December 2009

December 2009
Dec 1 Another good night’s sleep with bloods and obs taken around 6.00am. This was a fairly quiet day with only cyclosporin to have intravenously. I didn’t have a headache but did feel a little nauseous all day. I was never really close to being sick but it still caused some discomfort.
It was also an effort to drink enough even though I have a good selection of fruit teas, squash, fruit juice and ribena.I don’t drink coffee and still can’t fancy tea. When the food trays came it took quite an effort to eat but I did feel a little better afterwards.

I also tried out the sea sickness wristbands which a friend brought in but as yet the results are inconclusive. I rather suspect that the correct positioning over the pressure point is critical.
Nick has been working away for two days so it was lovely to have a friend visit in the afternoon, particularly as it is a 3 hour round trip, the return journey having to be undertaken in the dark amidst rush hour traffic.
This friend had been experimenting with making extensions and hair pieces from my cut hair so that when I lose my hair they could be worn as a sort of fringe under a hat. A great idea, but rather tricky to carry out successfully. I feel that I have now got over the hurdle of my hair issues and am no longer very concerned about how it turns out/falls out! I wouldn’t be surprised to find that I don’t lose it after all!

December 2nd
Had a bit of a wakeful night and as it turned out so did the cleaner and her friend. Apparently it was a full moon – werewolves no doubt .
I felt fine when I woke but there was a general background nausea so I put on the wristbands again and drank some ginger tea which helped.
After a shower and hair wash I did lots of exercises including a spell on the exercise bike. Having thus gained my feeling of self righteousness, I was then content to do very little apart from listen to the radio and do some sudoku while the cyclosporin took its 4 hours to go through.
It turned out I also needed a pool of platelets which usually at this hospital means that my level must be below 20. Although the platelets are tissue matched I did get a single hive which is not supposed to happen but on the other hand is not enough to get concerned about. An hour later the level was checked to see how they were incrementing. At my local hospital I’m used to being automatically told levels etc. I do ask the nurses here from time to time and they say they will find out but don’t actually come back with the information.
Had a surprise visitor in the evening – a friend who now lives in Spain. He was back working locally for a few days and took the time to come and see me, through horrid driving rain. This was a very opportune visit as he is an IT consultant and so could iron out the difficulties I’d had with sending e-mails from the lap top. Just as well he didn’t charge me his usual hourly rate ! he also took a photograph with his i-phone to add to this blog.
Felt quite tired after Nick and the friend left so lay for a while listening to my mp3 player.
Had a phone call from my brother in Scotland and he told me that there was now snow on the hills. It all seems like another planet when you are cocooned in this warm benign prison.
All ready for the transplant tomorrow. Spent some time thinking about my donor and what he will have been going through these last few days in order to donate peripheral blood stem cells.
I’m really neither up nor down about the actual transplant.It all seems to be low key. We’ll see what tomorrow brings!

December 3rd DAY0 TRANSPLANT DAY! WOOP! WOOP!
Another wakeful night. I had just had my bloods taken and obs done when a friend rang to see how thing were and to wish me luck before she went to work.
Because they were not sure when the cells were coming over, my cyclosporin was put up early. This was before I was dressed so it made for some interesting contortions getting into my clothes with the ivac machine attached!
I felt fine and did some exercises attached to the ivac machine, cycled for quarter of an hour and then generally took things easy.
As it turned out the cells didn’t appear until 5pm. A specialist transplant nurse and another staff nurse checked them off against my hospital number and date of birth. Apparently although the donor wasn’t particularly big, they had managed to harvest plenty of cells. Most were in the bag I was to receive but there were some others which would be stored for contingencies i.e. if I came down with something like glandular fever later I could be given some of the extra cells to boost my immune system.
I was given the pre-med of 2 paracetamol and some iv piriton and then the bag of cells was attached and off we went. The cells looked like a large bag of watery blood. The nurse stayed with me initially in case there was an instant reaction and obs were taken. Apart from a slightly raised temperature there was no difference to normal.
The cells took about 2 hrs to go through and then a flush was put up and it was all over!
Later in the evening I began to feel very cold and even wore my fleece for a time. I’m not sure if this was related to the cells or not.
I've now begun to number the days o, 1, 2 etc that is dating from the tranplant as it is in these terms that certain procedures happen and reactions are expected.

December 4th DAY1
Had a good sleep and woke up feeling fine.
After the usual ablutions, breakfast, etc the cyclosporin was put up and I lay down on the bed. For some unknown reason I then drifted in and out of sleep for most of the morning and early afternoon. What an absolute luxury to come to, turn over and drift back to sleep.
Eventually around 4pm I got up and started catching up on my blog and on some e-mails. Nick came in for a couple of hours and we played cards. For the first time in the last few days I actually won a couple of games.
Nick brought in a hiking magazine for me to read. In it there was a picture of Suilven – an improbable looking 3000ft+ mountain in the western Highlands that I have wanted to climb for many years. It has now gone on to my focus list for when I am fit again. If there is something I want to visit or something I want to achieve, I keep a picture of it in a particular area in the kitchen, thinking about it each time I see it until I actually manage to visit, climb etc. It ALWAYS works. So far I have got Suilven, a couple of rock climbs and the Scilly Isles where we hope to do some kayaking.

December 5th DAY2
Had a wakeful night and a very vivid dream about being incarcerated and escaping for a short time to a market place. I wonder where that came from.....
I’m afraid Dec 5th was not a very interesting day in blog terms just the usual cyclosporin then followed by a magnesium solution and platelets later on. The chemo depletes minerals such as magnesium and calcium so supplements are often required. If a small amount is reqired the dose is given orally but if the need is more urgent then it is given intravenously. Platelets and blood levels also often drop.
I did lots of exercises in the morning and wrote the Christmas letter, giving our friends an update on the family year.
A friend came up to visit in the afternoon and we had a good long chat.It is very sociable when I can offer my visitors a hot drink made in the room – very civilised.
December 6th DAY3
Another wakeful night and another vivid weird dream
Felt absolutely fine and did another hour of exercises; a mixture of the exercise bike, pilates, yoga and some simple muscle strengthening exercises. The docs say this will all be beneficial and cut down recovery time so as long as I am able I intend to continue.
As usual had the cyclosporin and also had methotrexate (a small dose pushed into the line). This acts prophylactically against graft versus host disease.
I spent most of the day on the computer and phoned Nick up to say not to come up but take the time to catch up at home – the word “ ironing” has now entered his vocabulary! At one point I had to ring son number 3 for some help with a computer task – what a difference it makes to the hospital stay when you can freely use mobile phones and computers.
As Nick wasn’t making a 3 hr round trip by car I reasoned that I could splash out by watching last night’s X-Factor on ITV Player. It was interesting that for the last day and a half my blood pressure had been constantly 110/70 but that immediately after watching X- Factor it went up to 130/85
Dec7th DAY 4
Another wakeful night with accompanying dream in sharp detail. I seem to drop off easily but am woken for obs around 2am and then find it difficult to get back to sleep. Usually I’ve just dropped off or so it seems when I am woken for bloods and obs at 6 am. After that I could usually sleep for a few hours but have to be up for breakfast around 8am and organised for treatment around 9 am.
The usual cyclosporin and exercises and a short doctor’s visit. I’ve become a bit boring with my “nothing to report.”
Had a long chat with A who does the domestic work in the ward. She like many of the lower paid workers on the ward is Polish and we exchanged details of the differences between the Christmas traditions in our countries.
I had a pool of platelets in the afternoon and set about using the laptop only to find it wasn’t working. At that point enter a ward hostess who just happened to have done a degree in IT for Business and she sorted me out so I am now in the middle of updating the blog.
I was given a prophylactic antifungal called Ambisome. At first a tiny test dose is given to gauge reaction. After half an hour if everything is alright the main dose is given. Apparently many people get bone pain from it. Within seconds I had flushed scarlet and thought I was going to explode from the inside out. However the main dose was administered at half rate and I have not had any adverse reaction since.
It is now 9pm and I still have 2 units of blood to come. As each takes 2 hrs to go through it is going to be another disturbed night
December 8th Day5
Yes it was a late night – nearly 2 am before I was detached and awake again at 6am to have bloods taken . Crikey they’ve only just given me some and then within 4 hrs they are wanting some back!
Did the usual hour of exercises and am beginning to feel the benefit of them I think. I did ask whether they ever let patients out to have some exercise up and down the stairs but apparently that is a step too far! Even with a mask on I would be touching doors, handrails etc which had been contaminated. If you are very good you can walk up and down the corridor of the ward just before you are discharged.
The docs were in and out in about 5 minutes, quick sound of the heart and lungs, quick look in the mouth for sores and a look at the hands – you can tell lots from the state of the nails, usual questions about bladder and bowels and then they are off to see someone more deserving of their attention.
I only had standard medication – the cyclosporin over 4 hrs and magnesium over 5 hours. The nurses were so busy that it was a further hour before they came to take down the bag – you get used to the machine beeping at you after a while. I also had a small amount of acid pushed into the line by syringe but cannot remember what its purpose was.
The most exciting part of the day was when I had an alcohol free lager which Nick had brought in and within 5 minutes I was covered from head to foot in bright red blotches which were very warm to the touch. It obviously didn’t agree with the cocktail of drugs whizzing round my system! I think rashes must be my thing but after half an hour even that disappeared.
After nick left I watched a DVD he had brought in. It was in German! The nurses will be thinking I’m some kind of intellectual as the previous film I watched was in French. They couldn’t be more wrong because it took me a quarter of the film to work out that it wasn’t going to revert to English and a further quarter to work out how to show the subtitles!
December 9th DAY6
A poor night’s sleep and another dream. I dreamt that I’d got permission from the hospital to go to the Climbing Club AGM as long as I was back in time for my 9 am cyclosporin and as long as I didn’t have alcohol and I didn’t go climbing. I thought I might just take my climbing shoes in case. I took a long time to get dressed and gather up my bits and was just leaving when I woke up and saw the ivac machine and knew my chance had gone. At least I knew where this dream had come from – I’d just received the club newsletter with the AGM notice in it. As the real AGM is not till mid January I might actually be able to make it!
Felt really good today probably because I’d just been topped up with blood so more energy. Certainly the exercises went well. I did my usual stint on the bike with the walkman plugged in, watching the workmen below hanging around the new bone marrow suite. They never seem to do any work just wander back and forth in small groups or put rubbish in the skip. They are however a useful indicator of temperature – if they have the hoods of their hoodies up under their hard hats and blow on their hands then you know it is cold.
My walkman is third hand and when you look at the menu everything is available so you carefully select but then the machine decides what it will play you – all that you can be sure of is that it isn’t what you selected. Anthony and the Johnsons isn’t really an obvious choice for cycling but better I suppose than Bach’s cello music.
When a nurse came to take my routine obs and they were consistently stable and normal, I said to him that I must be the healthiest person on this unit. He thought about it for a nanno second then said “Yes, you are.”
I keep expecting to be knocked for six by the treatment and reaction to the transplant but seem to feel better each day.
Transplant day is counted as Day 0 and by Day 18 they hope to see signs of engraftment so there’s a bit of waiting to go (We are now on Day6). The doctor seems to think I will be extremely lucky not to get some kind of infection sometime during my stay.
Today’s medications included the usual cyclosporin as well as a small dose of chemo –methotrexate and the ambisole (anti fungal which made me feel I was going to explode last time) and a pool of platelets so quite a cocktail but all passed off without a hitch and no response to the ambisole as it was put through at half rate.
I felt so good that I spent the whole afternoon doing some watercolour painting - an absolute pleasure and no guilt as for once there was nothing else I should have been doing! As I was quite content I gave Nick the evening off for which he was duly grateful as that would mean he could get on with the ironing!
Now I must be one of the few women on the planet who enjoys ironing so we thought of ways that he could bring in the ironing next time but we both agreed that appearing with an ironing board and a basket of clothes might be taken by the staff as a step too far. As it is I’ve probably got some kind of squatter’s rights to this room with all the stuff from home that I’ve already brought in so Nick will have to persevere with getting to grips with the shirts.
December 10th DAY7
Hurrah –slept through without any memorable dreams. It was a late night as the 9pm medication didn’t arrive till after 11pm – they were shorthanded and very busy. Had a chat to the nurse then got my head down around 11.45pm. From what she said, if I have weathered 2 shots of methotrexate without getting a sore mouth then I may avoid it altogether. Mild disruption at 2am for obs and then bloods at 6am.
Further advances in the food department;- it turns out that we can have toast in the morning so that has been an improvement. With this new and exciting menu it would be easy to overeat so I’ve decided to stick to fresh fruit at lunchtime and then at least I will have an appetite when it comes to the evening..
My climbing partner phoned for a catch – up and asked if I wanted to be in on the rental of a house on Lundy for climbing one week next September. I of course said yes and immediately felt cheered by the prospect! Now I need to get a photograph of The Devil’s Slide ( being an iconic climb on Lundy) to stick up in the kitchen next to Suilven
Got stuck into the exercises again then read some newspapers and magazines. After lunch had a bit of a snooze before the consultants round. Needless to say they are very pleased with progress. I asked about levels and my neutrophils are at 0 so at high risk from infection and it is important that I keep to a neutropenic diet i.e. not choosing salad, pate or soft cheeses and making sure that all fruit is peeled before eating
A day relatively free of drugs – just the usual cyclosporin and calcium in glucose which follows the methotrexate. Apparently the normal saline solution which is used as a carrier reacts with the methotrexate thus the glucose. I am to have 4 shots of this calcium mixture at 6 hourly intervals so that looks like more night time disruption.
Nick came laden down with lots of painting paraphernalia. He’s always so relieved to have completed his list of tasks when he gets here. Joan the specialist transplant nurse popped in for a chat and also said how well everything was going. She said that even if I wasn’t quite ready for going home for Christmas I might get a few hours or even overnight on parole!
Nick and I had our usual few games of cards, more enjoyable now that I’ve started to win the odd game or two and off he set on his one and a quarter hour journey home.
My scalp has been feeling sensitive – is this the forerunner to hair fallout? Also nick noticed a patch of grey hair - a bit like the Mallen streak but at the back of my head – another sinister sign?
December 11th DAY 8
Another good day though as it progressed, my scalp became more and more sensitive. Is the next big adventure (hair loss) about to begin? I think it probably is because I tried pulling out a few hairs at a time and they didn’t put up too much resistance.
There was a query over my cyclosporin level (400+) The level should be between 150 and 250. The docs think it may have been taken from the wrong lumen ie the one that I had had my cyclosporin through and so a false high reading may have been obtained because of residual cyclosporin in the line. To check on this I had to have blood taken from a vein. Thankfully it turned out to be a false reading.
I did my usual exercises and wrote the letters to go off with the last of the Christmas cards in the morning then set about the Observer cryptic crossword. I’m not quite up to steam. When I was in Hospital B, I could (with a little help from one of the nurses) complete it before the next issue came out.
Had some ambisole (antifungal) again given slowly to avoid reaction. There was a query over having my cyclosporin orally in tablet form but in the end I had it intravenously over 4 hours so it didn’t finish till just after 11pm.The oral version will start tomorrow. At the same time I had a pool of platelets running through my other lumen.
The docs want to keep my platelet level above 50 to avoid any more petechiae rashes and today’s platelets were actually 66 but the one bag of my special tissue matched platelets left in store in the hospital were due to run out of date at midnight (they have a shelf life of 5 days only). It therefore made sense for me to have them rather than waste them. It is also possible that my level might drop below 50 over the weekend and these special matched platelets r have to come from either Bristol or London and are more difficult to obtain at the weekend.
As I am feeling fine and don’t need anything urgently I gave Nick the night off and watched a DVD – in English this time for a change. I also tried to do a bit of on-line Christmas shopping but failed at the checkout as I think there was a fault on the website – very frustrating.
December12th DAY 9
A pretty good sleep and woke up feeling very well. I completed the usual breakfast, shower, exercise routine. The exercise bike is right up against the window and it had been annoying me that the glass was very streaky – it had obviously just been wiped over by a wet cloth so I used a piece of newspaper and a little water and soon had it crystal clear – on the inside at least. The window is a double glazed unit with a venetian blind unfurled permanently between the panes. The only way in which it can be changed is that the slats can be closed or opened. I’m not particularly fond of venetian blinds and it means my view of the outside world is always horizontally striped. Also between the two panes of glass on the outer pane is a fly just about head height when cycling. I’m pedalling away goodstyle and the fly never does any exercise. I’m not sure whether it is dead or just in a catatonic state and will buzz about once summer comes. Anyway it is probably a sign of mental deterioration that I find myself talking to it most mornings!
From a medical point of view this has been a very boring day. My cyclosporin has gone to an oral dose of 75gm night and morning and I haven’t been connected to the ivac machine at all. I do though have quite a selection of tablets, covering anti-virals, stomach protectors ( one of which is a particularly vile liquid given in a syringe – you squirt it into your mouth and follow it down quickly with something a bit more palatable) ,magnesium,two different antibiotics and anti-sickness. At night I also have the choice of a sennacot depending on bowel activity during the day!!
Haematology at least in this area is quite a small world as I found out today when the doctor turned out to be someone I knew quite well from the other 2 hospitals I have been treated at. It was good to catch up. She now works in this hospital in a different area but does the odd weekend on this ward.
I am now on saline mouthwashes and also Difflam a bright green mouth wash which is mildly analgesic and anti-inflammatory. To everyone’s surprise I haven’t (yet) got a sore mouth with ulcers. The doctor also said she hadn’t seen anyone on the exercise bike this far into the treatment – all good signs I hope.
A good part of the afternoon was spent downloading 400 photographs and sorting them into different folders. Who knows I might actually get round to having some of them printed.
Nick came in the afternoon and we had our usual swop of clean for dirty washing, a few treats – oranges and deep filled mince pies as well as some nail strengthener – I think the medication has done for my nails
I splashed out today and rented the Patientline television to view the X-Factor final. It turns out that it costs £3.50 per 24 hrs which is better than I had initially thought. I certainly expected that the day’s rental would terminate at midnight. It is still a tiny screen, four and a half inches by four inches (I measured it!) and the sound production isn’t great. Headphones should be provided but not in my case. I may have to extend the rental tomorrow as it turns out that the final final is tomorrow!
December 13th DAY 10
Another ivac free day and feeling just as fit as before. I completed the usual shower and exercise routine. Every time I shampoo my hair I wonder if it will be for the last time but it was all there again this morning, still fixed to my head.
Had a busy morning. I helped to make the bed – it’s a bit of a treat having clean sheets and towels every day and also spent a fair bit of time with phone calls and Skype. I also had some success with the on-line shopping. I bought two identical products but as far as I can make out the card has been debited with the double amount but the on-line receipt shows only one parcel has been sent. –more frustration
I had a long chat to the registrar when she came round this morning and asked her what the criteria were for leaving hospital. She said that my neutrophils would need to be 1.0 and I would need to be transfusion free. This was a lot further down the line than I had expected.
Since leaving hospital in Nov 2008 my neutrophils have rarely been 1.0 or above and tend to hover between 0.5 and 0.9. Also I have been transfusion dependent for the last year and have been existing perfectly well in the outside world so was surprised to hear that I would be staying in hospital till my levels were within the normal range.
I also told her that it had crossed my mind that my wellness at present might be an indication that my system has not been knocked back enough and so will prove too robust to take on these new cells. She said not to read too much into that. I suppose up till now I haven’t really thought about the 15% of engraftment failure. The good news is that so many cells were harvested from the donor that there are still some in storage if the process needs a boost. Interestingly enough I was reading about peripheral stem cell storage to-day and found out that they are stored at -165oC in nitrogen vapour – that’s pretty cold. It’s good to know that they get heated up to 37oC before they are transfused into the patient!
Well I think it is just a case of waiting to see how things pan out. By Day 18 they hope to see evidence of engraftment so that will be Monday 21st December.
I spent quite a lot of time on communication, skyping and phoning family and friends which is good at the time but can be quite tiring.
Nick brought up the latest list of requirements – I think these lists are the bane of his life! We of course had our usual half dozen games of cards.
After he left I signed up to Patientline again (television) to watch the X-Factor final. At least Nick is pleased he doesn’t have to sit through it with me at home!
December 14 DAY 11
Well it felt like very little sleep through the night but actually when I was up and showered I felt fine so I probably had more sleep than I thought. The docs said that I could have a sleeping tablet if I needed one but that it was still important to have the obs at 2.00am. They said perhaps they could ask the night staff to collect the blood a little later than the usual 6.00am as there is less urgency as I am well.
A friend came to see me – a 2hr journey by bus and train. If that wasn’t noble enough she also brought a homemade cake. I hadn’t seen her for some months so it was great to catch up and put the world to rights.
I wrote to friends and had a few phone calls – so no real isolation at all. I had intended to do some reading but the time just disappeared! I didn’t even open the laptop.
In the late afternoon I had methotrexate (chemo) and magnesium sulphate in solution by drip. I also had Ambisole which made me feel as if I was exploding the first time I had it. When that happened the nurses changed it to half the rate i.e. over 2 hrs instead of 1 and I was fine. I was therefore prepared to be fine this time as it would be given at the same slow rate. However, within minutes of it starting I got a tightness in the chest, pressure in the head and a peculiar painful pulsing going through the centre of my body. This time it was changed to run over 3 hrs. You know something is evil when it has to be covered up because it can’t cope with daylight! This drug comes with an opaque red plastic bag covering it for that reason.
I t is now 10.30pm and the nurse is waiting to hear from the doctors what my cyclosporin dose is to be. Typical – it has been quiet for most of the day and then in the evening things begin to get exciting and busy!
Dec 15th DAY
Managed a better night’s sleep though they still came around 6 for the blood. Felt pretty fresh and was on the exercise bike by 9.15am I had a bit of a stiff back and don’t know if this is down to the exercises or the result of the weird effects of the Ambisole. In certain positions I am certainly still getting the odd painful twinge reminiscent of the first few minutes of the Ambisole.
Got back onto the case of the missing Christmas present from 2 days ago. I was reassured by the firm that only the cost of the first gift had been taken from my card so I reordered the second. I then shopped on-line for a further 2 presents – good progress! While I was doing this I was listening to a very interesting programme on radio 4 about Sable Island a crescent shaped island of sand, 25 miles long, off the Canadian coast level with Nova Scotia. With the Labrador Current and the Gulf Stream, there is a lot of fog and strong winds mean that the island is always changing shape. There are hundreds of wild ponies, huge numbers of seals and less than 10 inhabitants. The place sounded so intriguing that while I was on the Amazon website I just treated myself to a book about the island. You can get carried away with this internet shopping!
It wasn’t all success with the computer though, somewhere while trying to change my e-mail address to lyness with 2 s’s instead of lynesss with 3 s’s which is how I noticed it appeared on the Live Mail site, I ticked the wrong box on one of those annoying pop-up windows and deleted the e-mail address and all the e-mails. It had come to my notice because some of my e-mails weren’t getting through. Now no e-mails were going to get through in either direction! A quick call to number 2 son reassured me that it wasn’t the end of the world but that I’d have to find all the set up names and passwords from home to get it back in action.

Nick appeared in the early evening weighed down with the contents of the latest list. He had put most of the goodies away and was just getting me an alcohol free lager from the fridge when one of the bottles fell and smashed so there was a bit of fun clearing that up. We also couldn’t quite rid ourselves of a feeling of guilt as if we’d smuggled in some kind of contraband. You know you are living simply when the highlight of your day is a bottle of alcohol free lager!
I am managing fine without alcohol but I was discussing with the nurse how difficult it must be for smokers to cope with being shut in a room where smoking is absolutely prohibited. She said that most have nicotine patches so that they don’t suffer withdrawal symptoms.
Then of course it was update the blog time. I know it will be very good to look back on and may be of some help to people going through a similar experience but it does also sometimes feel like a bit of a penance, especially when you are a couple of days behind. It is amazing how the events of even 3 or 4 days ago become a bit of a blur. I realised with some shock that I’ve been here for more than 3 weeks! I had to resort to the diary to check it was 3 and not just 2 weeks. They’ll be throwing me out soon and I haven’t begun to enjoy my seclusion properly yet!
Have just had some folinic acid and been told my next lot will be at 2.45am but that they will merge my 2.00am obs with it to avoid too much disruption – thoughtful!
December 16th DAY 13
I had been lying semi comatose since the bloods were taken around 6.00am and came to with a jolt when the television leapt into life at 8.00am. I think they try to tempt you with a free half hour, hoping that you will sign up for the whole day. Anyway it brought it all home – the stress of Christmas with last minute present ideas and how to get into shape and what to wear to all those parties, advertisements full of bargain must-haves and freezing temperatures. It was great when the television switched itself off after half an hour and I could return to my own warm little world where I’m not even sure of the date without looking it up!
Because my back had been a bit stiff, I decided to go easy on the exercises which were hard on the lower back. I don’t know whether this led to a general feeling of apathy but in the end I only completed half of them and then began to feel a bit nauseous so lay down on the bed under a blanket and had a snooze which turned into an hour’s sleep.
I have to say I did feel much better afterwards and had some ginger tea to keep the nausea at bay though in fact the sick feeling had disappeared. In a perverse way it was good not to feel 100% so I could in part justify my being in hospital.
My morning was brightened up by a postal delivery and lots of good wishes. Also included was an excellent A5 photograph sent by my climbing partner of a VS climb on Lundy called Diamond Solitaire – a long steep slab climb above the sea. This will now become the climb to focus on and aim for in September when a group of us rent out The Old Lighthouse for a week’s climbing. Amazing the difference these goals make.
Nothing to report to the docs except perhaps for increased sensitivity of the scalp. Is this the hair going at last? They said there was still time for it to happen so we will watch and wait.
I generously gave Nick another night off and decided to do some watercolour painting in the afternoon. While I was painting away, listening to a short story on the radio, I thought to myself I hope they don’t turf me out too quickly – I’m just getting into the groove.
In the afternoon I had the nasty Ambisole again but this time had a pre-med of 2 paracetamol and the bag was given over 3 hours so there was no adverse reaction.
In the evening I was just about to resume the painting, having had my evening meal of bean and vegetable chilli when a friend appeared with bottle of wine in hand. This friend is particularly keen not to pass on any germs so she was washing the bottle in the sink when the nurse passed and gave her a strange look! It turned out it was non-alcoholic gloog from Ikea. They recommend that you serve it with raisins and almonds and also suggest that wine or vodka can be added. I didn’t think those Swedes were teetotal.
Last task of the night – swallowing down the fistful of tablets and deciding whether or not to have the sennacot – decisions, decisions.

December17th DAY 14
Washed my hair in the shower and found that my hands were covered in hair. At last my hair was beginning to fall out. Great excitement! Now I feel as if I’m part of the team, beginning to react like it says in the booklet at last.
After the exercises I felt a bit tired so thought I’d have a snooze for a few minutes. An hour later I woke up! I did feel much better for it though.
Just after 12 o’clock two visitors arrived – they had come by train and bus – a two hour journey. We had a good long chat. It was great to hear about the outside world and about mutual friends. They had just left when the consultant and doctor appeared on the usual Thursday round.
They announced that I could go home in a few days time. It took a few moments for it to sink in. I had been expecting a few hours out at Christmas or even an overnight stay before coming back into hospital but here I was leaving hospital for good in 4 days time! Mixed feelings of “Great!” contrasting with “I haven’t finished enjoying my isolation in here yet!”
I asked about signs of engraftment and they said that my platelet level was over 100 (the normal level is 150 – 450 but mine had hovered around15-25 for most of the past year and a half, only rising immediately after a transfusion before dwindling back down. The neutrophil count was 0.2 and would need to be 0.5 before discharge but they seemed confident that that could be achieved.
After they left, a drip was put up of magnesium sulphate my only drug of the day. The specialist nurse appeared a little later with an information pack – a sheaf of papers with a plastic cover which will also house the results of blood tests etc and can be taken with me to any appointments at this or my local hospital.
The information was pretty much as expected:-
• Be prepared to be tired and need an afternoon sleep
• No driving for a couple of weeks or so
• No shopping in busy supermarkets or cinema trips
• Gentle but not strenuous exercise
• Allow 6mths to a year before returning to work
• Be prepared for emotional lows
• Maintain high standards of hygiene
• Stay away from anyone with a cold, cough etc
I have to attend clinics twice weekly, one of which is held in a hospital close to this one. That will be a long haul – one and a half hours travel each way. Some aspects of the support treatment might be given at my local hospital as time goes on.
So the immediate future which had been a vague blur was now taking shape and I would be home for Christmas.
I was still reeling from this news when another two visitors appeared who had also driven the one and a half hours to get here. People are so kind. It was great to have someone to share the news with and talk over the prospects for the next few weeks.
After they had gone I started with a headache – all that excitement- and it increased until I had to ask for pain relief. It felt as though the back of my head was in a clamp with pain across the eyes and brow. It was of such intensity that when Nick rang I couldn’t concentrate enough to maintain the conversation and had to ring off.
Typical, just when I get news of going home I actually feel worse than I’ve felt since the start of my stay! Thankfully the pain was dulled enough for me to get off to sleep, helped by a cup of camomile, limeflower and lavender tea. Tucked up in bed I felt like Peter Rabbit.
December 18th DAY 15
Not quite winter wonderland but I awoke to snow on the rooftops and the construction workers all with their hoodies up or hats under their safety helmets, standing around with their shoulders hunched, blowing into their hands. The south-east of England has been hit by snow with delays at airports and the AA responding to 1000 calls overnight. However the little snow we have here disappeared by lunchtime under a bright sun.
The headache was still hovering around so I had some pain relief and got into my routine of breakfast shower and exercise. After that I treated myself to a lie down and snoozed for about three quarters of an hour.
In the afternoon I began to update the blog which now seems to be followed on-line by several people and some people have also started commenting too which is great.
Another long distance visitor whom I hadn’t seen for some time came and we caught up on the latest family news etc. During this time the headache began to return and I requested pain relief which dulled it back down again.
Later in the evening I rang number 3 son to see if he had heard anything from his interview earlier in the week. I knew they had said they would let him know early and since he hadn’t been in touch I had assumed he hadn’t heard and thus hadn’t got the position. It turned out that he would need to subscribe again to the internet to access his e-mails and was intending to do it the next day. I offered to look them up for him and there it was –“We’d like you to start on January 5th.”
Woop! Woop! The ex- student who had been living on the breadline and looking for work since June has got a real job working for a very reputable newspaper! There is a probationary period of a month but it is a real job! Not like the internships which he would happily have accepted whereby you get paid only travelling expenses and are grateful for the experience of working for a successful firm.
After that I started packing things away and I’d just got on to my feet when I had a sudden urge to vomit. Very little warning, I hadn’t felt nauseous beforehand and I felt fine afterwards though the headache had returned. Still with some paracetamol and codeine I managed to get off to sleep.
December19th DAY 16
Had a good sleep but woke up with the headache again. It was like the back of my head was in a clamp and there was pain across and behind the eyes.
I was thirsty so drank 3 glasses of water and was not hungry so only had one slice of toast. However, all of this made a speedy reappearance when I was sick again.
I decided that I would give myself a day off the exercises as I didn’t feel up to it and had a snooze on the bed instead – another snooze that turned into a sleep!
The docs were not sure what the significance of the vomiting was – whether it was related to the drugs I’d had or a late reaction to the chemo. A close eye was to be kept.
Having had so little for breakfast and very little last night of my main meal, due to lack of appetite, I ordered an egg sandwich for lunch and along with some water was able to keep it down.
A bit of excitement, the engineers came to fix my toilet which wasn’t flushing. I wasn’t too impressed with their standards of hygiene though. They started off wearing gloves but one in particular ended up with only one glove on. He also came through the ordinary door rather than the air lock which meant that nasty, outside, unfiltered air got into my room. Was I just getting too fussy? After all in 3 days time I would be back in the outside world.
I also had another visit from the Ugandan volunteer who had visited some days earlier, taking note of my views on the care, food etc in the hospital. This time he was just back for a chat. In January he is off back to Uganda for 6 months to teach in Universities bringing them up to date on the new technologies available. He is also going to be working with older local people who know about native medicine he aims to find out what plants are used and how extracts can be taken for use in current medicines. He seems driven by altruistic motives to spread this knowledge – as he put it – for the greater good of mankind. He was keen to keep in touch and see how I progressed so we exchanged e-mails. A less likely encounter in hospital I couldn’t imagine, who knows what it will lead to. I have to say that I think he was also interested in the fact that number 2 son had studied the same subject (Chemistry) as him at the same University.
The consultant popped in briefly to say that we were still on track for going home next week and that the vomiting was probably due to a new antifungal drug I’d had. More intravenous fluids and keep drinking as regards the headache! Today’s neutrophils were 0.4 so good news there!
Ready for bed and no more vomiting so it must have been the antifungal drug which has now been stopped. Lucky me I get to sleep all night attached to the ivac machine. They have put up a drip of sodium chloride for hydration.
My head is now quite itchy but the hair is falling out only a few strands at a time. It looks to me that I may miss out on the Kojak look.
December 20th DAY17th
Well things took a different turn during the obs at 2.00am when it turned out that I had a temperature of 39o This meant a doctor was called, antibiotics were given, a quick examination and questions about how I was feeling. Bloods were taken for cultures to be grown to try and track down the cause. At least this time had been less dramatic than last – no rigors and no vomiting.
The day drifted past, the shadow of the headache was still there though the docs said that might have been due to medication which had now been stopped but that there would still be a residue of it in my system. I also had very little appetite and felt a bit nauseous.
Although I’d felt I had slept pretty well despite the disturbances through the night, all I wanted to do was snooze, not even having enough energy to read for any length of time. I felt really cold and put on my sweatshirt and got under the top blanket. I’d also got painful sciatica, down into both legs and was glad of the pain relief. The day just seemed to slip by. Temperatures were a bit raised 37o + and 38o
I rang Nick to say not to visit. He had plenty to do without driving all the way here to watch me snoozing. Sitting up and providing animated conversation would have been a bit of a challenge for me.
Son number 3 rang to say he had arrived home so it will be great to see him tomorrow.
I’m not sure how the events of the last twenty four hours will affect the discharge time – just a case of wait and see I suppose.
December 21st DAY18
Woke up feeling rough. Had had another high temp in the middle of the night and once I was awake the headache set in again. I knew from the looks on the faces of the domestic and the housekeeper that I wasn’t looking my sprightliest self. They moved quietly round me and didn’t expect too much conversation.
More blood cultures were taken and an MSU (midstream urine sample) for more tests. I asked if I could have paracetamol and codeine for the headache but was told that codeine has been scrubbed out on my chart and it would just have to be paracetamol. The docs thought that the codeine was possibly contributing towards the headache so had decided not to include it. So paracetamol it was and as expected it did not get rid of the headache. It felt as if I was in the middle of one long, long hangover with a bit of seasickness thrown in.
Two friends from work came to visit and that lifted my spirits somewhat. It was a nice change from staring at the wall feeling sorry for myself. During their visit the consultant appeared and said they were still trying to track down the cause of the high temperatures and that until I was well again my discharge would have to be delayed. I was glad to hear this as the thought of being at home and feeling so wretched was worse than being here where an answer might be found. I would be having a CT scan the next day just to check out the head and sinuses to see if a cause for the headaches could be identified. The good news was that the bone marrow was continuing to engraft and thrive with a neutrophil count of 0.6.
Nick and son number 3 came to visit in the late afternoon. It was good to see him again after such a long time and be able to pass on congratulations on the new job. We discussed plans for the future with accommodation in London. He is considering going into a flat share with C, the dancer, who lives in the cupboard. Maybe he could just come out of the cupboard and inhabit the other room!
Christmas preparations have begun with a Christmas tree bought – a Nordman at that and lists made for food. Discussions about turkeys are still ongoing – let’s hope they come to a conclusion before the 25th.
We had our standard half dozen games of cards, the strategic play now made more interesting with three players and then the boys set off home into the softly falling snow.
I thought about updating the blog but decided it was a task too far and took the easier option of procrastination.
December 22nd DAY19
Slept not too badly considering that there was an extra disturbance to put a drip up – somewhere around midnight. It turned out that one of the docs had been in bed when he remembered that I should have been put on fluids prior to having my CT scan as my kidney function wasn’t great to start with and the scan with its tracing fluid wouldn’t help. He therefore phoned up the ward and put the fluids in motion. My night time temperature was raised but not to the previous levels.
As soon as I was vertical in the morning the headache started again. Movement was slow especially as I wanted to have a shower and wash my hair and this would mean waiting for a dressing to be applied to the line.
In the meantime the doctor arrived, took note of the relevant minutiae of my condition, reiterated that I was to have a scan and that he would return later to perform a fundoscopy – a look at the back of my eyes with an instrument to see if there was any damage. Because I had tested positive for toxoplasmosis when I had gone into hospital to have the ATG treatment, there was a chance that it might resurface and damage to the back of the eye was one indicator of its presence. Toxoplasmosis and a compromised immune system are NOT a good mix. We also had a discussion re codeine and an agreement was reached that I could have it for pain relief.
Eventually I was able to have the shower with the dressing covering my bungs and the ivac machine line running round the side of the curtain. I proceeded to wash my hair and by the end of the process had collected quite a nest of hair which had come out. My hair was definitely thinner but there was still plenty of it.
I was just settling back onto the bed when three friends arrived. They had come up by train and we had a good long chat. One of them insisted on going to see what had happened to the codeine I’d been promised more than an hour previously and within half an hour or so the headache had disappeared and I began to move up a notch towards feeling human again. Their visit was curtailed by me being collected for the CT scan so another interesting journey through the nether regions of the hospital.
I had a cannula inserted in my arm for the tracing fluid to be put through to clarify the scan and I was then mechanically slid underneath the doughnut with its rotating, whirring rings. It’s a pity you don’t get to see the pictures created. Probably if you lived in France you’d get them in an envelope to take home with you to impress your friends with. On the way back to the ward, being whirled along in my wheelchair, wearing my mask of course, we passed an open door and I got the full benefit of the icy temperatures which I’d heard about on the radio.
I was certainly beginning to feel better than yesterday and the headache stayed suppressed for most of the afternoon and evening .However, what did come to the fore was a feeling of nausea, somewhere around the back of my throat, regular wafts of queasiness conspired to spoil my day. My mouth tasted metallic and put me off enjoying my food.
I found enough energy to update my blog and have a chat with a friend on the phone but that was as far as my improved wellbeing took me – time for a lie down and snooze before the vile medication makes an appearance at 9.0’clock
The medicines did make an appearance after 9pm and I had the usual business of looking at them for a few minutes before forcing them down with some water. I think they stayed down for a full three minutes before making a grand reappearance along with everything else that was in my stomach – a few peas showed up but no carrots.
At least that was an end to the queasiness and I settled to a reasonable sleep.
December23rd DAY20
On rising felt an urgent need to throw up again though a lot less volume this time. Every visit to the loo was accompanied of course by diarrhoea.
I sat and looked for a long time at the box of Rice Krispies and the half full tub of morning tablets but just couldn’t bring myself to risk it.
The doc was in early telling tales of atrocious black ice and total strangers holding hands as they tried to remain upright. Lots of people had phoned in unable to make their 8 o’clock shift and there were car and bus crashes everywhere in the residential roads surrounding the hospital. The pavements were impossible to walk on and the roads not much better especially as most of the vehicles were barely in control. Most of the staff who had walked in seemed to have fallen at least once.
Apparently the tests so far have not revealed any infection that they can put a name to. I was still having raised but not very high temperatures. The doc said that it sounded like a virus and viruses can display a variety of different symptoms. A stool sample would be required and the diarrhoea would have to be retained to be measured.
I asked the doc about the best course of action and he suggested I have an anti-sickness drug (metaclopramide) into my line before taking the tablets. This was all done but the mixture stayed down for less than a minute so I decided to forgo the Rice Krispies. The good news was that for the first time in 6 days I had no headache.
I had a shower with the ivac machine attached running the vancomycin (antibiotic) I was now on 3 atibiotics – tazocinn and azithromycin being the others. As Azithromycin was the probable cause last year of my hearing loss and tinnitus I need to let the docs know. The bed was changed and I lay down waiting for the next call to the toilet. I was thirsty but dared not drink and lay fantasising about eating an orange – ah the juicy sweetness of it.
A nurse popped in to ask whether I wanted a visit from the Chaplaincy on Christmas Day so I’d begun to get the idea I might still be around then.
When the lunch (soup) and lunchtime tablets came I was very thirsty and decided to try a can of ginger beer which I’d bought months ago as recommended for its ant-sickness qualities. Straight from the fridge it tasted divine and I sipped it slowly and had a few spoonfuls of thick creamy soup. It was all good for about 5 minutes before the rush to the toilet. Another retreat to the bed with not enough get-up-and-go to read but I did listen to the Archers.
Nick and son number 3 arrived with more cards to open, and a few more bits and bobs. While our technical son got some of my lost emails grabbed back from the ether, I had a spectacular S & D event in the toilet – I’ll spare you the details.
The boys were on restricted time as the month long “free” ticket for the car park costing £40 was about to run out and they had some Christmas shopping to do. However there was time for a dictation of How to Cook a Christmas Dinner. Son number 3 had taken on this task as he had (based on the last 24hrs of meals) already categorised Dad as “not a natural chef” Nick dozed and nodded when I asked him if he was taking it all in and did he know the tins I meant?. There was not enough time for the finer details; they would have to be added tomorrow. They left and I settled into more snoozing.
When the evening meal arrived –all day breakfast – sausage, beans, omelette and 2 rostis, I thought “No way” but part of me was a bit hungry. As usual I looked at it for a while and when the nurse appeared I said I didn’t think I could risk it. She offered me a different anti-sickness medication through the line so I took it. Of course by the time I’d let it get into the system the food was pretty cold but I did attempt a rosti and some beans along with some sparkling water. 2 and half hours later it had all stayed down – breakthrough!
The specialist BMT nurse popped by, surprised at how things had taken a turn, but not really surprised as my initial discharge dates were very early. She said that I would be in for a few more days so bang goes guzzling the Quality Street in front of a roaring fire on Christmas day while watching the little elves get on with the cooking.
All in all I wasn’t feeling too bad by the end of the day – maybe just another couple of toilet visits...
December 24th DAY 21
Not a very good night’s sleep with a few diarrhoea episodes before midnight – all to be collected of course by the nurses to check colour, consistency, quantity etc
By the time 2.00am arrived I hadn’t really slept and the headache had begun again – like a too tight helmet clamped on my head. When the vancomycin was put up I asked for some pain relief and began to settle down a bit more. I had the usual bloods taken at 6.00am and dropped off to sleep to be woken with a start when my free hour of morning television switched itself on at 8.00am. All exciting Christmassy stuff of course linking expats in Australia and soldiers in Afghanistan with family back home. I did think it was a bit cruel to show a three year old a video of her mummy on duty in Hellmand Province. I don’t know who it was supposed to benefit as they both ended up in tears. Australia on the other hand did look like a good Christmas alternative as compared with the icy traffic chaos of this country. Outside my window it was back to rain and higher temperatures.
Felt a bit better today and was never actually sick. Having found an anti-emetic that works I’m sticking with it.
Got showered and for about five minutes considered a bit of exercise before deciding against it. I had some pain relief for the returning headache and had an early visit from the doc who said that the consultant had said that there was a good chance of me going home for a few hours on Christmas day. Great! It would have to be worked round my antibiotics but that could be arranged. Confirmation and details would come with the consultant’s round in the afternoon.
I had a visit from a volunteer from the Chaplaincy and we had a long chat about men and Christmas (It was a woman volunteer) before closing with a prayer.
I phoned home with the joyful news and announced it on Facebook when I at last found some time to catch up with some correspondence. It really lifted my spirits and I began to look forward to turkey dinner and the log fire and a few games and banter with the boys. The only snag was that number 2 son was returning home with the tail end of a cold – he might have to be despatched to his girlfriend’s family for the day – a bit tricky as he was also in the frame for main chef de dindon. I was sure we could negotiate something.
The main part of the day passed with the usual bed making, room cleaning etc and I had a short snooze. When I woke to lunch I was looking forward to the soup I’d ordered but it was rather too salty so only had a couple of mouthfuls and had an apple and the orange I'd craved yesterday. I listened to part of the service of lessons and carols from Kings College. It was strange to have been exposed to so little of the Christmas story this year. Usually at school of course it has been the backbone of work and Art for the past month.
Eventually the consultant arrived but with the disappointing news that I was not going out at all on Christmas Day. Apparently the reasons were that I’d had a temp of 37.5o in the middle of the night, I still had diarrhoea, my home was a long way away and my son had a cold. When I said that he could be despatched elsewhere, the consultant said that he had already been touching door handles, work surfaces etc.
So all change. I might be discharged in a few days time after the antibiotics were completed as long as my temperature remained stable between now and then. It might also mean the line coming out as a point of infection – I certainly didn’t want that!
I surprised myself with taking the news very well, possibly because the joyful news of going home had been in my head for such a short time.
Nick was disappointed too, I think also because he’d put in special tidying up efforts for my return. When he and son number 3 came up for visiting they brought some Christmas decorations and so added a few festive details to the room. We had our final cooking discussions, flipping in and out of metric and imperial measures, passed on a stuffing recipe to a nurse doing obs and squeezed in a few games of cards before the boys returned home.
Son number 2 had of course not been allowed to visit because of the cold and was at home preparing the meal. It turned out that he had had the double swine flu and seasonal flu jabs but very recently so immunity had not had enough time to build up and in the meantime he had this cold.
As the boys were leaving, Nick and I pondered on the thought that in 35 years of marriage we had never been apart on Christmas Eve ! What was also significantly different was that by Christmas Eve I am usually absolutely shattered with still a dozen tasks to complete but tonight I was just my usual 10 o’clock self. Every cloud......
ecember 25th DAY22
Father Christmas came early to ward C6. When the bloods were being taken around half past 6, a present and card were dropped off by the nurse. The present which later turned out to be a neat make-up bag full of toiletries was wrapped and paid for by the staff! – a very nice touch.
I’d had a good night’s sleep and woke up feeling quite good. The sickness had retreated into the background apart from a mild feeling of nausea from time to time but the diarrhoea was still around.
Next came the domestic wearing a Santa hat and so the morning progressed with “Merry Christmas!” from all the staff who came in. There were lots of text messages and a few calls from friends including a call from number 1 son who had eventually reached his home, on leave, just before midnight.
It seemed strange to be on my own on Christmas morning when I’m usually rushing around getting food organised and urging youngsters to get up for church.
The doctor’s round was fairly brief; there was talk of the line possibly coming out as it was thought to be the likely cause of the infection. I wasn’t too pleased to hear that as I’m fairly sure I have several months of very regular blood checks to go as well as the odd treatment or transfusion – all much better with a Hickman line. I was to have a new antibiotic to treat the diarrhoea and also required 2 units of blood as my haemoglobin was 7.3. I was surprised they had let it get this low as they usually transfuse if it falls below 9. Perhaps they were hoping for the level to go up spontaneously. Again I felt slightly frustrated that they do not tell me what my daily levels are. When I have asked, they have said they will find out as the information is not in my file which is kept in the airlock but is either in other notes at the nurse’s station or on the computer. Of course they go off but rarely bring me back the information.
I phoned home to see how turkey preparations were going to find that things were pretty laid back in that department. Nick was doing some rushing around tidying up before gathering his brother and number3 son to come to the hospital. Number 2 son with his cold, was to undertake turkey duty on his own. He did call a couple of times to clarify instructions left by number 3 son who had taken notes from me. – a bit of Chinese whispers had crept in and I also just at the last minute prevented him putting the turkey in my favourite BAKING tin! To be fair he thought it didn’t seem right himself.
When they arrived there was a great opening of (my) presents and general chat, a few photographs taken and then a few games of cards. I had wanted them to bring up the game Articulate but this got left behind, whether by error or design I was not sure.
During their visit my “Christmas Dinner” arrived. There had been 2 choices; a very tasty sounding vegetarian pasta dish which the hostess told me I wasn’t allowed and a turkey dinner. Apparently the nurse in charge had said that no one on this ward was allowed the pasta option. I’m guessing it didn’t fit in with a neutropenic diet but the ingredients looked fine to me. The turkey dinner was reminiscent of a school dinners Christmas meal – the turkey being cut from a round turkey joint with a couple of cocktail sausages and stuffing balls. To my great surprise however the carrots were al dente and the 3 sprouts pretty near perfect! I think the repetitive nature of the hospital food is getting to me as I found myself fantasising about hot vinegary chips which I never ordinarily eat. Perhaps now I have a greater understanding of why there is a Burger King outlet in the hospital building.
After the boys departed back home, I answered a few texts and made a couple of calls. The bloods arrived and I had a lie down but didn’t drift off.
Tea arrived in the form of sandwiches, crisps and fruit etc and after that I watched a Gavin and Stacey DVD I’d been given for my Christmas.
When I called home to see how the meal had gone (very well) I found out that the presents hadn’t yet been opened so we organised a Skype session and I was able to get involved to a certain extent in the atmosphere that hitherto had been missing. It made quite a difference to the day because by the afternoon there were far less staff in and out and the day had started to stretch out.
After our Skype session I watched another couple episodes of Gavin and Stacey then did a blog update during which I had my tazocin – the antibiotic which tastes in the mouth as it is being pushed into the line. It has a particularly unpleasant taste and I shall be very pleased when it is finished. Next the vancomycin was put up and will finish somewhere around midnight and then the 2 o’clock obs etc etc A very different Christmas Day and quite passable but I think I prefer the normal one with all its hustle and bustle.
I tidied things away ready for bed as it was getting late, a quick trip to the loo and then bed. Not to be. There was still a good hour of thinking that was the last diarrhoea bout....but not quite –ah the joys of drapolene.
December26th DAY23
Came to with the television switching on at 8am so a good night’s sleep. Felt a bit groggy and had some pain across my sinuses – I was sure half of this had to do with the medication.
Somehow or other I had managed to miss out on breakfast but when the lad came for my lunch request he kindly got me some cereal and made me some toast.
My hair had decided to stick up on one side of my head while remaining slicked down on the other so I washed it in the shower and once more became covered in hair which had come out. It did look and feel much better though.
There was still a feeling of life happening somewhere else with staff different from the usual, partly due to it being Boxing Day, partly due to it being the weekend. Either way staff seemed to be more absent than normal.
When the doctors came – quite late because they were waiting for my vancomycin level (turned out to be a bit high) they told me how very well I was doing which bucked me up a bit. My neutrophils were 1.9! I had to get them to repeat that as I expected that I was still under 1.0 – now I was nearly normal! My platelets were 101 and when I queried the low haemoglobin which meant I’d had to have 2 units of blood yesterday they said that that might be the last transfusion I would need! Not only that, but my line is safe for the moment as my infection indicator is declining. Woop woop! Good news. If my temperature stays below 37.2 o then I may be discharged around the middle of next week. From past experience I realise that anything can happen but to be given a discharge date to hang my hopes on does help.

I had the vancomycin put up but because the first dose was late it meant that the second one, twelve hours later, would be put up in the small hours.
Two very good friends called in to see me on their way home from a family visit and brightened up my day. The husband plays piano exceptionally well and as they couldn’t bring in a piano, they’d brought in an i-phone with a video of him playing a Christmas tune for me!
Having had a visit I gave Nick the night off. He had been catering manager at home with number 1 son and wife visiting for the day and it would have meant him setting out on the 3 hour round trip at around 6.30pm. You cannot be in two places at one time!
This was the first day for a while that I’d had much of an appetite and after only a bowl of soup at lunchtime I was ready for the Cumberland sausage meal which I had ordered for the evening meal. The time for the meal was a little variable, falling between 5.30pm and 6.15pm. When nothing had arrived by 6.45pm I rang for a nurse just to check that I hadn’t missed out. No the trolley was late but was on its way. A couple of minutes later the hostess put her head round the door to say she had some sandwiches, crisps and fruit. When I asked after my Cumberland sausage it turned out there had been a mix-up. The lad who had offered me a hot meal earlier in the day had been wrong. If I’d wanted a hot meal I should have ordered it for lunch as the Boxing Day system was just sandwiches at night. As you might imagine, I was none too pleased especially when I thought of the lovely food being consumed at home!
The rest of the evening continued peacefully with a bit of reading and radio and I got into bed reasonably early. The nurse who brought my medication kindly set everything up for the vancomycin at 1.00am so I would have minimal disturbance.
December 27th DAY24
Woke disappointingly with a pain across my sinuses but was readily given pain relief. I’d had no raised temperatures in the night so felt good about that. The sinus ache disappeared within half an hour and I felt pretty good relative to other days. The diarrhoea was still present but seemed on the decline.
The doctor was of the same opinion as yesterday that discharge next week might be on the cards – just keep that temperature down. All other obs seemed fine.
The thought of exercise did cross my mind but in the end I didn’t get round to doing any.
I read a little of the books I’d received for Christmas and checked a few e-mails but when I tried to send replies they wouldn’t go – my server wouldn’t let me send them. More frustration. I also listened to the Archers omnibus edition which makes a good deal better sense than the fragmented daily episodes I sometimes hear and sometimes miss at home. At the same time I took up my knitting again and found the combination very pleasant and relaxing.
More vancomycin in the early afternoon and the tazocin which I can taste (unpleasant) as it is pushed into the line.
I had a bit of a treat in the afternoon with 5 visitors. Number1 son and his wife had driven 3 hrs to see me as well as Nick, number 3 son and my brother-in-law. Number 2 son was still off limits and because of this has changed his plans and has gone to his girlfriend’s. I’m glad I managed to secure a promise from him to come home at Easter before he left.
After a bit of a catch up we settled to the inevitable games of cards with a bit of “discussion” on rule variations but we settled on hospital rules and continued while number 3 son tried to sort out the e-mail problem as well as train me up in the use of the ipod shuffle I’d had for Christmas – now with some music loaded.
During the card game my evening meal of chicken tikka masala arrived. Shortly after finishing it the nurse came to take the obs. I was horrified to see that my temperature was 37.4o. We had another go taking an armpit temperature this time and it showed 36.5o –that was better. All the talk and competitive playing had also upset my blood pressure which was 185/70 though it did improve a bit on a second reading when everyone was made to stop talking and let me concentrate on being calm! Hopefully my 10.o’clock obs would be less controversial. As it was, I’d shown a raised temperature in the early afternoon but I’d just had a drink of some rather “hot” ginger beer! A second, improved temperature was taken then too.
Eventually they went their different ways and I spent some time in the toilet – the diarrhoea was still definitely there!. I had also decided to try eating today without asking for ondansetron -an anti-sickness drug taken intravenously. I rather regretted that as following my evening meal I was feeling rather nauseous.
I did a little more knitting, worked on the blog and had a play with the ipod shuffle – a pity the earplugs don’t fit in my tiny ears!
December 28th DAY25
I had a bit of a disturbed night with trips to the toilet. Somewhere around 3.30am I felt I might be sick as well at any second. Thankfully I was offered ondansetron as an anti-sickness drug which worked wonderfully well. Somehow or other the night sister and I laughed and chatted probably for almost an hour. Her hobby is mountain biking and she and her partner go up to Scotland, to the area I come from. Apart from that connection she is always interested in people and ready to laugh. She probably doesn’t quite realise how uplifting her company is for the patients.
She also let me lie in late because of the disruption in the middle of the night so bloods weren’t taken till 8.o’clock!
After breakfast the doctor came round and had a quick check. She reiterated that the antibiotics would be stopped and that I would be observed for 24hours, particularly with regard to temperature. At the end of this time a plan would be made!
The diarrhoea continued as did the metallic taste in the mouth but as the day progressed things seemed to be improving. I snoozed the morning away making up for the night before and was woken by lunch arriving.
I was feeling sufficiently switched on in the afternoon that I thought I’d give the Observer crossword a go and had managed 8 or so clues before a lady with a dog collar appeared at the door and asked if I would like a visit. I said “Why not?” and then ensued a really interesting chat. It transpired that she had taken some time out from her ministry to do a foundation year at Art College, followed by a course in glass at Swansea. We had a great time discussing Art and she gave me some pointers for marketing the little boxes which I make from watercolour paper and then paint. In return I gave her some ideas for the commission she has been given to create a stained glass structure in a school chapel. At the end we both agreed that we had had an “out of hospital” experience, getting mentally involved in an area we both loved.
My tongue still had a metallic taste but when the evening meal came I ate the lot – for the first time in quite a while. That had to be a good sign.
Nick and son number 3 appeared and they started gathering up some of my chattels for the predicted return home. We had the statutory games of cards and the boys went off home.
So a day in which not a great deal happened but the temperature stayed down and there were signs of improvement all round.
December29th DAY26
After another broken night with toilet visits it was just another day in hospital. The usual routine - I did feel that I had enough energy to do some exercises so had quarter of an hour on the bike – the fly and I – it still hadn’t moved. I added a few more exercises in but not yet the full complement
The doctor popped in for a quick check and mentioned that there was a chance of getting out for the New Year. They would look at my blood results when they came through and maybe know more then.
I felt pretty good and so spent the morning preparing watercolour paper for painting in the afternoon.
Early in the afternoon the doctors appeared and said that I could go home for two nights! I could go home when my husband came to visit in the evening. Earlier in the day we had decided that Nick would in fact not come in to visit because he was at work and was very busy. However I quickly said that I was sure that could be changed.
The deal was that I would go off for these 2 nights and one day, armed with lots of medication and that I would return to the hospital by 9.00am on the 31st. I would have bloods taken as usual and spend the day in my room until the consultant’s round in the afternoon. If everything was fine then I would be formally discharged.
Although I had pretty much expected to go home in the next few days around New Year, it was a great shock to be told I go in just a few hours time.
I did in fact do some painting in the afternoon and cancelled my evening hospital meal with a view to having something more exciting on the outside. As usual the tablets etc took a while to come up from pharmacy so Nick and I had packed up as much as we could carry and I had changed into street clothes by the time they arrived.
I had to wear a mask to walk through the hospital then we headed off home in the cold damp weather. After deliberating about lots of possible meals we decided upon fish and chips. The nurse had told me that this was the only take-away meal which I could have as the food was cooked fresh at a very high temperature. Although I was no longer neutropenic I was still to maintain a neutropenic diet as it was still very early days. I got the impression that the doctors don’t really relax until the 100days post transplant is reached.
The fish and chips tasted divine and although I did not have a large portion I managed to eat all I had and have a yoghurt afterwards.
When I was in hospital for four and a half weeks having my ATG I was warned that going home could be an emotional experience and that I could expect to cry on entering the house. I didn’t then and I didn’t now. It just seemed like being back after a holiday without the mound of post! It was great to arrive home to a log fire and the lit Christmas tree and of course the television was a great novelty too. It was the first time I had seen the festive jingles for the television networks. I’d also enjoyed looking at all the lit Christmas trees on the way home.
After the meal I must have spent a good hour sorting and checking all the drugs and portioning them into little pots for the duration of my home stay aided by number 3 son.
And so to bed. Apart from a toilet trip in the middle of the night, I slept very well even if I did have a dream about being lost in an airport, my hair turning white and falling out leaving me with a bald patch. In reality my hair has thinned a bit (no bad thing since my hair was so very thick) and I am now almost certain that I will not be bald. Once I got back into bed I slept till 10.30am!
December 30th DAY27
Woke late and had a shower – ah the joys of power showering! and had a leisurely breakfast. I think my exercising must have helped in hospital as I had no problem with running up and down the stairs. I had set myself some realistic goals and pottered about putting them into action; setting the fire; making some homemade butternut squash soup and did a little bit of vacuuming. Nick had done very well considering that he had had no idea when he had set out for work yesterday that I would be coming home!
In the afternoon we set off to have a look at the sea and went for a twenty minute level walk. Good uplifting stuff particularly when I didn’t feel worn out by it. I was entranced by the birds in the garden and around the cliffs and realised that in the five and a half weeks I had been in hospital I could not remember having seen one bird!
It seemed that about every 5 minutes I was having to take more tablets but that was how it felt in the hospital anyway. I spent the evening catching up with the blog and watching television then got things ready for my return to hospital just in case they kept me in and headed for bed – it’s an early start in the morning – we have to leave at 7.30am at the latest!
December 31st DAY 28
Getting up was a bit of a struggle but the roads were reasonably empty and we arrived at the hospital with 5 minutes to spare. However it wasn’t till half an hour later that the bloods were taken. Nick stayed around for the first hour – he had paid the one hour minimum fee for the car parking so it was only at that time that he set off into the city centre to do a bit of browsing and shopping including a voluntary trip into Ikea on his own!
The doctor appeared at around 10.30am and asked how the home visit had gone. She explained that assuming there were no problems with the blood results that I could be fully discharged in the afternoon. Great news! Because of the fridge and the air system there was always a noise in the isolation room so it was only on my home visit that I became aware of mild tinnitus and hearing loss. I mentioned this to the doctor and said that I had had the same symptoms when I had previously taken azithromycin. It turned out that I had been on it for 8 days (though a previous doctor had denied this!). However, it was one of the drugs to be stopped so hopefully the symptoms would disappear.
It only remained now to put in the rest of the day. I finished a book, had a bit of a snooze and added a bit to the crossword.
The old routine went on around me; obs, tablets, lunch and supper choices taken and fresh jugs of water produced. It seemed odd to be in the room in outdoor clothes but by this time I was pretty certain that I was going home. There were still all the cards blu-tacked to the wall or pinned to the notice board. There was a minimal amount of “hospital” clothes in the cupboard and some wash kit in the shower room. I thought it would be a little too presumptuous to start packing so left them as they were.
Lunch arrived and time dragged on. The ward round was at 3pm and I was told that I could indeed go home. There would be a visit first of all from the transplant nurse who would give me details about follow-up treatment and my medication would be written up and tablets and medicines gathered for me to take home. There were a few changes to the tablets I had been issued with on the Tuesday.
During the day I had felt nauseous and had asked for an anti-sickness medication. The diarrhoea was still present.
Nick appeared again after a rather unsuccessful shopping trip and we resumed our card playing to take up the time. The transplant nurse arrived, explaining the few changes in the drugs and also setting out the routine of clinic visits to come. I would be expected to attend clinics on a Monday and Thursday for a few weeks at hospital S – a long way to go for probably quite short appointments and this would mean some inconvenience as I would not be allowed to drive for a couple of weeks and probably for a little longer as regarded the distance to hospital S. It would therefore of necessity involve someone else.
Eventually I would come under supportive care of my local hospital. I was to take things easy and avoid crowded places like supermarkets at busy times and the cinema. I would need to follow a neutropenic diet even though my neutrophils were higher than they had been at any time in the last year and a half. I would of course not be able to drink any alcohol for a year because of my medication. Well, plenty of don’ts then!
Just after 5.30pm an apologetic nurse put her head round the door and told us that pharmacy was now closed and the doctors hadn’t put their requests in on time. They were therefore short of some of the tablets! There was some talk about me having to go to my GP and get a prescription there. However it didn’t come to that – with a bit of begging, borrowing and using drugs I already had at home, it could be managed and we began to fill up the bags Nick had brought with him, with the rest of my belongings. The drugs on their own filled a carrier bag.
Eventually, sometime around 6.15 pm we left the isolation room lots of goodbyes to the staff I’d got to know over the past five and a half weeks. If everything went well I wouldn’t be seeing them again.
It was 2o when we left the hospital, even more icy with short hair but at least I still had hair! All in all I think I’ll go down in the annals of the ward as a great success with relatively few side effects, a successful engraftment and an early release.
On reaching home around 8pm I found a beautiful bouquet of flowers sent by a friend in Scotland . I was quite taken aback, not able to understand how I could deserve these. I certainly felt I’d got off lightly in the grand scheme of things – long may it continue.
It was a strange New Year’s Eve. Son number 3 and his friend were upstairs making outfits for a New Year’s Eve party. The theme was Super Heroes and Villains. Skeletor and Scarecrow were being concocted out of cardboard and fabric. By 9pm they were ready to go.
We watched a film and then on the lead up to midnight Skyped some friends with whom we usually spend New Year. We sang a joint version of Auld Lang Syne, gloriously out of tune and toasted the New Year. As usual we went out into the street and as usual there was no one else but us and a few distant fireworks.
And so the year turned, 2010 had begun.