Good periods, and bad periods

• I have en e-coli infection like last time. My blood pressure stabilised quite quickly.I have been decatheterized, which is good. They keep track of my fluid I input (drink) and output (wee). I need to make sure the fluid balance is neutral more or less.
  
• My diarrhoea is sort of bad, but variable. At the moment I go each time I wee, which since I am not catheterised is not really inconvenient.
  
• My temperature is the problem. I cannot shake the fever. So I feel bad most of the time. Taking paracetamol brings it down temporarily,but also make me overheat, which makes sleep difficult.
  
• I went for an ultrasound scan of my arm. I was lucky to get the consultant, and he checked all the major nerves. He thinks it might be an inflamed nerve, but treatment seems To be just wait anyway.
  

I have good and bad periods according to my temperature. As time goes on,
My counts should recover which will also help beat the infection.

My bad leg from the first infection is behaving itself so far.


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Still ill

Too tired to blog.
Later!


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Back in the land of the living

Let me try and fill you in what has been happening since Sunday morning ...

Sunday

As I explained , I awoke feeling lousy in the hotel, having slept OK. Then, I got a shiver, which is a sure sign of a raised temperature, and sure enough it was elevated, although not by so much. I rang Ambicare and they told me to come across immediately. I packed my rucksack, with the new iPad in it, and Rose cleared out the rest of the room.

When we met up in Ambicare, Rose said "I even brought the iPad".
"I thought I brought it myself in the rucksack" I said.
Lo and behold two iPads! So, it was not stolen after all, but merely misplaced. Goodness me I am not doing well eh! After the initial shock, it is actually quite funny, hilarious even. The police have been informed.

So, we now have one each, or perhaps we will sell one. Who knows!

My condition was deteriorating rapidly. I got bad riger again, and it took some time to bring it under control. They gave me two doses of antibiotics, and finally I calmed down and slept sort of. The porters arrived and took me over to the main hospital; there is a tunnel that connects the two buildings. After I was settled in, Rose left.

My blood pressure was crashing, so they infused quite a few bags of gelofusine, but my BP remained stubbornly low at 50/30. So they took the PICC line out, and kept pumping fluids. In the evening they decided to catheterise me (oh joy), so that they could monitor the fluids.

During the day I had diarrhoea, but just one off (so to speak), but at about 7pm it started in earnest, every hour or more regularly. With all the tubes, the catheter bag and so on, I could not make it to the bathroom in time, so the nurse set up a commode next to the bed. At this stage I was feeling pretty miserable.

Two things were markedly different this time from the last; my bad leg was fine, and I was not bloated with fluid. This latter is almost certainly because I had been eating much better, and my albumen level in my blood was much stronger when the infection struck.

Sunday night was terrible. Firstly, I had diarrhoea every hour, secondly, they were giving me red cells, fluids, trace elements, antibiotics and so on throughout the night. Then, the catheter is always a little temperamental when it first goes in (it leaked a bit), and of course they were taking observations every hour, or more.

The amazingly good news was that my BP stabilised at 90-odd/50-odd. This was fantastic news. The bad news was that I had had no more than 30 minutes of contiguous sleep, and I was very tired.

Monday

They kept fluids going in during the morning, and Rose arrived for a visit, but I was so tired I barely managed to keep my eyes open. In truth, I did not manage. Only the diarrhoea kept me on my toes! Rose left in the early afternoon, and although I was in no fit state to converse much with her, I really appreciated her being there.

My BP remained stable, returning to it's normal level, but my temperature was still fluctuating between high and normal. Most of the day passed in a haze, but my diarrhoea mysteriously went away in the evening, allowing me to get a couple of hours of sleep, in between the nurses going about their business.

During the night, after 1am, the nurse promised to leave me alone until 6am, and I got the best sleep so far. I thought I would be in good shape for Rose's visit today ...

Tuesday

... I was wrong. My sleep deficit was still not resolved, and I kept falling asleep. However, I was a little better than Monday. Once again, although I was not much company, it was lovely to have Rose here.

My general state is as follows: I am weak, but ambulatory, still catheterised though. My diarrhoea has not returned. My appetite is not great, but hospital food is not helping! My taste is holding up OK. I am not very swollen, but I have problem with my left arm. It is a bit swollen, because of the deep thrombosis I had there in January. These can take many months to resolve, and it's presence is making it harder for the fluids to dissipate. It is not terrible, but I have some bruise or muscle strain as well in the tricep that is making my arm weak.

They plan to de-catheterise me tomorrow morning, as early as possible. Later in the day, they plan to perform the final intrathecal that will complete this treatment cycle. Then, my blood counts should recover over the coming week, and I should be able to go home mid to late next week, for a couple of weeks.

After that, things are unclear. Originally I thought we would move ahead to the transplant, but there is some confusion over this. I asked my consultant to clarify, so I should find out on Friday.



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I am exhausted

No post today other than this. I will catch up with you when I am better.


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Infection again

I woke up feeling lousy, and took my temperature. It was 37.6, and I had a slight shiver. I rang ambicare and they told me to come in right away. The riger got worse, and they eventually stabilised it with antibiotics and IV pethedine. 

I have been admitted to the hospital, T16 bed 36. My blood pressure has crashed, so they are infusing that expanding stuff. If they can get my blood pressure up the PICC line might be able to stay, otherwise it will be removed later.

Thanks to Rose for clearing out my room and checking out for me.

I am hoping we caught this one earlier, and it will not be so bad as last time.

My iPad has been stolen

... and I feel like a horses ass! I went to Ambicare as usual, and left around 11:30. I had the iPad in my zipped-up rucksack on my shoulder, but when I got home it was not there.

I called Rose, who logged in to MobileMe.com and told me it was still in the vicinity. There were some policemen on the street (probably as backup for the march going on today), so I told them my dilemma. One of them took my phone, and Rose directed them using the web site. in the end, they came to the conclusion that it was in the hotel (yes, my hotel), and the police said there was not much they could do.

I filed a police report online, and I hope I will be able to claim on my insurance on Monday. But in the meantime, what to do? The only recourse is to buy another iPad. However, ipad2 only went on sale here yesterday, and nobody has them in stock. I thought I would be able to get a good deal on an iPad 1, but no. So I bought a replacement iPad 1, 3G but only 32gig this time. I never really needed 64. I walked all the way down Tottenham Court Road looking for the best deal, but ended up in PC World opposite the hotel! For my trouble I got a blister on my toe.

Rose brought her laptop in, and I upgraded the iTunes on it, then upgraded to iOS 4.3 on the new iPad, and then synchronised. I am more or less back where I was, just a couple of small apps and a book are missing, although you would think I could download these for free.

We wanted to wipe my iPad using MobileMe, but Rose's browser did not work on the site, so she called Yvonne who did the business, so many thanks Yvonne. I hope that my email account has not been compromised, and I am not intending to change it until something happens to make me. The thief only had the iPad for 20 minutes before we wiped it. Apart from the email account I don't think there was anything serious on it.

I intend to take more care of this one than the last one.

Health wise, I am still feeling OK. But I could do without this stress.


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Business as usual in Ambicare

Rose and I slept well, and breakfasted similarly. She left to beat the meter maids, and I went across to Ambicare.

My treatment was over quite rapidly, but I had to wait quite a long time for the doctors. I am getting jittery about being neutropenic, and I can imagine pains in my bad leg. I keep taking my temperature and so far it has not gone above 37. Like so many things, the mental side of this is becoming as trying as the physical side.

I have been in the hotel over three weeks now, and I am starting to long for home. But it seems that after my treatment finishes on Monday, I will have to stay here for about another ten days whilst my blood counts recover. It may be less, it depends on how well I do, and how bad an infection I get (if any). It is better than being in hospital, but I really wish this cycle was over.

Prof Kwaja, my consultant, was passing and said hello, so I quizzed him about next steps, and it seems there is some extra chemo cycle that I must do after this one and before the transplant. He was vague, but it means my treatment will extend longer than I had been thinking. When I know more I will share it with you.


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My "Desert Island Discs" - continued

Rose castigated me for not choosing a luxury and a book, as they do on the radio show, so this small post just completes this fascinating insight to my personality (well, maybe not so fascinating).

My book is Catch 22 by Joseph Heller. There are so many brilliant ideas I think I would never tire of it.

My luxury would be a bumper book of Times crosswords, and a large supply of writing implements.


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Dinner and a stroll in the West End

I slept really well last night, but even so I was tired when I got up, which was due to the fact that I had very low haemoglobin levels. It turned out to be 7.1, which is the lowest I can remember. My neutrophils are now 0.03 too, so the chemo is doing its stuff. Today, in addition to the chemo, I got two units of red cells in Ambicare, which has pepped me up no end! Half of the effect is psychological I am sure.

At about one, Yvonne arrived for a visit, sporting her new hairdo (as ever). We had a nice chat about her family situation, and my health. She had to leave too soon, but it was really nice to see her.

When my blood and chemo were done, I went back to the hotel for a kip, and then Rose arrived at 6:30 for dinner.

We decided to go back to Fish Works in Swallow Street, but we walked half the way there before getting a taxi (I wanted to avoid the tube because it would be too crowded). It is a bit chilly but still quite pleasant weather for walking. We arrived bang on time at 7:15 and had a great meal, this time avoiding the desert. We then walked back up Regent Street to Oxford Circus before hopping in a cab to get home. Regent Street is looking very spruce; it made me proud of our glorious capital city!


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Intrathecal

Rose and I slept pretty well, and she left after breakfast to the glorious spring day that was unfolding. Lucky Rose was playing golf (friendly, played rather well), whilst I was hoping to have my much delayed intrathecal, scheduled for 2pm.

My blood counts were all low, of most concern the platelets, which are supposed to be over 50 (normal is 150 or more). I had two bags of platelets, which took all morning, but my platelet count was still too low, so we ordered another bag. The happy confluence of platelets and a doctor to perform the procedure was looking increasingly unlikely. However, at about 5pm both arrived, and after 8 hours in Ambicare we finally did the deed. My doctor was unable to do the procedure, instead a Dutch doctor stepped in, and very good she was too; it all went very smoothly. It takes about 10 minutes to perform!

In the enforced lie-down afterwards I listened to Dark Side Of The Moon. I wobble in my choice but I will stick with Wish You Were Here.

I finally left Ambicare at 6:30 - a long day. It is amazing how tiring it is sitting around all day doing nothing!


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Walking the tightrope

Another easy day, with no chemo treatment. Pete came to visit, and kindly bought me lunch. We went to Drummond Street for a veggie Indian buffet. £6.95 for all you can eat, and really good food. I exercised restraint (sort of). Pete emailed later to say he had a bad bottom, but I have suffered no I'll effects (yet).

In the afternoon I had a kip (whilst Pete was at work / in the toilet - life is cruel eh), and Rose arrived in the evening. Last week Rose's team won a Texas scramble, but today she played in a medal and things did not go quite so well for her, despite five pars. We all have bad days!

We had dinner at Prezzo. It was crowded, which I try and avoid, but what the hell.

I feel like I am out in the middle of the tightrope. If I can just make it to the other side ...


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My "Desert Island Discs"

Desert Island Discs is a programme on BBC Radio 4 (the best talk radio in the world, by a huge margin), that has been running since forever. On it, various celebrities and luminaries from all walks of life are asked to name the eight pieces of music they would take if they were marooned on a desert island. It is presumed a suitable playing mechanism survives the shipwreck. During the program the guest is interviewed and asked to explain their choices. They also get to pick a book, and a luxury item. It is all supposed to provide an insight into the guest. Famously, one opera singer chose eight of her own recordings!

Since many of the choices are works such as Beethoven's 9th, it is a grey area whether one chooses albums or  individual songs (one could argue Beethoven's ninth is four songs for example), so I have compiled two lists. 

Note that these are not lists of what I think are the best songs or albums, just the ones I would take to the desert island. Please feel free to criticise, agree, pour scorn or congratulate; but remember, this is a moveable feast, and I reserve the right to change it arbitrarily.

Individual Songs

This is a very difficult list to make. All of the songs give me the "tingle factor"; that sensation when something really good happens in the music. They are presented in order of preference.

1. Bridge Over Troubled Water - Simon and Garfunkel - 1970

A fantastic performance and a fantastic song. It's been a companion forever, and never fails to give me a tingle in the final verse, even after a million listenings. Here is Art doing his thing in Central Park. Breathtaking!
Bridge Over Troubled Water

2. Money - Pink Floyd - 1973

I think this is the perfect rock song; thoughtful, intelligent lyrics, an unusual and yet unforgettable backing rhythm in 7/4 time, and the most perfectly constructed guitar break imaginable. The first link is the studio version, and the second link is them as old men playing recently at the Live8 concert.
Money
Money (Live8)

3. Black Dog - Led Zeppelin - 1971

A fantastic, complex, original and influential song that defines what is to come in the best sequence of songs in rock (on Led Zep IV). Not everyone's favourite Zep I am sure, but for me it sums up beautifully how they changed the game. No three chord tricks here!
Black Dog

4. Let It Be - The Beatles - 1970

A difficult choice, but I had to have a Beatles song. Although I often think "Across the Universe" is my favourite, this timeless melody ultimately wins it for me. Such a simple song, so beautifully performed. It will always remind me of Rose, who was/is a much bigger Beatles fan than me; she is my "Mother Mary".
Let It Be

5. Life On Mars - David Bowie - 1971

I found it hard to choose a Bowie album, but it was easy for me to choose this as his best single song. This is a recent performance showing the man could still sing!
Life On Mars

6. One - U2 - 1991

Bono could be quite poetic when he wanted, and he succeeds here in some style I think. I love the rolling rhythm of the song, as well as the metaphors in the lyrics. Elsewhere on "Achtung Baby" Bono writes the (in our house) immortal lines "I gave you everything you ever wanted; it wasn't what you wanted". It reminds me of our time in France in the early nineties, in Saint Wandrille, Normandy. According to Wikipedia, U2 have played this song at every gig since they first performed it. There are many, many videos on YouTube. This one is not bad.
One

7. Set The Fire To The Third Bar - Snow Patrol & Martha Wainwright - 2006

An obscure duet with beautiful lyrics and a haunting melody. It represents the most settled time of my life, where mostly Rose and I do what we like (luckily, I like to work!).
Set The Fire To The Third Bar

8. Diamonds Are Forever - Shirley Bassey / John Barry - 1971

I suppose this reveals the camp side of me, but who cares! When she sings "they lustre on" it is fantastic. It has to be the original recording of the film soundtrack, but this is also a great early performance of it on YouTube.
Diamonds Are Forever

Albums

This list is much easier to compile than individual songs! Compilation albums are of course banned! They are ordered by date, not preference. No 80's work made it, but "The Queen Is Dead" by The Smiths came close, and would be in the top ten.

1. Bridge Over Troubled Water - Simon and Garfunkel - 1970

I suspect this choice is neither surprising nor controversial, and needs little explanation or justification. It is marvellous in every respect.

2. Led Zeppelin IV - Led Zeppelin - 1971

This is included despite only half the album being outstanding. But side 1 (how quaint that sounds now) of this album is quite simply the greatest series of work in the entire rock canon. Black Dog is totally innovative and musically complex, followed by old fashioned three chord rock-and-roll, a folk song and the peerless Stairway to Heaven. 

3. The Rise and Fall of Ziggy Stardust and the Spiders from Mars - David Bowie - 1972

There has to be a Bowie, but which one? On balance, I think Ziggy wins, for its kitsch and cleverness, and because it has more classic songs. The other contenders were Hunky Dory and Aladdin Sane, but ultimately I think Ziggy defines Bowie best. I was 13 when this came out. All my friends were fans, some ridiculously so. My best friend was called Jonathon, and he first played me the album. At first, he did not have a record player at his house, and we went to his uncle's house to listen to it - but maybe that was a little earlier i.e. Hunky Dory. Still, it is a nice memory (later they got a really nice B&O system).

4. Wish You Were Here - Pink Floyd - 1975

I had to have some Floyd, and this just pips Dark Side. It reminds me of being 17, passing my driving test, and having a whale of a time at school, in what we called "the sixth form" in those days. I was lucky enough to see them perform this album on their Animals tour (my brother Les took me). The set was Animals, Wish You Were Here, with an encore of Money. What a gig!

5. Joan Armatrading - Joan Armatrading - 1976

Another unsurprising choice perhaps. Not only are the songs timeless and fantastic, but the band playing with her are amazing. And to top it all, the recording quality is outstanding. It is amazing that they were able in the 70's, using magnetic tape and vinyl, to produce a record of such high fidelity. For me, one of the best recordings of all time.

6. Dog Man Star - Suede - 1994

Suede are perhaps relatively obscure, but this album captures them at their peak, and very good they were. What makes the album stand out is the arrangements of the songs, which are also cleverly written (although not the same league as Led Zep IV). There is a good video on YouTube of them playing The Asphalt World (maybe other songs too, I have not looked). I keep coming back to this album time after time, testament to its quality and durability. I just have to include it.

7. The Bends - Radiohead - 1995

I came relatively late to Radiohead, starting with OK Computer, but I think this is their magnum opus. The melodies are fantastic, and the song structures a joy (as they are on OK). Although we have some of their later albums, for me they never managed to regain the heights of this one. There is no single standout song, but the ensemble, and the band's influence on the noughties, merits its inclusion in my list.

8. How To Save A Life - The Fray - 2005

The noughties make a surprise entry with The Fray. It is a great selection of songs with strong melodies whose appeal does not fade been with many listenings. An album I turn to when sifting through my iPod listings looking for something to listen to.

Introspection

... or naval gazing as one might less charitably put it. Since I am so time-rich and health-poor, I have been doing quite a lot of it. I say health-poor, but even that is more complicated! Yes, I have leukaemia, but right now, I don't feel unwell. I feel like I am walking a tightrope; at any instant an infection can strike and then anything can happen. When I was in the hospital in January, and I became neutropenic, they would not even let me leave my room; now I can wander around London as I choose! Harry jokingly said today "so what, they want you to get ill?", and when I said this to the nurses they just smiled and shrugged!

With all this time, I am not pondering the weighty issues challenging humanity, like the purpose and meaning of life, curing Malaria without resolving food shortages, is all life worth preserving, is my life worth all the time an money being spent preserving it (that's an easy one). No, I have been agonising over such topics as what my favourite music is, or why I find cryptic crosswords so fascinating, but not sudoku and all its millions of derivatives (that could be because I am rubbish at sudoku of course), or why I like to play bridge and backgammon on my iPad, but not so much chequers.

The hubris of blogging means that I must share these thoughts with you. Not necessarily because I believe you will care, but just because I can! Oh, another weighty issue - just because we can do a thing, should we do it? Was it right to make the atom bomb (I love that term, so Doctor Strangelove)? When should morality regulate science? Whose morality? Or is there such a thing as absolute morality?

Time for a few rubbers of bridge ...



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Another uneventful day

Today was another uneventful day, which is a good thing; every day I am healthy and neutropenic is a good day. My taste has not deteriorated from yesterday; another positive thing!

I have no treatment scheduled today, but I had hoped to get the delayed intrathecal. However, the doctors want to wait for all the coagulation tests they ordered last Thursday to be completed, to see if I have some inherent clotting disorder, or even some type of haemophilia. I have never had any trouble clotting before they ran these tests!!

Rose came to visit for the morning, and we did quite well with the crossword. She also found time to pop to heals to look for new furniture for our house, which is an interesting new project for us to consider (although I suspect we will do nothing until I am better).

Being neutropenic I like to avoid crowded restaurants. I found a chippy within easy walking distance, so I had fish and chips for dinner, and very good it was too.

The next week will be full of uncertainty, as infection can strike at any minute ...

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The chemo is biting

Today all my counts are down, approaching nothing, as we might expect after three weeks of chemo. One more week to go this cycle, except for the delayed intrathecal which will hopefully get done tomorrow. My taste feels like it has degraded a bit more, but still much better than this time in the first cycle. Obviously the chemo is finally affecting my wellbeing.

My weight has stabilised at 86 kilos, which I am very pleased with.

We had a leisurely breakfast, and Rose left shortly afterwards. I spent the morning In Ambicare, and had lunch at the Japanese cafe (not very good). I lazed away the afternoon sleeping, playing with the iPad and watching TV.

A pretty lazy day.

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Neutropenia

My neutrophils have dropped below 0.5 today, so I am mow neutropenic. However, I have decided to stay in the hotel until I feel I'll, or I get temperature spike (above 37.5). All the doctors and nurses tell me this is the best approach, and my night in hospital this week reinforced for me how much better it is in the hotel. I have the alarm if things go really pear-shaped!

I spent the morning in Ambicare, had lunch from the canteen and then returned to the hotel to watch the rugby. I wish I hadn't! What a shambles England were. To be fair, the Irish played really well, and finally found that spark they have been lacking all season. At the same time, England came off the rails. The scoreline is flattering to England.

In the afternoon Rose arrived, and we just went to Zeen for dinner. It was really good, although we ate far too much. We shared a bottle of Rioja; the first full bottle of wine we have shared this year!



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Laid-back Friday

I slept well last night, Rose less well I think. We went down early for breakfast and Rose left afterwards. I ambled over to Ambicare at nine.

My general health is pretty good, but my neutrophils have dropped to 0.81, 0.5 is neutropenic, so the time for admission to the hospital is approaching. I need to monitor my temperature closely, and avoid contact with germs as much as possible. Once again, if you planned to visit and you have a cold, please stay away.

There was some possibility that they might do the intrathecal today that failed on Wednesday, so in addition to the chemo I had a bag of platelets. However, when the doctors arrived later in the morning they decided to wait until the results of the coagulation tests they ordered yesterday. So I got away at lunchtime, and went to the Italian across the road for a bowl of pasta.

Back at the hotel, they had not done my room, so I waited down in the bar whilst they cleaned it, and met and chatted with a fellow Ambicare patient who has a rare lymphoma, that took months to diagnose after many wrong diagnoses.

Back in my room, I managed to sleep,through the Cheltenham Gold Cup!! It was a great race - I saw the replay of the finish. It was marvellous to see Denman and Kauto right there at the end!

The restaurant in the hotel is part of the taste card scheme and offers a 50% reduction, so I asked if this applies to a single person and it does, so ate dinner in the restaurant; with half price food it is quite reasonable! Last night I sipped some of Rose's wine, and it tasted fine, so I accompanied my dinner with a glass of Chardonnay, and enjoyed it. Next time Rose and I eat we will share a bottle I fancy :) - I might try a few other 50% deal restaurants as a singleton.

So now I am watching Red Nose Day on the BBC.




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Back in the hotel

A night in a hospital room reminds me how much better it is as an outpatient. It was such a tiring day yesterday I actually slept quite well. The room was above my original room on T13, so the Internet access was poor. When I am readmitted for longer this cycle, I hope to be in a better room.

I did not get away from the hospital until 10:20, and ran hotfoot to the hotel restaurant. Breakfast officially ends at 10, but they were really nice to me (they know me pretty well now), and I got a good breakfast :)

Today I feel better than yesterday. I got to Amibicare just before 11, and it was really busy. I had two units of blood, my chemo, and a clean PICC dressing, and got away at about 5. I spent some time reviewing my music collection to pick my 8 favourites. It is really hard!

Rose came to visit at 6:30 and we went out to Prezzo for pizza and pudding. They have changed their menu since last time, and more crucially changed
their taste card scheme from 50% to two-for-one, so next time we want Italian we will try somewhere else.

So now we're back in the hotel watching American Idol. We are behind the US so please don't post the result! It's a strong year but I miss Simon Cowell! Yes, I am a fan of the show, and proud of it!

I have downloaded a backgammon game that is pretty good, but you can't get over the feeling that it cheats, even though the author goes to great lengths to assure you it doesn't! So now I have three games; bridge, backgammon and chequers.

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Readmitted, for one night only

I write this post from a hospital bed on T16. I have been admitted for one night as a precautionary measure ...

Today was always going to be a busy day. The platelets needed for the intrathecal were a bit late as ever. After the first bag we took blood and the platelet count was not high enough so I had a second unit. Then the doctors told me my coagulation was still not right, and as a precaution they would give me FFP (plasma). This is 4 bags of drip feed. By now it was 1pm, and I told them that bit would never go through in time. However, they were determined to press ahead.

During the morning the ENT doctor came, looked and cauterised the problem vessel in my nose. So at least for the time being this problem is solved.

We put two bags of FFP up at once, but barely half of these were done when we hit the time limit." It's OK", said the doctors, we can do the intrathecal whilst the FFP is on. So, we tried the intrathecal ... and failed. It was also painful, unlike the previous three. The doctors took advice from the neurology registrar, and decided to admit me just in case I have a build up of blood around the spine, which can lead to complications.

It is not possible to say if the failure of the intrathecal was caused by the FFP being incomplete.

So, here I am! It is a real shame, because Rose was staying the night, and now she may as well go home. And she has been rushing around between the hotel, car park and hospital collecting things. As I write, she has very kindly popped to the Chinese for a takeaway. I am very grateful to Rose for being here, and holding my hand (literally). I love her very dearly, as you already know.

My head pain has been bad today as well, so it has been a very difficult day, the worst since I started in Ambicare.

I have no idea what will happen on the morning.

As a footnote, the nurses here in T16 are amazed that I was given platelets as a drip feed (with no pump) to a PICC line - they always use a pump here. I will feed this back to Ambicare next time I see them.


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A day recovering

Yesterday really took it out of me, and I resolved to spend today recovering, doing as little as possible. I have achieved this pretty successfully, which does not make for a great blog, but on the other hand means I am not so tired. I decided to have no visitors to enable further relaxing, although Harry kindly offered.

My nose was bleeding slightly when the doctors visited, and they asked if it was always from the same place, which it is. In which case they think ENT can zap the troublesome capillary, and solve the problem. Someone from ENT will visit me tomorrow to assess. I got a late call from Ambicare (about 6pm) telling me that my blood results showed a vitamin K deficiency, and I should go to T16 to get some drug, and it must be tonight. So, after dinner (Chinese takeaway), I duly did as I was bid.

Here are the pictures from yesterday. Me in front of Tate Modern with St Paul's as a backdrop (ignore the van man :)



And here I am on the millennium bridge, famous for it's design flaw that needed fixing after it was built (how many software products are similarly flawed?).



Tomorrow is a big day of treatment for me, as I have a chemo drip, and an intrathecal, which will mean I need platelets beforehand to make sure the puncture wound heals!


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A trip to Tate Modern

I had a turbulent night, and did not feel great this morning, an still don't. However, we had planned this day trip and I did not want to cancel, as I felt it was the the last chance I had for a day out.

I finished early in Ambicare, and met Rose at the hotel. We set off before ten, and took then tube to Southwark. We took a slightly meandering route, but we arrived in good order.

There is a lot to see! Arguably too much. One is continually distracted by the next thing. We managed to walk the entire 5th floor, and half the 3rd. On the 3rd floor they have the Picasso that is currently the most expensive painting ... "Nude,green leaves and bust".



Although not a favourite of mine, it looks impressive in real life.

I only managed half this floor before flagging, so we left and got some lunch at the nearby Pizza Express; we both had salad niçoise and fudge cake for pudding. Then we headed home. I was exhausted and fell asleep as soon as we got home. I am still pretty tired now, but glad to have finally visited this marvellous gallery.

I cannot name anything specific, but I definitely don't feel as well as a couple of days ago. I think it likely that I will be admitted to the hospital sometime this week.


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Blood

Rose and I passed a pleasant night, and she accompanied me to ambicare for a half an hour before leaving to go home and spare some love for Brandy, who has not had much company these last couple of days :(

I got my chemo drug, and then received two units of blood. It takes a couple of hours for each bag to go through, so I was tied up there right until kickoff between England and Scotland!

My health is slowly but surely deteriorating as a result of the chemo. I still get head pain, but rather than a headache in the classical sense, I get pain when straining or bending. This is certainly linked to the intrathecal procedures I have each week. My counts are all coming down; you already know I have low haemoglobin (anaemia), but now my platelets have dropped below 50 (these cause blood to clot, normal is 150+ I think), and my neutrophils are down to 1.6 (White cells that fight infection - neutropenia is less than 0.5, normal 4+). Because my platelets are low I have to be careful of nose bleeds, and I get other slight bleeding (where then sun don't shine). On the plus side, I don't have to self-inject the fragmin anymore. They will probably have to give me platelets and other plasma products before my next intrathecal; I have been here before!

My leg continues to improve, as does my walking as you might expect. Let us hope all the infection was killed last time - remember, I am an optimist :)

The rugby was a bit disappointing. England were by far the better team, but a combination of real endeavour by the Scots and a lackadaisical forward performance in the loose by England kept Scotland in the game. We could/should have had 2 more tries. Their try was a flash of brilliance/luck that could not be repeated in many attempts. Still, I give great credit to them man for trying it. Haskell was deservedly man of the match.

Here is the picture I promised you yesterday, of my lunch with Marilyn and Raksha







Today, I had pizza for dinner, in case you were wondering!


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A large lunch and a Lebanese dinner

A peaceful night and another straightforward morning in Ambicare.

At lunchtime, Marilyn and Raksha came for lunch. We went to Ravi Shankar on Drummond Street; all you can eat vegetarian Indian buffet for £6.95! Needless to say we ate too much, but it was very good, especially the dosas. I hope to have a picture to show in the near future.

After lunch, the ladies left and I crashed out in my room accompanied by the rugby. Sadly, I fell asleep and missed the second half of Italy/France. The Italians certainly put on a spirited show, but I feel the French rugby team and the English cricket team have this in common: on their day, they can contrive to lose to anyone!

Wales/Ireland was a far more entertaining game. In the end, I think the Welsh deserved to win, even though the bogus line-out (and the subsequent try) was a disgrace. The touch judge should be cited!

Whilst the rugby was on, Rose arrived for the evening. She had been playing golf in the vice-captain's cup, and scored level par. Sadly, this was only good enough for 6th place, but still a great round, so well done to Rose.

For dinner, we tried something different, and went to a Lebanese restaurant just off Googe Street. It was really good and fresh; a welcome change fro more "prepared" cuisine. It did not sell alcohol, but maybe that was not such a bad thing.

Tomorrow I will be in Ambicare a long time, as they will give me two units of blood. I should be back in time to see England.



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An uneventful day

I slept well last night, and headed over to Ambicare early just after nine. They serviced me right away, and while the chemotherapy was up Chris arrived to visit. We had a nice chat, and when I was free of the pump we headed over to the hotel to give him his book back. Then we sat in the bar and chatted until he left.

I went back over to see the doctors; nothing special to report.

I spent the rest of the day reading, sleeping and eating, but nothing very noteworthy; hospital canteen for lunch and Japanese for dinner.

Now the weekend awaits me, my second in the hotel. Let's hope England's rugby team do better than our cricketers managed today.


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Pizza and Curry

I slept averagely last night; Rose and I were awake just after 4, and had a cup of tea! After this we dozed until it was time for breakfast. Rose left just after breakfast, and I went across to Ambicare early at just after 9.

I managed to give blood, before going over to the main hospital for my ultrasound. They kept me waiting an hour an a half, but eventually it happened, and the results were very positive; no abscess, just healing tissue. My leg does feel less tender, almost normal; just the swelling to go now, which the doctor says may take weeks.

Pete came for lunch, besuited and wearing a tie (a great improvement over last time). We went to Pizza Express at Great Portland Street. We got our pizzas OK (I had Fiorentina, Pete had American), but the room filled up, and they could not cope. A couple of gents next to us who had been given menus just left. We were waiting for desert, but instead just got the bill, paid and left. We went to the cafe next door to the hotel for our desert of cakes and coffee.

After lunch, Pete departed and I went back to Ambicare for my chemotherapy treatment. Eventually I got bak to my room at about 4:30, had a quick kip, spoke to Rose and got ready for the evening ...

In the evening Patrick came to visit, and we went for a curry, again to Drummond Street, but instead of Zeen we tried Masala Hut. The food was much less interesting than Zeen, more like a standard curry house, quite average sadly. We had king prawns in some sauce (for me, the best dish), veg bhuna, aloo gobi and matta paneer, with rice and naan, washed down with cobra beer. They have a 50% discount for taste card, but they made a mistake with the bill which we had to point out! Thanks to Patrick for buying me dinner:).

I decided to try walking there without my stick. Unfortunately, I set off in the wrong direction, and when we were doubling back I lost my footing and fell over; not badly, but I had to rest after the effort of getting up and dusting myself down! The rest of the journey both to and from the restaurant was made without incident, but I think I will keep the stick with me for a while longer (the stick would definitely have prevented my fall). As I am fond of saying, the stick is a crutch :):).

I think my taste is starting to get worse, so these halcyon eating days may be coming to an end. I have gained about 5 kilos since coming to the hotel, which is a fine effort I am sure you agree.


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Kapoor in Kensington Gardens

I forgot to show you the pictures of my day out yesterday with Harry.

I cannot remember the names of the installations. Here is the first one






It is like an angled inverse satellite dish. I am in the image, but you probably cannot see me with the version of the picture that is uploaded.

This one is clever, in that the top is reflected in the lower part:






This was the best one. A curved, two sided mirror. Then concave side gives inverted images ...






The convex side upright images.






The fourth installation did not work; I think you need cloudy skies, and the sky was clear blue.







Here is Harry:






And here am I:






It was a great day out!

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Chemotherapy starts again

After two days off, the chemotherapy regime kicked in again today with the next intrathecal treatment of methotrexate. This means a long day in Ambicare. I also had some more red cells to boost my haemoglobin which had fallen back to 8.1.

I slept OK, and because I knew I would be tied up in Ambicare most of the day I bought lunch in Sainsbury's on the way over. The day went more or less as I expected; I received the blood, and about 2:30 had the intrathecal. After the obligatory hour lying down after the procedure I got a voucher and had pre-dinner from the canteen (the usual), before heading back to the hotel to wait for Marilyn who was planning to visit at about 5:30.

My general state of wellbeing is as good as it has been since early January. Even my rest pulse dropped to 65 today (having been up in the high 80's for the last few weeks). I am sure my exertions have helped with this, as well as building some minuscule amount of muscle tone. However, my blood counts are all falling as a result of the chemotherapy, and I have a feeling of living on borrowed time (and some payback is just around the corner). If someone asks how I am, I would say "very seriously ill with leukaemia, but in very good spirits at the moment".

Marilyn arrived as expected, and we sat in the hotel bar, had a beer and chatted for an hour. Shortly after she left, Rose arrived for dinner (and eventually breakfast). For dinner we went to Prezzo, and a jolly good meal we had. I had calamari to start, followed by salmon salad and fries, Rose had salad niçoise. We shared a chocolate fudge cake for pudding. It was very nice, and also a 50% tastecard deal, so very reasonable, despite the wine, beer and brandy we consumed!

Now, back in the room, my drug timetable is tuning a little late - the meal and the company were worth the trouble :)




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A trip to Kensington Gardens

I slept quite well again, Rose stayed over but had to leave early, right after breakfast. I made a drug inventory, and went over to Ambicare with a list of drugs I am running out of to reorder from the pharmacy.

I have no treatment again today, so by 10 I was done. Only the ultrasound appointment time was outstanding. Harry arrived to visit, and we enacted my plan to visit Kensington Gardens to see the installations of Anish Kapoor (Hilla had advised me they are there).

I bought a one day travel card at Warren Street station, and we took the tube to Lancaster Gate, changing at Oxford Circus. The connection between Victoria line and Central line is pretty long here, but mostly downwards. We arrived with no incident.

The weather was gorgeous; a lovely Spring day. We entered the park looking for signage about the exhibition, but there is precious little of it. We found one sign, and went in the vague direction of the nearest piece. Unfortunately, we went the wrong side of the water, and only got to see the back of it! So we doubled back and eventually found it. But then we could not remember where the other pieces were, so we went back tot the original sign! We walked on through the park and eventually we saw all four installations. I thought two of them were outstanding, one OK, and one disappointing, I think because the sky was too clear.

We exited the park, and walked up Queensway in search of lunch. We settled on an Italian, and each had a bowl of pasta washed down with Peroni beer (I had two beers). Finally we headed home, this time changing to the Northern line at Tottenham Court Road, to get to Warren Street. This change was much shorter, although still not trivial!

Many thanks to Harry for escorting me home :), he could have taken a bus to his home from the restaurant. I think we had a great day out; we certainly both enjoyed the sculptures. I took some pictures, which I hope to post in the near future.

Back at the hotel I had a kip (crashed out would be mor accurate). This is the farthest I have walked this year! In the middle of the afternoon, the nurse rang to say that my ultrasound is booked for Thursday morning, and my drugs were in. I went over to collect the drugs and a meal,voucher, and then I had pre-dinner in the hospital canteen (the familiar panini and chips). I have just rounded off the evening with a small Chinese takeaway.

Sadly, Arsenal versus Barcelona is not on the hotel telly.



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Dinner with Rose

Slept well last night, and ingeniously managed a plate of fresh fruit as part of breakfast by having it before the eggs!

My attempts at self-injection are improving; this morning was the best yet. I got to Ambicare at about 9:30, and although I have no chemo treatment today, I still need to give blood, and see the doctor. Plus, an ultrasound is supposed to be booked, and I wanted confirmation of the time so I could plan my day with Rose who was scheduled to visit today for an overnight stay.

Rose arrived at about 10:30, and shortly afterwards the doctor came to see us. He decided that we should get a head CT scan before the next intrathecal (LP), to rule out bleeding as a cause of the headaches, and said they would let me know when it was. Since the next intrathecal is booked for Wednesday, the CT needs to be today or tomorrow.

Rose and I set off to look for somewhere to eat lunch. We walked down Tottenham Court Road, and when we got to Goodge Street they rang to say that the CT scan could be done in the next half hour. So we turned round and headed back to Ambicare! Rose got me some Sushi for lunch. They had to put a cannula in my arm for the CT people (who cannot use the PICC line for some reason). This proved a little tricky, but third time it was inserted, and off we went to "Imaging" for the CT scan. When it was done, they removed the cannula, and we went to the canteen for my second lunch (panini and chips; what? A guy in my condition has to eat!).

So, the CT scan was arranged and done on the day, but sadly the Ultrasound for the leg never materialised. I suspect it is a case of "who you know" (each was arranged by different doctors). But maybe the CT people are just more accommodating.

After all this excitement, we returned to the hotel for a well earned kip, and then planned our dinner. Originally, we had thought of pizza, but Roses's head was turned by an Indian restaurant she spotted on a recce from the hotel whilst I slept. It is called Zeen, and we booked a table for 6:30.

The food was delicious. We had popadoms, spicy king prawns and spicy paneer for starters, followed by Malabar fish (sea bass in coconut sauce) and Bombay aloo for main, with rice and naan, washed down with Cobra beer. I can recommend this restaurant. Needless to say part of the taste card scheme, so very reasonable for the two of us.


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Sunday lunch

I had a pretty good night's sleep, with Rose beside me, but I'm afraid she fared rather worse. We went for breakfast at 8am, and Rose was also very approving. We went across to the Ambicare centre, and Rose left when I was hooked up to my chemotherapy.

Although I can walk much more easily than even a week ago, I am still concerned about my leg, and the swelling it still has. My doctor has booked me an ultrasound for tomorrow, and we will probably get an orthopaedic consult afterwards. My headaches continue, and the doctor will discuss with the rest of the team if a head scan is necessary, to check for a small bleed. It is not uncommon to get headaches after an intrathecal, and that is still the most likely cause. We shall see ...

When my treatment ended, I headed back to the hotel to wait for Les, who duly arrived late morning. We chatted and could not decide where tom go for lunch, so we went to Ask, because at least it is close by, they are part of the taste card scheme. We had ciabatta and olives as appetisers, Les has Mediterranean stew and I had seafood risotto, and we finished off with cheesecake and profiteroles, washed down with Peroni beer.

After lunch we got a Starbucks and then headed back to the hotel for more chat. At about 3pm I needed a lie down, and Les left me to it.

Sunday night is a bit problematic for eating, because many places are shut. But I managed.

I have som pictures from yesterday. Here is my fish lunch:




Here is a picture of me in the iconic London location of Piccadilly Circus:




And here, for completeness is Eros:




Finally, here I am in my hotel room. I am holding the Araucaria we got yesterday (Rose and I made a pretty good job of it, and Rose mostly finished it in the night).



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Rose and Ian's big day out

I slept better then normal, and went to breakfast at 7:30. I even managed a better attempt at self-injecting the fragmin, and set off to the Ambicare bay at about 9:00.

The place was deserted! Obviously haematology/oncology daycare is one of the few departments that operate outpatients at a weekend. Whilst I was getting my chemotherapy, Rose arrived to spend the day, and the night with me (she is currently sat on the other bed in the hotel room).

We spent the first part of the morning doing the Telegraph crossword, but it is too easy (compared to the Times). I offered the rest of the paper to the other patients, and one of them had a Guardian in return (all these are national newspapers for my non-English readers). Furthermore, the Guardian crossword was an Araucaria - the doyen of crossword compilers (he of Christmas crossword in my profile pic); it was a good swap.

We decided (after much discussion) to have a fish lunch, and chose a restaurant that is part of the "Tastecard" scheme, which gives 2 for 1 or better still 50% off at thousands of restaurants. I got discounted membership through a perks scheme at the UK office of my work, and thought it might be useful for this stage of treatment.

We took a cab to Fishworks in Swallow Street, and it was a pretty good meal. We shared fried squid to start, then I had whole sea bass with Rosemary, and Rose had whole bream with garlic en papillote. Dessert was chocolate fondant for Rose and creme brûlée for me. The fish was excellent, well cooked and very tasty. The deserts were a bit disappointing. And the food was 50% off, so very reasonable. After lunch, we walked to Eros to take some iconic pictures, but failed abysmally; I will post them when I get them.

We walked up Shaftsbury Avenue thinking it would be a straight run for the taxi home, but oddly there was almost no traffic of any kind in the street. So we kept walking, past Leicester Square, till eventually a taxi arrived coming south, and he took us home. The police had cordoned off the entrance at Piccadilly Circus due to some march taking place.

Medically, I am getting an almost permanent headache, for which I need to keep taking paracetamol. I have told my doctor, and she says we will monitor it, and take action if it gets worse. Aside from this, this stage of the treatment is like an enforced holiday in London, where you get poisoned every morning, and then the day is yours, except you are so weak that you can't do very much!

For dinner I went round the corner for a Chinese take-away. It was OK, and I will probably go again.

Now we can settle down to look at the Araucaria. What a day we had!

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Making use of my red cells

I slept even worse last night than the night before, eventually I went to breakfast at 7:30 and then crashed out when I got back to my room. My breakfast: scrambled egg, with mushrooms and smoked salmon, with toast (ordered ahead), followed by fresh rolls and thinly sliced cheese selection, followed by a bowl of cereals, followed by a breakfast pastry, washed down with a pot of tea. I would have a fruit plate too (they have good looking fresh fruit), but there never seems to be room!

I woke just before ten, and self-administered my fragmin injection. I was rubbish; it hurt going in and it stung afterwards! I hope to get better at this. Then I made my way over to the Ambicare suite. Not much treatment today, just single IV chemotherapy dose, and then wait for the doctors round. I was free of Ambicare at about 1:30. I tried noodles from the Japanese take away for lunch, but they were not great. The good looking noodles have chicken:(

Whilst in the hospital, I had discussed the etiquette of tipping the nurses with one of the chief nurses, and she said it was OK to do it. So after Ambicare I walked down to the bank, and got some cash for them to have a drink on me. It was quite stressful queuing for the cashier (leg pain), but I wanted to make the most of the extra stamina I have because of getting the red cells yesterday. In fact, I never got out of breath during the whole day, so I think I made a good decision.

After the bank, I went to the hotel for a lie down, and at about 3pm I went back to my old ward - T13. It also proved stressful for my leg, mainly waiting around for the elevator. On the ward I met quite a few of my nurses, and the chief was very chuffed with the donation. In fact, they are planning a night out soon, so this can go into the kitty. After I left them I went to the canteen for some chips using a voucher that we can get from Ambicare ( very average). Finally, I came back to the hotel for a well earned rest.

Rose could not visit today because she was attending a memorial service for a friend of ours. It was a very emotional time for her. We spoke on the phone at about 5pm. Earlier, Jeremy rang for a chat. He is planning to visit early next month (travelling from America); I hope it will be a propitious time to visit.

For dinner, I went tot the other Italian restaurant called Amaretto. I had seafood tagliatelle, and it was very good. Lots of clams, mussels (in their shells - very attractive), tender squid and shrimps, topped off with a king prawn, and served in a rich tomato sauce.

I seem to be food obsessed in this post, but this is my life, so it is just as well you share it. At some point my appetite and taste will probably nose dive, so I am making the most of it while I can!




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Settling in to Ambicare

I slept fitfully, getting used to the hotel I guess. Breakfast was pretty good, maybe even better tomorrow as I now know to order the toast up front! I went across to Ambicare at about 9:30.

Today I had Cytrabine IV, which was up when Rose arrived to visit. Visiting in Ambicare is not ideal; you are in a room with the other patients, and space can be at a premium. Still, it was lovely to have Rose there. She brought some goodies for the hotel, including the DAB radio, but that does not seem to work :( . After the chemotherapy, they gave me 2 units of red cells, each of which took 2 hours to push through. Rose popped out to Sainsbury's to bring back lunch, and left in the afternoon with me still getting blood. We did some crossword clues successfully :)

I learned how to self-inject my fragmin dose, so from now on I will be doing it here in the hotel before I go across. Whilst I was hooked up, the administrator came to tell me she was going to install the alarm in my room, and showed me how it works.

At about 4pm I finally got out of Ambicare, and headed over to the hotel for a kip, as I was exhausted. I noticed there was no alarm as I got into bed. About 5 minutes later the door opened and my nurse and the administrator came in to fit the alarm! I have become so institutionalised that I was not the least surprised when two young ladies entered my room with me in bed! But they were pretty surprised! Fitting the alarm did not go smoothly! There was a problem with the second phone line in the room (I helped them troubleshoot). It took almost an hour, but eventually the alarm was tested and they left.

I crashed out for an hour, before waking, bathing and dining out in Ask (penne pomadora, ciabatta and a beer).

Now I need to take my nighttime drugs, and then and settle down for the night.


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I am an ambulatory outpatient

Rose's back was not in good shape this morning, so I came into London in a taxi to the outpatients building. I arrived at about quarter to ten, and after some induction and form filling I then waited most of the day for my first treatment. This was mainly because we had to wait for the full blood results which always takes a few hours. So I sat in the comfy chair, listened to music and played some bridge to while away the hours.

At 4pm I had an intrathecal (lumbar puncture) - this cycle has one of these per week. Then I had my first chemotherapy treatment, Cyclophosphamide. The other drugs I will have this time are Cytarabine (IV) and Mercaptopurine which is taken orally. All these are new drugs, with new side effects! The Cyclophosphamide is particularly nasty as it can affect the bladder, so I also take another drug called Mesna to counter this.

At 6pm I left the Ambicare unit (just when it closes) and checked into the hotel. The pharmacist gave me a big bag of drugs to go with the drugs I already had, and a sheet telling me when to take them. Because I had the chemotherapy so late, I have to take some pills at 11pm!

The hotel is pretty nice. I have a quiet room on the 4th floor. At 7pm I went out for dinner to the Indian restaurant nearby. I enjoyed the meal very much; it reminded me of my youth (I ate in Indian restaurants quite a lot). I had popadoms (with relishes), followed by prawn bhuna, tarka Dahl, pilau rice and naan, washed down with a Cobra. It was a lot of food, but I heroically managed it all.

All in all, this Ambicare regime seems like a good thing. I will have about 7 to 10 days of this life before getting neutropenic. My current thinking is that it will be best to transfer to the hospital before I actually go neutropenic.

My leg is certainly stronger, but my anaemia is limiting my ability to walk. On the way home from the restaurant I stopped at Tescos for water and drinks - heavy things, and although it is almost next door to the hotel I was breathless when I got to my room. I think they will give me a unit of red cells tomorrow (I hope).

I am pleased to say that a day of rest has been very good for Rose's back, and she reports a great improvement :) :), so she will visit tomorrow.

Needless to say I open for all visitors; just make sure you ring before you come. It makes sense to meet downstairs I think. I have not explored the public spaces of the hotel, but even if they are inadequate there is a pub nearby!

They say breakfast is good here - I will let you know tomorrow.


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My last day at home (for a while)

Today was my last day at home; tomorrow I go to start the next cycle of chemotherapy tomorrow morning. Not much to report today, except that Rose has tweaked a muscle in her back. Hopefully ibuprofen and hot water bottles will ease it.

For this post I will just share some photos with you. Firstly, Thalia asked to see a picture of Brandy. Here she is in the garden:



And here she is in classic pose on the bed in our house in France:




She's got a very fluffy belly!

And here am in happier, carefree days, looking how I ought to, on a walk in the Alberes mountains above our village. It was a cold autumn day in 2009:




The view is over Spain! We were accompanied on the climb by a very keen dog:




I recall his guiding fee was very reasonable!

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