a product of  a reforming wife in the early Nineteenth century, I think. There were also lots of paintings of family members, which were used as props for the custodians to tell stories of the family. They were quite interesting at the time, but I’ve forgotten them all now, I’m afraid.

Outside the house there is a large walled garden, with fruit trees planted in a pair of crossing avenues. There were huge numbers of snowdrops planted under the trees, and the crocuses and daffodils were just beginning to come up. In one corner of the garden was a vineyard, looking very bare and heavily pruned at this time of year. There were also quite a few formal gardens. It was quite pretty, even at this early stage in the year, but later in the Spring, and in the Summer too, it will be absolutely wonderful. I may even go back again, just to see the garden.

I don’t have a picture, I’m afraid, but outside the main garden was a large blasted tree that had been painted pink. Not a subtle pink  either, a really vibrant bubblegum pink. A strange idea, but quite eye-catching. I wonder why they did it.

Hugh and I spent about four hours at the house and garden, so it was obviously quite absorbing. It was extremely kind of him to take me out for this excursion. I certainly enjoyed myself hugely. What a great friend! Thank you, Hugh.

19 03 2010 icyjumbo Day out
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