I now have a renal appointment date of 22nd June when I assume I will get to discuss my next treatment steps. So this may be the last post until then. However, that appointment seems rather far away to me so I will try to get it brought forward. At the least I’d hope to get a histology report earlier and I’d have thought a CT scan in a few weeks to see if my lung tumours have grown or shrunk would also be useful. Or maybe I’ll be getting a separate appointment with an oncologist or the lung doctor – I’ll call the Macmillan nurses to check.
The rest of this post is for those with an interest in a “blow by blow” account of my kidney operation. However much you may wish me a speedy recovery, it will provide you with no information on that. But it does contain quite a lot of blood and guts talk, so should be avoided by those who find such detail unpleasant or just uninteresting. I’ve chunked it up in to subject headings so you can skip selectively if you wish. These headings are:
- Summary (timings etc.)
- Epic Epidural (my mixed experiences with an epidural)
- Shifting the Block (managing the epidural)
- Intensively Cared For (time in Intensive Care)
- One In The Eye (some damage to my eye in theatre)
- Walking the Ward (early mobility)
- We’ll Do It My Way (the challenges of moving from one bed to another)
- La Nausee (dealing with nausea)
- Oh Catheter (the joys of a catheter)
- Oh Poo (the complications of post operative constipation)
- It’s A Pain (managing pain – is it all in the mind?)
We went into the Admissions Ward at 0730 on Wednesday. This is a standard time for calling in those patients due for morning operations – another batch come in at noon.
I saw Mr. Phull, my surgeon, who confirmed the procedure and explained that he would be making a large incision across my stomach below the ribs. He described it as a hockey stick, but actually it’s two lines. The first part is about 10cm long and is fairly central directly under the sternum. Then at the right end it bends down about 30 degrees and continues for another 15cm, making 25cm altogether. As the kidney was around to the side I was slightly surprised that he came across the “centre line” but I am sure there is a good reason for that.
Mr. Phull said he would try to phone my wife after the operation to let her know how it had gone, which I was pleased about, and finished by drawing on my stomach to make sure there was no confusion about which side people were to work on. It has been known…
I then saw the anaesthetist who confirmed I would be given an epidural to control the pain post-operatively and a catheter, which would be inserted after I was ‘under’.
I went down to surgery at about 10:30 and was prepared in the Anaesthetising room where I had a rather uncomfortable experience (see Epic Epidural below) and was then knocked out. Mr. Phull phoned my wife at 1:20 to say the op had gone well, but curiously I came round at 3:30pm when, after more epidural issues, I was taken to the Intensive Care Unit. I stayed there until about 10pm the following night, then moved to a ward and subsequently into a different much quieter bay (with lower nursing ratio) in the same ward on Saturday evening. I was discharged on Sunday making a 4 night stay, as had originally been suggested.
I was familiar with the use of epidurals in maternity wards, though I think it may be less common that it was; but I had not considered the possibility for this operation. It makes good sense though. An epidural is a ‘regional’ anaesthetic. Drugs are passed into the small of your back through a fine tube and pain receptors in the lower torso are numbed. This still gives you movement and feeling elsewhere, so you can see why it is as useful for an operation like this as for having a baby.
Unfortunately, however, my epidural experience was not too great. The tube is inserted after a local anaesthetic and has to be carefully positioned. The anaesthetists had difficulty in getting through my back muscle which they found very hard and tense (strange that!). After what I think was two tries in a sitting up position they tried again in a foetal position which was deemed successful. This whole procedure was much more uncomfortable than my two biopsies. Partly because it was more painful (I was given additional anaesthetic) and partly because it went on for a while and though the team was being jolly and relaxed it was obvious that it was not going smoothly.
After that I was knocked out promptly enough and they would then have inserted the catheter. I was glad to have that done under anaesthetic as it’s not a procedure any healthy soul would long for. My father lived with a catheter for a few years until his death and was stoic about it but it gave him a lot of discomfort.
I came round about 3:30pm by the recovery room clock to find myself being moved from one trolley to another. I was in great pain and groaning. I was advised not to groan as it would make it worse. I don’t think I buy that – there is a cathartic effect in a good groan, although I am sure it is unpleasant for those around. After a short time and elevated groaning it was decided that the epidural was not working, so I was taken back to the anaesthetic room where a further insertion attempt was made. This was successful and within seconds the pain was easing (or maybe they gave me something else too).
I was then moved to the Intensive Care Unit where I learnt the art of shifting the Epidural Block.
Shifting The Block
It seems there is a gravitational effect with an epidural. If you think of it as a zone of numbness which can be shifted up and down by controlling the elevation of the patient.
The ICU nurse sprayed my left and right sides in several places, from armpit to hip, with some kind of compressed gas which was, therefore, very cold on discharge. My job was to say whether it was very cold, not cold at all, or something in between. Not cold at all would mean that I was completely numbed by the epidural in that zone. The block zone would then be ‘trimmed’ by elevating or lowering my back and also raising or lowering my knees. The first night nurse did this several times. The day nurse did not do it once and said it was no longer necessary. The next night nurse did it immediately and said it was still necessary. Who knows best? After I was moved to the main ward I did it myself by scratching myself along the side to see how numb I was. Probably pretty unnecessary by then but it made me feel I was in control! And it gave me something to do…
Intensively Cared For
The ICU at Bath has two kinds of beds – one for people who need intensive care and one for those who need intensive management. The distinction is between whether you need someone keep a close eye on you but not too much intervention or whether you need to be constantly given drugs, treatments etc. I just needed the management and was thus in the High Dependency section (HDU).
The ward is like no other I have visited. There were only about 4 beds, with a few more in isolation rooms. The bed space was at least double that usually allocated, although with no personal locker. I was at the end of the ward with just one other bed occupied next to me. At the end of each bed is a desk where the nurse writes up your notes, keeps medicines etc. It’s a bit odd as you lie there propped up watching your nurse who is busy filling in forms. They must find it a bit strange too, to have the patient staring back.
I was very glad to be in this unit as I knew from my experience in the Respiratory Ward that bell calls are not always answered promptly on general wards – the demands are so variable it must be impossible to get the staffing perfect. As I shared a nurse with just one other patient there were no such problems here. Not that I needed a lot of support, but it did mean I could pester my nurses with lots of questions which they were happy to answer; in a general ward you have to be sensitive to the demands on their time.
There seemed to be an extraordinary amount of staff in this ward. Down the other end I could see about a dozen people working away. Whether they were just working on ICU patients I don’t know.
One In The Eye
The next morning a bunch of doctors came on their rounds to see how I was. I was in no pain, but had some soreness in my left eye, like grit. The nurse had suggested I raise this with them, so I did. It turns out that when you are given a general anaesthetic your eyelids are taped down. Otherwise they can open and get dry or be at risk of damage. Sometimes the eye still opens just a little and can get sore. Some disclosing fluid was put into my eye and a doctor found there was a small scratch (later explained by the anaesthetist as an “adverse reaction” to the tape. Not sure I follow that). I was given a course of antiseptic gel and it cleared up after a few days.
Walking The Ward
The next morning a physiotherapist came to see me. Mr. Phull had explained that due to the fluid pockets in my lungs I was at increased risk of infection. The best way to combat that is to breathe deeply and cough. Coughing is not something to look forward to when you have a foot long cut across your stomach. But the epidural managed the pain so well that I was able to cough without too much discomfort and the physio gave me advice on how to hold a pillow to my stomach to keep some pressure while coughing etc.
She then asked me if I fancied a walk, so I said yes, but what about my lines? By this point I had several: epidural feed line, a few into the neck for IV fluid etc, oxygen line to the nose (teams with the epidural), catheter line, ‘obs’ line (for monitoring blood pressure, oxygen levels, pulse etc.). She and my nurse disconnected those I could live without for a bit and picked up the rest and we went for a stroll round the ward. They seemed quite impressed that I was able to walk all the way up to the end of the ward and back. It was not entirely painless, but you have to get those muscles working and flexing and I was happy to do it.
I was later told that “no one ever walks around the ward in ICU”. But maybe the nurse was ticked off because she later confessed that it is not considered good practice for those with an epidural to walk as there is a risk of the block moving to the feet and them getting numb so you fall over. In fact I was constantly being asked if I could wiggle my toes. This was never a problem and the block never seemed to move quickly, but obviously it can happen.
We’ll Do It My Way
I was only ever scheduled to be in ICU for 24 hours so I expected to be moved the next day. But as evening came it had not happened so I hoped I would stay another night. However I heard discussion about the chap in the next bed when one of the doctors told the nurses that they must now approach him with face masks as his blood tests had shown him having a form of ‘flu. Just what I didn’t need! Needless to say they avoided telling me this but pushed to get me moved so that my space could be left clear. I was finally moved to my destination ward about 11pm. None of them like getting new patients at that hour as you may imagine since it is disturbing for the other patients.
When the time came to move me from ICU I had considerable tenderness in my stomach from the wound (see It’s A Pain). The nurse said that my special ICU bed could not be taken to the ward so I would have to be moved to another bed. To prepare for that she lowered my powered bed from a sitting up position to flat. Or rather started to until I shouted at her to stop. As the bed was lowered my stomach was of course pulled tight, stretching the wound very painfully – and it had already been painful. A porter then arrived with my new bed and announced that they would put a board under me and slide me over. No way Jose (which was indeed his name)! Plan C was to put the two beds head to tail and slide the mattress across. I vetoed that, explaining that I would still have to be flat for that. And in any case I did not like the mattress.
It is now common in hospitals to use inflated mattresses. Bed sores are a big issue and can apparently start within a day. These mattresses have air pumps which gradually inflate different parts of the mattress, then deflate. It’s a bit like lying on a lilo while someone is pumping it up. Amusing for the first few times but a real irritation when you are trying to sleep. I expect they are very effective but I insisted on a ‘normal’ mattress which it was agreed I could have as long as I promised to keep moving about.
I then asked them to put the two beds side by side, both with the heads elevated. That way I was able to work my way across without lowering my back and stretching the wound. And I could do it at my own pace, stopping and changing posture when the pain kicked in.
As I was about to move from the one bed to the other I said to the nurse “Have you put the brake on this bed as I don’t want it sliding away from me so I fall down the gap as I push myself across?” “Of course” she said, then suddenly looked worried, reached out with her foot and snapped the brake on. Look changes to apologetic/embarrassed. Much rolling of eyes from the Latino porter and the other nurse. Luckily the other nurse was a strong girl and stood the other side of the new bed so I was able to take her arm to pull myself across. The porter meanwhile stood back in complete disavowal at this entire improper procedure, clutching his disdained slide board to his chest.
For my part, I was happy to have got across without much distress and to have the mattress I wanted. In hospital small triumphs come from things we don’t even think about in the rest of our lives. But it’s lucky I am strong minded and used to asking people for what I want – a more timid soul might have experienced a lot of unintended pain.
Post-operative nausea is not uncommon and I’ve seen poor souls retching up in wards. I was concerned about it as I hate retching and doing it on an empty stomach is particularly painful. The prospect of the impact of that on a stomach with a foot long gash was particularly disconcerting. After 24 hours without nausea I thought I was past it, but a doctor said it could come even later and an hour or two after that I warned the nurse that I was about to be sick. Fortunately the hot flush and sick feeling passed without retching and the nurse gave me a preventive drug. But it put me off eating, though I had been encouraged to do so. I was also not drinking much as I seemed to be getting heartburn and a sense of trapped air wanting to come up – which it did occasionally. Later the nurses gave me Gaviscon for this, which made no difference, then Renitidine. This suppresses stomach acid production and made me feel much more comfortable, in turn enabling me to drink freely, which I needed to do with the catheter coming out…
It made a lot of sense to have a catheter in. With a big wound like that you can’t move about freely, even to use a bottle. Also I was being given IV fluids (basically rehydration salts) to keep my minerals up etc.
A strange thing about a catheter is that you have no sense of wanting to have a wee. As it constantly drains your bladder you don’t build up the pressure which triggers you to go to the loo. There was some concern that my production was not up to the required levels and I was encouraged to drink more, then the catheter was removed along with the epidural and IV on Friday morning.
I was dreading the catheter coming out as they insisted this had to be done after the epidural was removed. Just having it in place had been very uncomfortable at times and I would constantly be reaching for the line when a nurse came near in fear that that would give it an accidental tug – not at all fun when it happens. In practice the removal was painless. I was concerned that I would wee over the floor as the nurse took it out but she assured me this would not happen. In practice the prudent disposition of a towel would have been wise. But at least I missed her.
I suppose the bladder muscles, like any others, get lazy quickly without use. after the catheter was taken out, I found that it took me much longer to go to loo than before, with bits dribbling out for minutes on end. But within a day or two things got back to normal.
Constipation is an inevitable post-operative likelihood. Many of us tend to get constipated when we visit strange places; lack of mobility is a hospital is another contributory factor. Things get worse with a kidney operation as the stomach and bowel get pushed around quite a lot. I was warned by the surgeon that it was common to feel ‘bloated’ after the operation. I didn’t but I was not eating much; one of the nurses said that people often over-eat as they feel the need to ‘catch up’ after a day’s fast. I really did not want to eat at all. I was enjoined to eat to get the bowel moving so did so with small portions, but all to no avail. However, I was passing wind which is apparently a good sign as it shows that all the plumbing is in place and working correctly.
I’d been prescribed a laxative but it was an aggressive type and I did not want that given my general tenderness and difficulties with muscle movements (though I’d been assured that different ones are used for bowel movements to the ones that would have been affected by the operation). So the morning of my departure I asked for something gentle and was given senna. This had no effect and I was worried I’d be kept in as bowel movement is one of the tick boxes for departure. However, they simply gave me a box of Laxido sachets and told me to take a sachet when I got home, then another couple if that did not work.
None of them worked and next morning I was feeling pretty bunged up. Not only that but my weight was now 13st 1lb, whereas I’d gone in 9lbs lighter. And what about the weight of the kidney and its 8cm tumour?
I then dosed myself with the Laxido “faecal impact” treatment which involves taking 8 sachets at 45 minute intervals. By the sixth sachet I was feeling really horrible and could not face another glass but after an hour’s rest I managed the remainder.
Still no result though. I phoned the hospital who said to talk to your GP. My GP surgery promised to call. I considered various supplementary treatments but didn’t want to do that without advice. I phoned the Macmillan renal nurses who said talk to the GP and seemed concerned that I was no longer passing wind. I phoned the pharmacy to discuss enemas but, after hearing my story, said they would not sell me one unless I’d talked to my GP. Sensible of them really. I was getting quite distressed by this point as not only was I extremely uncomfortable but it felt like another block (forgive the pun) on the road to recovery.
By 5pm still no call from the GP but things had finally got going. She called a little later and was able to advise me to keep taking a sachet or two a day to counteract the impact of the other drugs. So, an unpleasant little side-kick to my hospital visit but which, fortunately, now seems resolved.
It’s A Pain
I have learned quite a lot about pain in the last few days. I learned that an epidural is very effective – once you get it in the right place! And I went on to learn about the best use of more common drugs.
The morning after my operation I really did not have any pain at all. In the afternoon I was resting and woke up with a big cough. My body was unprepared for this and a searing pain erupted just below my sternum at the point on my wound where there was already the most blood staining the dressing. It felt like something had ripped. I asked the nurse to look at it and she was happy with the dressing which showed no sign of additional bleeding. She said the tenderness would go after fifteen minutes but it didn’t. Instead much of my scar line became tender and I became convinced that there had been some ripping of the tissue either at the surface or with the stitching below, where I assumed the cut muscles are stitched together (though my son tells me new thinking is to rip the muscles rather than cut them as they then knit together better which seems to make sense).
After this I was never as comfortable and became very anxious about coughing. You will recall that I had been actively encouraged to cough whereas now I actively wanted to avoid it. Also the wound always felt a little tender.
On Friday morning it was announced that my epidural and other lines would be taken out. On the one hand I was very pleased about this as it meant that I could get up and about. On the other I knew what a good job the epidural was doing and wanted assurance as to the alternative pain relief.
I was not too convinced on that front. I was already getting 500mg of Paracetamol 4 times a day. To this would be added 500mg of a form of codeine. I was assured this would be enough.
The lines came out and I was given the codeine and a nurse took me for a welcome shower. I was impressed at how freely I could move and managed to shower myself for the most part (and her for a bit, albeit unintentionally). My daughter came to visit and I was delighted to think she would find me sitting down showered and shaved rather than lying in a bed with a dozen tubes slithering around me. We had a lovely visit and then I felt quite tired so went to rest.
Just before that the ward nurse had come round with the noon drugs run. I expressed again my concern about pain management given the tenderness of my wound. She assured me they had plenty of experience and that if I needed additional relief I could be given Tramadol (opiate based) or Oramorph. The beauty is that both of these can be given in addition. She also explained that they regard Paracetamol as the “base” drug and that things like Codeine actually work better if given in addition to a regular dose of Paracetamol, quite apart from the benefits of the Paracetamol itself. The downside is that most of these cause constipation.
While I was resting the physiotherapist visited and asked if I would like to go for a walk and try climbing some stairs. I agreed to this and after getting out of bed with some discomfort we set off with her colleague wheeling a chair behind in case I got tired. Meanwhile the physio kept telling me “You’re doing so well” which seems to be a stock healthcare mantra.
None of this was particularly easy. Getting out of bed is tricky as you are stretching those stomach muscles, so trying to find the right angle on which to roll and slide takes time. And there was consistent but bearable pain while I was walking.
After about 15m the pain became a bit too much so I asked to stop and got into the chair. The pain then increased and increased as they wheeled me back to my bed, to the point where I was streaming with tears and sobbing. The poor physio was visibly distressed as she apologised for causing this (it was not her fault). I called a nurse for additional pain relief and was given Oramorph. This, strangely enough, is a form of morphine taken orally! It comes in what looks like a syringe but it has no needle – you stick the thing in your mouth, press the plunger and get a dose which tastes quite pleasantly of blackcurrant. Best of all it works quite quickly and within 5 minutes I could feel it kicking in. The physio, meanwhile, declared she was happy with my lungs and legs and felt she did not need to see me again…
I am not sure why I broke down into such floods of tears because of that pain. Yes, it was the pain that caused it and it was certainly very painful – even more painful than when I once got caustic soda in my eye. But I think there was also an element of a front cracking. I have tried to remain cheerful and positive during this whole cancer caper but, obviously, the underlying stress is considerable. I found just having the biopsies would knock me out for a day, so a major operation is bound to have quite an impact on your general resilience.
The greatest negative out of all this was that it induced in me a considerable fear. The two previous occasions when I’d had severe pain from my wound both had identifiable causes: an explosive cough and a bed being flattened. This time I’d been walking in some discomfort and stopped when it got too much, but the pain just built and carried on. This meant that I now worried about whether any exercise I took would lead to unexpected severe pain. It’s one thing to exercise damaged muscles knowing it will hurt but you can stop when it is too much. It is another when you think that stopping might not be the end of it and you could end up sobbing and crying out for opium or morphine.
I also became increasingly worried about my scar line which remained tender. I’d moaned about it to any passing doctor and they all took a look and said it was fine. “You’re doing great.” This would eventually be resolved by one of the most junior staff – a wonderful trainee nurse, Emma.
On the positive side I’d learned that I had access to Tramadol and Oramorph if the other drugs were not strong enough, which was a considerable comfort.
On Friday evening I was moved to another bay in my ward which is used for patients approaching discharge – so it has a lower staffing ratio. It also makes it more quiet as there is less going on and in any case there were only four beds.
On Saturday I did a fair bit of walking about and was pleased with my progress. But waking up on Sunday morning I was disappointed to find my whole wound area really quite sore. I’d had to go to the loo a few times in the night as I’d been drinking a lot of water to reassure the nurses that my remaining kidney was functioning OK (they had to measure the output). After one trip about 5am I found myself in quite some pain and called for a nurse to give me Tramadol, which quickly kicked in.
A few hours later the doctors came round and said “When do you want to go home?” “As soon as possible” I replied to which they said “Right, this afternoon then.” While welcome, this was not the answer I was expecting. Partly because I know from experience it is quite hard to get an exeat from hospital at the weekend (difficult to get all the sign-offs). Partly because I was not at all sure I was ready given the level of pain I was experiencing. I said to the doctor “Don’t I have to do a stairs test first?” It is standard practice to ensure that discharging patients can walk up and down stairs and I knew very well I could not – it would just be too painful. He agreed it was necessary, said I should have a go and left. In fact it’s also standard practice to ensure bowel movements have returned, but I kept quiet about that one reasoning that I’d be more likely to get going at home.
I shared with trainee nurse Emma my concerns about my wound. She looked at the dressing and said “Why has nobody changed it?” I said that several people had inspected it and said it was fine; I assumed they did want to touch it for fear of infection. She replied that there were several patches of dried blood on it and it was usual to change such dressings. She conferred with her manager who agreed. I was pleased with this and but also rather anxious. Pleased because we could see whether the wound was damaged, as I feared. Anxious because it was so tender. So I asked them to give me a dose of Oramorph first which they agreed to do.
The dressing came off without any trouble and the wound looked absolutely fine, which was a great relief. Thanks to the Oramorph the new dressing was firmly patted into place without any pain at all.
By this time it was about 11am and very soon my wife and brother came to visit. I’d told the sister that I would do the stairs test with them (no physio on Sundays). So after knocking back a welcome espresso they kindly brought from the café (I avoid the trolley coffee) I did a couple of flights up and down without any trouble. All well and good, but, I thought, this won’t be so easy once the Oramorph has worn off.
That takes about two hours. So I was pretty sure that after lunch I would have soreness again and the usual difficulty in moving about. But that did not happen. After lunch I still felt fine and had better mobility than ever. Not only that but the pharmacy delivered my home meds before closing for the day at 1pm and the discharge doctor wrote up and signed off all the paperwork! So by 1:30pm we were good to go, held up by only one thing: my need to demonstrate that I could self-inject.
My home meds include 28 self-injection doses of blood thinner. Clots are a potential complication of operations. They give you support stockings for that and it’s another reason to encourage mobility. Clots can occur for some time afterwards – hence the self-injection syringes which are like those given to diabetes sufferers. The ward staff have to see it you can do this yourself and, due to the timing of my previous injection, it could not be done until 3pm. But eventually the hour came round, I plunged in the needle, passed the disposal procedure test and we escaped.
I remain rather baffled by my experience on Sunday. I was sure I would feel good that morning and was quite upset to find that the opposite was the case. Equally I was quite amazed, as well as pleased, that after that dose of Oramorph wore off, I had no discomfort. It was as if the dose had never worn off. I do wonder if Emma’s changing of my dressing had some kind of placebo effect. I had been worrying about the state of the wound so seeing it look good and clean was a big relief and maybe that led to a general lessening of anxiety and, therefore, of perceived pain.
Who knows? Pain is certainly a strange thing. On my ward was a patient in his seventies who had had a major stomach operation and was also suffering from dementia. He spent all night walking up and down to the reception desk asking when he was going home. He insisted that the wound drain he was carrying was not his – that he was carrying it for someone else. Security guards had to be called to keep him pacified. But the really interesting part of this is that he was discharged (at his demand but with hospital agreement) within 2 days of this major operation having refused all meds. He never exhibited any pain or needed any rest. Why? Because he had, in his mind, never had an operation anyway….