Liz's colonic journey

Posts tagged ‘colon cancer’

Chemo: the first day

I call this picture Still Life with Chemo Paraphernalia:

Pat took this photo this morning – so excuse the pjs. The black blobs that seem to be wound around Rocky’s head are a little cooler bag, a scarf and a pair of mittens. The cooler bag also contained a bright orange fridge magnet which reads “Beware: Cold Front Ahead”. Next to that is a teddy bear with Sharks scarf, and in front are lip balm, hand cream and a massage lotion. The meds are anti-nausea pills for three days after I’ve finished this round of chemo, there’s another batch of anti-nausea pills for while I’m actually processing the stuff. Then there’s all the very well written literature on how the chemo drugs work and how to manage them – not in medspeak. I’m holding up the ‘chemo bubble takeaway”. My LA Starbucks coffee mug signifies that I’m still allowed to drink coffee. As you can see there’s a lot to explain.

My blood pressure was a bit high, when we arrived at the treatment centre, natural tension said the excellent staff: Kulsoom, Tamsin and Aniesha. They checked that the port was working – basically that blood comes back and mixes with the liquid. That hurt because it involved the needle being stuck through the wound from the surgery, and the saline flush burned. After that there was just the background ache of the surgery bruises.

 They sat me in a leather Lazy Boy, one of 20 in the room, (just like the ones that Cedric and Joan have – must really get one!) except mine had the remote control doofy for raising my legs and sending the backrest back. Intensely comfortable. They warned us that it was a 6 to 6 and a half hour procedure. I sent Pat off to Godfrey before they hung the first anti-nausea muti unit on the stand. Her computer hard drive crashed this morning and work is backing up and she’s getting seriously tense. Godfrey still has the pc which I think has died. He’s trying to recover 15 years’ worth of files of it. Do not say the b*ckup word.

 I chatted a little bit with the other denizens of the room, and eyed the coffee machine, but didn’t move. I wasn’t sure that I was allowed to do that. I pretty much switched on my ipod shuffle – and listened to Val McDermid’s “A Distant Echo” – until I couldn’t stand her torture of the characters another minute. Excellent thriller but I didn’t feel like being thrilled. I was napping in between (apparently the chemo makes you feel tired as you are going along – but this was just the anti-nausea (2 units) and anti-neuropathy (1 unit)). They only started the Oxy – wotsit muti at about 11:30. I napped some more listening to Katherine Neville’s “The Eight” which is about the French Revolution and chess. I now know that I need to take a blanket because I definitely felt cold when the muti started dripping.

 What we hadn’t considered was the need for food. I’d shoved a jungle oats bar into my bag as a kind of afterthought, but that wasn’t enough to keep the hunger pangs at bay. When I started contemplating mugging Mr Naidoo (9th cycle of the same treatment) for his cheese roll, I realised I needed to send Pat an SOS.  As she got on it, the Discovery Medical Aid ladies arrived and presented me with the cutest teddy-bear, which I surreptitiously cuddled for the rest of the day. Amazing how comforting it was. Another fellow there was starting today and he just shoved his bear aside. I wondered if he didn’t feel like cuddling it – or whether he wasn’t ‘allowed to’. 

Necessity must, and I discovered I was allowed to move around when my bladder started saying, “Howzit?”.  That trip to the bathroom, wheeling my stand, led me past the coffee machine – heaven. (The sister who connected my port told me to stay away from anything alternative labelled ‘antioxidants’ – which thankfully means saying goodbye to green tea. I’ve been doing the green laxative tea – which frankly is quite foul. I’m not an aniseed/liquorice fan. She said coffee is fine. I’m taking her at her word – with joy.) This antioxidant thing is a mystery to me still, I’m reluctant to look up anything to do with it on the ‘net. Yesterday I heard on one hand,  that tumours love oxygen – that’s why they make blood vessels to steal the nutrients and what not from the rest of the body. On the other, stay away from anti-oxidants that don’t come from normal food. The rules seem to be: stay away from fats, dairy, refined foods and large doses of sugar.

 I was napping when Pat arrived with a lovely whole wheat cheese, tomato, cucumber and lettuce roll from Bread Ahead. I wolfed half of it down, before noting that Pat looked like she was about to mug me. We shared the rest. 

It all wrapped up at 3.30, when Kulsoom connected the take-home bubble to my port and presented me with the previously mentioned goodie bag. Apparently the chemo causes an extreme pain reaction when skin comes into contact with frigid air. One guy told us he’d been ‘frozen’ for 5 minutes of agony.  It’s going to be hard to remember that – I’m usually the food preparer, but I can’t go there anymore. Poor Pat – her whole life is being turned upside down. I’ve got to train myself to not automatically go to the fridge to take out fruit, milk, nibbles without thinking and to remember to ask Pat to take things out ahead of time – so that it’s at room temp when I need it. I find myself snacking at all hours of the night – usually fruit – to Pepper’s disgust. I suspect this might be a problem when it gets hot and fruit flies reign. I wonder if that’s what the mittens are for? I’m a bit scared to try it out after the story.

For me it was quite restful to lie there imagining the Oxy-muti zapping the naughty cells, followed by the Avastin zipping in and nipping off the greedy blood vessels that these tumours initiate for themselves. I exercised my best classroom management skills, explaining to them that such subversive behaviour was not acceptable and has caused the society of my body to reject them.  I felt quite gleeful. The staff stayed energetic and happy throughout the day but you could see that they were becoming really tired at the end. Constantly checking reactions, blood pressure, joking with people, soothing others and giving advice must be exhausting. I thought students were hard, but maybe we, educators, should be thinking that what they are doing is kind of a life/death exercise? Not so immediate possibly. 

I asked Aniesha how she could do this job day in and day out with such lightness. She said it’s a calling and personal experience adds empathy to her medical understanding of cancer. There are certain people who can do it, and some that can’t.

Pat was shattered – she still had to come home sans pc and collect Rocky, and think through dinner and anticipate needs for the next 18 or so hours.

Meantime I was delighted to be home and having a bowel movement that looked real without any pain. That’s probably TMI, but I’m feeling triumphant.  Pat had to hear the full dimensions and character thereof – count yourselves lucky. The issue of whether floating or sinking is more desirable remains a mystery.

The bubble thing on the lanyard around my neck is really not awkward except when Pepper gets curious.  I did take the anti-nausea pill at about 10 last night, and it seems to have sent me off to sleep very nicely. I had one of Paulette’s bananas (is that a contradiction in terms?) at 3am. The flow of chemo is presenting me with a mathematical challenge. The label says that it contains 60 mls and has a flow rate of 2mls per hour. Which I calculated would take 30 hours to complete. It was started at 3.30 yesterday and when I got up at 5.20 had already finished running. Supposing it had just finished running that would be about 15 hours – so the flow rate was actually 4mls per hour, right?  I’m to go in  at 1pm to get the refill – should take half an hour. I’m going to try and convince Pat to let me drive myself. I’m missing driving Squashy.   

Meantime here’s a shot of the Cape Whiteye baby that was learning to fly in the garden on Monday. Pat managed to take this pic – so fragile at only about 3cm tall, and surrounded by dangers of cats, dogs, predatory thrushes etc, yet with a strength of life instinct that is indomitable.

 

The History as it was up till this morning

I decided to start this blog so that I can let anyone who is interested know how I’m doing, without being a downer if they don’t want to know the details. There are probably hundreds of other blogs like this but this is mine, and I’d like to share, so that people I love don’t have to be frightened and can do something before it gets bad.

I have colo-rectal cancer which seems to have come out of the blue – the last couple of months, literally. Classic (I’m told) symptoms are mucous in stools. Unfortunately I wasn’t given to studying such things. When the weird feeling of having diarhoea and being constipated at the same time kicked in, I woke up to the possibility something was up in there. (The vodka soaked pineapple chunks in my niece’s 21st punch were a relief of note!)

But it doesn’t come out of the blue. The oncologist told us that this kind of cancer is:

  1. genetic – I probably should have asked for a colonoscopy as soon as the surgeon who treated my dad told us that this is the case.
  2. doubles its mass every 200 days

Which means that as my friend, Karen says, this mofo has been there for 2 years. Which begs the question – how could I have known, if I’d known what to look for? Well, needing to have a nap after work before doing evening things at home might have been a clue. That started about two years ago I think.  I’ve always been pretty hyperactive, but I thought it was just natural tiredness from studying, working and exercising too hard.  I did check it out with my excellent GP and the blood tests showed hypothyroidism so I went onto Eltroxin. Later I thought the tiredness was to do with menopause and started with hrt which made me feel better for a while.

I kept getting flu even though I’d had the flu injection – I guessed that I was having a milder form of whatever the flu virus de jour was. How the colon affects the shnoz is a mystery, but apparently it is so. Pains in the buttocks and down the leg also, are not always from a bad back or sciatica. These things grow and press on nerves.

So three weeks ago, I went to my excellent GP and told her my fascinating bowel symptoms – she had me scheduled for a colonoscopy in days. Two weeks ago, the surgeon found a growth – adeno-carcinoma in situ said the report. He showed me the photo which showed me a blob on some jelly. (I’d recognise it anywhere!) And he pointed me in the direction of my oncologist who is an expert in this kind of growth in the bowel. He couldn’t see me for a week, scary how busy oncologists and radiographers are. I won’t go into the details of the exam, that happened on Monday, but he didn’t think that this was an early tumour. He and his team managed to get me scheduled for an MRI and liver ultrasound on Wednesday. (I’ve had tenderness under my sternum for a while – he picked it up and wanted it checked out.  I thought it was the leftovers from the last bout of bronchitis.)

The oncologist showed us the pictures of the tumour in detail straight after we got the MRI pictures on CD. It’s a weird perspective looking at your own insides and not a generic “female body”. He described the classic ‘apple core’ shape of the tumour, basically the tumour in the bowel is the bit of the apple that has been eaten and the core is the passage remaining.  

He then described the treatment plan likely to give the best results: 5 weeks of chemo and radiotherapy. First and last week were proposed to be chemo and radiation, and the middle the radiation. His team of radiographers were incredibly kind explaining what might happen, what Pat could do to help, and how to deal with things. We felt quite good about having a plan and action to take. The idea was that they’d do the ‘treatment markup’ tomorrow (basically drawing the targets on my body) and that next week the surgeon would insert the chemo ‘port’ below my collarbone so I don’t have to be injected and sit around with a drip for hours. It looked then like I’d be starting the therapy around Halloween, which I thought quite apt.

But then there was the ultrasound of my liver. While I was having it the radiographer had commented that she thought she could see cancer ‘seeds’ – which scared me witless. At the time the oncologist spoke to us he hadn’t seen the ultrasound report.

He got that this morning and asked that I come in today for a CT scan of pelvis and liver – wanting more detail. I was to get the report from the CT scan and see him straight afterwards. Except that the day ran out of hours. So we’re seeing him tomorrow at 11 to hear what’s up. It was a bit of a downer day.

So that’s the history of the last three weeks done. I hope it is informative data wise – though I know that it doesn’t cover the emotional rollercoaster yet. Hopefully when I’ve had time to reflect it will all make some kind of sense.