Final Meeting with Consultant

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

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

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)

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

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

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

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...

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

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!

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

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

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

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

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

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.