Peter's Hospital Diary

Back again, and thank you all for your kind words in the comments. I’m sorry that some didn’t appear immediately (those from John’s family) but the first post from a new source is always held for moderation as part of ‘SPAM’ prevention! But thank you – I think they have all been liberated now!.

And you may have noticed that the system has been down again today. This was a controlled and deliberate shutdown as part of an ongoing upgrade process to the server.

To recap, the blog and web sites are all hosted on a Linux machine (sitting at my feet) connected to an ADSL line. The machine was originally built about 2 1/2 years ago as a self teaching project for Linux – an operating system I had dabbled with in the past, but wanted to learn more about as it seemed to be a credible alternative to Windows.

I have learned a lot about Linux (and for everyday tasks, it is my machine of choice) by using it, and when I started hosting my own website (after taking over from friend Mark) it was the logical machine to run it on – after all, probably 80% of the internet runs on some form or *nix (generic unix like operating systems) and even more run the Apache web server, as do I.

However, running a website as a service carries some overhead, like maintaining resiliance and availability. The system is protected against power surges with a UPS, but the single point of failure is the hard drive, which is only relatively small at 80Gb, and is now about 65% full.

So I have been experimenting with RAID arrays (using two identical disks with one ‘mirroring’ the other so that if one fails, the other can continue). This has not been a great suceess, for reasons I am still trying to solve, but I think is an incompatability between the controller card and my system. So in the interim I have been trying to replace the original drive with a larger one, and use the old one for backups.

I am now at the stage where all the data has been copied across, but the new drive needs to be configured as the boot or main drive, and this is where the problem lies – I haven’t been able to get the new drive to ‘boot’ the system cleanly. (This was the problem on Monday night – I had got all the changes in place, bar one or two, but when the system was shutdown because of the prolonged power failure, it wouldn’t restart at all – and if it won’t restart, you can’t make changes… at least not without a rescue mode! ‘Chicken and egg’)

This afternoon I have been copying all the files across, and (I thought) getting the boot process sorted – but clearly not as the machine still wouldn’t boot from the new disk – so at the moment I am back in the old configuration. Just to compound matters, one of the small standby servers that puts up the “System down for maintenance” pages has expired, so I had to reconfigure another one. (They are little network file servers that have been hacked to turn them into low power Linux machines – normally they act as music servers to MP3 players round the house). So there may a be a few more outages next week when I have pondered the problem a bit more.

Enough of the ‘Geek Speak’! Kt came home today to see us, and to collect her new laptop that arrived yesterday. She has been using Linux on her desktop machine, but the new laptop is Windows based, so we had a mutual learning experience as we configured it for her. I was ‘home alone’ today, so Kt and I had some time together this evening over a stir-fry!

Health wise, I’m not sure if there aren’t some hints of GvHd – or perhaps that is wishful thinking, as it is only just a week since the infusion, and generally it takes at least 6 weeks for the incomers to multiply and get to work. However, maybe room for a cautious ‘onwards and upwards’

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We have returned from our holiday (a day early) after what has been a pretty tiring and emotional week.

I’m not sure if I have mentioned this on the blog, but earlier this year (just after I came out of hospital) my father-in-law was diagnosed with inoperable bowel cancer. It was a stressful time for us all, and although the prognosis was inevitable, the time scales were not certain, and things seemed to be going well throughout the summer. However in August things started going downhill, and last week he was taken into a hospice, for what we thought would be some respite care. In the event, he took another turn for the worse, and on Monday, just before we were due to take Kt to University and then go on holiday, we received a call suggesting that we should go and see him.

We did, and in fact the whole family gathered to effectively say our final farewells, before leaving to drive back home. The following morning we had a call to say that he had died peacefully in the small hours of that morning.

We still had to take Kt to Bournemouth, and then make a decision about our break. We took some of the overflow of Kt’s stuff with us, and saw her settled in, then came home to sort a few things out before setting off to our timeshare in Cornwall.

However, although the weather was fine for the drive down, the following day was wet, there was a lot going on at home, and so yesterday we decided to return home – our hearts weren’t into relaxing in a strange place.

This has been a pretty grim week for all the family, obviously, and it has prompted some darker negative thoughts in me, not helped by the fact that my lymph nodes are still making speech a bit tricky, and I think I also have a bit of a cold which gave me a sore throat and a bit of a cough (which has now eased – thankfully!)

Ironically, the course I was teaching last weekend was on listening, and bereavement, but sadly knowing the theory, while making one aware of the stages of grief, doesn’t make the dealing of it for one’s family or self any easier.

All I can say is that it is nice to be back home, even if it is raining…

However… there is always something round the corner, and while we are dealing with the death of my F-i-L, I am indebted to a friend of longstanding (from when I was a teenager) who I shall identify only as L. L is a director of research at a major teaching hospital, and has been doing some research for me. It is not appropriate for me to go into details at this stage, but there are some leads to follow up. I am also indebted to another friend, Mike, who works for the local NHS trust, who has come up with some other leads to follow, and I am doing that at the moment.

So while I have had some dark moments (and that is really annoying because I don’t really do ill or self pity!) there is a bit of light glimmering, so I can, with some conviction, hope to be going onwards and upwards… Meanwhile I am waiting for the GvHd to kick in!

Thank you for reading so far – just writing it has helped lift the gloom!

Oh yes, Richard & Gillian, the cat’s back!! (although you nearly didn’t have a playground as there was a major system problem on Monday night after we came home – too detailed for now, just enough to say that we had a power failure causing me to stop the computer, which then wouldn’t reboot – that took a couple of hours to fix!)

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A slight change of plan meant that we didn’t get away this morning, or take Kt to university, but all being well, we should be doing that tomorrow!

Meanwhile, I am delighted to see that another former Broadband Campaigner, Gillian, posted a comment today – thank you Gillian!

Onwards and upwards!

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I had a good weekend away with Leukaemia Care, delivering some training. For those of you that have forgotten, I am a voluteer worker with the charity, which aims to provide support for patients with Leukaemia and allied blood disorders, and their carers and families. The details are on their website here and also on the list on the right. (This website is about to be relaunched, so visit it again soon!) Anyway, the charity is about to offer a training course for its own volunteers and staff, and eventually we hope to offer it to other health care workers. I am one of the trainers, and this weekend we completed the first complete set of modules, delivering it to some of the office staff. Very rewarding!

So it was back home last night, and a quick catch up on the blog. I was delighted to see two new contributors to the comments, Sam and Rowan! I met Sam and Rowan (and also Richard) through a Broadband Campaigning about 3 years ago! With all the adverts for broadband services that you see now, it is hard to believe that only 3 or 4 years ago, high speed internet connections were only available in very limited parts of the country, mainly in urban areas. Living on the outskirts of a small village, I felt a bit miffed about this, so I started trying to persuade people to register for the service, in the hopes that increased demand would spur BT into action. As it happened, a talented group of people in BT also thought that this would be a good idea, and the BT Broadband Campaign started, with a message board to exchange ideas and mutual encouragement.

To cut a long story short, I met Rowan in October 2003 one Friday evening (10th – or 17th) in the BT tower where we had out first gathering to put names to faces and meet the BT teams that were supporting out individual efforts. At a later similar gathering I met Richard, and also Sam, who as a talented programmer, went on to develop the Sam Knows web site that has become one of the key resources for finding out technical information about broadband enabled exchanges. Just to complete the loop, you may have seen some coments by Simon M, who was one of the BT support teams, together with Julie and Alex, who were the driving force behind it on BT’s side.

The campaigning was a great success (there were 3,000 campaigners at one time) but having achieved a remarkable success, the team has disbanded. So good to catch up with you Sam and Rowan – and thank you for your support, it really does make a difference!

I am delighted to see that Elspeth is back on line in her own right (having got her computer back!) Don’t forget to visit her blog!

Later we will be going to Bournemouth to see Kt settled in to her ‘digs’ and then off to Cornwall for a few days to relax. I’m not planning to be online while I am down there, but I’ll be back at the weekend!

Onwards and Upwards!

PS – As Richard has just pointed out, ‘digs’ sounds very music hall and conjours up images of stern matriarchal landladies – it is actually a university owned student house she is sharing with 4 others!

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And it was off again to a full day at Guy’s and St Thomas’s this morning!

The day started very well when I bumped into Robert Carr as I was on my way into the Day Unit. You may remember that I was placed under Robert’s care when I was first diagnosed, and I have remained with him outside the main treatment regimes, although he is a Leukaemia specialist, rather than Lymphoma. However I haven’t seen him for ages, although he has been following my progress and has been at the MDM (Multi-Disciplinary Meetings) when my case has been discussed, so he has had a say in my treatment. Anyway, it was good to talk to him, albeit in a corridor, and I always feel much better having seen him!

So it was into the day unit, where it was good to catch up with Orla, Emma, Karen, Liz, and of course Viki. Unfortunately the one person we were missing was the stem cell scientist, Justine, who had been delayed on the trains, so while we were waiting, I nipped down to re-aquaint myself with pharmacy for some steroids.

Now these steroids are “just-in-case” drugs (‘only’ prednisolone) should the GvHd kick in sooner than expected, or the lumps start getting bigger, but I wasn’t told that, so I took the first two when I got back to the day unit! Oh well, it seems no harm was done!

Then I had some IV Piriton, just to help prevent an acute reaction, and the cells were infused – not much, about 20ml. I had to sit around for an hour, again to make sure that there were no untoward side effects, (apart from the drowsiness caused by the Piriton) and it was off to ENT for the check up, although before that I did have another chat with Linny about things. (In the room I call “The Bad News room – it is a side room very tastefully furnished, with pastel painted walls and subdued lighting, and I alwys think that is the room used to break bad news. I don’t suppose it is really, it is just a quiet and private room, and unlike an office. I have shared the joke with the staff in the past!)

The good news from ENT is that wound is healing nicely, and there doesn’t seem to be any complication. The bad news is that the swelling in my mouth, which is still causing me to sound a bit slurred, is caused by more enlarged lymph nodes, mainly my right tonsil and the right side of my tongue. Not so good, and I am seeing them again in two weeks. I will also be seeing Linny before that for the results, and possible further courses of action.

I went and sat in the day unit for an hour before going to St Thomas’s for the PET scan. I have said enough about PET scans in the past, and this followed the normal pattern (except that I already had a canula in from this morning’s infusion which was then used for the tracer). The scan itself was a bit touch and go at one point as the unit had had problems making the tracer, but they managed to fit me in, albeit a bit later than expected. Still it was lovely to see Sally (consulatant) and Margaret (Unit administrator) again, although perhaps not under these circumstances…

I finally left at just after 6 this evening to get the train home. Busy or what?

I am away tomorrow doing some stuff with LeukaemiaCare, but I’ll be back Sunday before going off on a small break. I’ll try and post something before I go.

Meanwhile… O&U – I think!

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Yes, 35 weeks since the transplant, but not quite such good news as before.

I saw Linny this morning, and she confirmed what she had told me yesterday on the phone, that the biopsy of the lump showed that the lymphoma was making a comeback. During the physical examination she also thought she could feel a couple more enlarged nodes slightly further down in the same group. So the PET scan tomorrow will show exactly how far it has become active again.

So, what are the courses of action? As I thought, the main one will be DLI (Donor Lymphocyte Infusion) which will kick off the GvHd again, possibly more virulently than last time. This is not without its own dangers, but there really isn’t much alternative. If the PET scan shows that the disease is wider spread than just the one lymph node group, then I may have a bit of chemo to de-bulk the disease. On the other hand, if it is localised in my neck, then local radiotherapy may be indicated.

However we are going ahead ith the donor lymphocytes, and I am getting them tomorrow morning before the check up at the ENT clinic and the PET scan in the afternoon. The effects take about 6 weeks to kick in (hence the possibility of chemo or other treatment in the meantime.)

However, the good news is that it doesn’t stop us from having a few days holiday next week, and probably won’t stop me going to Cyprus, providing I pass the dive medical on October 2nd. As the lung function test showed a further improvement from last time, I am reasonably optimistic!

I have to confess I did feel a bit down about all this. I had a chat with Viki (haematology nursing specialist, whose praises I have sung on posts in the past) and I felt a bit better after that. I think it’s just that as things were beginning to get back together, the thought of having to fight it again is a bit daunting. Still, it won’t find me an easy target!

On the home front, the conservatory furniture FINALLY arrived! Well, all but some cushions for one sofa, and the coffee table, which are arriving in a couple of weeks.
I must say that it has been worth the wait, and we are very pleased with it!

So, Onwards, and upwards again, although we are a bit further down the slope than we were a couple of weeks ago!

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Hmm – I’ve just had a phone call from St Thomas’s asking me if I am free for a PET scan on Friday. Now I wasn’t expecting to have a PET scan for another 6 weeks or so, so this came came as a bit of a surprise. However I have just rung Linny, and it appears that the biopsy of the lump shows that it wasn’t as benign as the Fine Needle Aspiration indicated, so the PET scan is to see if the lymphoma (I almost feel like the wizarding community saying ‘Voldemort’) is local to the lump or has re-appeared anywhere else. Not good news.

However, tomorrow I am going up to Guy’s (early!) for a chat with them and discuss the possible options. You may recall that we did touch on that when the lump first appeared, but I guess (and at this stage it is only a guess) that the options might include local radiotherapy, some donor lymph cells to trigger off GvHd again, or perhaps the Thalidomide. But this is just speculation – more tomorrow and after the PET scan. It’s funny though, I had a feeling I had a touch of GvHd return last week…

Meanwhile it has been a good week (up until about an hour ago!). I went to the Southampton boat show on Saturday, and saw some lovely yachts (motor and sail, but sadly my lottery numbers didn’t come up, so they will remain a dream for the time being.

I went back to work on Monday – my jaw is still a bit stiff, but easing as time goes by. Next week we are (were? – depends on tomorrow!) going away for a few days in Cornwall, and middle daughter departs for her first year at University.

So never a dull moment (!) Onwards and Upwards, although we seem to have slid back down the slope a bit…

Oh yes, the conservatory furniture should be arriving tomorrow!

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OK, it is probably time to ditch the Apollo 13 metaphor!

Suffice it to say that I am now back home after my three night stay on Blundell Ward on the 14th floor of Guy’s Tower. Great views, but sadly no available wireless networks.

So having arrived on Monday afternoon, and completed the usual forms (can I climb stairs unaided, am I prone to frequent falls, am I independant(!!)) etc, I settled down for the afternoon, with a visit fom the Senior Registrar (whose name I didn’t catch) Warren, the SHO, and the consultant anaethetist, just before dinner time. The hospital food was much the same, or perhaps slightly better than I remembered it fom Samaritan ward – distance lends enchantment – but the best descrption (as given to it by a friend of mine) is ‘very beige’!!

After a quiet evening with a final cup of tea and a biscuit before I went onto nil-by-mouth, it was lights out for a good night’s sleep – NOT. I suppose it was OK, there were 6 beds on the ward, and apart from one person holding long conversations with himself during the night, I got a reasonable night, but there is always a feeling of apprehensiveness before an op.

Next morning (Tuesday) I had a visit from the consultant, Mr Simo, with the all important consent form. In these litigatous times, the consent form is all important, and with it the risks are all spelled out. So at that point I learned that not only is there a bit of plumbing in the area, but a bit of wiring too, in the form of three nerves. One, the accessor nerve, is connected to the shoulder, the second, x10, is connected to the right hand side of the diaphragm and, more significantly, the vocal cords! The third, a minor one, connects to the ear-lobe. While cutting the third wouldn’t be too serious (except for anyone nibbling my ear) cutting the other two would not be very good news, but I was assured that the risk was pretty low. Anyway, I didnt really have much choice!

So eventually (about 11:30) I was wheeled down to the theatre by one of the ward nurses, Jane, who kindly held my paw as I was handed over to the care of the anaesthtic nurse (Annette) and then……

…..I woke up in recovery with a slightly stiff and sore neck about 2 hours later. I must have been in recovery for about 30 minutes or so. I do vaguely remember having a pain killer (morphine) and then I was wheeled back up to the ward.

And there I stayed for the next 30 hours. Rob, the haemotology registrar popped in to say hello, as did Mr Simo. My lymph node was dispatched to histopathology, where it will be sliced and diced and peered at. Meanwhile I had a drain in the wound and I settled down to another restless night, with a plastic bottle attached to the drain hanging from my neck.

By yesterday morning (observations at 7am – ah yes, back in hospital!) I was feeling OK, but there was about 30ml of fluid drained off, which was too much to letme go. There was a danger that the fluid build up could restrict the airway – a bit undesirable. So I kicked my heels on the ward for all of yesterday and got my way through a paperback from the ward library. Breakfast was a in interesting meal. Cereal (non-kelloggs cornflakes or weetabix) with bread and butter. My request for bacon and egg was met with a blank stare, and a request for toast was met with “We don’t do toast – it isn’t ward policy” Er excuse me??? Apparantly when they did toast in the kitchen, it came out cold and people complained (probably becasuse it was soggy – nasty sliced bread) and when they took the toaster round the ward, it set off the fire alarms…. I suppose in hind sight it is funny!

This morning dawned after a slightly better night, with observations at 7am again, but this time there was less than 10ml collected from the drain, and after the ward round, I was told that the drain and staples (15 of them) could be removed and I could go. So the delightful Angela, reoved the drain and clips, redressed the wound and I was on my way at about 11:15, and got home early this afternoon at just before 2. I must admit I have dozed a bit this afternoon, but apart from a sore throat and a swollen lower cheek, making me sound like a cross between Sean Connery (without the accent) and Tony Benn (sho thatsh all right then Mishter Bond) I feel pretty good!

My next appointment is with the haematologists next Thursday, and a follow up at the ENT clinic next Friday.

And finally, a quick thank you to Mr Simo and his team, and the nrses on the ward, especially Jane and Angela, and the others whose names I didn’t catch but who looked after me really well!

Onwards and upwards!

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Just a brief post this morning. I will be going up to Guy’s (Blundell Ward) today at about 12:30 to get there for half past two. I will be going to theatre tomorrow morning, but I don’t expect to be out before Wednesday.

I doubt that I will have reliable internet access over the next couple of days, but I’ll post something here as soon as I get back!

Other than that, it was a busy weekend – in preparation for a bit of decorating I had to do some plumbing alterations – which inevitably took longer than expected and has involved a bit of shower re-tiling. Most of it is done, but there is still a bit of fiddly tiling to do, and the grouting, but that can wait until I get home – then I need to let in a piece of plasterboard on the other side of a partition wall (where I needed to get access to the pipework) and the decorating can begin! After finishing that we had a meal to celebrate youngest daughter’s birthday!

Onwards and upwards!

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I have just returned from my trip up to Guy’s and the visit to the Ear, Nose and Throat (ENT) department. I am delighted that my ear, nose and throat all look healthy (ever had a camera stuck up a nostril? – an ‘interesting’ experience…) and so no complications there. The only slight abnormality is that a tonsil on the lumpy side is slightly enlarged, but he couldn’t feel any other enlarged lymph nodes in my neck.

Which leaves the matter of the lump itself. Although the ENT registrar was slightly less bullish than the haematologists, there is still no need to hit the panic button! However they think that there may be a slot for me on next Tuesday’s operating list. The bad news is that the removal will have to be done under a general anaesthetic because it is very close to both the jugular vein and the carotid artery, two major bits of plumbing, which they will have to operate around. This would make the procedure very uncomfortable for me under a local anaesthetic.. More seriously, if I moved at the wrong moment there is an increased risk of damage to them, which would NOT be a good thing!

The consequences of that is that I will probably be admitted on Monday evening, operated on on Tuesday morning, and then released on Wednesday, so it will be at least a two night stay, possibly three if they have to put a drain in as that will need to be removed. The good news is that it should all heal up within a week or two, so it shouldn’t interfere with my diving medical, or the Cyprus trip!

So much for the medical news.

On other topics, my first full time week back at work has gone well, although consistent early starts are a bit tiring! Last night we had a bit of a bash for eldest daughter’s (Vicki) birthday which went well, and the conservatory furniture is due to arrive on Tuesday – when I won’t be here!

Finally, it’s a lovely sunny day here (40C in the conservatory when I got back – vents and windows now opened) although it is getting cooler at nigfht time. Definite feel of autumn round the corner.

And it is now over 33 weeks since the transplant, so…. Onwards and Upwards!

Update – just had confirmation that I will be admitted on Monday.

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