Update 13 - 28th August 2008

Since our last update at the end of July the continuous (24/7) chemotherapy regime has been working satisfactorily, although there is no way of knowing if it’s being effective.

The side effects to date are minimal, but Liz does feel very weak & lethargic.

This particular course of chemotherapy started on 29th July and is due to last for 12 weeks (i.e. until around the end of October) when hopefully we will get some better news following the next CT Scan.

Liz gets on very well with the nurses in the chemotherapy department and the change over of the ‘blue’ bomb each Tuesday is fairly straightforward and usually takes around an hour. Most of the time is taken up waiting for the chemotherapy drugs to be prepared in the pharmacy and brought up to the chemo suite. The chemo drugs are not prepared until blood samples have been checked to make sure it is ok to proceed. The drugs are made up ‘on demand’ due to their expense.

Two weeks ago Liz had a blood transfusion (2 units) because she was anaemic. This went OK and improved her breathing due to the increased level of red blood cells, which in turn allows a greater quantity of oxygen to be carried around the body in the blood system.

However, it has not all been plain sailing over the past month.

Fluid has been building up again in Liz’s stomach, which meant that it had to be drained again (last time at the end of April – 7 pints). This has not been very straightforward for a number of reasons and culminated in Liz getting extremely stressed in the middle of the night last Thursday.

Initially she was given an appointment to go to the day surgery unit (14th Aug), which seemed strange, as the last time it was done in the radiography department using ultrasound to make sure the drain was inserted in the right place, and that it didn’t damage any other organs.

On arrival at the Day surgery unit, the nurse in charge informed us that someone would come to the unit to carry out the procedure, and that after a couple of hours she could go home. Naturally this raised alarm bells with us, as the previous time the draining went on for around 12 hours and she was kept in overnight. As might be expected Liz was very stressed, and unhappy that the procedure might be done without the benefit of using ultrasound.

After discussions with a young registrar, it was decided that as Liz was taking Warfarin, her INR level would probably be too high to carry out the procedure in any case. Apparently no one had mentioned or thought about this particular aspect. The last reading we had was 2.3 two days earlier in the week. The surgeon would not carry out the procedure unless it was 2.0 or below in case any bleeding occurred, as it may prove difficult to stop.

We were informed that it was very unlikely that the INR level would be sufficiently low for the procedure to go ahead, and that it might take a couple of hours to get the blood test results back from the Path Lab.

At this juncture I pointed out that there were at least two departments that had hand held machines that could provide an INR reading in less than a minute. The nurses and registrar were amazed, as they were unaware of this machines existence. After telling them which departments had the machines they went off to see if they could get someone to come down to the day unit and provide an immediate result.

Shortly afterwards a nurse arrived with the credit card sized machine and took two samples which unfortunately were well above the acceptable level.

After spending most of the morning getting nowhere, Liz was sent home with instructions to reduce the Warfarin tablets on Friday and Saturday and stop them altogether on Sunday & Monday ready to be re-checked in the chemo department on Tuesday. We pointed out that in order to get the INR level down below 2.0, it would mean putting her ‘at risk’ of DVT or blood clots going to her lungs. We were told that that was a risk that had to be taken.

At the weekly appointment in the chemo department on Tuesday (19th) a further blood test was carried out. An answerphone message was left during the afternoon on the home phone by the anti-coagulant department (they manage the Warfarin doses) requesting us to contact them urgently.

We eventually made contact with them at around 7.00pm when they said the INR level was very low at 1.5 and that we should immediately increase the Warfarin dose to bring it back up to the desired level of circa 2.5! Clearly they had been left out of the ‘loop’ and were unaware of the issue relating to the INR level required to carry out the drainage procedure.

After discussion with the senior anti-coagulant doctor (at home) during the evening they told us not to take any Warfarin that night and to speak to our hospital doctor or the anti-coagulant department first thing in the morning to agree a course of action. After several phone calls on Wednesday morning it was decided that Liz should be put back on to Clexane injections for a week, and to continue without Warfarin for the time being. I went straight into the hospital to collect a week’s supply of Clexane.

About this time we also had an appointment confirmed for the drain to take place in the Radiography department under ultrasound guidance at 2.00pm on Thursday (21st). However, it was not possible at that stage to guarantee that a bed would be available for the night, which might mean the procedure would be cancelled.

On arrival at the appointed time last Thursday, we were informed that things were a bit chaotic as one of the CT scanners had broken down, currently there was no bed available, and despite trying for nearly four hours to locate Liz’s not inconsiderable sheath of notes, they had still not been located, all of which didn’t bode well.

After about an hour we were informed that a bed had been found, and even though Liz’s notes were still missing they decided to proceed without further delay as they had a small slot in their schedule.

The insertion of the drain went ahead without any major difficulty although it was a little difficult getting the fluid to flow initially. Whilst still in the ultra sound department the surgeon was able to remove about 2.7 pints of fluid although he was expecting around 7 pints in total.

Liz was taken up to a ward by which time a further 1.6 pints had drained off, making a total of just over 4 pints. Then the flow stopped, which nobody seemed too concerned about. After playing around with the plastic tube (much the same as I use for decanting wine!) I was able to get out a further pint…..still a long way short of the expected amount.

No more fluid was discharged during the evening, and mutterings took place about removing the drain after six hours to reduce the chances of infection. A new topic also came into the vocabulary…. Albumin infusion by drip. Apparently this is quite normal if over 3 litres of fluid are drained off. It is a protein product which helps restore the protein balance and also re-hydrates the body intravenously to counteract the loss of fluids during the draining process. Our concern was that it had not been given during the first draining in April. One or other of the procedures had to be wrong. Which one? Just a bit more stress for Liz as well as another hole in her arm for the infusion.

During the evening Liz was seen by two doctors who decided to leave the drain in for a few more hours.

At 1.30am she was seen by another doctor who organised the Albumin infusion and decided that he should take out the drain. To Liz’s horror he said that he had never removed a drain before and was unsure what to do, even though Liz gave him a plastic key which given to her by the team that inserted the drain, and which was supposed to make it very simple to remove.

Liz was by this time (2.00am) extremely stressed, particularly as the nurse who removed the drain in April didn’t know how to remove it and just pulled it out and hoped for the best. It was very painful and not to be repeated. In the end she told the doctor to go away and that she would accept responsibility if it became infected, but that she was not going to allow him to do it in the middle of the night and with no experience of the procedure.

To compound the situation the Albumin infusion initially went wrong when it flowed the wrong way and blood was coming out instead of Albumin going in.

It transpires that there are several types of drain, all of which have different methods of removal. To allow someone who is not trained in the correct removal procedure to take out something inserted in the stomach is absolutely appalling and will be brought to the attention of the hospital administrators in due course.

Liz spent the rest of the night awake, feeling very lonely, depressed and frightened. It was unfortunate that she didn’t get the night staff to telephone me so that I could have gone to the hospital and been with her in her hour of need. She eventually telephoned me a 7.15am in a very distressed state, explaining what had gone on overnight.

I telephoned our liaison nurse and left a message for her to see Liz as soon as possible to try and give her some support, which she did as soon as she picked up the message.

During the morning discussions took place about Liz being taken back down to the radiography department to have another ultrasound scan to see how much fluid remained, with the possibility of inserting a new drain. Eventually this was discounted, probably due it being Friday and everything winding down for the long weekend.

Due to the fact that Liz knows the sister that helped insert the drain, she called in on Liz to see her at lunchtime to check on progress and was horrified by the events of the previous evening. She took less than a minute to use the plastic key to release and remove the drain without any problems or discomfort and gave several nurses a crash course on removing the drain.

Although the drain site was still ‘leaking’ slowly, by early afternoon the ward doctor felt that she could be released with a few dressings on the basis that it would soon stop.

The doctor also told us to start taking Warfarin again on Saturday, whilst keeping on with the Clexane injections until the INR level could be checked again next Tuesday.

Unfortunately the drain site continued to leak for the rest of Friday and overnight into Saturday. Because we had a limited quantity of dressings for the Bank Holiday weekend we contacted our GP who arranged for a district nurse to visit us at home.

She was a little concerned, but decided to fit a small bag to collect the fluid instead of a normal dressing which also meant the quantity could be measured. Over the weekend the drain has continued to slowly leak and today (Monday) the district nurse changed the bag. Around 100mls a day are still leaking out of the drainage site, but hopefully this will stop in the next few days. However, the District nurse will keep in touch and visit when necessary until the matter is resolved.

Our main concern is that the total amount of fluid drained off is still only around 3 litres, which probably means that Liz will have to go through it all again, much sooner than we had expected because it has not been completely drained this time.

Hopefully with the knowledge gained this time we can stay one step ahead of the game and will be able to avoid some of the problems recently experienced.

The vast majority of nurses and doctors that we meet are very kind, helpful and seem well trained. But the administration and communication system leaves a lot to be desired. After arriving in the ward on Thursday still without her notes, they were eventually found in the chemotherapy department after a five hour search. Why everything is still written on paper and not entered into a computerised patient/hospital database which is accessible by all departments I cannot imagine. The time wasted and the cost of moving files around the hospital with the chance of being mislaid is enormous. I just don’t know how a complex organisation such as a hospital can function efficiently in today’s technological age. Too much money spent on administration and management, insufficient use of modern technology which in turn means not enough spent on front line treatment.

On a better note North Dorset Social Services responded very quickly to our request for help getting Liz in and out of the bath. An electric seat was installed within three days of seeing the person from social services. This has made it much easier for Liz to have a bath rather than a shower.

I am sorry this is quite a long update but it is important that I document and record things properly so that I can look back on them as and when required for reference purposes. At least I will have a reasonably accurate account of events even if the hospital lose theirs!

Dick & Liz