Fried Chicken

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

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

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.

Chemo today

Yes 4th session. Anyone out there know how to do cart wheels? I was reading how this chemo patient cartwheeled on her last chemo session. Such was her joy.....I feel I ought to do the same. I have quite a few to go and so I guess I have time. Or a back flip? Skateboard?

Lessons

So what did my 9 nights and days in hospital teach me? Yup - its an easy one that. Having cancer is not a joke. There is a unique feeling of powerlessness. No pen can describe it or at least certainly not mine. On the other side, it showed me that my wife can carry us all and effortlessly so - as always. Or atleast so it appears. Goodness knows the real toll on her. And it showed me that my kid is simply irrepressible whatever the environment - whether the filthy CCU at the Holy family in Dhaka or the high tech set up of Mount Elizabeth, Singapore or the victorian gloom of hospitals in Glasgow or indeed my little room in C10, Addenbrookes. He becomes the focus and things are transformed. There's always a new game or a new food or some other thing to be excited about and it becomes transforming. We get removed from sinister thoughts and we are carried along by his little ways.

Home sweet home

Below: view of my room for the past nine nights on Ward C10 of Addenbrookes hospital. If you are a chemo patient, temperatures of 38 C and above are decidedly dodgy. This is particularly so if you are neutropenic (very low white blood cells - very low defense against infection). I hit 38.5 centigrade on sunday 14th and went to hospital immediately. In reality i had hit that on saturday but the thermometer I was given by the chemotherapy day unit was wrongly calibrated.....it is consistently 0.6 -0.7 under the correct temperature. Nice one, eh?





I was put on intravenous antibiotics within a couple of hours of reaching hospital. Now this IV stuff should really be given to neutropenic patients. By then they had not established whether i was neutropenic or not. I got plugged in to IV stuff just in case I was. It turned out several hours later that I was not neutropenic - thank goodness. By the way, did George and Tony stupidly take this prophylaxis idea and distort it to develop their paradigm of the moment: forget the evidence and think only of the possibility? ....Anyway, for the first week my temperature never went below 38 and was often as high as 39.6 C. More worryingly I became breathless. A simple act of picking up something from the floor was exhausting - so i never put on any socks. Taking a shower also left me breathless - no, I have to have a shower and did so on all but two days. I admit however i did not bend down to wash my feet. Walking even thirty steps let me gasping for breath. So I gave up walking for a few days.

There are some terrible battles going on in that ward. I was in a minor one compared to some of those there. There were some scarey moments though. The CT scan showed shadows on both lungs. These are indicative of infection or damage by Bleomycin - one of the chemo drugs. If the latter, they would have to change my entire regime.... There was talk of a lung biopsy and a bronchoscopy to establish this. Thankfully, I got better just in the nick of time and managed to avoid that stuff. So the bigwigs reckon it was some kind of pneumonia or viral infection - but we still dont have a culprit and the possibility of bleomycin caused fibrosis.... best not to think too much.

Next up - how to deal with nurses and doctors at the world famous Addenbrookes.

Embedded blogging

S has been in hospital since last Sunday 14th November. He hopes to resume normal service soonish. Laura.

This Last Week

...has been the toughest and we are only a month into the treatment. I have been extremely tired and needing to lie down/sleep frequently. Also the night is disturbed (check the time stamp on this post below). I am having to drink a lot of water. I asked about this at my last clinic on 4th Nov but they gave me no answers. Yesterday I raised the issue of calcium - the nurse will get back to me. We will see if she does....

On wednesday the impossible happened - I could not eat a grain of rice. Yesterday the smell of basmati rice cooking drove me away from the kitchen. My appetite has pretty much gone. Thankfully it came back for an hour yesterday and I enjoyed a lemon and herb Nandos for lunch. Another first...usually i swagger up to the counter and go for the macho extra hot. I am now on wimp-strength muesli and apples. These go down well.

SARS II

Its always good to have a caring and loving wife but sometimes they can get carried away....Look at what Laura thought I should wear on the flight upto Scotland during half term to protect me from bugs in that confined space.

Taste Buds

Anyone got any spare taste buds ? Please email them to me? I will wash them properly before I return them.

Seems trivial to write about this with Falluja in flames.

PALS

Got a reply from the patients rights body re my complaints: some unreserved apologies, some evasions and some downright unscientific lies. I will be pursuing. If there's one thing I can't stand is people trying to pull a fast one...

Pop against Cancer

This here is 20 year old Delta Goodrem from downunder. She battled against Hogkin's disease last year, and is looking as good as ever ( not that i have ever seen another pic of her...but we all like a happy ending). She will be doing some concerts in July and is handing over the proceeds to cancer research. She won't get critical illness cover from any insurer but I suspect she won't need that kind of backup given her background. Oh yes, I must retract my statement re Billy Joel. A reader tells me he is big into supporting cancer causes.

Some Worries

1. This particular nurse keeps leaving out the last 20-40 ml of the drip chemo. I will stop her next time. No idea how critical it is but I want every last drop of that stuff.

2. Bleomycin can knacker my lungs. Wrote to the doctor for the x-ray result. No reply. This is how it is at the world famous Addenbrookes hospital.

Went to London yesterday for more retail therapy.

Ban Billy Joel

Chemo Session 3: 20 minutes to get the canula in. A wee bit painful but nowhere near as painful as having to listen to Billy Joel back to back blasted over the tanoy.

Here's a trick i learned at school in Scotland to give myself a mood lift, and it still works to this day after so many years. I would day dream just before the exams. I would be stressed out and swotting furiously trying to catch up on the year's work. I would look at the Campsie Fells from my window and day dream about going up there and upto the Highlands. And I would make plans - often unfulfilled of course - to do these things immediately after the last exam. I would make lists of the Munros I would conquer etc. Similarly it was exhilarating yesterday talking to Laura about a grand trans-continental journey we would make after all this nonsense passes. And we are going to plan it out with Pavel and show him the pictures etc of these places. The Matterhorn, chamonix, the alto adige alps - just in Europe alone. Its a good trick for a serious mood lift but its also important, I think, to plan and build and not let this damn thing overpower every sphere of life.

The Marchioness of Zetland

Chemo tomorrow. As if the US election results won't be bad enough.... I am anticipating the worst....The chemotherapy day unit: I go in. I get weighed. I get seen by the doctor. I wait around for a bit more while they make the goodies with which to inject me. The unit was opened by the Marchioness of Zetland no less. I am taken to a room with about 5 plump pink and blue armchairs - the Marchioness would be offended by the colour scheme, I am sure - and then it begins. First i get a hot water bag over my arm to relax the veins. Then they go in with the canula. If the nurses aren't nattering too much it goes in first time. They then pump various anti-sickness cocktails and also chemo in big huge syringes. One particular one is quite interesting. You suddenly feel pins and needles and heat all around your groin and bottom area.. Not pleasant. This only happens if they push the syringe hard. And this the nurse invariably does because she is nattering too much. Then the drip. If it flows too fast, you will soon feel it. And you will feel it for days afterwards in your veins. And we are gonna feel the election results soon enough...

Here's a cheery website about food during chemotherapy.

Nice letter

By the end of the two weeks the nausea wears off and the tiredness tails off too. And you begin to think - yup I can handle this. Then a letter from a consultant haematologist drops on the floor and reminds you where you are. My risk to TA-GvHD is now life-long. Sorry? You wot mate? I have to carry a little card around with me. This says that I have to have irradiated blood if i require a transfusion - otherwise I am at risk of Transfusion-Associated Graft-Versus-Host Disease. This is my second card - the other one speaks of chemo treatment. And it will displace a second credit card.