Thursday 29 April 2010

Ali Kimyawi, I salute you.

So 2 is over and done with. A good day actually...was in and out of the West Wing in a few hours.

I didn't see House yesterday...she was off somewhere, perhaps a conference or ill or at a funeral.

I am glad she wasn't, because I got to meet Dr A. He is the most wonderful, warm, smiling oncologist you could ever hope to meet. Dr A is from Iraq. I know a few Iraqis, as well as a bunch of Jordanians and a huge load of Palestinians, both in Israel and Jordan. My given name is actually Arabic, so it always makes them smile.

Anyway, Chemical Ali (as he is hereby known and don't worry, I know he would like that nickname as he is technically trying to kill part of me with chemicals), came into the room (all 5'5 of him) and the first thing he did, after smiling and shaking my hand, was this:

"I like the look. You look like Demi Moore from GI Jane. You look beautiful' (or was it 'wonderful'?).

Anyway, I spent a good 20 minutes with Chemical Ali and I had a ball. I was able to ask him the two questions I wanted to ask:

'I felt like someone kicked me in the tit straight after chemo last time. Colin was moaning' I said.

'That's good, GI Jane. That means the chemo is in there and doing its job' replied Chemical Ali.

'Also' I said, 'when do I get to see if Colin is diminishing to a shadow of his former self?'

'Arr yes, let me give you an ultrasound form, we will take a look before Round 3 and after round 5' and he dutifully filled in the relevent forms to organise ultasound.

He not only told me my bloods were good, but also gave me a blood form so I could start a little collection going. This is a big deal, so far I haven't been overly impressed with the hospital's policy on including the patient in their management routine, which I am used to with my other disease.

My neutros have dropped. To a third of what they were pre-1, but they were prefectly good for a chemo patient. All my other bloods fell into normal perameters for a normal, healthy person. This is good too. I understand a little about blood work for systemic treatments and I am happy with my results thus far...and makes me see the importance of rest and good diet in the last week post-nadir to try and spark neutrophil-creation though...no more 'staying up all night with Drummond' methinks...

Anyway, we spoke about a few cancer/chemo associated things and he stopped and asked me if I had a medical backgound. I am not a doctor, but I have worked professionally and voluntarily with another set of diseases...including a lot of lectures to consultants/pharma/nurses. This has filled my passport with stamps over the last 8 or so years. A professional expert patient, I am.

He asked me, once all this cancer shit is over, whether I would be prepared to speak at conferences and the like...nothing different to what I have done before, just about cancer shit. Of course I would, if I am up to it. We all like to make a difference, however small our contribution.

I have already discussed writing a patient leaflet specifically for the West Wing on patient perspectives and experiences with the head oncology nurse...and House was being approached. Chemical Ali thinks this is a great idea and brought it up with me...

If you remember, I said there was absolutely no introduction to the whole 'having chemo' rigmorale. No look-see at the West Wing, no indication of what happens, how long it takes, what to expect or even, believe it or not, where the West Wing actually is. Do you eat before chemo? Can you bring a friend? What should you wear? Does it hurt?

Of course, we are all individuals and each chemo treatment is unique to both the cancer and the patient, but from a patient perpective, the questions we would like answers to, generally, are the same...some people want to know everything, others nothing. But having this information to hand, if you wish to know, should be available. Hopefully, it'll get sorted. The RB certainly know and want to improve this part of their service, so good for them.

Hey, I got a 'green bag'. This is given to you by the oncologist and contains your notes. I noticed other chemo people had them last time and I did not. I want a green bag too! So yesterday, Chemical Ali handed me mine...

'Can I personalise it?' I said

'Oh yes' said Chemical Ali, 'make it look like yours, GI Jane'.

I am a bona fide chemo patient now I have a green bag. Of course, I nipped into the toilets to read it...just to see what they said about me...nothing I didn't already know really, except my cancer cells are 'moderate to high grade', which is a bit crap. Then again, my cancer has metatastised as one lymph node is affected (which is good...you want as few as possible as this shows it hasn't travelled far and also, I won't need to have them all out at surgery time), so I would imagine they would be moderate to high grade cells. Lucky I caught Colin when I did...otherwise it might be a different story and I might have secondaries in my lungs/liver/bones.

I liked Chemical Ali. There's nowt wrong with House, except she is, ummm, House. Ali was a joy to meet and really made my day. I salute you, my own little Ali Kimyawi .

So, the Day after Yesterday, again, and I am fine. I have handfuls of pills to take. As I didn't suffer at all last time, they said I can half them this time...only the bloody pills make me feel awful for a bit...I sit here now, 8am after chemo and I feel 100%. I take those pills and I feel shaky and a bit sick...as if it the pills and not the chemo. So, weaning myself off them is the way to go...half today, less tomorrow and none on Saturday if I am fine. Then, the initial side effect time is over...and next week, the mouth ulcer et al should hit. Hurruh!

"Each patient ought to feel somewhat the better after the physician's visit, irrespective of the nature of the illness." - Warfield Theobald Longcope

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