7th Cycle

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

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

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

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

Spring..

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 ...

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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.