Sunday, March 12, 2006

Dr Newby and the portocath

Phew! That was a veerrry long post yesterday - congratulations to anyone, including me, who managed to read it all.....
A year ago yesterday was the day they put in the portocath. But I don't want to tell that story until I tell the Dr Newby bit of the story. So, maybe I should just do that and try to catch up a little bit.

The week after my first chemo treatment I had to go back to the oncology clinic for blood tests to check my white blood cell count. I think all kinds of chemo treatment kill off white blood cells - and white blood cells are what power your immune system and fights off infection. So it's really important to keep an eye on them. Usually, the doctors would expect to see the lowest white blood cell count 7 to 10 days after the chemo treatment and then the cells start to replace themselves and it should rise again. For this reason I was warned to avoid crowded places: like the London Underground, theatres, places with lots of children, anyone who was sick, to avoid any sources of mould (careful watching of the fruitbowl and being careful with flowers in water: a problem because of course the first thing many people did on hearing I was sick was send or bring me flowers), avoid raw eggs, pate and make sure all food is properly cooked. So, I was due back a week later to check how my blood counts were reacting to the treatment.

So, blood room again......ick.....hundreds of people waiting around with slips of paper, the 'take a number and wait for the rest of your life' type of queue. Fortunately I had the slips of paper that basically said ASAP (I think it says something like 'Doctor waiting') so I didn't have to wait more than a few minutes - unfortunately that meant everyone waiting staring at me, daggers drawn, seething and, well if they hadn't all been British and stoic then it would have been like that and there would have been a riot. (well, I might be exagerating a bit - but it felt quite like that.) So I get in there and they have those funny chairs with wide, downward sloping arms and they put the stretchy thing around your arm to bring up the veins. It's funny, none of the phebotomists (or whatever they're called) every went 'oh dear' mutter mutter about my veins - they just got on with it. I guess it's different to take some blood to putting in a cannula that needs to last at least a few hours and allow movement. The blood taking was all done quite quickly and I studiously stared in the other direction - although you have to be careful with that since there's about three other people also having blood taken in the same room at the same time and if you look too studiously in the other direction you end up staring at them...and then they give you your little phials of blood to take to the place where they test it.

YOU HAVE TO TAKE IT THERE YOURSELF!
THEY GIVE YOU THESE LITTLE PHIALS OF YOUR OWN BLOOD THAT WAS IN YOUR VEINS A FEW MINUTES AGO AND IT'S STILL WARM!
YOU HAVE YOUR OWN WARM BLOOD IN YOUR HANDS!

Is it just me or is this freaky?? I find it quite alarming, freaky and it makes my skin crawl a bit, to be honest. But, I did as instructed and handed my stuff over and hightailed it back to the clinic to discover: AJ ISN'T THERE TODAY! She's in a meeting or something, or somewhere, but SHE'S NOT THERE!
NO!
Not good for me: I'm not good at meeting new people, especially in stressful situations (like the last 2 weeks), in fact, in the last two weeks I've met more medical people than I've ever seen in my life before and it's seriously disturbing me. I am not happy that I am going to have to see someone else today. And not only that, because they're a doctor down they're also running seriously late - an hour and a half late? So I have got a lot of sitting and waiting and panicking to do - argh!

My mum is with me. We sit and wait. And wait. And wait. And eventually, we get called in to see Jackie Newby. My memories of this are hazy I was on a bit of an anxiety jag by this point. Dr Newby was very nice, that I do remember. My blood counts were fine - a bit lowered but not seriously so. How was I feeling? How were the side effects? Well, I this point I began my spiel: how awful it had been, how I could not, would not do it like that again. I showed off my enormous bruise. Trish was in the room at this time too. Trisha was/is my breast care nurse, she's a nurse specialist and she is very nice and very busy. But she was there that day to check how I was getting on.
The solution to this? Lorazepam on the morning before chemo - just one, just on those days to keep the anxiety under control. It turns out that some of the anxiety after the chemo is due to the steroids. They make some people feel very wakeful, energetic; they make me feel anxious, that twitchy anxiety where you twitch bits of your body constantly and feel keyed up. The solution to the bruise? A venous access device - sounds safe/not too scary? The variety I was going to have was a Portocath. Want to know what it actually is??

A Portocath is a little, round,....thing, about the size of a 5p coin or a dime. An incision is made in the skin on your upper chest/shoulder region and the port is put inside you - leading from the port is a tube which, also under your skin, is (somehow) attached into a vein in the neck. The incision is stitched up again. So you have, under your skin, a little round object. It is used by the nurses locating the port and putting a special needle through the skin into the centre of the port which seals around it and directs the fluid injected in into the tube which in turn goes into your vein and into you. Easy. 'People who have them, love them, it's so much easier and better.' Easy!?!? I almost had another panic attack just thinking about it. the thought of having some foreign object put in my body and left there was awful. I'm so squeemish it made my skin crawl but I didn't feel I had a choice. They were telling me this would be better so I believed them. And was immediately sent down to the surgical clinic to fix a date to have it put in: it's done under a general anaesthetic. So, off we go again, swept off to yet another unknown, shades of the two weeks before. Just when you think you're starting to get a handle on things they all change.
Dr Newby had suggested that they would put the portocath in in a couple of weeks and would do them next chemo treatment at the same time - all in one fell swoop. So, I thought I had a little time to get used to the idea. The surgeon had other ideas: this day was Wednesday - they'd do the surgery on Friday - that's Friday as in two days time. Oh, and you'll need to come in the night before. I was going to have surgery in two days (I'd never had an anaesthetic, never mind any surgery, before) and I was going to have to spend a night in the hospital on my own. Since the diagnosis I hadn't spent one hour on my own. PANIC STATIONS! It was, of course, one of the non-communicative surgeons and getting information out of him was like blood from a stone - not happening. So we went away with a strange picture he'd drawn of a circle, an information sheet (from Trisha) and a card to take up to one of the wards to arrange admission. I'm not sure it was lunchtime yet. Actually, it probably was: we'd waited a long time in the oncology clinic.

We trundled up to the admissions office for this particular ward to be met with distinct unenthusiasm. Mr Davidson kept trying to send his portocath patients up to this particular ward and I don't think they thought that was appropriate. She took my card and said they'd call me tomorrow to let me know when to come in.

I should have immediately taken a handful of Lorazepam as my anxiety levels hit the ceiling again. But I didn't and we went home.

Oh, we are so reaching one of the really fun parts of the experience now - but you'll have to wait!!
Next instalment: portocath surgery. See ya then!

13 comments:

Terri said...

I saw your post at dooce that linked here. I'm amazed at not only all you're going through but that you have the courage to share it. My aunt had breast cancer last year and has now finished her chemo and radiation.

My father, just 67 years old, not so lucky. He had oral cancer and died a year ago. The chemo and radiation pretty much did him in.

My mother just had six surgeries on her face for melanoma. My uncle just had surgery on his stomach for melanoma.

And, most amazing, my family has hardly had a sick day before all this started happening - which of course is most likely why it's happening at once.

I hope you have a strong support team; family, friends, support groups, etc....and I wish you much success in your fight for good health and life. You are so young. I know at your age doing a breast exam was the furtherest thing from my mind.

I plan to go back and read some of your past posts and get caught up. Again, I just wanted to say "hi" and to let you know your voice is heard (or I guess that would be your voice is "read," right?) and I'm amazed at your strength and grace.

I wish you strength and courage on those tough days. Kindest regards, Terri

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