J: A busy week with the NHS

It’s been a busy week with the NHS but we have made some good progress.

On Monday my wife went to Bristol Eye Hospital for a follow up on her recent surgery to fix a macular hole. Her vision still suffers from the ‘hour glass’ effect and the surgeon said it was inhibited from further improvement by scar tissue, which needed another operation to remove. After discussion it was agreed they would do it the next day when they happened to have a theatre slot. A bit rushed, but it means she will be recovered in good time for my hip replacement.

My wife took herself off to Bristol on the train for a night’s stay in hospital while our daughter came to the rescue and took me to RUH Bath for two appointments.

My first was with the Respiratory team who wanted to unblock my lung drain. They had tried to unblock it last week by pumping in some saline solution but though it went in, it would not come back out. This is thought to be due to a build up of proteins clogging round the drain inlets. There was not much fluid in the lung anyway, and what there is looks on the ultrasound to be somewhat broken up i.e. in little rivers rather than in a nice tidy pool.

Dr. Masani made up a clot busting mix and squirted it in through my drain tube. We then went away for a couple of hours for it slosh about and do its work. After that a standard Pleurx drain bottle was attached and 300ml of quite bloody fluid sucked out. So the clot buster had worked. Apparently they only have to do this a couple of times a year so I was a bit unlucky. Dr. Walters took over at this point as Masani had to go to another clinic. They are quite happy that the proteins have been dissolved and want us to drain twice a week to try to prevent them building up again. It could be the Sutent (chemo) that is causing this.

I mentioned to Dr. Walters that the previous night I had had a slightly odd experience with my vision where there seemed to be little gaps. And the same thing happened during this session. For example a sign saying “Pocket Mask” read to me as “Pocke Mask” even though I knew different. Dr. Walters said this was a possible TIA indicator and I should go back on the Clopidogrel. You may recall I came off it due to my lung drain wound weeping, but now that it is healed they think it will be fine.

On Wednesday our daughter provided a non stop taxi service. First she took me into the RUH for my “Joint School” lecture, then went on to Bristol to pick up my wife. Her operation had gone well, though as before she now has to spend two weeks lying on her front for 90% of the time to give that macular hole a chance to heal. Once the patient was safely home it was back to the RUH to pick me up from my second appointment – pre-op screening.

“Joint School” is I believe a relatively new development and consists of a one hour lecture which is given to all those needing hip replacements. There were about two dozen of us in the room, so I guess that would mean about a dozen ‘subjects’. It gave me a new insight into the NHS. We are each on our own little journey but of course at another level it’s a production line with things like hip replacements, where they must be doing several a week. It conjures up an amusing vision of boxes of replacement body parts, presumably in a selection of sizes. One day they will doubtless be printed on demand.

The lecture took us through the admissions process, pain management, post-operative recovery then rehab and was quite useful. It has apparently been shown to improve patient outcomes, and must certainly be an efficient way to deliver quite a lot of information to a large group.

I then had a good break before my next appointment and was able to wheel myself quite long distances around the hospital to get to the restaurant and then in due course up to my pre-op assessment. The assessment is standard practice to check you are fit for the knife. After the usual checks, taking blood samples etc. I talked with the senior nurse who after quite a long discussion about my case concluded, as I expected, that she really needed to refer me to an anaesthetist. They are the ones who keep you alive and decide whether you are fit etc. It is the complications of my bleeding, TIA, Clopidogrel, Sutent, lung drain, forthcoming radiotherapy etc. which make it all a bit more tricky than usual.

I’d been having a bit of a cold for a few days. Nothing major but it was knocking me out rather. When I got home I found it dreadfully cold and I was shivering terribly for an hour despite taking to my bed with a hot water bottle. I was not sure how much of this was the cold or the side effects of the Sutent as I have now had most of those advertised: tiredness, nausea, sore mouth, numb lips, skin irritation and diahorrea. Not had sore palms and feet though which must be unpleasant.

We are fortunate to have lots of very kind friends and neighbours and one took me in to RUH for my radiotherapy assessment. The hip surgeon had asked for this “three weeks prior to the surgical date with a view to reducing the perioperative bleeding which can be litres with this type of renal carcinoma with the tissues being appropriate for surgery at this stage.” As I understand it a dose of radiotherapy has a kind of cauterising effect so will reduce the bleeding. In fact I’d been getting quite anxious about the lack of this appointment and had left a few messages with different people about it before they rang up to book me in for a prep on Thursday and treatment the next day.

The prep stage of this involves a kind of simulation where they get you on the table, look at the X rays where the consultant has marked up the spot to zap, then mark up on your leg where to carry out the therapy. They don’t do it there and then because they take a further X ray and indicate the spot which the consultant (not sure if it is the surgeon or the oncologist) then signs off.

This should have been a brief visit, but that morning my temperature had reached 37C and that and shivering are conditions to report to the Chemotherapy helpline. As we were there for 0930 it made more sense to alert them in clinic and I was now whisked off to a day treatment area where my temperature was taken again (37.9), a canula put in (3 attempts this time), saline drip attached, a dose of antibiotic delivered and bloods taken – the ones from the previous day not being sufficient apparently.

It turned into a delay for my kind friend giving me a lift as we now had to wait for the blood results and for a doctor to review them and see me. After an hour or so she came along and said the bloods were OK and I could go home but has prescribed Amoxicillin. She also told me to stay off the Sutent for a couple of days.

I felt pretty rubbish all day Thursday and did not sleep much but got up feeling appreciably better on Friday.

Another lovely friend came to the rescue to take me to my actual Radiotherapy session. This was pretty much as expected as the machine is quite similar to the simulator. The process took less than 20 minutes and we probably spent as much time in the pre-briefing and consent form signing.

I had never been quite sure how radiotherapy works, but I understand it is a very powerful form of X ray. You lie on a carbon fibre bed and a big dome hovers over the target area. Two big arms come out alongside you with what look like cameras. When they have locked on to the right spot you get your dose. They can control the duration (about 20 seconds for me) and intensity of the shot, which depends on the depth and density of the bone etc. After one dose from above the whole apparatus rolled round 180 degrees so it could have another shot from below – the rays pass happily through the carbon fibre. The target area was just about 5cm across. They get through about 40 patients a day which they need to as the machines cost a couple of million pounds.

My leg felt a little warm afterwards but so far I have no side effects. Itchy skin is a possibility as is tiredness and increased pain, reduced pain or unchanged pain. The bumpf says that the “peak of the reaction is approximately 10 to 14 days after treatment finishes.” A lot of people have several treatments so I am not sure how it will work out for me with just one and we’ll just have to see.

I was slightly concerned that the radiotherapy might increase my risk of fracture. Surgeon Sandhu wrote that I have a “Mirel’s score of at least 10 to 11 and a pathological fracture would probably occur”. Since the Mirel score for assessing fracture risk only seems to go up to 12 that seems hard to disagree with, and I wondered if actually reducing the cancer cells might somehow make the joint hold together less well. But is not a risk identified by Dr. Beresford, so although I will have to continue to take care with the leg (which is painful in any case if I don’t) I should be able to hold out with my chair and crutches until the 8th October when the operation is scheduled. Our son comes to stay tomorrow which will be a big help.

Next week promises to be a lot quieter. I just have the anaesthetist’s appointment on Thursday. So unless something exciting happens the next update will be when I see the oncologist for a review on the 5th. I see the surgeon Mr. Bishay that day too, so may be able to get more info on the way he wants to plan the operation and what spare parts he is ordering for me.