Home

After passing the weekend in my monastic cubicle on Ward 16, where I received visitors at various times (including Sue and Amanda, my sisters who made the trip up and home again in a day) I woke up on Monday morning thinking I stood at least some chance of getting home on Tuesday or Wednesday. At about 9.30 a.m., the palliative care registrar, (Claire, who is always a breath of fresh air being one of those people with a bouyant personality) came in and said "I can't see any reason for you to stay, really David - can you? So let's sort out getting you home today if we can."

I was delighted by the news - while being in the hospital on Thursday and Friday had felt reassuring and safe (the proximity of readily available oxygen was something I found increased my confidence about walking further distances, and sleeping a deep and unworried sleep), the weekend had passed so unremittingly slowly that the prospect of another two days cooped up inside was more daunting than going home without oxygen.

All that needed to happpen was, first of all, for Claire to contact my GP and arranged for oxygen to be provided at home some time during the week (and it turns out, possibly as early as Tuesday), secondly for me to be trained in how to inject myself with fragmin and to obtain a supply of it to take home, and thirdly, in order to prevent having to come into the hospital again early next week, to have the urinary catheter replaced.

All went remarkably according to plan, as by two p.m. I was laying on the bed, all other tasks completed, awaiting the removal and insertion of the catheter. The last replacement was, as I may have said, remarkably painless, as it was completed by a nurse on the day ward without complication or fuss. This time, it was the turn of one of the junoir doctors (the same one, it turned out, who had drained my lung of fluid on Friday). Unfortunately, the catheter got stuck on the way out - something which had always been known to be possible, and the major reason for the district nursing team not wanting to tackle it at home in the community. Being a young, and junior doctor, he was, at the onset of the catheter's reluctance to participate, almost immediately flummoxed, and to see him suddenly stand back and almost wince as some blood and discharge made an unpleasant appearance did nothing to inspire my confidence that this was going to be a success. He stopped, and said, "I think we'll get the urology team onto this, as I am afraid this is something a little beyond what I have dealt with."

I was hence left laying on the bed, my middle third covered by some absorbent cotton dressing material, as he and the nurse in attendance made a hasty retreat to the door. Still, I thought to myself, I'll be ready for three when Sarah can come and get me. How wrong was I! After forty minutes, the door opened and in walked a gentleman who introduced himself as "Ben, the junior doctor in urology, here to see if we can sort this catheter out." Whilst his demeanour had more confidence than my previous attendant, the phrase "junior doctor" left me a little concerned yet again, and less and less confident I would be going home at the prescribed time. The fact I'd been laying on a bed for fifty minutes, forty five off them with a catheter half in and half out of my once prized piece of anatomy, and my rear end beginning to hum slightly as the tumours registered their discomfort at being in the same place for so long, was beginning to chip away at my normally chirpy and optimistic disposition. Ben's plan was to remove any fluid remaining in the retinaing baloon at the inner end of the catheter using a syringe, and thereby "with any luck" facilitating it's removal. I looked at the ceiling and prayed for it to work. Ben set about his task, removed a couple of millilitres of fluid, and then gave a gentle tug on the exposed end of the catheter, which refused to play his game and stayed firmly stuck. "Mmmm," said Ben, "I'm afraid that hasn't worked." By this time, I had been in the same position for an hour, as 3.10 p.m. rolled around and Ben looked at the offending piece of equipment with a puzzled expression. "What, " I asked him and the attending nurse, "happens if I want to go to the loo in this state?" They looked at each other in a way I found completely unreassuring. "Um, I suppose," Ben began, "we'd do a bypass." Fortunately, I had gone to the loo as a precaution when the procedure first began, but as time wore on, the course of nature would not be thwarted, and eventually matters would become, literally, more pressing. "The Senior Doctor is in theatre at the moment, but I will have him paged to come and attend to it as soon as he is free," said Ben. "Which will be when?" I asked him. "About four."

Unable to do anything but lie there and wait, I told him OK, and could he please hurry it up if possible. Ben left at 3.20, and a few minutes later, Sarah arrived. I had called her to let her know of the delay, and she had taken it upon herself to come in and see if there was anything she could do to help things along. I have already mentioned her resourcefulness and ability to make things happen in a tight spot, and thank God she turned up when she did. At five to four, nothing had changed, except for me getting more uncomfortable laying in the same position, and my room remaining apparently off limits to anyone who might be able to do anything about it. At this point Sarah said she was going to see what she could find out about the Senior urologist's ETA. As she walked along the corridor, she almost literally bumped into Nick Woodcock, the consultant surgeon who had orignially operated on me in 2006, and who had been a constant follower of my progress and a reader of this blog. "Do you know anything about urinary catheters?" Sarah asked cheekily. She told him the situation, and that I'd been laying on the bed for just coming up to two hours. He said hello to me as he came in, and snapped on a pair of gloves. "It's just got stuck," I told him. Nick took hold of one end of the tube and said, "Most of it's out. There can't be much left in there, can there." And to prove his point, he pulled at the tube hard enough to move it (and hard enough to make me groan and wince with some severe pain). He said sorry to me about four times as he continued to pull on it and removed the thing which had baffled the juniors in ten seconds. Ten uncomfortable seconds, it's true, but the sense of relief afterwards was so great, I did not give a damn about the brief pain. "There, " he said, "got it."

Sarah had been holding my hand through this, and hearing my moans must have felt terrible for her, but the fact the tube was removed and quickly disposed of was a relief to her too, and we were both immensely grateful. "Nick," I said, "You don't f**k about do you?" He told Sarah and I that it requires the confidence to just "give it a good pull!" He threw the old one in the bin - I'd half expected to see a huge bowling ball of tumour on the end, but there was nothing more than a small piece of indeterminate tissue. Before he left I told him, "I'll have to buy you a pint some time." Sarah pointed out that after what he had just done to me, that was not the usual response! The absorbent dressing needed to be rearranged, as some blood was still seeping from me, and that done, Nick left and said he would try to arrange for the new one to be fitted as soon as possible.

Left alone again, I told Sarah how grateful I was she had been able to make something happen - my mind had been thinking I would be heading for surgery instead of heading home, and to have Nick's intervention provided an immediate sense of renewed hope of actually making it home. It was, however, not until just before 5 that the urologist arrived. (We later learned from the nurse who had been witnessingevent all afternoon, he had been reluctant to do it because "the medical team should be doing it. He's their patient." thank God, she persuaded him to just do it as he was here anyway. Within five minutes, and more discomfort (why, I have no idea, as the last time one was inserted it was completely unproblematic, in spite of the lymphodoema complications - it can get so bad as to cause the penis to disappear internally completly, and therefore finding the aperture for the catheter to be inserted through is a little more challenging, being a literal shot in the dark!), I was done. Sarah and I now had to wait just another forty minutess for the fragmin supply to be brought to the ward, as the dispensing part of the pharmacy closed at 5.15. Sarah loaded the car with what she could, and we then awaited the arrival of the drugs. At six thirty, we were out of there - merely three and a half hours later than we thought.

Today, however, the impact of that delay, especially on Sarah, has become more apparent. The thought of me going into surgery was one she had also had as I was lying on the bed in the room, and, of course, the pain she had seen me go through, left her completely exhausted, physically and emotionally. She has had to cope not only on her own since my admission last Wednesday, but has had to take care of Emma (she has had a dreadful cold for the last four days), has had to handle all the emotions without having me to talk to when she needs to, and all of that taken together has meant this has been one of the toughest weeks yet for her. What's more, it's marked an end to a time when my cancer, and handling its symptoms with the pain management and dressings, the skin massages and the regular doctor's appointments, had become almost a routine. This kind of severe interruption is, should things continue to get worse, going to be more commonplace, and, as I think I wrote the other day, heralds a time somewhere in the future when I do not make it home, but get transferred from the hospital to the hospice, or from home to the hospice. The fact Sarah has been able to carry on at all this week in the face of all of it is testament to her extraordinary nature, but she fears she may not be able to carry on this way because of her becoming ill through the stress and worry.

This time round, Claire and Trish have stepped up to help in a way I knew they always would (last night claire made tea for Emma whilst Sarah was stuck in the hospital with me, left a lasagne for Sarah and I to eat, and took away all the ironing to do). If family were closer to us geographically, the load could be greater shared, but at present, Sarah and I are being propped up by hands of friends who are continuously there for us when needed. The fear is, those times may be coming more frequently now. But, speculation about the future is as pointless now as it has ever been, and what's definitely true is Emma has decorated our Christmas tree in my absence and done it far better because of my absence, and I still have a couple of presents to buy and have been delayed by my unexpected respite and recovery. And to come home to both Emma and Sarah yesterday was worth anything I might have gone through in terms of discomfort - I now am just looking forward to a Christmas where we get the time to enjoy each other's company, that of our friends, and can hopefully forget for a few moments each day that this, the doctors assure me, is my almost certainly my last.