Chemo Chicken and The Hot Tumours

Final Meeting with Consultant

2005-05-11T17:28:00.000+01:00

A year ago, after two biopsies, Patrick Axon told me that the lump on my neck was not malignant. He was wrong. A year later, Robert Marcus tells me that I am in full remission. He added that those Hodgkin’s patients with a negative PET scan hardly ever relapse. Lets hope he is right. He further told me that ABVD treatment is not in itself carcinogenic (unlike what was contained in the consent form). The sun is bursting out all over, I guess. I go back in September for a check-up. Indeed I will be checked every 3 or 4 months over the next two years.

For the moment I am very relieved. And tomorrow I need to make a start on getting together some kind of career. That will be a far more difficult task than chemo was...never mind...I have some plans.

An American colleague wrote this: “Es giebt so viele Morgenrothen, die noch nicht geleuchtet haben.” He must think I speak German because I have a habit of greeting people in german. Like Guten abend, Sieg Heil etc. School boyish behaviour I know but there you are. In reality, aside from a few such words and some names of yummy dishes, I haven’t got a clue about the German language. Anyway, here is a translation: " There are so many dawns yet to glow.” I hope so. And I hope to see them with my Laura and Pavel. Adios.

Those two words

2005-05-06T14:15:00.000+01:00

G phoned to say that RM thinks I am in "complete remission."

How do I feel? Strangely I don't feel elated. Having stayed up all night for the election results and seeing Bliar as PM again is obviously having a dampening effect. I am of course relieved that I am not going to have chemo. Nevertheless at the back of my mind, I am wondering if I really am in complete remission. Perhaps they have got it wrong..? There is no room for mistakes now....I am still considering taking my initial mis-diagnosis case further against the hospital. They will discuss my case next wednesday and will tell me how to proceed then.

And yes lets say it again - relieved and happy for my family.

Scan Result

2005-05-05T13:29:00.000+01:00

Waiting for oncology to phone is like waiting for Godot. So I called G. Nurse G that is - not Godot.

"It looks like the scan is negative. There is no significant activity in the chest or abdomen."

Hmm. I didn't really want to hear the qualifications and caveats but still ...its promising. She said she would show the scan results to RM ( my consultant) and maybe he will give me more feedback this week. Otherwise I will need to wait for the multi-disciplinary team meeting next wednesday. Not popping the champagne yet but its looking good.

Positron Emission Tomography (Pet Scan)

2005-04-28T14:28:00.000+01:00

Was met at the Wolfson Brain Imaging Centre by an american radiographer with a glorious name. She had the usual difficulties with the IV injection but was good humoured about it. And thankfully I didn't faint. This procedure requires one to lie still for one hour and ten minutes. There is a cushion under your knees and you are strapped in. The head is placed in a kind of holder. Then you enter the machine. Not for claustrophobia sufferers or fat people. And if you have an itch - god help you. Just before I entered the thing, this itch above my right eyebrow was driving me mad. I had no choice but to get an assistant out of the control room and scratch it for me...! The bed moves every 6 minutes to scan a different part of the body. You can take a CD along with you - I was going to choose South African freedom songs but as Pavel sings these now (even in bed!) I thought it would be too emotional and not good for lying still. So I took some along some Cuban Son music - certainly it cheered up the radiographer.

I am currently radioactive and have to stay away from pregnant women and small children for nine and a half hours after the injection. I shan't be able to kiss the little boy goodnight. Results next week. Fingers crossed please.

Andre Gunder Frank - email from his son

2005-04-23T15:02:00.000+01:00

Dear friends and colleagues of Gunder’s,

We are writing to let you know that Gunder died early this morning. He fought cancer with great courage, and was still working until two weeks ago, though in recent weeks he worked fewer and fewer hours every day because of pain and exhaustion. He worked with more strength and determination than we have the words to tell - until his body gave up. In the last couple of days, all he could do was to hold our hands.

In the last three days, we have received more than a thousand e-mail messages of condolence, remembrance, and friendship from friends and colleagues of Gunder’s all over the world. Paul has tried to answer each message individually. Please forgive us if we don’t reply to each message we receive in response to this.

We, Gunder’s family, will have a small gathering to express our love for Gunder before he is cremated on Tuesday afternoon, April 26 in the Luxembourg crematory. Friends and colleagues who wish or are able to attend are welcome to come. We know from hundreds of messages that most friends who would like to be here will not be able to travel on such short notice.

PET SCAN DATE

2005-04-15T10:07:00.000+01:00

My scan is on 28th April. I will have the results the monday afterwards I suspect. Will update the blog then. Cheers.

Hope and optimism

2005-04-13T16:49:00.000+01:00

After weighing me, they called me from the blood room. I went in and said there is a possibility I might not be having chemo tomorrow. They looked at me askance but let me off…I saved my arm.

I waited an hour before RM saw me. He thinks I am out of it and in remission. He is “fairly to very confident” about it. In the old days, he told me, he would send me home and tell me to come back in three months. However as we have access to a Pet scan – that is the next step. If the scan is negative, my remission status will have been confirmed. This pet scan will happen in the next two weeks.

Folks, comrades, friends – I gave this blog address to a select few way back in October 2004. I hoped you would stay with me during these treatment months. It seems you have. So thank you. Thank you also for your emails, sms, prayers, good wishes, food, clothing, music, books etc. Next time I will get a list at John Lewis or Selfridges or something to make it easier for you …. I am happy to say that I am going to close this blog today. It is of course always possible that the Pet scan will be positive and I will have to continue treatment. I will write a note on this blog after the scan.

So our doors are open again... Come and visit. Lets get back to life. With love. SR

Well...

2005-04-13T09:38:00.000+01:00

Around 3 today I will see RM re what is to be done.

What is interesting is that I never did book chemo for tomorrow but its been done for me by Oncology. So I guess we know what is in store....I will update you, dear reader, later today. It is possible they will pet scan me before further chemo. If that is the case, I want to go somewhere this weekend - any suggestions anyone? Needs to be doable by Easyjet or Ryanair.

Need (more) Money

2005-04-12T10:06:00.000+01:00

A year of ill health, of uncertainty, of endless hospital visits, of disrupted work and social life and at least six months of moaning and whingeing on the world wide web. Bet you are as fed up as I am. I will be whining even more if I don’t get back to work soon. Not only is lack of activity doing my head in but we will soon need to write off to Sir/Saint Bob Geldof for food aid if I don’t start earning lolly. ( Did anyone see that wally telling Museveni to go? I always used to be against generalisations about the Irish but I am changing my mind rapidly…)

I guess I could sell things on e-bay to make ends meet. Some nutter managed to sell his soul (yes not kidding). And some are selling their votes in the forthcoming elections (illegal but going for between 15p and £5). I am gonna try my luck with Tracy Ermin type snaps of my sweat drenched bed as discussed before. If you want to get your orders in please do so now.

I stepped out today!

2005-04-10T14:43:00.000+01:00

Managed to go out for breakfast today. It was bright but deceptively cold. The wind cut thru' me. I came back and conked out for two hours.

Here is yet another article about the virtues of early CT scanning. Please take note Mr Eminent Professor Sissons, Darwin College, Cambridge. Those of you who don't remember him from earlier entries - he is the geezer who made me wait a huge amount of time before my first CT scan. He would keep asking - "is there any possibility that you have HIV?" Darkie=aids candidate, I guess. Total wally. (He will be hearing from me shortly - I am waiting for the low down on wednesday).

Got a Tesco near your? Let them know you disapprove of how they treat people in South Africa. And by the way, that company makes £250,000 an hour profit. Read here.

Preliminary Feedback

2005-04-09T01:31:00.000+01:00

Not such great news. Some tumours in the abdomen have remained the same size since the last scan in january. Will get an interpretation of this on wednesday. I guess - either these are scar tissue or they are tumours which are not responding to treatment.

How will i feel on wednesday if the latter is the case? Many years ago when i first travelled abroad without my parents I was wrongly turned away by the Spanish border police and told to get a visa in Morocco (I was carrying a Bangladesh passport hence the visa). Going back to a place on my own where the bleedin natives had robbed me of my possessions and fleeced me was not a great prospect. But i remember remarking to B+R that "it was getting sharp" and I was certainly up for it. I had exactly the same response to the confirmation of my cancer on sept 29 2004 after many months of operations and tests. It was sharp but i was up for it. I am not saying dark and frightening thoughts did not enter my head – of course they did both before and after the news. But that was my initial reaction to the confirmation of my cancer. I wonder how I will take it on wednesday.

Oh I musn’t forget to moan: I am breathless, drowsy, feverish, confined to bed and bleedin cheesed off. My wife and kid do not deserve this.

Moan, moan, moan

2005-04-06T10:58:00.000+01:00

So the CT scan is happening in about 3 hours. Now you have to lie flat for the CT scan. In the early hours of this morning I could not lie down flat. Yes its the bloody kidney stone. This pain is different from the one I experienced on sunday. I have taken some strong pain killers - zydol - and that has improved matters. My temperature remains high and I am breathless. A tripple whammy if you like and somewhat inconvenient to say the least. I know I sound like a first grade moanie bag but what can I do?

The kitchen has arrived. However cupboard doors will take another week. So much for German efficiency....Shouting at the installers did not help my condition but I have got them to return the fitting charge.

Fever and corpses

2005-04-05T16:55:00.000+01:00

High fever 39.1 centigrade. Too scared to phone C10 and so phoned oncology. They did not insist that I go in. Thank goodness for Dr MB.

Did you see the macabre carry on in the vatican? Dearie me. And the poles want his heart. I read this article about how Pope Pius - forget his number tag - was photographed in his death throes by his life long confidante and doctor. The doctor then went onto publish the grisly photos. He also embalmed the pontiff using what he said were ancient christian methods. These did not work and the corpse started decomposing..he turned purple and the nose fell off etc. The doctor got struck off and suitably castigated..This Pius bloke you should remember is the same pope who came to an agreement with old Adolf Hitler. Read here And if you want to read the failings of Pope John Paul "the Great" read here.

Heart Scan and Delays

2005-04-04T16:37:00.000+01:00

Heart Scan today. Again they shoved the butterfly around and again like the time before with nurse C, I started to lose consciousness. Last time I did feint. This time we stopped in time. Four nurses in all prodded around to find a vein. The hands yielded nothing. The arm was successful after several failed attempts. How will I receive chemo I asked myself… I have been drowsy all day because of the analgesic prescribed yesterday. I am pale and have a slightly raised temperature.

RM is going on holiday on Wednesday. He won’t be around to see the scan results. However he wants to be involved in the decision of the team and so he has postponed my chemo appointment for another week. Delay won’t affect anything adversely he told nurse G to tell me…. My treatment is now fitted around my consultant’s vacation timetable. My kidney stone situation is uncertain. Intervention is not really possible if chemo continues. Or is it?

The last few weeks have been great but now suddenly I seem to be in the middle of greater uncertainty.

Yuk

2005-04-03T17:06:00.000+01:00

If you expected philosophy in this blog – I guess you have given up by now. No I prefer to deal with the quotidian aspects of my cancer. Like today. Sunny, warm day. M and children came around. M said I was looking great. A said so also. Ten minutes later I was writhing about on the floor in diabolical pain. I have never known pain like this. The emergency doctor came an hour later. She offered morphine or something up my bottom. I shan’t say which I chose. I give a hint in the title ;) She reckons it’s my kidney. Great. Just flipping great. My philosophical take on this: Bugger it.

Blog

2005-04-03T12:26:00.000+01:00

Three more days. I hope to end the blog then. Missed you all and need to rejoin normality. We will see.

Tumours galore

2005-04-02T07:51:00.000+01:00

Took my cousin to Ely cathedral yesterday – about twenty minutes by train from Cambridge. The cathedral turns out to be the site of a shrine to St Etheldreda. She died of a throat tumour (around one thousand three hundred years ago). I couldn’t believe it. It seems I can’t get away from tumours even on a bleedin’ day trip. Anyway, her story takes a turn when they exhumed her body some years later and found that the tumour had healed and her body was well preserved….hmm. Read more about her here.

Remaining with religious personages, I find the blow by blow account of the pope’s deteriorating health rather distressing. Usually when a celebrity snuffs it you don’t get this detailed account of the last stages. You simply hear that they have died and the cause. With Pope John Paul however we are getting a full medical account of the last moments of his life. Stuff about renal failure, other major organ failure, septic shock, cardio-circulatory collapse etc. You have a bishop addressing a press pack telling them about the pope’s severe breathing difficulties and that he has never seen him in “such a state” and then you get the gobbledegook about how “lucid and serene” the pope is. Its all tied up with the church’s thing about affliction and suffering no doubt…..I find myself distressed and riveted at the same time. Distressed because the powerlessness of these hours is awful and riveted because I have often contemplated – in recent days – how one actually cops it with cancer. And it can be as above. Cancer can cause major organ failure and then you have the associated problems and then you are finished.

What a cheerful post I have managed to write.

Bulthaup, Builders and Bollywood

2005-04-01T06:30:00.000+01:00

I am feeling well. I am apparently looking well accordingly to all and sundry. That I harbour this disease seems unreal. I am not sure how I will feel if the scan next week indicates I should continue treatment. I suspect I am resigned to it. My immediate worry is a minor one – will they find veins in my hands for the four remaining treatments? I know that going to eight months is not as “good” as stopping at six. There are long term morbidity issues ( other cancers, heart or lung damage) arising out of ABVD treatment and the longer it goes on the more probable …I shan’t finish that sentence. Read here for a summary of treatment and prognosis.

After yesterday's post, I find I have two Reiki practitioners rooting for me. Get to it folks...(and someday kindly explain it all to sceptical old me).

Having this house to finish has helped shove all these problematic thoughts onto the back burner. When you have no drinking water in the house and the builders are not turning up you don’t worry about the possibility of contracting myelotic leukaemia in ten year’s time…. Rather one looks forward to one’s swank Bulthaup kitchen! ( You only live once, folks). Yesterday the furniture arrived displacing us from the entire ground floor. Last night we invaded M’s house together with my cousin. It was damn good to eat some home cooked food. And M's latest Bolly recommendation: Choker Bali (thats how you say it and mean's Intimate friend in Bangla) with Ashwairya Rai.

7th Cycle

2005-03-31T06:46:00.000+01:00

Today is the scheduled chemo day. However as this is the start of the 7th cycle (or month), they need to heart scan me (next Monday) and CT scan me (next Wednesday). If the heart scan is ok and the CT is indicative of lingering tumours, I will get chemo on 7th April. One would have thought they would have taken care to do the scans in time for me to receive chemo today like the other patients...but no. My consultant’s excuse or should I say reasoning is that he wants to see the maximum impact of the last session and hence the extra week. Sounds a bit convenient as I wrote on March 19th. Well maybe I am a borderline case. Nevertheless I shall be writing him directly and asking him to confirm that there are no clinical implications of this delay. I am hoping for a CT scan which depicts full remission. If that is the case, they will PET scan me – this should tell us within certain confidence levels whether we have cooked the tumours or not. Those of you practising Reiki (ie you L) could you please kindly home in on the last remaining biggies of size 1cm and above? Ta much.

Online

2005-03-30T17:50:00.000+01:00

Having set up e-commerce sites for charities and small business, I naturally wondered whether there are sites out there for cancer/chemo patients. And yes sir there are. Check these men's eyebrows you can buy online for $32.99 from http://www.headcovers.com

And check this lovely model - I mean the lovely turban on the model of course. Enterprise was started by a former cancer patient.

Slush

2005-03-29T06:18:00.000+01:00

Paris has figured in some significant moments in my life - I came here with my first serious girlfriend. I was here during one of the biggest anti-nazi marches I have ever seen (1980 or 1981 during that period when synagogues were being firebombed). I was here for Dulcie September's funeral when the streets around Pere La Chaise were covered in the black, green and gold colours of the ANC and the red of the SACP and PCF.I was also here for the momentous World Cup final when France gubbed Brazil - an event that had significance not just for football but for the national question in France. I came here with Laura during our courting days - indeed twice in two months and once it was to attend a weird North Korean conference where she met Gerry Adams! She confessed to wondering about me at that point... And we are now here with Pavel during uncertain times for my family. And which trip of the many trips do you think I enjoyed most? Yes of course they are all vastly, wildly different BUT seeing Pavel enjoy Paris the way he did…..yup ok I had better stop before I get too slushy.

Got back yesterday. I suddenly realised I have not booked chemo for 7th April. Wishful thinking I guess.

Paris

2005-03-25T19:51:00.000Z

Happy that we are here in Paris with Pavel. And Paris welcomed us with sunshine and warmth

Spring..

2005-03-24T13:13:00.000Z

Spring is in the air. Paris beckons and so we are off to the rive gauche, daahlings. Back after the weekend. Will blog in between mouthfulls of couscous, merguez, pommes frites avec moutard etc. Second week after chemo and I am hungry...

John Reid - the hooligan secretary of state for health and champion of working class smokers - was holding a dialogue yesterday about breast cancer, delays and postcode lottery surrounding treatment and diagnosis. Read here.

Got my heart scan date - 4th April.

Schiavo case and ...

2005-03-23T07:37:00.000Z

The Terri Schiavo case in the States illustrates the importance of writing living wills. I guess I had better get one done. It also illustrates the hypocrisy of Republicans who cut Medicaid and then talk about “the culture of life.”

PR wrote last night re how the hospital noticed something on his wife’s kidney last December (in addition to her breast cancer) but failed to CT scan. They are doing it now – months later. My only advice would be to ensure that you complain. I know how easy it is to just think about the treatment – but its equally important to put this on record. I, too, just want to get better. I really don’t want to pick a fight with the chaps who delayed my treatment but on the other hand I have to…I would not be in this state were it not for their negligence...

He he he

2005-03-22T13:02:00.000Z

I have been rather naughty today. Chemo has bit hard and so I lay in bed and SMS-ed a few friends…( well three)...friends who have not been in touch since hearing my news last autumn. All south asian. And guess what? Not one has replied. Quite incredible. Obscurantist behaviour lives on ...I will come back and haunt the bastards if I die.

Mazeltov to M and Y on the birth of their new baby!

Rudderless

2005-03-21T17:37:00.000Z

Chemo from last thursday caught up with me today. Its getting more and more difficult.

Paul's brother is incarcerated in C10 and is having a hard time of it (see post of 28 February). Bringing up food and rash all over his body. I would like to see him but its problematic as he is in isolation.

I feel rudderless. I was so hoping march 17th would be it. Rudderless and I am not even in the storm. Will I be?

Today is the anniversary of the Sharpeville massacre. Here is P infront of the Hector Pieterson memorial.

Dina Rabinovitch

2005-03-20T10:15:00.000Z

Dina Rabinovitch has been writing a fortnightly column for G2 about her breast cancer treatment. She is pregnant too...You can read it here

Still on a high from SA. Listening to some CDs I brought back.

Noreena, gloom and furniture

2005-03-19T05:30:00.000Z

The consultant says he wants to see the full impact of the last treatment, and hence the 3 week interval is ok. Convenient eh? I think the delayed CT scan schedule has more to do with this explanation than anything else. Anyway, if the tumours have reached a plateau they will PET scan me to determine whether the visible tumours are scar tissue or active in anyway. If they are shrinking further, he is of the opinion to zap them for two more months. It's caused a bit of gloom around here. I am not thinking about it. Heart scan sounds nasty though with radioactive markers injected and a two hour process in all.

Still the new furniture is arriving within the next couple of weeks. Out with the antiques and in with plastic, glass and leather!! Why? I look older than those antiques, I tell you. Hoping all the funky new stuff will distract visitors.

I mistakenly wrote in the blog of 23 Feb that Noreena Hertz was at the Judge Management Institute in Cambridge. She has taken a promotion (a professorial appointment no less) and moved to the University of Utrecht. She has written an article in the Guardian today about the nomination of that arch hawk Wolfowitz to the World Bank by Bush. Unbelievable two fingers up to the issue of development. Poodle Blair has of course not opposed it. Read it here : The poodle and the Wolf.

Last Chemo?

2005-03-18T05:51:00.000Z

Ever made grand plans only to find out that you have to scrap them because some smart alec has decided to not divulge essential information? Not nice. Well it was the last chemo yesterday. Or so we all thought, hoped for, planned for etc. Dr W had other plans. The textbook approach to those who are not in full remission at 4 months is that they go to 8 months. Yesterday is the first I heard about this. However before one goes to 8 months, one needs a further CT Scan and a heart scan. Now my CT falls on the 6th April – and that means I will have chemo three weeks from now if the bastard 1.5cm tumour behind my aorta has not shrunk. Not two weeks. All the other patients I know who are going for 8 months are on schedule. They had or will have chemo in two weekly intervals. Dr W was not aware that I already have had one delayed chemo application. And each delay complicates issues. I asked my consultant’s views on this – they will get back to me today. So this is potentially not good news – if it is the case, then you will have to stick by me for yet another two months. I could have been told this ages ago and they could have sorted out the scan to sync with the chemo….still if it has to be eight then it has to be. I would rather another two months than die, don't you think?

South Africa: it was an incredible tonic. What can I say? Firstly, thank you to everyone of you down there. It was great to meet up and thank you for all your continuing support. To those in Durban, Cape Town, Mpumalanga - next time folks, I promise. Secondly, why the bloody hell did I not get this treatment done there?! F - I should have listened to you.

Thirdly, I am especially pleased I managed to take Pavel there. He made friends instantly with young and old. However I think I have confused the hell out of him. The “baddies” were all policeman and soldiers. All the “goodies” he met served jail, broke out of jail or blew things up! We managed to squeeze in the Hector Pieterson* memorial, the Mandela house nearby ( both in Soweto) and Consitution Hill. Pavel snapped away with his camera and was especially intrigued by images of Buffalos (a type of armoured vehicle) and policemen carrying guns. Nevertheless, the absurdity of it all was apparent even to a five year old:

“Auntie S served over a year in a jail cell all on her own.”
“But why daddy? She only wanted good for everyone…”

*For those who don’t know Hector Pieterson – he was the school boy ( 13y) who was shot dead by the South African security forces on June 16, 1976. He was one of many hundreds. The picture of Hector’s lifeless body being carried became iconic in the struggle against apartheid. The boy who picked up his body -Mbuyisa Makhubo - was subsequently harassed by the police and disappeared to Botswana and then to Nigeria – never to be heard of again. The unrest in the country marked a turning point.

Flying back tonight

2005-03-16T17:47:00.000Z

At Joburg airport blogging wirelessly. We are all desperately sad to be leaving. Pavel has made so many mates he doesn't want to go. We get into London early morning and I get chemo in me at around 11.30am. After these few days, I am ready for anything...

Re-juvenation

2005-03-14T20:05:00.000Z

I have not been to bed before midnight in the last three days ( as opposed to 8pm). I eat hot spicy food. I don't feel tired. I get a steady stream of friends visiting and still I am not tired. Yes I know this is the second week after chemo - but even then I can't explain my levels of energy. South Africa? South Africans?

During the 1994 elections, I was reporting for a couple of Bangladesh newspapers, doing my field work and now and then mucking about with ANC campaigners. One of these areas was the Western Areas Branch of the ANC in Durban. I first met Alec Erwin ( now a prominent cabinet member) there. I was shocked to hear yesterday that he has bone cancer. There was apparently some doubt about his cabinet position - but he is still there. Here is someone running the country whilst undergoing chemo....

Tomorrow Soweto.

Here we are

2005-03-12T20:13:00.000Z

Blogging from the Michelangelo, Sandton, Republic of South Africa. Fantastic day - despite Pavel's high temperature - great party and my first hot curries in six months. Moist eyes here and there.

Good Morning South Africa

2005-03-11T08:12:00.000Z

Howzeeet and Sawubona. The bloods came up trumps. We are on that plane tonight. Start clearing the way to Gorima’s Massala shops!

Hair after chemotherapy

2005-03-10T05:42:00.000Z

They told me the texture of my hair would change. Well its been happening. Anyone familiar with witch doctors and those juju things they use? You know the type of thing - you can purchase them in curio shops and you can flick flies with them. Made of horse hair usually. Well that is the texture. Is Brylcream any good for this kind of thing?

We have been trying to suppress our anxiety/excitement about tomorrow's blood results. If these are good, and if Pavel's temp is down, we are flying to the southern hemisphere to attend a party this weekend. We haven't talked about it at all this week - a type of emotional protection I supppose. Anyway, Laura could not contain herself anymore and asked me what my thoughts were if the trip does come off. So I told her the four things on my mind about this trip:

1. How many guests will I scare off with my looks?
2. How many will I put off their food?
3. Why do i look older than my dad who is thirty years older?
4. Will they put chilli in everything at the party?

6th April is my CT scan date. A big day.

Work

2005-03-09T17:11:00.000Z

I have been doing some work finally. Very little but still some ....and I have to say I feel exhilirated. The best part is of course, as always, telling someone off. And that I will be doing tomorrow. I should be feeling positively hyper after that.

My temperature is still ok. Of course I daren't check. I am too much of a wimp. But i feel ok.

Here we go

2005-03-08T19:00:00.000Z

Pavel is hitting 38.5 Centigrade. We are three days away from an event I would like to attend, and right on cue he develops a temperature. I can't see the funny side of this.

Late News

2005-03-08T09:00:00.000Z

The man mainly responsible for my delayed scan and diagnosis - a Professor Sissons - is now the new Regius Professor of Physic at Cambridge University. He is a fellow of Darwin - as is my wife. I will get her to heckle him.

Next scan

2005-03-08T07:20:00.000Z

My next scan will decide whether I will receive 8 months of chemo or six. Obviously there are other implications of requiring a longer treatment. Like general misery and despair... The chances of relapse are greater. The chances of an overall successful outcome are slimmer. A bummer, basically. I think if that happens I will start to get angry and finally send that second complaint letter re the extraordinary delay in my diagnosis. I have been too distracted/hesitant/misguided/confused. I have to email it.

This last chemo session has just started to bite. Face got blotchy yesterday and huge water consumption - drinking alone - is affecting my water bills I am sure. I could not have dinner last night - so some savings there.

Finger lickin' bad

2005-03-07T12:12:00.000Z

R wrote to chide me for eating KFC chickens pumped up with growth hormones and other nasties. He is right. And he should know. His entire family used to eat KFC every friday. My lame defense: after six months of chemo, and a completely knackered palate, I am afraid I will eat anything which provides some reminder of what food used to taste like.

Some people are sticking their tongues out at brain tumours. You can see them here.
Diminished responsibility I reckon...

More Lunch

2005-03-06T15:22:00.000Z

Greasy food is really a no-no but I could not resist a KFC today. Always a sociological experience going to our local Kfc. Its on East road - a rough area - and the windows are often smashed in etc. The clientele are also interesting not least those who run off with all the serviettes. Reminded me of my field work days in South Africa when the domestics would be most keen to take away my old newspapers. Oh dear...enough of that. Anyway, I had a leg and a breast. I just managed to eat it.

My wireless laptop does not work in the bedroom. And so I finally got msn and icq on my phone with gprs. I have been able to keep in touch with my contractors in the Ukraine and China. Finally thinking of work. Can't be bad. Anyway, damn useful program if you have a symbian or a pocket pc or a smart phone. Try it here: Its called Agile Messenger

Lunch and how eBay helped beat a brain tumour!

2005-03-05T15:55:00.000Z

Had a good lunch today: squid, prawns, crabsticks, fish balls, udon noodles and lots of veg in soup. Amazing. No blotchy face. Not even tired. Goodness knows what is in store tomorrow.

Pavel and Laura had a bento box each. Yummy. I just hope my lunch stays down...

End of life care begun too late: Grim reading. i wonder how things are here in the UK. Link

And some good news: A 9-year-old boy who named his brain tumor Frank is now tumor-free. "Frank is now dead and gone and never to return," David Dingman-Grover said Tuesday (Feb 23). The tumor, named after Frankenstein, gained national attention when the boy's mother created "Frank Must Die" bumper stickers, which the family auctioned on eBay to help defray the costs of surgery. After a traditional procedure proved too risky, the tumor was removed through the child's nose using fiber-optic instruments. "I knew the Lord would guide me through this," said the boy. "I'm very happy. I just want to go home and live a normal life again.

Facts

2005-03-04T16:53:00.000Z

1. I never knew that men could contract breast cancer. The phenomenon is relatively rare but nevertheless males can get it…

2. Sudan – as in the country Sudan – is not pleased with the cancer causing dye currently shaking the retail business in the UK. Why? Because the dye is called Sudan 1. They have demanded a name change and an explanation of why this carcinogenic dye has been named after Sudan!

3. Anyone see Melissa Etheridge’s performance at the grammy awards? She had no hair. She may have cancer but she is not going away…good for her. Her performance was also a tribute to the late Janis Joplin.

Also BB, thanks for writing. It was a genuine and welcome surprise. I did not mean to be short in my earlier response. Your message completed the South African side of things and that’s always important! Say hi to T also and thank him for the good wishes. Or if he reads this never-ending blog – hello mate. All success, and most importantly, good health to the both of you.

Disease as Art and Fluctuating Tumours

2005-03-03T14:34:00.000Z

Tumours don't fluctuate in size. So whatever I am feeling it ain't a tumour. That is the good piece of news Dr B communicated to me today. I must be in a sci-fi film?

I was wondering whether I should do more shots like my Tracey Ermin inspired pillow shot (see entry for 12 Feb)? Not just the pillow but the whole bleedin' bed. I would reject charges of plagiarism. More postmodern appropriation I would tell my critics. Would there be a market for high res images (or even installations) of my sweaty bed-linnen? If Nicky Serota reads this blog ( I am a friend of the Tate M after all)....Or I could do a body parts thing like that nutty Von Hagens? I am not going to die quite yet and so I was thinking more along the lines of photographs of my bleomycin stained veins? Honestly, I am not being macabre or silly. Some Alzheimer's patients, it is known, become highly creative. Faced with various limitations, they find a sudden release in art....Ok i am labouring it a bit.

Apparently I have turned pale. I will go and lie down...

Tone it down

2005-03-01T18:27:00.000Z

I have been telling people my treatment will soon end. I think I am tempting fate a little. I had better desist from expressing this optimism. Chemo on thursday. Anyone want to come and hold my hand? They give out free sandwiches...

This text from cancerhelp.org.uk :

People with cancer have described their fatigue as

* Unusual
* Excessive
* A whole body experience
* Unrelated to how much or how little they do
* Not helped by rest or sleep
* Unbelievable

I would add: bloody undeserved.

Unpleasant things

2005-02-28T17:41:00.000Z

Our carpenter, Paul, has a brother who has non-hodgkins lymphoma. He is the stoical type. Doesn’t complain and takes things as they come. They damaged his arm through chemo spillage, and he only complained afterwards when the colour turned nasty. Most of us howl with pain even if the speed of transfer of the chemo is too fast. But P’s brother…forget speed of transfer, even spillage did not elicit a complaint. They had to cut his arm open and swab the spillage. Anyway, he is at the stage of stem cell transfer: an unpleasant process and requires incarceration of up to three to four weeks in C10. They had prepared him etc, and then informed him there was no bed available. He got into C10 last friday - three days later than scheduled. These timings are obviously important and you just wonder…

Immediately after chemo the lump on my neck subsides. For two weeks now, I have not been able to feel it. Today I feel it again. So the size certainly appears to change, and today I am even aware of it without touching it. I can feel it when I move my head. Is it scar tissue? Why does it fluctuate then? Is it fluctuating? Is it all in my mind? Maybe I am growing another head.

Mellow Saturday

2005-02-26T18:35:00.000Z

A mellow day today. Apetite back, strength back and able to eat. We went out for lunch and then a little stroll. And so I shan't write anything but this beautiful poem from Korea.

Burn yourself out
don't burn by halves
burn and burn
till you turn to ashes
what use is
a halfburnt stump?

If you'd stop halfway
just don't start
stay unburnt
like greenwood
but if you're for burning
burn yourself out
burn all the way
burn to ashes

"Love" by Lee Un-sang (Rohsan)

Lady Boys of Thailand

2005-02-25T05:06:00.000Z

Its been freezing and I have noticed something. Its colder in bed than ever before. And there is a good reason. I don't have any hairs on my legs anymore. This has happened in the last week or so. I quizzed Laura whether she has been secretly applying some sort of hair removal product to my legs as part of some fetish practice when I have been comatose. Not so, she assures me. This bizarre development - my beard is intact etc - has led me to have dreams of the dysfunctional character of the Norwich radio presenter, Alan Patridge, and his ladyboy sketch. And I am the one doing the lap dancing. I think I will have words with the oncos re what they are putting in the cocktail at this stage...in the meantime, I have got enough wooly hats folks but some leather thongs would be...

Actually the person I really want to speak to is one of the chemo nurses - V. She is the nearest thing to Florence Nightingale. Conscientious, caring, sensitive, intelligent, knowledgeable - in short, she has in abundance all the important attributes of her profession. We get called from the waiting room by the nurse who will inject the chemo, and its always uplifiting to see V or M. But particularly V. She gave up work in C10 a couple of years back. The nights were too much for her. What I really want to know is what the work was like up there in that ward. How do nurses deal with the "events" that take place there..? To me that place epitomises danger. Danger one can do very little about.

I am unlikely to even get onto the subject. The banter is too lighthearted in the day unit and I guess there is good reason for that.

Isolation

2005-02-23T14:56:00.000Z

Really enjoyed reading Noreena Hertz's Silent Takeover. She is only down the road at the Judge Management Institute. I would love to attend one of her seminars - but there's the problem... One of the horrible things about this disease is its isolating effect. Remaining connected is incredibly tough. Meeting up with people - for a coffee or for lunch becomes fraught with difficulties and potentially dangerous. And entertaining is well-nigh impossible. G wrote to me a few weeks ago and asked when we could meet for a coffee. I almost cried. It stunned me how much things have changed that such a request should almost bring me to tears.

The trick now will be to end this isolation as soon as I finish chemo. We have so many things planned and its been such fun planning. Pavel has his extensive wish list, and I suspect we will not be able to stifle him....

The magic words

2005-02-22T17:26:00.000Z

Wrote a moaning email to old J and he wrote back the most amazing email ever. No nothing profound or anything like that. But he does manage to mention chilli oil. Indeed in a sentence on its own. Without even capitalisation. Dear me - am I really there? Will I actually have chilli oil soon? Is life really going to return to normal? Here is his precious email for which I have thanked him from the bottom of my heart.

Knackeredness is now part of my vocabularly [not too pleaseant is it.] you
should be ok in the next day or two. I'm beginningto feel better now but i
did feel crap this time..but be positive you only have two more
treatments left. then it's on to the curry night's again with all the
extra's etc. chilli oil.

Trees

2005-02-22T15:46:00.000Z

We have a vaulted bedroom with tall french windows. Outside I can see our tall eucalyptus and the trees of our neighbours. They are mesmerising. Today in the snow they looked so beautfiul.

Language Day - 21 February

2005-02-21T19:17:00.000Z

My namesake fell today 53 years ago. And the struggle for freedom began. And Unesco declared the day Mother Tongue Day in 1999.

Humbler objectives for me today. Old J was right. He is one ahead of me in terms of chemo sessions and he has been telling me his tiredness has grown markedly. Well I have been in bed pretty much since Friday. Food? Not even Nigella Lawson could tempt me. 7up and pears are going down ok. Tomorrow will be a better day....

Sobering figures

2005-02-20T16:51:00.000Z

Research published in the Annals of Oncology estimates there were more than 1.7 million cancer deaths in Europe in 2004 and another 2.9 million new cases. Read the BBC report here.

Third Man experience

2005-02-18T10:39:00.000Z

Mountaineers have written about a so-called "third man experience." What is it? Very briefly - in extreme circumstances they visualise talking to and receiving support from someone. All imaginary of course. This is not usually their climbing partner ( though in Messner's/Habeler's case this was) and hence the appellation "third man." We can assume that the experience is positive because chaps who experience this have survived to write about it. I had my own mini-third man experience on Mount Toubkal in 1979 in Maroc. During the night at the Neltner Hut (circa 3200m) I was feverish and I dreamt that someone came to give me paracetamols to make me better. By the morning the fever had gone. I am writing all this to make a plea to Third Men who might be out there in the East Anglia Region or the Cambridge area in particular - for f*** sake get over to my house and sort my night sweats out please. Last night I gave up sleeping at 3.25am. Pointless getting up every half hour to dry myself out. A decent night's sleep would me most welcome. Thanks.

Chemo tomorrow

2005-02-16T19:03:00.000Z

With any luck, there are three sessions of chemo left. Hopefully these will be enough to knock seven bells out of my tumours. Or even eight.

Oh by the way, a certain type of Cambridgeshire bread enriched with selenium (see above) builds immunity against cancer. Its on the BBC and so it must be true I guess?! Aren't we lucky in Cambridge?

Read the story HERE.

Johannesburg

2005-02-14T19:38:00.000Z

Got a lovely reason to visit Joburg on March 13. A dear friend's birthday. Laura and I are just jumping with excitement. My chemo session - hopefully the very last one - conveniently falls on the 17th. So if my bloods are ok, we could conceivably fly on saturday and be back by wednesday ready to be plugged the next day. Feel like punching the air and doing cartwheels (something I still have to learn). What better way to end this process than to visit friends and colleagues who shaped me so much in my formative years, to celebrate the birthday and to thank them for standing by me through these miserable 6 months. There is nothing i would like more. Its all upto my bloody bone marrow now.

To hell with it

2005-02-13T17:24:00.000Z

I have been running a temperature over 38 since thursday. Today on the web I see that Bleomycin causes fever in 30 percent of those treated with it. The oncos never mentioned this to me. Anyway, I am fed up of being fearful about it. I am sick of being afraid of C10 ward. To hell with it. I have a few weeks left of this nonsense. So let it throw what it can at me.

Asian Cancer Support Group

2005-02-12T17:20:00.000Z

Satish and Sarla Shah - husband and wife and both cancer survivors - have set up a support group in south London to specifically assist asians diagnosed with cancer. Given the taboos surrounding cancer in both the asian and wider community, I think this initiative is really welcome. Two south londoners who have confessed to reading this blog may wish to email them at oewa@btinternet.com and offer support.

So what the hell is this, I hear you ask? Well three of you have requested to see an image of my new, or rather old, visage. I am afraid I am waiting for the extra-strength anti-wrinkle bottox cream to come through before I allow that to happen. In the meantime I am posting a less offensive image of the state of my pillow after fever broke this morning around 4.30am. Enjoy!

More Reasons

2005-02-11T23:06:00.000Z

More reasons why I qualify for an OAP pass:

1. Tonight after 44 years of perfect eyesight I am finding the letters on this screen fuzzy to read. A piece of A4 paper with normal type print is similarly fuzzy

2. Walking up the stairs is a helluva thing. Shame my house is on three floors.

3. And libido. What does that mean? They tell me it will come back...

More bloods

2005-02-11T08:09:00.000Z

By the time I had arrived for my blood tests yesterday my temperature had soared to 38.9. As the nurse was about to canulate me ( for intravenous antibiotics), I insisted I had escaped four times before and I intended to do so again. So i stopped the canula and instead she took blood for tests. An agonising hour later - my neutrophils were fine. Indeed they had jumped to superman levels ( usually i am 3.2 but yesterday I was 20). Another close one.

Pavel's school report is out. Teacher had only superlatives to say. A little good news amidst all this ill health ( he has been off the whole week and its his bugs that i have got I bet).

I have a couple of interesting projects ( one is work) i have foolishly neglected. I will start on them soon but before that I am going to try and see if I can actually pass for an old age pensioner. I will try the train station first for an old person's pass.

Taking up the cudgels

2005-02-10T10:40:00.000Z

When you are bored and running a temperature ( yes over 38 and I should be heading for C10...) there is something very satisfying about having a go at someone. So I picked on my refractory business banking manager and insisted he increased my ATM limit to 500. Knowing well from past experience that he is not polished and that all conversations are recorded, and anticipating that he would refuse ( as my bank has a limit of 200) I got him to say things he soon regretted. ( Not so much the content of what he said but how he expressed them. I already knew about his lack of courtesy and professionalism). I feigned outrage and immediately filed a complaint. The upshot of it was that his boss listened to the tapes, apologised on his behalf and I now have a whopping 500 quid withdrawal limit. I have no need for this increased limit but it felt bloody good to act ( vindicitively I have to admit) on this lowly useless bastard at my bank.

Next victim of my irrational behaviour - my architect. He prefaces all remarks with "given the circumstances." He is referring to my cancer. Here are three of his recent utterances. Totally hilarious. "When your wife comes to sell the house..." ( ie I am no longer around). "Well before I answer that question on time frame, how are things at your end..." ( ie how much time have I got left ) etc . And the most direct reference : "The studio at the back of the garden - will that depend on how the chemo goes?" And all the time he thinks he is being sensitive! You gotta laugh.

Happy New Year

2005-02-09T09:20:00.000Z

Its the chinese year of the rooster folks. This rooster had better be free of chemo come April ...

Went to my favourite framers yesterday. Had an old Congress of South African Trades Union poster to frame. As it is quite delicate the framer's wife was concerned the backing paper might damage the original. She said " we have a customer who has a lot of these rare posters done. He tends not to put any acetate or backing.." After the sizes were finalised, she asked for my details. It was at this point that it dawned on her that the customer she was referring to above was ..yes...yours truly. She had not recognised me. The blotchy puffed up face had totally thrown her. She apologised and said in a concerned kind of way " how are you keeping?" This is the first time it has hit home how different I do look now from even a few months ago. I am wondering how to exploit this - discounted OAP train passes to London perhaps?

Blotchy Shrove Tuesday

2005-02-08T08:19:00.000Z

Interesting skin colouration on my face this morning. Anyone familiar with zebrano? Kind of pale and interspersed with dark striations? Thats my face this morning. I am not saying I am as attractive as high end italian design furniture - indeed rather the opposite. I look quite a sight. I might put a pancake on my face before i go out to see the architect. About two months left before the extension and kitchen are done. And my tumours too...

My veins

2005-02-07T06:06:00.000Z

Some gore for you on monday morning. I reckon my hands have two veins left for channeling the chemo. All the others are shrivelled and dried up or blocked by some sort of thrombus. Now my worry is this - if these two remaining ones are also damaged over the coming weeks, they will look to install a port in my chest. This is not a prospect I want to entertain - its robocop stuff. Currently one hand is swollen - thanks to tissue damage because of spillage from the chemo. Its this sort of daily discomfort that bothers me. Never the bigger picture. I will deal with that picture when i need to.

The Pelvis Feel Good factor

2005-02-03T16:00:00.000Z

Last week when I was told my pelvis was free of tumours I was of course very relieved. Today, before my chemo, I got to quiz the doctor more about my results. So naturally my first question was about my pelvis - it being one area of my torso which is completely free of horrid tumours. --- denotes the learned doctor's responses.

- So my pelvis is free of tumours?
--- Yes let me look in the report. Yes it is clear
- Were there any tumours there in the first place?
--- Umh. let me look at the previous report. Actually no there werent any tumours at the start.

Well, well. Great start no?

- So what is a "full remmission?"
--- Full remission is when you don't see anything. Its all clear.
- So in my case you are expecting a partial remission given that you are still seeing tumours?
--- No we expect a full remission. The difficulty is in the classification. Many of your tumours are now scar tissue. Some are as small as 7mm and we would discount these as tumours. So it is possible for you to have small areas of scar tissue but because these would show up in the CT scan your case would be declared a partial remission when indeed in reality you would be free of cancer. However it is true that in Hodgkins only a few cells need to be active within a tumour for you to have cancer. So we would need to monitor you etc.

Hmmm.

- Anything else of interest?
---Umh. yes you appear to have a kidney stone. Maybe we will get you to see an urologist after your chemo sessions are over.

How exciting!?! I now have something to look forward to. There's nothing I would love more than to start on my kidneys after all this.

Is Denmark Rubbish?

2005-02-01T07:00:00.000Z

Are you an extrovert or a neurotic? Either way - you can breathe a sigh of relief. Danish researchers have worked out you are not at an increased risk of getting cancer. Apparently popular belief held that certain personality traits were more proned to getting cancer. I must confess I have never come across this popular belief. Anyway, thanks to the danes for setting our minds at ease. We can now carry on being extroverts or neurotics with complete abandon. Read about this money wasting research here. Are other people also losing patience with the Danes? Yes and about time too. They support GW, the Iraq war and their soldiers aren't averse to abusing prisoners. I tell you Shakespeare had Denmark figured out all those centuries ago...

Twist of fate

2005-01-31T10:07:00.000Z

A very large building is going up near the chemo unit. Its going to be a cancer research centre. 23 years ago, I started my postgraduate studies at the Cancer Research Campaign, Eukaryotic Molecular Genetics Group, Department of Biochemistry, Imperial College of Science of Technology, LONDON, SW7 2AZ. I still remember the full address. Three years later I resigned my phd under a big cloud. Thats a story for another day. It changed my life. I am writing all this because I was smiling at how things have turned out: My supervisor is now a professor. One of my fellow graduate students is now a professor at Cambridge working on cancer. My wife works on mechanisms related to cancer. And I have cancer itself! You gotta laugh.

Had a raised temperature for a few hours last night. Hit 38 for about 2-3 hours. And now all fine. What is going on? I didn't ring C10. No way was I going to go in on a sunday night...

Scan Results

2005-01-27T17:42:00.000Z

I kind of knew I would not hear those words. Those words uttered by my chemo mate, J. Those two words - Full Remission. And I did not hear them when Oncology rang me today. However my tumours are responding well. They are shrinking. The pelvis area seems to be clear. An area near the kidney has a tumour about 1.5cm big and needs to shrink more. My consultant, RM, reckons I will need 2 more months of chemo. This is very encouraging news. However they will scan me again in two months and we will decide then. I will hear those words then I am pretty sure. Roll on march.

Aniseed flavoured drinks

2005-01-26T08:37:00.000Z

I had the CT scan yesterday. This is the first major scan after treatment started. Started off drinking the usual aniseed flavour drinks for an hour. Then into the chamber. No injection this time and the scan was to go from the neck to the groin. The aniseed had obviously softened me up. For the first time in a long while I let negative thoughts enter my head. What if they are still seeing tumours? J, my chemo mate, was scanned last week and he was all clear. What if I am not? Why are they taking so long? What are they looking at? And then inevitably thoughts of Pavel...and leaving the house for C10 or whatever ward. And not coming back..

Recently I have been trying to assess my neck lump. It has certainly gone down but I can still feel a fleshy lumnp. Or is it just scar tissue? Is scar tissue not harder? And I am certain I could feel less a few weeks ago..is it growing again? I will know the results in clinic next week.

Where did the snow go?

2005-01-24T07:34:00.000Z

We are down from Scotland. The snow was missing up there as resoundingly as mention of Iraq in that monkey boy's inaugural speech. What a trip it was with three weak and sick people. It took us eight hours to drive down to Cambridge. On the way up by plane, security failed to detect syringes and needles in our handbag...

So we have a week together with my parents. Sadly this week is the week I can't eat anything - cos of chemo last thursday. And so I will have to freeze all my mother's delicious nosh for next week. They are in a nice bungalow not far from us. I am hoping to convince them to move down for good..

Eid Mubarak and Chemo

2005-01-21T01:24:00.000Z

I got the all clear to fly. Called the airline to inform them about needles and noxious chemicals I will be carrying. Should be ok to fly with those things in the hand luggage (so long as I don't grow a large beard and a start wearing a turban in the meantime I guess).

Chemo yesterday and some news to turn my hair even greyer. Indeed even to make it fall out now. My chemo mate J had his 4 month CT scan yesterday and was told he is in full remission. Basically no tumours could be detected. HOWEVER he still might be given four more months of treatment ( 8 months in all). I was really hoping this treatment would only go to six months - but if J is given eight months (and he was stage 2 whereas I was stage 3 - a more advanced stage of disease) I suspect I will also be given the same term. My scan is next week. But good for J. I hope he is given only two more months. I will miss the un-pc jokes and general banter we share. I must atleast try and bag some discounted tickets from him - he works for an airline.

Eid-al-Adha today or tomorrow. Not that i am religious in any way...but i was wondering if eid is becoming/has become a commercial event like xmas is in the west. Of course for Saudi it always has been. Last year's pilgrimage earned it $1.38bn from about 1.4million foreigners. And that number is projected to grow. House of Saud has a lot at stake...If you read news from the Gulf about issues concerning charity and distribution of food to the poor and needy at this time, as one does when one has 4 more months of chemo left - bugger! - you will shake your head in disbelief at how this central pillar of islam actually works out. Like most things about this weird place I guess.

Chasing snow

2005-01-19T06:42:00.000Z

Its been snowing in Scotland and I want to see the stuff on the hills. I called oncology for permission to fly this friday. It will depend on my platelet count, they said. If its too low the high pressure in the plane's cabin will leave me in a big bloody mess on the floor. I will found out today but so far my platelets have been doing their bit for queen and country fully. So I am hoping to be in bonnie Glasgae this weekend.

A week ago I received a letter from the Health Care Commission in my continuing struggle to get some answers concerning the delay in my diagnosis. I am going to muster the energy this week to make my second submission.

Taboo

2005-01-14T13:54:00.000Z

I have been scouring the net for sometime for decent cancer jokes. There are very few to be found and they are ALL very unfunny. As some of you know I have been making up one or two myself - they are a bit too "toilet" to go down on the blog sadly. The good news is that today I finally found a mildly amusing one on the net. I reproduce it here without the author's permission...

An elderly man was not feeling well for a few weeks, and so finally went to his doctor. His doctor asked him to come back in a week for the test results.

"I've got some bad news," said the doctor when the man arrived, "I'm sorry to tell you this but you have Alzheimer's and cancer."

The man sat stunned for a moment, and then replied, "Well, thank goodness I don't have cancer".

Hospital Nostalgia

2005-01-13T08:18:00.000Z

We have spent so much time in hospitals over the last three years that its got to the stage we feel nostalgic about them. Its a bit like the bond that develops between hostages and their captors. Hostages - so i read - soon develop some kind of perverse "rapport" or "relationship" with their captors...read the psychobabble on google if you want. Anyway, Laura and I often find ourselves reminiscing about the hospitals we have seen. We talk about the nurses, the wards, the cafes located in the foyers etc. Singapore is a favourite of course. Mount Elizabeth holds lots of memories not least the amazing Takashimaya shopping centre located opposite.

Dhaka's Holy Cross and Red Crescent - yes its origins are christian and muslim - holds memories too. Of cats in the Cardiac Care Unit, of piles of rubbish being fed upon by crows in those cold winter days we were there, of the nurses and orderlies waiting for bakshish on the day of discharge, of the politicisation of the hosptial notice boards etc. We love talking about it all. The main reason we do is probably because the overall story had a happy ending. We rescued my mum from Dhaka and got her sorted in Singapore. I hope we will have similar happy/interesting memories of Addenbrookes.

Call time

2005-01-11T22:14:00.000Z

Could someone call time please on this chemo lark? Am i allowed to wake up now? Can I pay more and fast track this whole thing? I know I am probably half-way through but boy that fact does not help in the slightest bit. And yes another thing - the next person to tell me to keep a positive attitude will be physically assaulted. The number of people who repeat that inane mantra ...will you please understand that the problem is not about being positive? Give me a deadly disease and believe me I will move electrons to become positive. The problem rather is about the daily struggle to eat, shit, work and live.

Is the frustration showing?....yup, I am losing it.

Thai disaster

2005-01-10T19:40:00.000Z

No not the tsunami disaster but the thai meal I ordered. Poor Mrs P is not well and so her younger sister sent three dishes. This is to be a regular thing three days a week. Not only were the dishes tasteless and oily but the servings were enough for about one person in total. I will send a vicious note with my cancellation order tomorrow. I am so frustrated with this food thing I don't know where to turn....Check this chicken stir fried with some veg and soy sauce. I mean what the hell?

Pavel's nanny turned out ok and thats a relief.

Rest day

2005-01-09T09:55:00.000Z

A bit breathless going up stairs. Feel like an old man. Need to check with doctors re my latest chest x-ray. One of the drugs - Bleomycin - is a problem for the chest. However cold etc finally gone by yesterday after only a mere 25 days...

Found tons of old photos from all over the world. Will spend the day sorting and sticking into albums. Starting next week we will get help from a nanny with Pavel and we are trying out a thai cook three times a week! "Yummo" as Pavel says.

Oh and Laura injected me today with GCSF. Pretty good.

Borderline

2005-01-06T16:52:00.000Z

The old bone marrow is not producing as it should. So for the first time I will be taking some daily injections to coax my bone marrow into raising my neutrophil levels. On tuesday I was down to 1.1 (dont know what units these are in but borderline I am told between safe and unsafe).

Influenza

2005-01-04T13:59:00.000Z

I have influenza A. They are now figuring out how to give me chemo this thursday without having me in the day unit. I am a danger to immune-compromised patients. What a winter I am having. Pneumonia followed by Influenza.

fickle

2005-01-03T05:45:00.000Z

Yes I confess I have broken my "no restaurants" resolution. Hey! I have a good excuse. I managed to lose 4kg in about 9 days and I wanted to put some weight back on. To all dieters - forget diets and instead get a high fever of say 39.3degrees C and do some serious night sweating. This last bout of night sweats has been extreme and a bit like when i was incarcerated in C10 ward. Water literally drips from my head. And there's plenty of body sweat too. Its like i have been in a rave or something. I need a towel to dry myself off. And not just once but several times during the night. In the morning there are usually 3-5 discarded t shirts in the basket. Quite extraordinary. Yup Laura has been in the spare room these nights.

Looking back

2005-01-02T09:38:00.000Z

Hot Water Bag status: finally shook off temperature yesterday. Cold remains - it has lasted three weeks. It obviously likes me.

Taste Bud status: with chemo and antibiotics both hard at work, everything tastes the same. I reckon in this current state I could even eat a whole plate of Bobotie - the most disgusting dish in the southern hemisphere and available by the bucketful in Cape Town.

The end of 2004 was nightmarish. Many lost their lives to the tsunami. Susan Sontag was claimed by leukemia. I understand that she suffered on and off from cancer since the 1970s when she was first diagnosed with breast cancer. Someone once told me about her book "Illness as metaphor" - I have decided to read it finally.

Earlier in the year, and on a personal level, I learned that my father has been suffering from progressive supranuclear palsy. Its a disease affecting the brain. The prognosis is dire. My poor dad - he was very active even after his retirement as a consultant. The hospitals still ring him now to offer him jobs. He can hardly walk unaided and is proned to falling. He retains his faculties thankfully.

So good riddens to 2004 and I look forward to 2005 albeit with some trepidation.

New Year's Resolutions

2004-12-31T07:21:00.000Z

No 1: I am gonna be the Howard Hughes of Hodgkin's disease. Yup -no more going out to restaurants, shops, etc. I followed medical advice to lead as normal a life as possible. And what did it do to me? It made me Mr Hot Water Bag on three horrible occasions. I can't take this temperature yo-yo-ing anymore. So my incarceration begins today. I might not quite wear tissue boxes on my feet like Mr Hughes did to keep germs away but I have gotta do something. Cambridge will miss my spending power...

No 2: Iraq and new labour. What did they do to me? I can't take their criminal distortions anymore and I have to reaffirm my faith in things. So 2005, cancer permitting, I have got to do my bit for some of the things we value: honesty, decency, beauty, truth, e/quality, compassion, liberty, peace. Arundathi Roy put it "innocently" and strikingly a few years ago:

To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand.

I will start by designing a "Hang Blair" poster.

Grounded

2004-12-29T07:23:00.000Z

Hi, Mr Hot Water Bag here. Was topping 39.3 degrees last night. I feel like one of the characters out of The Incredibles - with special powers to heat up and do some damage. Have you seen it? Well worth catching despite the dodgy over-arching message of the film.

"If we let things terrify us, life will not be worth living"

Writing on the wall, Tsunami hit Tamil Nadu.

London

2004-12-28T08:01:00.000Z

Thought we would get away for a couple of days to London. So we went on boxing day and the very next day, yes you guessed it, my temperature went up. So we came back to Cambridge and I am off to the hospital for blood tests. My poor family - they dont even get two days respite.

Merry Christmas

2004-12-25T09:15:00.000Z

Merry Christmas folks. Trust Santa was good to you.

Tonight a friendly oncologist from ward C10 will come for dinner. Got talking to him one night when he was performing an ECG on me - as one does. I will try to avoid asking him morbid questions. Well over dinner at least.

Better go and set up the game cube for Pavel...

Slap that tumour

2004-12-23T20:35:00.000Z

It was chemo session 6 today. Things could be worse I suppose. I could be David Blunkett for example. Someone please explain to me how christian thrift can lead one to give a millionairess a rail voucher? And as Neil Kinnock put it, "Exactly which part of the word spouse do you have difficulty with, David?" I am more disillusioned with New Labour than I am with this cancer thing.

M the chemo nurse was in good form and was telling his audience ( Jason et moi) which chemo he would undergo and which not. These nurses are good on the gory stuff. Gave a choc box each to the day unit and to C10.

Nice things people write

2004-12-21T09:00:00.000Z

Someone sent me this they found on the web:

"Cancer is so limited . . . It cannot cripple Love. It cannot shatter Hope. It cannot corrode Faith. It cannot destroy Peace. It cannot kill Friendship. It cannot suppress Memories. It cannot silence Courage. It cannot invade the Soul. It cannot steal eternal Life. It cannot conquer the Spirit."

Yup I agree but its still a pain in the arse....

Prerequisites

2004-12-18T08:20:00.000Z

My temperature is finally out of the worry zone after four days.

If you are planning on having a long term illness of some sort make sure you acquire these before settling down to your disease:

1. that you have music. Yesterday i watched a dvd of struggle music in South Africa. Believe me it takes your health worries away... Later in the evening we danced with Pavel to Van's "Brown eyed girl" which came on the radio...

2. that you have a neighbour who is a health professional. I have a health administrator on one side ( advised me with my complaint) and a fantastically knowledgeable heart and lung expert two doors away (reassured me and put medical things in context).

3. Family near you. Not five thousand miles away in Bangladesh or 600 miles away in Scotland.

Light headed and pretty nurses

2004-12-15T20:13:00.000Z

Yes I came clean and called the doctor this morning. I went in to get blood tests done to see whether i am neutropenic or not. Nurse was C. A young and very personable nurse who always enquires after Pavel. And yup she almost made me lose consciousness. Not because of her charms - but because, i think, she was at it for ages and kept pushing the butterfly in. I started sweating and then felt lightheaded. It was quite a scene. This has never happened to me before. They quickly got two chairs to lie me down flat. They were very good and I found myself uttering "thank you" in the way that helpless people do....

Thankfully i was not neutropenic and came back home clutching a couple of awful tasting packets of antibiotics. A massive book case got installed today. Can't wait to get my books out of storage. Dying without them. Literally.

Naughty me - hospital again?

2004-12-15T06:57:00.000Z

I hit 38 degrees centigrade twice in the space of an hour at 1.20 am and at 2.20am. That is bad news of course.... I should have phoned in and admitted myself immediately, as it says I should in my DIY cancer manual. BUT at 2.22am I was 37.8 degrees! What was I to do? Being the coward that I am, I put the former reading ( 38) down to instrumental error! The thought of going into C10 Ward in the middle of the night and getting plugged with IV antibiotics was not that palatable. So I did my own quackery. I reckoned this temperature thing was on its way down....and so far I am right. I know its a bit risky because I stand the chance of deepening this infection ( which i think/hope is just a cold). I have promised myself that if I hit 38 again I will have to come clean and phone the hospital.

Funny all this. Yesterday morning I called clinical oncology to find out if we could travel to Paris by train. The sister's concern was exactly this temperature spiking . Nevertheless, she said she would talk to the boffins and she would get a letter written for me to take with me And then out of the blue and in the middle of the night I hit this temperature spike! Its made me realise how precarious this whole thing is. I have been overdoing it a bit - meeting friends, going on trips to restaurants and a trip to London on sunday...I had better calm down.

Mice

2004-12-14T14:58:00.000Z

I wonder what mice make of cancer treatment? Poor chaps are experimental creatures in every cancer research lab going I guess. If they feel anything like I do, they must be pretty cheesed off.

I have three or five more months of this. HELP! I am a cancer patient...get me out of here!

Responses to cancer

2004-12-12T06:49:00.000Z

I have to say that I have found the response to my cancer news among certain sections of south asians - both family and friends - very strange. My mother has not informed anyone in my family with the exception of one cousin. And that was only under pressure from me. My cousin had been in touch by email in the past - but after the news - not a sausage. I had the mother of one childhood friend refuse to tell her son three times the news of my cancer etc. More on this weird stuff and my take on it some other day. I would also be grateful for any sociological analysis of this....

Today I came across a gulf news site. Cancer is a difficult subject everywhere but some places are more problematic than others it seems. Bahrain for example: women don't come forward if they suspect they have breast cancer. "We have a real social problem because some men have divorced their wives or married a second wife when their wives have been diagnosed."
Check it out here.

Chemo day 5

2004-12-09T17:04:00.000Z

Guy next to me at chemo told me how he had taken a fall and cracked his back. They did a CT scan of his backbone and found that he had a tumour sitting behind his heart. I asked him how he felt when the doctors told him this.... you gotta laugh. He was impressed by my two general anaesthesia operations. We almost compared scars....Thankfully he has recovered from his backbone fracture and is taking the chemo well.

A festive looking Clinical Oncology, Addenbrookes, Cambridge:

Round two

2004-12-07T14:43:00.000Z

I received an appointment card last week for a CT scan on the 23rd of December. I was curious. Its not everyday that one is asked to get zapped by rays and ions and stuff. I emailed my consultant and of course received no reply. I emailed him again and yup I got no response. I then went down one notch in technology and used the telephone. The clinical oncology nurse managed to produce a convoluted response basically trying to avoid the phrase " there has been a mistake." What if I had turned up on the 23rd? They would have scanned me for no reason whatsoever. Another typical Addenbrookes cock up.

I have mulled over the response from the hospital complaints team. That document contained, as i have mentioned before, unreserved apologies, evasions and downright lies. I am now about to submit my response. This is when it hits the fan.

The Urban Cancer look

2004-12-06T08:23:00.000Z

Hat by Maeldoon ( thanks mate)
Coat by Versace ( £15. Silk Market, Beijing).

The News

2004-12-05T13:00:00.000Z

Incredible stuff gets published about cancer every day with catchy headlines. Orange juice is good for fighting cancer - the citrus growers down under are behind reports and studies concerning this. . Bees and honey are good for you ( from a croatian lot writing in some agricultural journal), sunshine is good against non-hodgkins etc etc. Look around you. There are bloody hundreds of things that will help you against cancer. Yet how come one in three of us will get it? Oh yes do try and avoid Brazil nuts this xmas. Some toxin will give you liver cancer....

Inex shares are down by a staggering 86 percent. Their main cancer drug is n0t getting fast -tracked by the FDA in the states. What kind of incentives are set up if such is the financial scenario behind cancer drugs?? I particularly mean testing and trials. Something ain't right.

Above links work at the mo. Don't know whether they will expire or not.

MRSA

2004-12-02T09:07:00.000Z

Addenbrookes hosptial - my local and one of the top teaching hospitals on the planet -has a bad reputation when it comes to MRSA infections . Yup, surprise, surprise - its one of the worst hospitals for the super bug. So i thought it was great news when yesterday John Reid - the health secretary, ex-commie and champion of working class smokers - described some new products that would combat the super bug. Not surprisingly his department also made clear that there was no extra finance available to purchase these things.....

We blew out on Asian fusion cuisine last night. Yakitori, tempura ( did not brave sushi or sashimi cos of potentially low white blood cells), Ramen and Udon with a variety of meat toppings. Pavel loved it. And incredibly I ate everything that came my way...Nice atmosphere. Better than Wagamama's in London for sure. Teryi - aki iz the place. If you are in Cambridge, go there today!

Too soon

2004-12-01T13:58:00.000Z

The December sun is pouring into my study and its really warming. The garden was very frosty and wintry looking this morning. This year winter has given me an opportunity to wear my cap without arousing suspicion - only because I was foolish enough to chop my hair off last week in anticipation of all the hair falling out. Well nothing much has happened - in fact the bloody hair is growing back. There was a bit of falling out around week 3/4 after chemo and there has been some thinning since then but I don't think I merit a no.1 yet. And having to wear a hat as a result of my rash action is a complete pain. Braved London yesterday by train. Tried to run for the train on the way back. Got totally puffed out and ended up with a very wet and hot bald head.

Fried Chicken

2004-11-29T17:42:00.000Z

Before I am charged with sexism, I was not allowed to enter the kitchen in the ward. So Laura had to don the blue apron and gloves and warm up my Marks and Sparks ready cooked meals. Less bacterial content apparently in M & S foods....

Back home and I can tell you there is nothing like chicken. Yes fish is great etc but fried chicken is absolutely delicious. Laura has this recipe from Indian Delights - a south african publication - and its fab. I can't wait to have some KFC but our local outlet is well below par....An australian nun studying for a doctorate once gave me KFC meal vouchers for my birthday when I was at Oxford. Bless her. It was super.

Crash, Bang & Wallop

2004-11-28T15:33:00.000Z

Time for some crash, bang, wallop on DVD. I am feeling totally miserable - no apetite, lacking energy, fed up of the antibiotics - and there's nothing like a bit of inane action to cheer me up. Maybe one of the Lord of the Rings jobs. How prescient of us... we stocked up well during our trips to China and Bangladesh with cheapo £1 dvds. Most of them work too! I even got a couple of Bolly things. Lagaan being one. Worth watching or not? I also need a decent music set up somewhere. The house is so unfinished as yet.

Delays in Chemo affect outcomes

2004-11-27T03:37:00.000Z

Delays in receiving chemotherapy affect cure rates/mortality outcomes. Last week was my first delay. It was a one week delay caused by my stint in hospital. The ozzie registrar - David J - did not seem to think it will matter but with more delays....you guessed it, outcomes are affected he said. The most common cause of these delays are low white blood cells. And with progressive rounds of treatment the wbcs plummet.