Unpleasant things

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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...