T+188: Lumbar puncture

Today I went to the hospital for my lumbar puncture. The procedure is done by a doctor in the Haematology daycare unit, but by chance the BMT clinic was also running today (the delayed Monday clinic) so I popped up to say hello before signing in. I have changed my next appointment to be the 12th of January just before I (hopefully) travel to Israel.

I had the last LP under sedation, but this time I decided to just have a local anaesthetic because I wanted to drive home myself afterwards. Like most procedures, the level of discomfort depends upon the skill of the doctor ... and of course Lady Luck!

The pharmacy released the methotrexate without a problem, so I did not have to wait long. However, the procedure was not very nice. The needle went in very close to a nerve, and I got electric shocks down my right leg and my right foot. It was particularly unpleasant when she injected the methotrexate. But still, it doesn't last so long, and it's only once a quarter and there's only two more to go!

The nurses were not going to take blood, but I asked for a blood count to see if my neutrophils had gone down since last week (which would point the finger at the Glivec dose). I am pleased to say my white count was never higher; my neutrophils are 3.87 and my lymphocytes 0.49, the highest they have been for a while.

We had a lovely "traditional" Christmas - just the two of us, some great food, fantastic wine and the Queens's speech. We have also taken advantage of the unseasonably mild weather and played a lot of golf. Although I am playing really badly, Rose is well on form, and yesterday she shot gross 78, which is her lowest score ever. This augers well for 2012.

I hope you had a nice Christmas break, and I wish you all a fantastic New Year.

T+183: Joyeux Noël

J'ai promis mon ami Thierry de faire une annonce en Français, donc ...

Je suis allé au centre médical hier, et bien que mon décompte de neutrophiles à tombé un peut, ces toujours normal, donc c'est pas possible à dire si c'est à cause de l'augmentation de dosage Glivec, ou c'est une fluctuation normale que tout le monde connaître (sans être conscient, comme moi). Le 28 j'y vais pour la ponction lombaire et ils prendront du sang encore pour vérifier; si les neutrophiles sont encore inférieures ils changeront le dosage de Glivec.

Apart de ça, je vais assez bien, beaucoup mieux que Noël dernier! Alors, je souhaite un super Noël à tous, et j'espère que père Noël vous apporte ce que vous désirez!

And I'd like to thank all of you for your kind words and wishes throughout the year; you'll never know how much they mean to me.

T+175: Neutrophil count continues to rise

Today they took blood for my next mixed chimerism test. As you will no doubt recall, this is the test to measure ow much of my host blood remains, versus how much is the donor blood from my brother. The hope is that there will be less of "me" than last time, but it is expected that some will remain, and I will probably need to be treated with mature lymphocytes fresh from my brother! This is intended to bring on some more GVHD, and hope fully kill off the last of my potentially cancerous bone marrow. I do not know if the test results will be back next week, if not I will know after Christmas.

They also took blood for a FISH test. This is another way of measuring how much Philadelphia chromosome I have (another way from the BCR-ABL test they did before). The test is less sensitive than the BCR-ABL, so we are looking for a definite negative from it.

I am pleased to say that my blood counts have continued their meteoric rise; neutrophils 3.36, haemoglobin 12.1 and lymphocytes 0.39. It is about the right time after ceasing immune suppression for my lymphocytes to start to rise (they have never passed 0.4 since the transplant). The cause of the drop in neutrophils is still unknown, so I am going to restart the Imatinib (Glivec) at 400mg per day. If my neutrophils drop, then we will know that Glivec is the cause. If they do not, I think we can assume it was some transient infection that caused the diarrhoea, and my neutrophils to drop. I have been on 200mg of Glivec per day, but the doctor said it really needs to be at least 300mg, so if my neutrophils do drop, I will cut back to 300mg, and see if I can tolerate that. If not, they will give me another drug, which I assume is yet more expensive than Glivec, otherwise they would prescribe it now!

I have my lumbar puncture (LP) and intrathecal methotrexate booked for the 28th of December. They will take blood for a coagulation test next Thursday (22nd), and hopefully the pharmacy will release the methotrexate without me having to wait 5 hours for another test on the 28th (like last to time). It is amazing to me that the doctors and the pharmacy cannot agree what is a reasonable period of time between the coagulation test and the LP, but it seems they cannot, so it will be pot luck on the 28th (the doctor said as much today, even though he will discuss with the pharmacy, they never give anything in writing).

I am trying to make travel plans for work; January to Israel and February to the US. Assuming I stay as I am, this will be no problem, but the rather annoying thing is that we never know what might happen. If my neutrophils suddenly drop like they did, or if I get an attack of GVHD, then I think I will have to cancel the travel. I feel that I must assume everything will be OK, and live as normally as possible (of course I do, I am an optimist in this, the "best of all possible worlds"), and I am looking forward to meeting my colleagues again after more than a year!

BCR-ABL Result

Yesterday the doctor phoned with the results of  my BRC-ABL test, which you will by now have read all about at Wikipedia :). The results are not 100% negative, but show such a small trace it is likely to be a false-positive. There is another test they can do to confirm this which will be done on the 15th when I next attend the clinic, but for now the doctor said that we can safely assume there is no reappearance of leukaemia.

T+165: Good news at the clinic

Today my neutrophils are 1.04, which is a rise of nearly 100%, and is much safer and better for me. The doctor said it looks less and less likely that the drop was caused by a relapse of leukaemia, but the BCR-ABL results are not back yet to fully confirm this. They will be ready when I next go to the hospital, which will be on the 15th. She said that it is also impossible that the GCSF shots could cause such a large rise in the counts, and the rise must be due to my own bone marrow recovering. My haemoglobin has reached 12.0 (and my platelets are still near 180), so overall my counts are pretty good. Perhaps it was an infection that caused the diarrhoea and the fall in neutrophils?

At the weekend we went to Hastings for Rose's birthday, and visited the site of the famous battle (very interesting) before having a nice dinner and spending a pleasant night in a boutique Bed-and-Breakfast. On Sunday morning we climbed the steps up the East cliff in Hastings, which I found quite hard work but very rewarding (it was more than 100 steps).

T+161: Blood count stable

I went to the hospital this morning to get my blood counts checked. My neutrophils are 0.56, so the same as last time more or less (slightly more in fact). Platelets and haemoglobin are still fine. They gave me another shot of GCSF, and I must go back on Monday. Going twice a week is a bit inconvenient to say the least, but I am also keen to know how my counts are doing, so I guess it is worth the hassle. Although I am borderline neutropenic, they said I can still eat normally (i.e. I can eat fresh fruit and vegetables), although I will avoid oysters for the time being!

I have upgraded my work laptop to Windows7, and it is not going so smoothly! It certainly takes my mind off the darker possibilities of my current symptoms.

Falling white cell count

Today I went back to the hospital for an extra clinic appointment after my diarrhoea attack last week. My neutrophils have fallen to 0.52, which is really bad, almost neutropenic. You may recall that the white cells consist of of lymphocytes that attack viruses and neutrophils that attack bacteria. My worst times in hospital were caused by e-coli infection when I was neutropenic, so I am a quite worried.

There are three possible causes of the drop in neutrophils: a) my neutrophils are pretty much all donor produced, but I do have some residual host immune system which is attacking the neutrophils; b) it is a common side effect of imatinib (Glivec) to lower blood counts; c) my leukaemia has returned.

Clearly, option c would be a disaster. The doctor thinks it is unlikely, because my platelets and haemoglobin are fine, and a relapse of leukaemia would normally knock all the counts. They have sent blood for a BCR-ABL test, that will show if there are leukaemia cells in my blood. The test takes a couple of weeks to be done, although they will try to expedite it for me. The doctor would also like a bone marrow biopsy, but since I am not so keen on the procedure we decided to wait for the results of the blood tests, although she said that if the blood tests are negative for a relapse of leukaemia, I might need the bone marrow biopsy anyway because it is a good way of seeing if the low blood counts are caused by my host immune system (and this can be treated if it is the case).

Rather than concentrate on finding the cause in the short term, I (and the doctor) am more concerned about infection. Accordingly, I had
a shot of GCSF today (the stem cell growth hormone) to try and boost my neutrophils, and also I will take a reduced dose of Glivec. I am going back to the hospital on Thursday to get another blood count, and hopefully my neutrophils will have recovered.

This all reminds me of the week before my transplant, when my red count dropped a lot in one day, and the doctor was worried it was caused by a relapse of leukaemia and took a bone marrow biopsy that day. I guess that whenever these symptoms occur (drop in blood counts), this is always a possible cause.

Assuming this is not a relapse of leukaemia, it seems there is a war raging inside me, over which I have very little control. On the one side is the donor immune system, attacking me (GVHD) and hopefully killing my host bone marrow, and on the other side the remnants of host immune system are attacking my donor immune system!

T+154: GVHD strikes?

On Tuesday night I had a bad attack of diarrhoea. I took loperamide (Imodium) and I called the hospital on Wednesday morning; they asked me to come in in the afternoon and get reviewed by a doctor, so off I went.

They took blood, and checked me out. It is probably caused by GVHD, but they also think it might be an infection. We decided to take no further action, and see how things develop. If it stays bad, I must go back on Friday, otherwise I will go back to the hospital on Monday so they can keep a track of my blood counts. So far, I have not had any more diarrhoea, so the loperamide has done the trick, and maybe whatever has caused it has calmed down.

T+147: An interesting clinic

Today the clinic was quite interesting. This last week I have noticed some dry skin on my face and head, the doctor told me that it was almost certainly caused by graft-versus-host disease. This is a good thing, as it means that my donor immune system is also hopefully attacking what is left of my bone marrow, which is the goal of the transplant (to kill all of my original bone marrow). Unfortunately, it also means that my white cell count has dropped, because the chemicals released in the blood as a result of the GVHD suppress the production of blood cells in the bone marrow!

The treatment for the skin problem is to apply steroid cream to the affected areas, which should resolve it, and hopefully enable my blood counts to stabilise. If they have fallen again next time, then I will be put back on the immune suppressant to enable my counts to recover; it is quite a balancing act! The next clinic is scheduled for two weeks time, but if the skin problems spread, or I get other symptoms of GVHD (like diarrhoea), then I will call the hospital and get seen sooner.

The doctor I saw today was another consultant on the BMT team that I had not met before, and he was very knowledgable, so I asked him about my life expectancy/chance of relapse. Although he was non-committal (like his colleagues), he explained the probability curves for the various risks, and concluded that probably, if I have not relapsed in 18 months then I should be OK, although a small risk will always be there. This is why I don't like to use the expression "I beat leukaemia"; it is never really beaten.

I had a "reduced intensity" transplant,meaning I was not blitzed with radiotherapy beforehand (because of my age and the risk of it killing me). Until recently, it was thought that leukaemia was too aggressive to be treated this way, especially my type of leukaemia (Philadelphia positive acute lymphoblastic leukaemia), although they have been doing reduced intensity transplant for lymphoma patients since 1997. Ph+ ALL is quite rare, and there is very little data about reduced intensity treatment for it (almost none in fact). The hospital only do 3 bone marrow transplants for ALL patients a year, and not all are reduced intensity! He thinks that in about 3 years time there might be enough data to form some more concrete ideas about outcomes.

My health continues to be good, and being back at work is very rewarding. I still have the phlegm (it may take months to go away says the doctor), and now this dry skin, but neither of these problems is affecting my life significantly. Although my white cell count and platelets are down, my haemoglobin continues to rise; today it was 11.8. This is because the lifecycle of red cells is much longer, and sadly this will drop back also over the coming weeks.

T+134: Bridge!

This Tuesday after work I went to play bridge in London with my good friend Andrew. It is the first time this year I have played, apart from playing with the most excellent Bridge Baron game on my iPad. I very much enjoyed the session; it is so much nicer playing with people than a computer!

This weeks clinic passed without any problems. My haemoglobin level has risen to the giddy heights of 10.9; the second rise in a row and I feel an upward trend here. Now that I have stopped taking the immune suppressants, I am also following my lymphocyte count, and this was only 2.6 (lower than last time). I have another appointment in two weeks, and then they will probably lapse to once a month (assuming my blood counts continue to be stable).

The leukaemia and lymphoma department at the hospital produce a small newsletter periodically, and the latest issue has a very sad story of a young man who had ALL and died before getting to transplant. It was quite upsetting to read, but it has had the effect of making me feel lucky to be alive! I have met no other patient in my clinic who had ALL (they mostly had lymphomas of one type or another), so any stories or information about other sufferers of ALL is always interesting.

T+120: Mixed chimerism baseline

At the clinic yesterday I got the results of my mixed chimerism basline tests. There are still some of my cells left, but no more than is considered normal. As I have said in the past, the more interesting test will be in 3 months time, when they can compare against this baseline to see how I am progressing.

I have stopped taking anti-sickenss medication, and I have not felt nauseous after almost a week. This is the first time I have successfully managed to stop (the pills are Ondansetron and Domperidone). I have had two previous attempts at this that ended in failure, but this time I am more hopeful as I have stopped taking the ciclosporin, which is a known cause of nausea.

My creatinine levels have dropped (which is good), and because I have stopped taking the ciclosporin, I no longer have to drink 3 litres of fluid per day. Oh joy!

After the clinic I had my pentamadine nebulizer, which I must have once a month until my lymphocytes recover (currently they are 0.3, and normal is about 1.5). Pentamadine is an antibiotic to guard against lung infections. Whilst waiting (one does a lot of waiting in hospital) I met another patient who had his transplant in February. He had lymphocytic leukaemia (as opposed to my lymphoblastic variety), but is the only other patient in the clinic I have met who had some kind of leukaemia. Unlike me, he had no serious infections during his chemo, but rather depressingly his blood counts tumbled a few months after transplant; I rather assumed that things just get better as time passes! They treated him by giving him more donor stem cells (which they had frozen from the original donation), and it seems to be doing the trick.

The phlegm still rumbles on. I gave them a sample to see if they can discover what is causing it, but they did not sound very hopeful of that. It is only a small annoyance, and I would say that I am now more fit and healthy than I was last December (when I got out of breath playing golf).

On Wednesday, Rose played in the National Golf Club Challenge final, for which the ladies section at our club qualified earlier this year. The competition supports the Seve Ballesteros Foundation (for cancer research) and it was played at The Shire golf course, which is the only course in England to be designed by Seve. Rose and her team came second, so congratulations to them.

I am looking forward to the rugby world cup final, and I will be supporting France (even though they did not deserve to beat Wales) - allez les Bleus!

T+108: My first week at work

The week passed very pleasantly. I find I am able to work 8 hours a day with no problem; I can see that before too long I will be back to my normal 10+ hours per day!

I had my first Thursday clinic this week. I still have the phlegm (2 weeks now), but the doctor said we should let it clear up without drugs, and it may take some time. Because I am more at risk of infection, I will be having a flu jab this year - I booked it at my local GP surgery for October 30th (the earliest they have).  I have stopped taking the ciclosporin, the immune suppressant drug. This is another milestone passed, as it means my donor immune system can fully recover. Apparently this does take some time, so I am still more at risk than normal.

I hope that my new immune system has killed all my original stem cells. They finally took blood for the mixed chimerism baseline. I do not know when the results will be ready, but it takes some weeks I think.

I drove into London by myself for the clinic, and it made me rather tearful as I was driving the same car (a Toyota IQ) on the same route and parking in the same car park that Rose used all those times she visited me in hospital. She really was a superstar, and her visits were the highlight of my time in hospital.

Aside from the phlegm (which is only mildly annoying), I feel very well, almost back to normal; I am now able to drink half a bottle of wine (or more) with dinner! This is the best definition of "nomal" I can think of :) This means that I may make less frequent posts to the blog (bi-weekly perhaps, to coincide wth the clinics).

I cannt sign off without mentioning the rugby world cup. The French certainly deserved their win over England, and Wales looked really good in all areas. I am disappointed that England lost, but playing against England  always lifts the spirits of our opponents! This was never more true in this case - France were so poor against Tonga, but so good against us. The semi-finals will be interesting ...

T+101: Vieux Chateau Certan

Yesterday was day 100 post transplant, the first milestone in the long road to recovery. We celebrated with a bottle of 1990 Vieux Chateau Certan, which was purchased around 1998 (in the UK). This is a Pommerol, made with predominantly merlot grapes, but also a good proportion of cabernet franc and some cabernet sauvignon. The wine was beautifully mellow, still with some tannins, and very rich and well rounded. In 1996, Parker predicted a plateau of maturity for this vintage between 2003 and 2020, so he was spot on! We have two more bottles in the "cellar" (which is not a cellar at all, but a collection of Eurocaves).

I still have the phlegm and greenish tongue, more or less the same as before. It looks like it is not going to go away unassisted. Aside from that I am in good health, ready to start work tomorrow, and looking forward to going to Honfleur in ten days time.

Meanwhile, the Indian summer continues here in the UK, with another sunny day in the high twenties; the golf course beckons ...

T+98: Heat Wave

We are experiencing a late September heat wave here in the UK, and very pleasant it is too, although somewhat confusing for the plants, who think it must be Spring already!

I had a long day in the hospital on Monday, waiting to have my intrathecal treatment. They took blood for a coagulation screen at 11:00, and the results did not come back until after 4pm. I eventually got home at 7 o'clock! The procedure went very smoothly - at least I suppose it did; I was sedated and so missed it all! This was (hopefully) my last Monday clinic. I now move to Thursdays bi-weekly; my next appointment is for next Thursday 6th October.

I am still getting phlegm. I can fool myself into thinking it is better than the weekend, but in reality it is probably the same. If I still have it next Thursday I will raise it again with the doctor.

T+93: Phlegm

For the last few days I have been coughing a bit of phlegm. Nothing that would even remotely concern an otherwise healthy person, but just to be on the safe side (and at Rose's suggestion) I rang the BMT clinic and told them about it. My tongue is also a little green! The nurse said she would talk to the doctor, and 10 minutes later they rang back and asked be to come in to the hospital to get checked out! They sent a taxi pretty quickly too! The doctor saw me right away, and she thought it was probably an infection (certainly not GVHD). She was very unconcerned about my tongue, but sent me for a chest x-ray to make sure my lungs were clear, and told me to double my antibiotic dose for 5 days (I take antibiotics every day at a low dose as a prophylactic). After being so well for the last week or two this is a little disappointing, but I hope it will prove to be short-lived.

Today I went on my very first demo march! The utility company Veolia is planning to build an incinerator in Hatfield, and we marched in protest. The weather was nice and there was a good turnout; there was much shouting and blowing of horns. Of course the real protest will be for all local people to write to the council and oppose planning permission, which we most certainly will do.

T+91: Continued good health

It has been an uneventful week. My health continues to be good, and they have reduced my ciclosporin to just one 25mg tablet per day (the lowest possible dose).

There is a good article on wikipedia about bone marrow transplants here, which discusses the "mixed chimerism" effect where both my stem cells and my brothers stem cells exist in my bone marrow. On Monday they will take blood samples to perform a baseline for the mixed chimerism tests, and also check for any leukaemic cells. They then do another set of tests in 3 months time and compare to the baseline. At that time I will know more about the efficacy of the transplant. It is hoped that the graft-versus-leukaemia effect will have killed most if not all of my stem cells ... if there are too many of my cells left there are some remedial actions that can be taken, for example injecting me with some mature donor lymphocytes (white cells).

A few other things ...

Because my immune system is deemed to be a bit stronger, I no longer get exclusive use of transport to take me to and from the clinic; I have to share with other patients living nearby. When the clinic switches to Thursday bi-weekly (in October) I will have to drive myself.

Yesterday we visited Rose's parents in Shropshire, and I drove all the way home (2 3/4 hours). When we went on car journeys in the past, we had to make "comfort" breaks for Rose; now it is I who need them more due to my continued intake of 3 litres!

This week I managed to play 18 holes of golf from the tees, walking. I only scored 20 Stableford points, but it is an achievement I am proud of.

T+84: Planning

My health continues to be OK, and I am slowly getting a very basic level of fitness back. At the back of my mind is the fact that my long term chances of survival are still not so good, but there is no point in thinking about it since I cannot affect it. With my continuing good health and returning fitness we are starting to make plans ...

This week I wrote to my HR department advising them that I will be able to return to work full time starting at the beginning of October. In the meantime I have started to try and get back involved with work related issues. I think I will find the discipline of working quite tough to start with, but I am looking forward to it.

We are planning a trip in October to Honfleur in northern France, to have a posh dinner with our friends Cees and Claude who live in Normandy. We can drive down using Eurotunnel and so avoid crowded places (which I am still a bit wary of). Honfleur is one of our favourite places; here I am at the "Vieux Bassin" in 1995:

T+77: Reduced ciclosporin

After clinic on Monday, they have reduced my ciclosporin intake again, down to 25mg twice a day. This is because the creatinine level in my kidneys continues to creep up, despite the reduction last week. Now I am seriously expecting GVHD to develop in some way, although my fingers are crossed that it will not.

They have scheduled an intrathecal procedure (lumbar puncture) for the end of the month. This is to kill any leukemic cells that may be lurking in my central nervous system. They do this post-transplant for reduced intensity transplants (as in my case), once every three months for a year. In the past, I have had some not very positive experiences of this procedure (it relies on the proficiency of the doctor), so I have asked for sedation. The regime of the second round of chemo (in April) called for one intrathecal per week, and this gave me very bad headaches, so I am a bit nervous about having more, but they assure me it is worthwhile.

Aside from these worries, I am well, and hopefully regaining my strength little by little every day. The nausea is all but gone and I remain optimistic (as ever). If only it would stop raining in New York so we could see some tennis!

Ordering photos on an iPad

When photos are sync'd from iTunes to an iPad, the order they appear in on the iPad is not filename order. The apple support website says that the photos are sorted by various date tags in the EXIF metadata stored in the JPEG, most notably the EXIF tag "DateTimeOriginal". I think this tag is also known as "Capture date", but for sure it shows up in Windows 7 Explorer as "Date taken". None of my photos had this tag set (the field shows empty in Explorer).

I googled various posts on this issue, some of which indicate that clearing the EXIF metadata completely before sync'ing makes the photos sort by filename when they get to the iPad ... however this did not work for me.

My first attempt was to write a Java program to set DateTimeOriginal using the Apache sanselan library for reading and writing image metadata. Although my program seemed to work, and the "Date taken" was showing in Explorer, after sync'ing the photos were still in the wrong order ... very vexing!

Whilst googling, I came across a utility called ExifTool (google for it), and its companion ExifToolGui. This program has a feature to set the EXIF DateTimeOriginal tag in a group of selected JEG files - i.e. the same thing as the program I wrote; however, after usng the tool and sync'ing the photos, it worked! The precise sequence of events is

* Run ExifToolGui
* Select all the photos you want to change
* From the menu, choose Modify and Exif Date/Time set and incremement ...
* Select DateTimeOriginal as the date, and enter the start and increment
* Click Execute
* When done, sync in iTunes

If you need to do this, I wish you good luck!

T+73: The end of summer

Summer is coming to an end, with cool and rainy weather forecast for September here in the UK. But yesterday it was still warm and sunny, so Rose and I had a round of golf. I still only swing a short iron, so rather than playing from the tees I drop a ball and approach from 100 yards or so. And of course I use a buggy to get round the course. Here is my approach at the 3rd

In the original you can see the ball flying toward the green (honestly). We had a good time, and Rose played very well, shooting another round in the mid eighties; it won't be long until her handicap is cut. This time I managed to play all the holes, and I was not as tired afterwards, so I am definitely getting stronger.

The nausea has settled down quite a lot with the anti-sickness regime. I still feel a bit rough in the mornings, but by 10 it has normally gone. Until now, with the reduced ciclosporin, I have not had any GVHD, but I don't know how long it takes after reducing the dosage for the level in my blood to fall.

We have been using a photo scanning bureau to digitize our old photos (from the prints, we lost the negatives) and by and large it is very successful. The only problems have been when the bureau scans them in the wrong order. It is easy to rename the files on the laptop, but when sync'd to the iPad they come out in the original (wrong) order - i.e. ignoring the file name. My next blog post explains how I overcame this.

T+69: Nausea returns

I have started feeling nauseous on a regular basis; in the last few days I vomited twice. We discussed it at the clinic on Tuesday, and there are several possible causes, most likely is still the Glivec. I have restarted a full regime of anti-sickness medication, to see if this gets it under control. If not (by next week), then we will try stopping the Glivec. She assured me that the nausea is both not uncommon, and temporary.

My kidneys are losing the battle against the ciclosporin (the immune suppressant drug); my creatinine level is slowly creeping up. Accordingly, the doctor has reduced my intake of ciclosporin from 75mg twice a day to 50mg twice a day. It was in the plan to make this reduction soon, so bringing it in a bit earlier should be OK. Reducing the level of immune suppressant means that I may develop graft-versus-host-disease (GVHD), which will be a skin rash or diarrhoea, so I am slghly nervous. On the other hand, I am keen to get off the ciclosporin as soon as possible.

On Sunday Rose and I played the par 3 course, and I played all 9 holes from the tee, walking all the way. I didn't do too badly. On Monday we played the main course, with me in a buggy, hitting an approach from the hundred yard markers on the fairways. I got tired at the 13th, and managed only two more holes after that. My aim is to be able to play the course from the tees, but for the foreseeable future I will need a buggy; my haemoglobin is still only 9.5. The doctor says it will take many months to recover, and will likely never get back to the level it was, but should be enough to lead a normal life, and to exercise normally.

T+63: Chinese Buffet

Yesterday my old friend Ray came to visit, and we had lunch at the local Chinese, which is a very reasonably priced and varied buffet. We arrived at about 12 and stayed till 3:30, eating and doing quizes! Ray won most rounds (I only won one), but the questions are difficult; we used Bamber Gascoigne's quiz book that Ray bought me earlier in the year. It was my first trip to a restaurant since the transplant, but it is quite a large room, and we sat well away from anyone else so I hope I did not pick up an infection.

On Tuesday Rose and I went to the driving range and I took a few full swings of my 9 iron and pitching wedge. I am pleased to say I can still hit the ball quite nicely - I hit about 30 balls. Next time we go to the par 3 I will play from the tees!

I continue to feel quite well, except for a couple of hours in the morning when I feel nauseous after taking the Glivec. The novelty of the Wii has not worn off, although I still cannot do many of the exercises as they involve standing on one leg, and I am too weak to do that. Still, I do what I can and it is certainly having a beneficial effect. My haemoglobin level is stubbornly staying at around 9.5; although this is fine for getting round the house, I really want it to increase as it will enable me to do more. I am still drinking 3 litres of fluid a day; I suspect I will have to continue until they start decreasing the ciclosporin (immune suppressant).

T+55: First steps to fitness

The Nintendo Wii arrived at the weekend, and I set it up on Saturday. Since then, Rose and I have been learning the exercises and playing the odd game. We have Wii Sports/Sports Resort and Wii Fit+ ...

... so I am now feeling the effects of trying some of the muscle and yoga exercises - my arms, legs and abdominal muscles ache! And I only did a handful of the exercises once; it really emphasizes to me how out of shape I am after 6 months of chemo and a bone marrow transplant.

Yesterday I (re)started taking Glivec. I am not sure why, but my consultant said it might do some good. I need to ask more (and I will next clinic), but anyway after taking my morning meds yesterday I promptly vomited. It became clear that the Glivec was to blame, so today I took some anti-emetic drugs 30 mins beforehand, and took the Glivec with my breakfast, and it did the trick. They have advised me it may take a couple of weeks to get used to the Glivec. Before the transplant, I was taking it every day, so I am surprised it had such a bad effect on me.

At the weekend we went to visit Kim and Marilyn and see their new kitchen (very nice); Paul and Raksha also came and we had tea and cakes. This was good for me as I had three cups of tea! thereby keeping my fluid intake high as I still need to drink 3 litres a day.

Today we had lunch at the garden centre! This is because Rose had a two-for-one offer, and gets free coffee every month, so it was a cheap meal!

That's about it. I am sleeping pretty well now, and hope that the Wii will help build back some muscle tone. I am a bit paranoid about being near other people, and try to stay outside as much as possible. Fortunately, although the summer here is not great, it has still been warm enough to sit in the garden when visiting or when visitors come here.  I would love to get through this without picking up a viral infection from someone.

T+50: Halfway

I called this post "Halfway" because the doctors say the first hundred days post transplant are the most important/worst, so at 50 days I am half way.

My health continues to be OK, although I am still a bit weak. I have been reading the blogs of some other leukaemia sufferers and I think that so far I have been lucky, at least with the transplant - having a sibling donor and both of us being CMV negative are both big advantages. I have ordered a Nintendo Wii with "Wii Fit" to try and do some regular exercise at home, and recover some of my muscle tone; I will let you know how I get on with it.

On Wednesday, Rose and I again went out on the par 3, same format as before; Rose starting on the tee, me chipping on from about 35 yards. This time we managed to play 4 more holes (13 in all) before I got too tired, and we finished all square.

Yesterday Rose played golf in the Captain versus Vice Captain team challenge. This event takes place at an external course (this year it was at Mentmore, near Leighton Buzzard). It was a team competition, with teams of four, Stableford scoring, with the best two scores counting on each hole, best three scores on the par threes. Rose's team won, with 90 points total, so congratulations to the winning team: Rose, Jan, Margery and Alison. There is a nice trophy which they each get to keep for three months; Rose has it first.

The summer sport definitely helps pass the time. I am enjoying watching India and England at the cricket and the US PGA golf tournament in the evenings. Tomorrow it is Wales versus England in the rugby, and next month the rugby world cup from New Zealand.

T+46: Haemoglobin

Today was clinic day. I have to keep drinking the three litres of fluid to look after my kidneys. The whole transplant process places the kidneys under stress, and the extra fluid minimizes the long term damage to them; so be it.

My blood results showed an increase in haemoglobin which means my new stem cells are finally making red cells. I hope for a steady increase; the more haemoglobin I have the more I will be able to do. It increased from 8.9 to 9.6 - my "normal" value is 14, so a way to go yet, but if the trend is upwards I am happy. My other blood counts are also fine. Next week I am going to restart taking Glivec (Imatinib). There is not much evidence either way but the most recent study of ALL post-transplant seems to indicate it is advantageous to take it for 2 years.

A while back I posted a puzzle that I thought was really difficult - http://ianandleukaemia.blogspot.com/2011/06/cambridge-cryptogram.html. Patrick and his Dad both came up with solutions, so congratulations to them! Patrick has posted his working as a comment to the above post if you want to see how he did it. Curiously, although his Dad came up with the right answer, the values for the letters are different (Patrick's match the answer in the book). This means that there are multiple solutions! There is one more thing that troubles me; the original puzzle is in a book of IQ puzzles, all the rest of which take only a few minutes to solve. But even with all the help Patrick got from the Internet, he still clearly spent a few hours on the solution, and his Dad spent much longer doing it all manually. Perhaps there is some clever way of solving the problem in a less labour intensive way?

T+41: Golf

Today Rose and I went out on the par 3 course at our club again. I was very keen to see if I would be more able to play, and the answer is that I am less tired than last week. We played the same format as last time; Rose teeing off as usual, and me chipping from about 35 yards. We played all 9 holes, and Rose won by two shots. I used a buggy to get round like before - the weather was hot and humid, although fortunately there was a light cooling breeze. We are going to make this a weekly outing on a Wednesday, to give us a way to gauge my progress.

Yesterday Rose played in the ladies open at the West Essex Golf Club festival of golf. The format was four ball/better ball; Rose partnered with Jane, last year's lady captain at our club. There was a large field of nearly 60 pairs, and Rose and Jane came equal fourth, and had the best score for the front nine for which Rose won an iPod shuffle. Many congratulations to Rose and Jane on a fine performance.

T+39: My birthday

Yesterday was my birthday, and many thanks to all of you who wished me well and many happy returns. It was a quiet day, but a remarkable thing happened early in the morning whilst we lay in bed. A woodpecker came to the bedroom window, and tapped on the glass! He came back twice more, but flew off never to return when Rose fetched the camera!! It was really special to see; woodpeckers are rare enough in our garden, let alone one coming to the window.

We had an Italian birthday dinner - spinach and pesto lasagne followed by ice cream coupe. I had a glass of Chiante to accompany the meal, a 2004 Isole e Olena that was delicious.

Today was clinic day, and for the first time I went without Rose. Since I am feeling OK, there was not much to discuss with the doctor - I am pretty much on track. I am keen to know if I have to continue drinking three litres of liquid a day; they will phone this evening to let me know. Drinking three litres is difficult - basically I have a glass of something (water, tea, etc) every hour, with a couple of glasses over dinner and a couple of small energy drinks on top. The hours click over with regularity so sometimes it seems I am continuously drinking. It is definitely not natural drinking so much (and of course weeing all the time too).

I have been home for over three weeks now, and I think I am getting stronger with each passing day. They can perhaps start weening me off the immune suppressants a little bit ahead of schedule ... we shall see.

T+34: A taste of golf

This morning Rose and I went to play golf on the par 3 pitch and putt at our golf club. I am not strong enough to take a full swing, but I chipped onto the green from about 35 yards using an 8 iron, and then putted. Also, I still needed a buggy, even though the distances are much smaller. It was really great fun, but I overdid it a bit and was very tired when we got home. We had a small competition, Rose starting from the tee, and me starting with a chip; Rose won by two shots.

On the way home we visited Bryan Lewis (our golf pro), to congratulate him on his son's performance at the Open. It was nice to see him but I was keen to get home so we did not stay long.

After my clinic visit on Monday, the doctor told me that I must drink three litres of fluid a day, rather than two, otherwise the immune suppressant drugs will become too concentrated in my blood. It is a real struggle to drink this much, but I am doing my best to comply. I am not sure how long I have to keep it up - maybe for the next two months (although I hope not).

I am pleased that more then a month has passed since the transplant. Just two more months to go until I am supposed to be past the worst of things.

T+29: A day at the golf club

Today our very good friend Howard came to play golf with Rose at our club, and like before (with Kevin) I followed them round in a buggy. It was quite ambitious, as I am nowhere near as strong as I was at Easter, which is the last time I did this, but I was keen to get out of the house and do something.

Here are Howie and Rose on the second tee:

and here I am inn the buggy

I had a great time, and both Howie and Rose played well, especialy Rose who shot gross 83, one of her best ever rounds. I managed to attend the pin on most of the greens, but it was quite tiring. We had a coffee in the clubhouse afterwards, and we have just eaten fish suppers from the chippy. So right now I am tired and full up!

Health wise, my worst complaint is that I still have very little appetite; I long to be hungry! I think it is the cicolosporin (immune suppressant) that causes this, so I have to put up with it for 2 more months at least I think. However, my strength seems to be returning little by little; last week I could not contemplate doing what I did today.

T+27: A nice surprise

Today I got a nice surprise delivery

Not the cat, but an "edible bouquet". It is a beautiful arrangement of strawberries, some covered in white, dark and milk chocolate. It is a lovely gift from Hilla and Yaniv, so many thanks to them. We shall enjoy eating them I hope.

Clinic on Monday was a very long day indeed. I had my normal meeting with the doctor at about 10am, but then we had to wait until 3pm to get a pentamidine nebuliser treatment (breathing in the drug) that stops lung infections. So 5 hours of waiting around. I also got a unit of blood as my haemoglobin was a bit low. And they removed my PICC line, on the grounds that it is just an infection/clotting risk, and I don't really need it anymore.

My health is improving I think. Today I went for a walk to the shops with Rose. My appetite is still not good though, but I am not as weak and tired as I was. I have a mild rash on my chest, which is GVHD related, but the doctor says it is OK as long as it remains mild.

I have started (re)reading Catch 22. It is just as good as I remembered. It is a bit of a boys book, but if you have not read it, I strongly recommend you do.

T+24: Steady progress

I don't have much to report, but it is Sunday afternoon so perhaps it is time for an update.

I am still feeling a bit down, time still dragging slowly. It has been a pleasure to have the golf and the tour to watch, especially the golf. The young amateur Tom Lewis is the son of our golf pro Bryan Lewis, so it has added extra excitement. The afternoons will not be the same when the golf is over.

I am managing to drink the 2 litres I need each day, but it is a constant struggle. My appetite is still poor, but my taste is OK. This means that when I eat, I can get some enjoyment, even if it is a struggle to get started. I have not had any wine since the transplant; I don't have much desire. Perhaps strangest of all is that I have no desire to eat bread (previously a favourite of mine). Toast is OK, but bread just seems to stick in my mouth.

I am wary of visitors, because I am afraid of getting a viral infection. I would like these three months to pass as uneventfully as possible. The doctor says that things are going very well, and I want to keep it that way. I am hoping for some improvement in my health during the course of the three months, the sooner the better!

T+20: A long slow process

On Monday I had my first clinic appointment. The hospital sends a car to fetch us, and take us home afterwards. Clinic is just giving blood, and a chat with the doctor, so not much to it. I have been told I must drink at least 2 litres of fluids every day, and this is quite a chore. The consequences of not doing it can be quite severe though, so I am doing my best. Basically it means 10 glasses of water or cups of tea across the day, plus some extras.

I am still very tired, and spend much of the day in bed. I have been enjoying the Tour de France; some very exciting finishes. Tomorrow the Open starts, which will cause a clash, but since Bradley Wiggins retired I am not so bothered about the mountain stages and the GC. I hope Cavendish hangs on to the green jersey.

My stomach cramps have subsided, so although I have no specific complaint, I feel generally lousy most of the time. Thanks to all of you who have wished me well. Pete popped round for a visit, and Babs and Nick gave us a nice present; it is good to know people are thinking of me.

Tomorrow I have another clinic appointment. This is going to be a long slow process ...

T+17: even more tired

I think I will stop posting every day, as my days are rather dull. Tomorrow I am off to clinic.

It is a struggle getting through the day. I hope things will improve rapidly.


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T+16: Tired

I am constanly tired, and my day consists of some periods up and about followed by a lie down! They did tell us I would feel like this, but it does not make it any easier. Time drags out across the day, and especiallty the night. I am still carrying excess fluid, which means I need to wee approximately every hour, night and day. The interrupted sleep pattern does not help with the overall feeling of tiredness.

I spent some time lying outside in the sun, which is very pleasant. The weather is quite variable at the moment but a few minutes of hot sun is like a tonic.

T+15: Home

I am home. Transport brought me here this morning. I am still quite weak and tired, but it is much nicer being so at home!

Rose was playing golf today, and played quite well. I spent the afternoon quietly, watched a bit of golf and the tour, and dozed off a bit.

The next three months will see me going to clinic once or twice a week, on Mondays and Thursdays. The hospital will provide transport to get me and take me home again. Over the course of these months I hope to build my strength up, and avoid being readmitted to hospital. One thing in my favour is that both Harry and I are CMV negative, which is the most common cause of readmission.

I feel that I am beginning the home stretch ...

T+14: This phase is ending

The doctors have decided to discharge me tomorrow! So tonight's the end of the second phase of the transplant. Transport is booked for 10am tomorrow, and I will be back in clinic as an outpatient starting on Monday.

Rose came this morning, and we went for a walk to the cafe for a coffee and a cake. The weather was foul, very wet, but still it was worth it. Rose cannot come tomorrow as she has a golf engagement, so I will be travelling home alone.

I have been very tired all day, and spent most of the day dozing. I think this is how the next few weeks will be at home, but at least I should be able to eat better.


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T+13: A quiet day

I slept poorly last night, but at least I managed to shed a couple of kilos of fluid. Time is dragging out very slowly for me now.

This morning I went out by myself to the shops, and got some more water, and bizarrely some pickled cucumbers as an impulse buy. I watched the TV for a bit, and then just dozed until lunch. I am still not comfortable, but much better than a few days ago. Lunch was terrible! This afternoon I tried to watch the cricket, but reception over the 3G network is poor today, so I have given up to write this blog instead.

Rose is playing golf this this afternoon, so I have been all alone today. The doctors are still very pleased with my progress, and are considering discharging me sometime this week. I have my fingers crossed.

Dinner was also terrible. I can't seem to eat savoury food in the hospital. I had yoghurt and ice cream. Another long night awaits ...


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T+12: some relief at last

I slept badly, still totally bloated and not much sign of relief.

The doctors came and said how pleased they were at my progress! But I felt awful. It'll get better they said, same as the last few days. They even talked about sending me home, but were vague. All my meds have moved from IV to oral at any rate.

Rose came to visit, and we managed to exit the hospital and go for a coffee at the cafe over the road. It was quite hard work, but everyone says I need to exercise somehow.

I have spent the afternoon dozing, and somehow the magic has started and I have begun to wee more than I am drinking, I.e. Get rid of the excess fluid. I hope,it continues! I am still very tired, and don't have much appetite, but shedding the excess fluid is my top priority.


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T+11: Yesterday

I am swollen beyond belief, and cannot do much. I am continually uncomfortable from the pressure of all the fluid. My vital signs are OK, and the doctors say it is a awaiting game.

Blogging may be haphazard for a few days.


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T+10: it feels like a transitional phase

My hands and eyes are still not good, and my body is still retaining fluid, the diarrhoea frequency has dropped to manageable levels so I am on on quite a lot fewer meds than before. Most of the symptoms are now likely to be from gvh rather than the conditioning chemo, so may require different treatment regimes.

The nausea continues to bubble under, preventing me from eating much sold food.

The doctor says things are all going as well as can be expected. After a few days the engraft will be complete, and maybe we can think about getting rid of the fluid and controlling the sickness.

Rose visited today which was much appreciated.

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T+9: Some improvements

I did no sleep well again, and awoke at about 6:30. Rose came to visit at about 10:00 and we chatted and did the crossword some more.

Rose noticed that I have a rash on my right foot, which I do. The doctor came at 12 and examined it. The "new" rash did not concern him; probably as a result of a pool of platelets i'd had the previous day. But he did look more closely on the palms sand soles and prescribed a steroid-baseed topical cream. Thus far, and it is early days, it looks promising. I still cannot type for toffee :(

The cause of the painful rash is probably gvh. This is very good as it confirms that the graft cells and working. My neutrophil level jumped from 0.1 to over 1.0 today! I have been told the these counts should go up and and down a bit until the donor cells have all engrafted on my bone marrow.


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T+8: Still sleepless, painful hands and feet

The oedema and the painful rash on my hands render them almost useless. It took me over five minutes to write that.

The diarrhoea is controlled with laperamide and Buscopan, but the oedema continues.they gave a small tablet which is supposed to reduce it.

My worst problem right now is lack of sleep. They have changed my drug regime to try and help it.

With the difficulty typing, and the lack of sleep, I may miss some posts. I will try to write a few words if I can.


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T+7:More or less the same

I really tried to get as much sleep as possible, so I did not see "the apprentice". The nights and days are a round of constant interruption. I will try again tonight to catch up on some.sleep

Some of my symptoms are cyclic, for example the burning hands and feet peak between 11 and 4, and then subside back to painful but tolerable.The diarrhoea is making a comeback sadly. It too seems to peak in the early evening. I did have a ten hour break between 5am and 5pm. I hope I get the same kind of break overnight.

Rose came to visit again, and we actually managed to do some crossword clues.

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Blogger or I made a mistake

I just submitted today's post, and for some reason yesterday's seemed to have disappeared, yet I know it submitted OK because I got comments.

Apologies if you subscribe and got "T+5" twice.

T+6: I need to sleep!

The diarrhoea and the number of IV drugs are still disrupting my sleep patterns, but I hope to get some good chunks tonight be because ...

The loperamide is quite effective against diarrhoea. I can last 4 or 5 hours using it. I am still taking the Buscopan to stop the cramps, so it looks like these drugs will enable me to make it through the next week or so until the cells engraft.

The oedema worsens. I have about 6kg of retained water in me. It has badly affected then palms of my hands and the soles of me feet, which are also affected directly by the cyclosporine (the immuno-suppressant). My hands and feet feel like they are being permanently scalded in hot water! They are going to give me a special kind of neuro pain killer that only affects nerves, but it takes 3 days to build up. In the meantime, I cool them down with wet paper towels!

Rose came to visit, and my improved wellbeing enabled us to attempt a crossword, but without much success I'm sorry to say.

This period of my treatment is like crossing a wide river in a raft ... at night. Then there is the climb at the other side!


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T+5: Oedema

I guess I have settled into a routine, and although it is not pleasant it is bearable. We humans are nothing if not adaptable!

Sleep deprivation is a key element. I have not had more then an hour's contiguous sleep, and I am unlikely to do better much before the donor cells engraft, which is at least another 7 days.

On the plus side, my stool samples came back negative for any bugs, including C-DIFF, so they have at last given me some loperamide (Immodium) to slow down the diarrhoea. Even so, there are sufficient procedures to keep me interrupted most of the night.

As the title suggests, I am still retaining fluid, pretty much evenly distributed, and my hands and feet have become very "sensitive" (it hurts to put my hands in hot water). My food regime is down to just yoghurt and ice cream, because my mouth has become very dry and the nausea puts me off eating anyway.

Rose came to visit, but I was again not such good company. It is nice to have her in the room to doze off with! The other day she brought her laptop so we could sync some photos. These are some of our early pre-digital photos that we got digitised by a bureau. It is not outrageously expensive, and it is so nice to see the old pictures.

This is a picture of the Vieux Bassin in Honfleur (France), with Rose very decorously in the foreground taken in 2000.




Honfleur is a beautiful town, with many good restaurants. It is funny to think that we would have paid for this trip in French Francs!

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T+4: Getting the drugs right

I had a terrible night. The diarrhoea continued unabated, and the attendant stomach cramps were bad. Furthermore, my temperature has spiked - I have an infection. They took blood cultures right away, and started me on Meropenem. They also booked a chest Xray just to check it is all clear.

Today my temperature continues to be above 38, and I have had a few rigor attacks (shivering). They are giving me almost all my meds IV, and one of the lumens in my PICChas blocked. Fortunately they have a chemical to unblock it, and it worked.

The rigor attacks are bad, because they exacerbate the diarrhoea! Talking of which, it has changed a bit, I hope for the better. The frequency may have dropped to 2 hours. I am cautiously optimistic.

However, having said all this, when the drugs are working I can get comfortable for a few hours. The chest Xray was clear.

Rose came again to visit, but all I did was sleep really. It is still a comfort to haver in the room with me for a few hours.



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T+3: It continues

Yesterday evening I did feel a little better, but then vomited my dinner. I passes a fitful night with the diarrhoea and cramps, but amazingly managed to get some sleep.

This morning things are, if anything, worse. This is definitely the worse diarrhoea I ever had, including the previous episodes documented in this blog. The cramps are a constant companion. The drug Buscopan does help with the cramps, but it does not last 6 hours.

I am retaining fluid, and not passing enough through my kidneys, so they have put me on a permanent fluid drip. Of course, it probably means I will retain more fluid, bit at least it gives me a chance of exercising my kidneys.

I just tried to take some codeine orally and promptly vomited, so I am also getting some IV cyclizine which is an anti-sickness drug. They are also going to switch more of my oral medication to IV. Things are a bit out of kilter right now!

Rose came to visit, but I am not much company. Apart from Rose, I do not think I would like to have any visitors for a few days - best wait until I am a bit better.

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T+2: Feeling terrible

The effects of the transplant and the cyclosporine are hammering home. I have very bad diarrhoea, with bad abdominal cramps, and I have a more ore less permanent headache. On top of this my body is retaining fluid.

On the plus side, my mouth is still in reasonable shape, although they tell me it will get worse. I am starting to get a bit nauseous too, but managed most of my breakfast. Lunch was less successful.

They gave me Buscopan to help with the stomach cramps, and codeine for the headaches, and in the afternoon I felt a little better, and got some sleep.

The doctor did not seem too concerned with my symptoms, and said I was doing OK for this stage of the treatment.

One day at at a time eh!


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T+1: Diarrhoea!

I slept badly last night, and today I have started suffering from diarrhoea, and general abdominal pain. It is entirely expected, and the doctors did not seem concerned.

Rose came to visit, but she also slept badly so we were both a bit tired. I was still hooked up to the cyclosporine when she arrived. She left after lunch at about 2pm and I tried to have a nap without much success.

The tennis is a constant companion; later on Murray is playing, but next up is Nadal v Muller.


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Transplant day

I slept OK, and at about 6:30am they gave me cyclosporine - a four hour IV drip. I was hoping to pop over and see Harry donating his cells, but my blood counts have dropped really low and I am again neutropenic, so I am advised to stay in my room.

Harry came over after his donation, but he had to go back to give blood for a post check, and also to find out if they got enough cells or if he needs to come back tomorrow. The treatment was not too bad, but he did get a cold sweat which they treated with potassium.

Harry came back later, and saw his cells being infused Into me! It is quite bizarre in some senses. I am still hooked up to them now, it will take about 2 hours to finish. The nurse put a cannula in especially for the cells, because they are not pumped, just fed by gravity. If they use the PICC line it would take far too long because the PICC line is much more sluggish than a cannula. They got enough cells this time, so Harry does not have to come back tomorrow, which is great.

This is quite a monumental day really. It is the coming few weeks and then the following 3 months that are the tough times. I am glad that Harry managed to donate the cells without too much discomfort, and I am very grateful that he has done so. It should take 10 to 14 days for Harry's cells to engraft in my bone marrow. Before that I have the chance of infection, and after that graft versus host disease.

I hope that my taste will not be altered too much by the chemo I have just had, but time will tell.


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The longest day

T minus 1

I know it was actually the longest day yesterday, but it will be a long day for me today! Last night we had pizza and I enjoyed it.

We checked out of the hotel and came early to Ambicare. I got pre-meds for the campath. First, IV steroid methylpredmisolone, then oral paracetamol, and then IV Piriton.

I have now been connected to the campath for 4 hours, with only a sore throat as a reaction, so things are going quite well. They started the cyclosprorin a while back, so both of these are going in at the same time.

Rose and I are watching the tennis and doing crosswords and puzzles at the same time.

At about 3:30 I started rasping when breathing, so they gave me a nebulizer of salbutamol and it eased my throat. So far it is the only reaction I have had.

The treatments all finished by 6:15, and Rose left at 6:30, but I had to wait over an hour For a porter to take me over.

I am in T16/40, I.e. 16th floor, room 40. It is very small.

All in all, I should be thankful that I reacted so little to the campath. The room has a little portable TV with no remote, but it saves me buying the pay TV.


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Mephalan

Today I had my dose of methalan. The primary side effect is a sore mouth, so they give you an orange ice lolly to suck whilst then infusion is running; I had two! It is a long time since I last had an ice lolly. We used to make orange squash ice cubes as kids (I'm sure everyone does). Now I have some soreness on the inside of my upper lip, and it is not too bad. Mephalan also causes nausea, but so far so good ( the anti-sickness drugs are working).

Last night did not go as planned. I was to get a taxi to Hyde Park Corner, but it started raining in the afternoon, and at 6pm in rainy London you cannot get a cab for love nor money. So, instead Patrick and Dee came to me and we ate in Fitzrovia in an Italian fish restaurant. The meal was quite good, and even better Patrick paid! We had a great time, it was especially nice to see Dee, who I have not seen for some time.

Rose has come to stay the night, and see me through tomorrow; I have the campath treatment, and then I am admitted to hospital. So tonight really is the last night before the serious treatment begins.

Thank you to everyone who has wished me well, I really appreciate it.


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Preparing for transplant

T minus 3

Today was another "easy" day in Ambicare, and I am now back in my hotel room watching The tennis on centre court. Nadal cruised through, I very much suspect he will be there in two weeks time, but we'll see ...

This morning I rang Harry to see how his first injection of stem cell stimulant went, and it was a bit of a nightmare. It was due yesterday, and was scheduled to be delivered by the district nurse at Harry's home (the local GP practice being closed on Sunday). The nurse arrived, but was very unsure of herself. "The dose is very large" she told Harry. She rang her colleague who also came round. They read through the pharmacy notes for the drug, which state that it should only be administered when an oncologist is present, so they refused to do it. They told Harry to go to the walk-in medical centre. The nearest centre is in Hounslow.

But things then got worse; the doctor they saw also refused to do it. Harry got him to ring UCH, which did clarify things a bit, but because the doctor had shown reluctance to administer the shot, Harry was not keen for him to do it. Then the doctor accused him of doubting his professional integrity! Finally, Harry came up to UCH, to T16, and it took 5 minutes to administer! By coincidence, the registrar on call was the same one who wrote the instructions for administering the drug, and she admitted she could have put more explanation. What a kerfuffle! And all this on father's day! I most deeply thank Harry and his family for their forbearance and persistence.

Today Harry went to his group GP practice to get the next shot, and the doctor he saw had initially the same reaction as the district nurses! But Harry protested that full instructions were sent to the practice. Grudgingly the doctor looked on his computer, and sure enough sufficient instructions to administer the injection were there on file! The second shot was duly administered, and hopefully Harry will be OK for the rest of the week's ministrations.

For myself, I still feel well with no nausea and good taste (impeccable taste I might say). Tomorrow I get a stronger drug called mephalan, that may cause nausea, and then on Wednesday the really nasty drug campath, after which I will be admitted. Campath causes one's immune system to attack itself, and rashes, shivers and so on are very common reactions. I get Piriton and hydrocortisone to counteract it.

This evening I am having dinner with Patrick at a swanky London restaurant inside the Intercontinental hotel at Hyde Park Corner. I will take a cab.

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Magnesium

I managed to stay awake until11pm watching the golf, saw Lee Westwood get home but missed Rory's back nine. He did well enough without me!

My blood results from yesterday showed a drop in my magnesium, caused by the chemo of course. When the doctor came to see me in Ambicare, she asked "have you been getting any muscle cramp?", and it so happens I have! I have been getting cramp in my calves. They do know their stuff - she said it was because of the magnesium deficiency, so after the chemo I had a bag of fluid with magnesium.

Rose came in the afternoon and we went to the Welcome Foundation to see an exhibition entitled "Dirt". It was OK, but not fantastic. The most interesting thing for me was that at one stage they made bricks using the ashes of dead people! There is a collection of some of these bricks and a list of the people who went into them; somehow this is quite thought provoking. We also looked at the permanent exhibition about medicine they have their. One could spend a whole day there if in the mood, watching the videos and listening to the recordings. We wizzed through!

Rose picked a restaurant for us to eat at, called the "Italian Kitchen". It is down on New Oxford Street, and serves simple, fresh Italian food. We both had the sea bass fillet for main and it was very good, washed down with a bottle of San Giovese (young, fruity and only 12% which is great). Of course it was a 50% Tastecard deal, but quite reasonably priced. The service was good, and after the meal the waiter asked Rose if she owned a restaurant! He explained that he asked because she seemed to know a lot about food and wine. We explained that we just eat and drink a lot. It was very amusing and very flattering for Rose.

Now we are back in the hotel, hoping to stay awake to see Rory take the US open.


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Boring is good

T minus 5

Rose and I dined well last night, and slept pretty well also (I watched the golf until quite late).

This morning Rose came with me to Ambicare for a couple of hours, which was really nice. We saw the weekend doctor, who I have met previously (and who did an intrathecal on me rather well as I recall), and she was very upbeat about the transplant process. "Oh, it's not too bad. You shouldn't get an infection really" she said. This is in stark contrast to the previous advice we were given, and I don't really believe it, but it was nice to hear. It is of course a dream of mine to get through the three weeks or so post transplant without an infection!

I feel well, and have a reasonable appetite; I think I might be able to gain some more weight in this "easy" period before the transplant. The rest of the day has been a bit slow and boring, but better that than stress and excitement!

To those of you who fancy attempting the "Cambridge Cryptogram", please email your answer directly to me. I will tell you if you got it right. First one to solve it will of course get suitable recognition in these pages (but no other prize).




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Back to normal in Ambicare

T minus 6

Thank goodness today was a much easier day than yesterday! I spent the morning relaxing in Ambicare - I have my own room rather than sitting in the open area to minimise my contact with potentially sick people. I was able to go out and get some lunch before the chemo was given. Another dose of fludarabine; it only takes 40 minutes. I was back in the hotel by 3pm.

I am still feeling well, so I guess I am tolerating the chemo OK. I have an alarm installed in my hotel room in case of nighttime emergencies; let us hope I don't need it.

I spent the afternoon watching the US open - well played Rory! Rose has just arrived and we are going to eat at a slightly upscale Italian soon (with the Tastecard of course).


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Cambridge Cryptogram

This is the IQ puzzle that I referred to in my post "The last supper". It is copied verbatim from the book of IQ puzzles that Ray gave me, including the somewhat curious double,value of "N" in the example. I think it is just a proofing error, but who knows?

Cambridge Cryptogram

Each letter has a numerical value attached to it, and the total of all the letters equals the professor's value. For example, if the letters N,E, W, T, O and N had values of 12, 7, 9, 14, 21 and 5, respectively, then Isaac Newton would have a numermical value of 68.

Your objective is to figure our Hawking's numerical value.

BARROW 71                TURTON 80
NEWTON 70                AIRY 46
WHISTON 104              BABBAGE 84
SAUNDERSON 129           KING 45
COLSON 51                LARMOR 58
WARING 92                DIRAC 52
MILNER 58                LIGHTHILL 130
WOODHOUSE 108            HAWKING ? 

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A scare in Ambicare

T minus 7

Today is supposed to be my first treatment day. I arrive in Ambicare slightly late at 9:45 due to a phone call with Patrick, who has interesting sailing and work news. Bloods are taken, and my haemoglobin has gone down almost a gram to 7.2. Just after 11 I am given a unit of blood. The doctor arrives, and says he is concerned about the drop in haemoglobin, and wants to do a bone marrow biopsy to confirm that I am still in remission. Although I had a biopsy confirming remission only two weeks ago, he said it is possible I have relapsed.

I call Rose at home and leave a message as she is not there. Whilst waiting for the biopsy I have an ECG, now standard practice for transplant patients since someone had heart problems!

I have had four previous bone marrow biopsies. The third one was particularly painful and protracted; it took the doctor 10 minutes of pushing to get into the bone. She told me to be sedated for all future ones, as they only get tougher. For the fourth one I was sedated. Today, because I had a big breakfast the doctor said we would have to wait too long for me to have sedation, and he wants the results today, so we can begin the conditioning chemo. So, he insists that we do the biopsy under local. I acquiesce; what choice do I have. After one and half hours of waiting, thinking about the painful procedure to come, and worrying that I have relapsed, he performs the biopsy. It was the easiest, quickest and least painful since the first one back in January! It reminded me of Catch 22, and the bombing run to Bologna; "it was a milk run".

Now I will get another unit of blood, whilst waiting for the results of the bone marrow biopsy. If all is OK I will get the chemo late this afternoon; it is only a half hour infusion.

The results of the bone marrow biopsy arrive at about 4pm. It is all clear, and we can proceed with the transplant. I am now waiting for the first dose of fludarabine to be administered, watching the US open golf on my Sky mobile iPad app.


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About the transplant

After talking with the doctor yesterday, I thought I would share some of the ideas behind the transplant ...

I am having a "reduced intensity" transplant. In a "normal" transplant, the host bone marrow is totally wiped out using very strong chemo drugs and full body radio therapy, before the donor cells are injected. However, at my age, the risks of doing this to me outweigh the benefits. Instead, I will have a much gentler chemo regime before the donor cells are injected, combined with immune suppressant treatment. The immune suppressants work both on my residual immune system, to stop it attacking the donor cells, and on the donor cells immune system to suppress it attacking my body. The latter if called "graft versus host" disease (GVHD), and attacks mainly the skin, the kidneys and the liver. However, the real "trick" with reduced intensity transplant is to get the new immune system to attack the host's leukaemia cells, known as "graft versus leukaemia effect". For a while I will have two immune systems; it is intended the stronger donor system will kill off the weaker host system. One of the ways the transplant can fail is if this does not happen, however even in this case they can take some mature White cells from Harry and inject them into me to give the new immune system a boost.

After the initial transplant, and the time in hospital afterwards until the donor cells embed in the bone marrow, the next 100 days are key. It is a balancing act between graft versus host disease and graft versus leukaemia effect, effectively training the new immune system. The immune suppressant drug levels are varied based on weekly or biweekly blood samples. The main drug is called cyclosporine; a drug discovered 40 years ago, and still nothing better has been discovered! It is a difficult drug to use, affecting different people differently, and getting the dose right is apparently quite tough. With this drug the new immune system can be trained, literally, to do the right thing. If I get too much GVHD they increase the cyclosporine dose, which suppresses the immune system. Then the dose is gradually lessened again and the immune system knows not to attack me again, otherwise it gets more cyclosporine!

Note that it is the anti viral part of the immune system that is suppressed, whereas until now I have been concerned about bacterial infection, post transplant it is viruses that I need to worry about.

During this 100 days post transplant it is likely that I will be readmitted to hospital for one reason or another, for example a viral infection or a flare up of GVHD. One very common cause is an attack of cytomegalovirus or CMV. CMV affects about 60% of the population, lying dormant and causing no issues, until your immune system is suppressed. Luckily, both Harry and I are CMV negative, which is a real bonus post transplant. I will attend a weekly clinic, and the hospital will provide transport for me to and from the clinic.

Finally, one strange effect of the original treatment and transplant, is that the "memory" of the donor immune system is erased. We all know about this but so take it for granted - the immune system memory knows about viruses it has killed before and enables it to kill new occurrences. This is why we are vaccinated as kids. Well, my new immune system will have no memory, so after it has properly bedded in, and I am off the cyclosporine, I will be vaccinated against all the common diseases like measles, mumps and so on. And of course, as I have blogged before, my blood type will change to be the same as my brother's. Furthermore, my blood will have his DNA! One of the ways they tell if the graft has taken is to take the DNA of my blood after three months. They hope it will be all Harry's, and none of mine.

I think the whole process and it's various outcomes are fascinating.


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The final countdown

T minus 8

I am writing this post in my hotel room; I have checked back into Ambicare for hopefully the last time.

I have had another PICC line inserted. It was slightly more troublesome than the last few times, but it is all OK after the chest Xray confirmation. The only other thing we did was meet my new registrar. The transplant team is completely different; I have new doctors. This new doctor was very good I thought, explaining the process again with clarity. I signed the consent form where one of the risks listed is "death"! The conditioning chemo starts tomorrow. The first few days are apparently quite easy ...

Rose has been with me all day, and will stay the night. We need to decide where to have dinner. I forgot to mention yesterday that Rose played golf, and came 4th in her competition; just off the podium but still a good result, so well played Rose!


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The last supper

... at home for a while!

We have opened a bottle of 1998 Vieux Telegraphe, a Chateauneuf du Pape wine from the Rhone region of France. It is another lovely, rich, powerful wine; as Rose put it, "a wine to drink and put the world to rights to". We will dine outside - it is a very pleasant English Spring evening.

Tomorrow I will check in to Ambicare, and have a new PICC line inserted. The chemo starts on Thursday. I will spend 6 days in Ambicare, and then be admitted to hospital one day before the transplant. Meanwhile, my brother Harry starts his course of injections to stimulate his stem cell growth on Sunday; one per day until next Thursday, the day of the transplant. Then he comes to UCH for the stem cell harvest, and the cells will be given to me as soon as they have them. I very much hope we will see each other on the day; if I am well enough I can visit him whilst the cells are being harvested, and after he has finished he can come and see me in hospital. There is a very low risk to Harry throughout this, so I hope it all goes well for him.

This morning I vomited. It is really peculiar, because I did not feel nauseous until right before it happened, and then I just knew it would happen. I have stopped taking the anti-sickness meds - perhaps this was a mistake. I will start again this evening.

This afternoon Pete and Sharon came to visit. We sat in the garden and had a very pleasant time, although I was hoping that Pete would be able to solve one of the IQ puzzles that Rose and I cannot do; Pete is cleverer than me:) - we were at school together so I should know! Sadly he failed, but he has taken a copy of the puzzle; I have high hopes.

Tempus fugit

It is Monday. On Wednesday I go back to hospital to begin the last leg of treatment. The time has flown by, largely with me doing nothing! I have read some, watched TV, and generally relaxed before the upcoming travails. It is a strange kind of work though; I am just passively receiving whatever ... treatment, illness, and so on. Still, it is the hardest work I have ever done, but maybe that says more about my life prior to leukaemia!

I am feeling reasonably well. Rather disconcertingly I hear my blood pulsing in my ears most of the time, even when my pulse is calm. I am not sure why this is. I managed to tip the scales at 84.6kg which is 186lb or 13st 4lb; some progress at last. The nausea has more or less departed, and my appetite is good.

It was nice to see Murray win Queens. Tsonga played really well, but somehow Murray was too much. Anything less than the semis at Wimbledon will surely be a disappointment now. I wonder how much of Wimbledon I will get to see ...


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Afternoon tea

Yesterday we had a bottle of 1999 Chateau Talbot with dinner. It was absolutely gorgeous, perfectly ready to drink at 12 years after the vintage. It is a St Julien 4th growth, and had classic Bordeaux notes of coffee, tobacco and ripe black fruits.

Today it has been raining all day, so the tennis was washed out till tomorrow. But instead, we had an afternoon tea party! Paul, Raksha, Marilyn and Kim came round for tea and a chat. Rose made Irish tea cake and scones, and we had a jolly good chin-wag! They left a short while ago. It was really nice to see them; I was feeling a bit down this morning, but now I feel much better.


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A trip to the shops

Yesterday was pretty uneventful, so I did not post. Rose played golf in the afternoon and we had fish and chips for supper.

This morning we walked to the shopping centre to get a few things. It was nice for me to get some exercise, and I felt OK. This afternoon our friend Steve rang from Cornwall, which was great. Then we watched Murray give a tennis lesson to Roddick, and sadly Tsonga beat our other Brit James Ward. Let's hope the weather holds for the final tomorrow.

Although I am eating what seems to be a great amount, I am only managing to maintain my weight at 84kg. I really would like to put on another couple of kilos, but it is proving to be impossible.


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Taking it easy

I did not sleep as well last night, but I suppose well enough.

The wine did not disappoint last night! It is a great accompaniment to salmon.
Today, Rose was playing golf for her ladies scratch team, so I have been alone most of the day. I did a few small chores, and went to the chippy for lunch. Rose won her match 6 and 5, and the team also won, so well done Rose. I just watched Andy Murray go through to the next round at Queens, so overall a good day.

The nausea has definitely abated, I just have a slight distortion of taste left over. I feel better than I have felt for a while. I hope to go into the transplant as strong as I can be.


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2000 Corton Grand Cru - Tollot Beaut

Since I finished withe antibiotics yesterday, I have felt better today; less nauseous. Also, I can have a drink again, so we decided to open a good bottle of wine, as named in the title of this post. We have just tasted it! And the wine is utterly delightful; I am looking forward to drinking a glass or two with dinner.






I hope you like my new hairdo!

The rest of the day has been uneventful, except for the sighting of a hedgehog in our garden. They are getting rarer apparently, so it Is nice to see one.




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Nuclear medicine

Today we went to UCH for two tests using radioactive material at the department of nuclear medicine; a kidney function test and a cardiac function test. It was a long day!

The first thing they tried to do was insert a cannula, but my veins are so well hidden it took several attempts. Eventually we got one inserted, for the purpose of administering the radioactive stuff for the kidney test. You have to come back after 2 hours, and then at hourly intervals, and at each return they take a blood sample. But they had to take the blood from the other arm!! So, another cannula was inserted, this time by a doctor. I have well and truly been stabbed today!

For the first 2 hour break we went for a walk to Russell Square, to the post office. We came back via Pret's for lunch (I had soup). The rest of the time we spent waiting in the hospital, rather successfully doing a crossword.

The second test (heart function), involves being injected with more radioactive stuff, and then lying still inside a scanning machine for 10 minutes with your left arm stretched out above your head (so the machine gets a good look at you heart). It doesn't sound much, but I could not feel my left arm when it was finished.

We were finished at about 3:30, and home by 5. We left home at 8:45am, so it has been a full day, and for Rose, of basically sitting in waiting areas. I am so grateful she was with me.

Last night for dinner we had a potato pie that was really delicious. The recipe comes from Yotam Ottolenghi's book called "Plenty".


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Dental checkup

Today we went back to UCH for a dental checkup after the extraction two weeks ago. The two weeks ave flown by it seems, I guess because they have been quite eventful, as recorded in this blog.

Before seeing the dentist, I had to go to the bone marrow transplant (BMT) clinic to give some more blood samples that they did not take last time. But the nurses there could not find a vein! The veins in my arms have all but shut down, and after 4 attempts they gave up; I had to get an experienced phlebotomist to take the blood (which she did rather easily).

The dental checkup was fine. The soluble suture has not yet dissolved, but  it hurt too much when she tried to remove it manually, so it can dissolve at its own pace!

On the way home we stopped off to pick up Rose's new reading glasses, and finally got home just before 2pm.

My nausea is still pretty bad, stealing my appetite and washing the colour out of life. I am now drinking 2 or 3 of the high calorie drinks to try and keep my weight. I only have one more day on the antibiotics, which might be exacerbating the nausea, so I am hopeful for some improvement in the nausea on Wednesday. We shall see ...

Yet another lazy Sunday

This morning Chris and Harriet popped round for a visit, which was very nice, especially as Rose has not seen them for a while.

There is not much change in my condition; still nauseous, but the diarrhoea has alleviated somewhat.

Rose cooked scones, and we had some with clotted cream and strawberry jam. Even my nausea could not prevent me enjoying them.

I am currently watching the tennis; it looks like Nadal has the match in his pocket.


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Continuing nausea

This morning I took the stool sample to my local hospital, who also took blood for a blood count. The phlebotomist was clumsy, and I have a bruised inner elbow. Then I went into town to pick up my prescription for high calorie drinks. These are little 125mm drinks that contain 300 calories, and can be used to supplement the diet.

My diarrhea is better today (not so frequent) but the nausea has returned quite strongly (I feel sick as I write). I am trying out a patch that you stick on behind your ear. Each patch lasts 72 hours. So far, I am not impressed! I think the cocktail of pills was better. Looks like I spoke too soon when I thought the nausea was wearing off after the last chemo. I have had two of the high calorie drinks today. Meanwhile, Rose continues to cook delicious meals that I am unable to enjoy, which is very frustrating. I appreciate very much the care she takes and the effort she makes.

Li Na did well to win Roland Garros. I wanted Schiavone to win, but she just wasn't good enough. She had to rely on Li choking (like in Melbourne). I am looking forward to Federer and Nadal ...

I walk a rocky road

I have diarrhea. The antibiotics I am taking for the PICC line infection are probably the cause. I have been asked to take a stool sample. Those of you who have already done this know it is unpleasant at the best of times. Still, we need to know if I have the C-Diff bug, because if I do not I can at least take medication to alleviate the diarrhea. I will take the sample to my local hospital's pathology lab tomorrow morning. On the plus side, my haemorrhoid has gone away, so at least I don't have a double wammy!

So far, the diarrhea has not affected my general health, and I feel OK. Even the nausea seems to be abating a little bit - it is two weeks since my last dose of chemo so maybe it is just naturally going away. I am scaling back on my anti -sickness drugs to check this hypothesis ...

The weather has been beautiful here today, if a little breezy. So apart from the diarrhea it has been a pleasant day.

Shame Murray got beaten by Nadal, but Nadal was simply too good.

Meeting the transplant team

Today Rose and I went to the hospital to meet the transplant team. I also had another bone marrow biopsy.

The transplant will be a "reduced intensity" regime; the alternative being "high intensity". The difference is that the high intensity kills all the immune system in the host, before the donor cells are infused. With low intensity, the host immune system is suppressed, but would recover if left long enough. The theory behind the reduced intensity approach is that the donor white cells will kill off any remaining host stem cells. The risks of a relapse with high intensity treatment is lower, but the risk of death during the transplant phase increases with age. If I were 30 instead of 50, I would probably have the high intensity treatment.

The pre-transplant chemo (called conditioning) is done in Ambicare. The day before the transplant I will be admitted, and the transplant infused (there is no operation - it is just the stem cells that were harvested from my brother that are infused IV the same as any other blood product). There then follows a few weeks in hospital where I will have no immune system. Infections are certain in a similar way to the first two cycles of chemo. During this time I will be hooked up to IV drips 24/7. In particular I get cyclosporin, which suppresses the lymphocytes of of the donor cells (the anti-viral agents), so that I do not get "graft versus host disease" (GVHD) too badly. After a couple of weeks they expect the donor cells to engraft, and my counts will return, but I stay on the cyclosporin. Once my counts recover (the donor cells engraft), they try and wean me off IV to oral medication so that I can go home. During this whole period I will inevitably get an infection; they say 1 in 3 patients spend some time in intensive care (something I have avoided so far).

After being sent home, the first 3 months are pretty bad. I will be weak, and maybe unable to get up on some days. I will visit a clinic once a week, and the hospital send transport to get me. The levels of cyclosporin are gradually reduced (giving me the ability to fight viral infection), and some GVHD is expected, even desired, as it will kill any remaining leukemic cells. The next 3 months should see me gradually regaining strength, and so clinic visits are only bi-weekly (and the hospital will not send transport anymore as they deem public transport to be safe). During this time it is not uncommon to be readmitted to hospital to treat some viral infection.

There are not very good mass test figures to derive outcome probabilities, but broadly I have a 85 - 90% chance of surviving the transplant and the subsequent weeks in hospital, and a 40% chance of surviving 5 years after. This chance increases after 18 months - i.e. most relapses happen within 18 months of transplant.