I fetched up at A&E again on Sunday, but instead of leaving a few hours later this time it was a stay of a few nights. It was worth it though, as we got a lot done in that time. This will therefore be a rather long post, so I’ve chunked it up by subject matter. If you just want a summary please go to the Timeline page.
I hassled the Macmillan lung nurses last week to get me into Dr. James Walters (the “Drain King”). They said his Tuesday clinic was chokka but on Friday the excellent fellow rang me and said “Come then anyway and we’ll squeeze you in.”
On Saturday night, after a lovely dinner with friends, I just got terribly out of breath. It’s difficult to explain what it feels like but imagine you are in a sealed room – or maybe at a high altitude. You have to work harder to get enough oxygen into the system. Your lungs can’t function independently. So if you can only inflate one to 50% you can’t get the benefit of the full potential of the other. Presumably there comes a point where you just suffocate or technically drown – or maybe have a heart attack. If your lungs are steadily filling, as with me, you just don’t know when that point will be. That can make you uneasy when you know that you can’t get much help from an ambulance team. And also when you hear tales of very painful lung drainage. I wanted to see the man I trust. I just did not feel I could leave it until Tuesday. Also Dr. Walters had said “Don’t leave it so late next time.” Well on Saturday evening that was not true. On Sunday morning it suddenly was.
I didn’t feel safe to drive. I also thought it unlikely That Dr.Walters would be working on Sunday, but figured they could at least give me oxygen to help, so we taxied in and I took stuff for staying overnight.
We arrived at 11:20 and A&E was busy. I was quickly triaged and then put in a corridor with four other trolleys. It’s sometimes worse apparently but this was the first time we had been stacked. After an hour I got a bed in A&E. I asked the nurse if I could have oxygen and she said “No point. Your levels are fine.” At 2:30 a doctor came and said “You need oxygen”. I was given it and felt immediately better. I will rant on about this issue later.
At 13:10 I was moved to the Medical Assessment Unit and about 22:00 the MAU doctor came to assess me. She said the registrar on duty had the potential to drain me but as I’d explained it was likely that Dr. Walters would want to put in a permanent drain she’d only organise that if I was in trouble. With the oxygen I was managing OK, but not as well as when I’d first been given it. She turned it up from 1 litre per hour to 2, which made a big difference.
The next day nothing much happened apart from putting together a treatment plan. Dr. Walters came by and said he was very tight on Tuesday and would get Dr. Vidan Masani to put in the pleural drain the next day. He’s the only other person qualified to do this in Bath. Dr. Masani’s schedule was also full, so if he could not make it Dr. Walters said he’d make time in the afternoon.
I was delighted when on Tuesday morning a porter arrived to wheel me down to respiratory outpatients and very soon Dr. Masani appeared. My wife was visiting so he was able to explain to both of us how the permanent drain worked. I asked if she could attend the intubation and he said he’d get her in at the end so she could see how the draining operation is conducted.
The procedure took place in what looked like a store room. There was a big screen across half of it “Because people may need to come in and use that machine.” An assistant nurse who had not worked with this procedure before helped the doctor. With me on a bed up against the wall and with another wall occupied by store cupboards there was not much space. Several people came in and out during the next half hour to get supplies. I was perfectly happy with this and it seemed a perfectly clean environment, but I just thought it was tough on Dr. Masani as he did not have much room to work.
He was very particular about cleanliness and made sure he had an area for a little trolley to lay out the kit, with the nurse bagging waste as soon as it appeared.
I’d assumed he would intubate from the back and was cursing for not asking my wife to shave my back. In fact it would have been pointless as he explained he would enter from the front, a couple of inches off my right nipple. This is because it is easier to manage the drain and you can lie on your back afterwards.
He gave me several injections of local anaesthetic. My body was covered in a sterile cloth with a cut out hole, cunningly arranged so I could see him but not the works site. He asked if I wanted him to get on with it or give me a running commentary. I opted for the latter because I much preferred that and also the new nurse would benefit as she seemed keen to learn.
Squeamish types may want to skip the next bit. He cut an entry hole into my lung area and then produced the drain tube. This is about 6mm across and comprises two main parts. Several inches goes into the lung. It is multi-perforated so fluid can get in at multiple points and even if some get clogged there will be others that work. The other bit is the drain line, which led to a 6 inch needle about the size of the tube.
The next step was to push the needle along for a few inches under the skin to “tunnel it” to an exit point. He seemed to find it quite hard work. It was painless for me but I could feel the thrusting. I commented that the epidural guys had complained about my back being tough to work on and he said “Yes, pretty much the same here.” Maybe one of those rare situations where man boobs would make it easier on the doctor?
After that was done he then took the drain bit and fed into the entry point. It goes between the lung lining (pleura) and the ribs. That’s where the fluid builds. He said it usually curls up but just makes its own way. That seemed to go smoothly.
He then stitched up the entry point. That was the most painful bit. Only wince-making but he wondered if he’d put enough local around that area. Or maybe it was already wearing off some twenty minutes after injection. So we now have a tube exiting a few inches below the entry point, which will close up. That way it is safe, comfortable and less likely to get infected (1 in 1000).
Now the drainage could begin. The bottles are like giant light bulbs but made of polycarbonate. Light bulbs are of course the shape they are because they are under vacuum. So are the bottles, which come in 500ml and 1L sizes. I asked if my wife should now come in but he said he’d prefer to do one drain of 500ml to check all was OK, then get her in for the next. He also wanted to clear up all the blood and mess. She would have coped with that, but he wasn’t to know and it was the sensible choice. The line is connected to a snap connector from a line on the bottle. You then open a line valve and depress a plunger on the bottle. This is a bit like a mini version of those old detonating devices you see in films. That breaks the vacuum seal and so sucks the fluid out. All mechanically pretty simple really.
When my wife came in for the second bottle it only filled to 300ml, so we drained 800ml in all. That did not make sense to me. Dr. Walters had drained 2L a couple of weeks before and estimated I had up to 3L in stock given I felt worse this time. Dr. Masani agreed and said he thought there was something not quite right about the bottle vacuum. But this would make an appreciable difference to my breathing and they could drain me again tomorrow – which is the big benefit of this permanent drain.
Being a big fan of Dr. Walters I’d been anxious about being worked on by someone else as you hear some bad stories about lung drainage. But I thought Dr. Masani was great too. I told the nurses I thought both he and Dr. Walters are great and she said “Yes, we are very lucky to have them.” When I saw Dr. Walters later I said “Thank you for getting him to sort me out. He’s great; maybe as good as you; possibly better?” To which he laughed and replied “We’ll have to fight it out then!” Great guys both.
My breathing was now immensely improved. I immediately shrugged off my oxygen line and found that I could walk (limp, actually) to and from the bathroom without getting out of breath at all. Previously I’d be panting desperately on the way back.
By the next morning, though, I was starting to get breathy again. Not as bad, but definitely panting after walking about. A respiratory nurse came to drain me again in the late afternoon. Another advantage of the permanent drain is that you don’t have to take off big amounts. The two litres which Dr. Walters had taken off previously did cause me some pain the next day as he warned – the lung has to get back to its normal shape and the more you take off the more stretching etc. there is to do.
I pointed out to the nurse that the plasters were not adhering very well as I have quite a lot of hair there so they could not make any skin contact. I’d got a ward nurse to add more the previous night. I suggested we shave it which we did after a very painful peeling off, mitigated to some degree by me peeling while she snipped the hairs.
I said to the nurse we should go for a litre and she agreed. But almost as soon as she started she said “I think we’ll only get about 400ml.” I scoffed but dead right she was: 440. She made me change body position a few times to see if we could get more out but no luck.
This is actually a bit of a concern to me. They have scheduled a district nurse to come on Friday (we hope to do it ourselves after that) but I thought that 400ml only might still leave me breathless and worse by Friday. Dr. Walters came by and gave me reassurance but I still worry that it isn’t working as it should. We’ll have to see how we get on. Even if I can only drain half a litre at a time that’s a whole lot better than having to go to A&E, but I’d be disappointed to remain breathless immediately after draining as was the case this time.
On Tuesday I saw Dr. Mark Beresford, oncologist. I’d already got an outpatient appointment in the diary with him so it was all convenient. Except that I was worried that me turning up as an inpatient in a wheelchair with oxygen would make him concerned about whether I was fit enough to start treatment.
No such worries. He said I should start straight away. He immediately joined my pantheon of RUH heroes as he seemed concerned, expert, unhurried and explained everything very clearly. I am grateful to the surgeon Jaspal Phull for referring me to him.
Dr. Beresford explained that I would be given Sutent, also known as Sunitinib. This is, to quote the Macmillan info “A multi-kinase inhibitor. Kinases are important proteins in the body that regulate how the cells grow and divide. Sunitinib works by blocking (inhibiting) signals within the cancer cells that make them grow and divide. Blocking the signals causes the cells to die. It can also stop cancer cells from developing new blood vessels. This reduces their supply of oxygen and nutrients which causes the tumour to shrink or stop growing.”
Seems pretty well targeted and it has a good track record. You can take it “as long as it is working”. It has replaced Interferon, which was used for many years, for my condition.
Dr. Beresford said they were running a clinical trial to see whether constant ingestion or cyclic – 4 weeks on, 2 off – was better. I said I’d be happy to join that trial but he cautioned against that as it would mean another couple of weeks of bureaucracy and even then I might not qualify. I rapidly reversed my opinion.
He said that with this condition earlier chemotherapy would not have made any difference as had I had a scan in May it would have looked fine and they would not have started me anyway until a further scan three months later which would have shown the tumours. He was honest enough to admit that this was more by accident than design, but nevertheless my anxiety about the delay was assuaged.
Dr. Beresford proposed I went on the 4 weeks on 2 off cycle which I was happy with, as if I get difficult side effects I’ll have a break from them for a couple of weeks. He then said they were also experimenting with more subtle variations of dosing. As this drug costs £2k to £3k a month that makes good sense, and it may also be better for patients.
I raised three other issues.
First the lump which has developed on my left side below the shoulder. I noticed it after my operation in May. It was not commented on in my July scan analysis though was a decent size by then. Others I had flashed it at had said it does not look quite like a tumour but “given the circumstances” should be assumed to be one. Dr. Beresford said much the same and that it looks a likely candidate for radiotherapy. However it also provides a handy marker for progress so if we keep track of its size it could serve as a proxy for the efficacy of the drugs.
Second my abdominal pain which is in the area of the kidney vacancy. He said that was likely to be the op still settling down.
Third my leg pain. A ward doctor had already booked me in for a bone scan. Dr. Beresford said that my bones looked fine on my CT scans but the leg had not been done and was worth a look in case it was related to my cancer, which was “theoretically possible”.
This chap does not hang about. Later that day I got a message to call Oncology and they said to come the next day at 4:30pm.
I duly did that and saw a nurse Sue Coppin who was there with my drugs! She talked me through all the side effects which can comprise: diahorrea; sore mouth; taste change; nausea; vomiting; indigestion; heartburn; skin and hair changes; high blood pressure; tiredness; weakness; bone marrow suppression. Usual “Not everyone gets these and impacts vary.” The diahorrea and nausea seem to be popular as she gave me drugs to control those. Today (Thursday) I took my first dose! Feeling fine a 8 hours later so fingers crossed, but I don’t know if reactions are quick or build up over time.
On the Tuesday morning I was scheduled for bone scanning. This takes place in two stages. First you are injected with a radioactive marker. After two hours when this is spread around you are popped into the scanner.
I was puzzled by a stricture in the briefing bumpf that men should urinate sitting down for the following 24 hrs. I discussed that with a ward nurse and she was foxed too. I asked the scanner operator and she explained it was nothing to do with getting the urine out but making sure it all went in the pan! As so often in life, dead obvious when you look at it from a different perspective.
The scanner is a much bigger beast than the CT scanners I’ve been in before. The process is the similar. You lie on a trolley, a camera is brought down close and then the trolley passes through the machine. They scanned my whole body which took 23 minutes by the clock. I guess more or less if you are shorter or taller! You have to stay still, though I noticed when my left leg jerked involuntarily the scanner spotted it and seemed to do a retake – which the nurse confirmed. They put your arms through a kind of sling so that they are supported either side of you and a little raised rather than lying on the bed of the trolley. Maybe thanks to the oxygen I did not have any breathing problems. It was not particularly noisy and as I felt pretty tired anyway I just dozed and found it all quite straightforward.
Analysing the results, by contrast, seems to be trickier. There are only two people in RUH who can do this and it takes a few days. I was worried about who would ‘own’ the results as everyone expressed interest which could mean no one takes action. I think Beresford will do so. If I hear nothing I’ll ask the local GPs to chase it up. The leg continues to be pretty painful almost 24 hours a day. It is mitigated by 1000mg of Paracetamol but that does not improve my ability to walk. I limp heavily so even if we can get my panting under better control I can’t walk far. Fortunately I can get to the car and drive happily – my wife still doesn’t feel safe to do that yet following her eye operation.
Obviously if it turns out my cancer has already gone to the leg that is not good news. If it hasn’t then it still needs fixing. As my GP expressed little interest last time other than giving me stronger painkillers I hope that a negative result can be used to trigger a more proactive investigation.
This is a classic example of different bits of the NHS seeming to follow different rules. When I checked into A&E I asked for oxygen and the nurse said “Yours obs (observations) show that your oxygen levels are fine so there is no point”. Then a doctor came along who said “You need oxygen.” I was duly given it and breathed a literal big sigh of relief.
I was sent to the Medical Assessment Unit with oxygen and continued it there. My breathing got worse and I asked the doctor who came round if anything could be done. “Of course she said, you are only on 1 litre an hour and you can have up to 4. I’ll put it up to 2.” That immediately improved things.
During the night I was feeling pretty bad. I asked a nurse to rack it up to 3. “No she said, your obs show your oxygen is fine.” “Well, I said, I’ve had two nurses tell me I don’t need oxygen and two doctors who say I do. I find it beneficial.” “Are you anxious about it?” she asked. “Yes I am panting to breathe.” “You need to calm down and breathe deeply.” “I can’t breathe deeply. I feel like I’m suffocating.” The nurse went to consult the senior nurse and came back and said “No, there is no point.” I gave up, not wanting a rep as a troublemaker, and panted sleeplessly through the night.
Next day I was sent up to Medical Short Stay without oxygen. The matron happened to be on duty and welcomed me in. “Can I please have two litres of oxygen?” I asked. She frowned “People don’t normally get sent here who need oxygen.” She leafed through the notes and said “You have been prescribed one 1LPH, I’ll give you that.” Immediate relief. The air seemed fresher in this ward and I managed with that quite happily.
To me this is all bonkers. The nurses go by your obs and if your oxygen level is OK say you don’t need more. But the point is my oxygen level is OK because I am panting like crazy to keep it up. It’s like a drowning man splashing to keep afloat calling out for a life ring and being told “You don’t need that; you are still afloat. Don’t be silly! Relax and stop being so anxious, you are just making it worse!”
When the consultant came round the next day I gave him my story and said “What’s up?” He said somewhat carefully that the nurses do go by the obs which were important but that obviously if it helped patients and made them feel better oxygen should be considered. Thus suggesting a possible placebo effect. I tell you that I can see the impact immediately and in any case if placebos work then go for them!
The Medical Short Stay actually turned out to be the best of several wards I have been in at the RUH. The room is light, the beds exceptionally well spaced. The nurses are not just friendly and caring but on it with every detail. Bed bells were never left ringing for more than a minute the two nights I was there and wanderers (there’s always one or two) were nearly always arrested before they got to the exit doors. Patients were not roughly handled. I talked to one of the nurses about this and she said it was her favourite ward to be on, having been on several. Interestingly she said the staff levels per patient were actually lower than most wards. It’s all about the management, as ever.
As soon as I’d had my lung drained of the 800ml I had discarded the oxygen. But I asked the senior nurse if I could have a portable bottle for my bone scan. I was worried that having to lie flat on my back for half an hour would make my lung fluids come back and I’d get out of breath. That would make it difficult for me to keep still. “No problem,” she said “If it works for you then use it. We’ll order a chair with portable oxygen.” I commented that not all nurses took such a pragmatic approach and she said “Pragmatism is important in this job.” Too true. It’s good that not all nurses do stuff by strict rules, but there seems to be a training issue here. After my discussion with the consultant in MAU I heard him talking to the nurses about it so maybe they will adopt a more pragmatic approach in future.
THE NEXT CHAPTER
The next steps on this journey will be finding out what is happening with the leg and what can be done; seeing how Friday’s draining session goes and how I get on with the Sutent. I plan to do an update when I can feed back on those. I’ve thrown nearly 4,000 words at you today and apologise for that, so if you have got this far, many thanks for your interest.