Deportation

On 7 January this year I smelt a strange, but familiar smell while showering. It wasn’t last night’s curry, or rank BO, but the pre-surgery antiseptic wash they give you before any ‘major’ medical procedure.

I say major but really, it was a walk in the park, or at least it was supposed to be.

The following day I sauntered into the radiology ward, ready to cut the final physical cord tying me to cancer. I would literally be having my lifeline removed and although I was anxious about it: “What if it comes back, only to have to have another one put back in” type stuff, mostly, I was excited.

I was disconnected from my last chemo infusion on 24 August 2016, and yet every 4-6 weeks I had my port accessed and flushed. It wasn’t necessarily painful, more uncomfortable, but the real annoyance was that it was a constant reminder to being unwell. Oncologists won’t generally let you have the port removed until they’re reasonably confident that you won’t need it anymore. Getting approval to have it removed was an acknowledgement by my oncologist that I’m past the worst of it.

Anyways, I was led to the waiting room and given the sartorially elegant hospital robe to change into. It was nice to be able to keep my undies on for once, safe in the knowledge that my anoos would not be violated…for once.

No sooner had I changed that two nurses set about putting in a cannula. I’ve been told on numerous occasions that I have lovely veins, and but for my reversal, nobody has ever had an issue tapping them. The veins in both my elbow and hand were standing out like sore thumbs but the younger of the two nurses decided that a vein in my forearm that was completely invisible to me was the right one to go with. She did a test and her explanation for there being no blood return was that the needle must have been situated on a valve, as opposed to not in the fucking vein AT ALL.

I met the interventional radiologist that would be responsible for my procedure, as well as his cronies. One of them sniggered as I recounted my medical history – piece of shit.

And then I waited. And waited. And waited some more. The ward was a hive of activity, but it consisted of nurses and doctors walking in and out of the lunch room, with various baked goods. I had come during a morning tea and NOBODY gets between medical practitioners and their lamingtons.

I was finally wheeled into theatre, hopeful of getting at least some Midazolam to take the edge off. They took an x-ray to check the location of the catheter in my jugular before they go to the ‘fun’ part. The x-ray was different to my usual scans in that it was simply looking down, as opposed to a cross-sectional scan which my CT scans are. The result was that my lungs were filled with dozens of black ‘spots’, as if I had been shot with a shotgun. My anxiety immediately went into overdrive until I asked the radiologist and he twigged, assuring me that they were blood vessels, as opposed to multiple metastases. We laughed and he reassured me that if he saw anything on it that caused him concern’s they wouldn’t be removing the port.

I then steeled myself for what was the worst part of having the port put in – the local anaesthetic. I like to think that I have a pretty high tolerance for pain and this had me wincing like I’d been kicked in the balls. Thousands of fire ants crawled into my chest and before I knew it, I saw the glint of a scalpel.

The head honcho decided to let one of his cronies do the cutting and while in hindsight I regret allowing it to happen, he was pleasant and told me what was about to happen the whole time,

The videos on YouTube showing port removals, and all the anecdotes I’d read re same led me into a completely false sense of security. It took FOREVER for them to even access the port due to the star tissue having formed an inpenetratable pocket around it. At one stage, I actually heard a ‘twang’ sound as they cut through a band of scar tissue.

Then came the tugging, coupled with the cutting, as they managed to get the forceps on the port itself, and were trying to pry it from it’s home like a caesarian hippo. At one stage the forceps, or scalpel, I’m not sure which, slipped and plunged into my chest/shoulder, waaaaay past the limits of the local anaesthetic. I haven’t screamed like that since my surgeon tried to yank my drip out a few days after surgery. One of the nurses helpfully wiped the tears from my cheeks, held my hand and said “You’re doing so well, sweetheart”. Bless her – she continued to hold my hand and let me squeeze it like a vice each of the four times they topped me up with local anaesthetic. Surely that must be some sort of record.

Finally, the radiologist waved my port above my face like a clock when you try and hypnotise someone. I asked if I could take it home and the tear-wiper dutifully took it away and cleaned it up a little so it was less of a biohazard risk.

They then set about stitching me up. You know those dudes who hang themselves from hooks and you see the all the skin stretching etc…yeah, it was like that. Each knot was pulled harder than the last, and at one stage, I thought the doctor had been an upholsterer in a past life. Those stitches were internal, whereas they intended to use glue to close the wound itself, as it heals faster, and gives a better ‘cosmetic’ result.

They wheeled me back out where I was met by the same nurse, who kindly got me some laminations, a juice, and and a muffin. She ripped the cannula out of my arm, which did nothing to alleviate the dull throbbing, and sent me on my way, with a couple of pieces of paper setting out what I needed to do, and not do, in the coming days/weeks.

I faithfully followed those instructions, and far from having a neat, pencil-thin line such as that promised to me, I have a gaping stab wound in my chest which has only today, some 3 weeks after it was removed, started to show signs of starting to heal.

I am yet to regain full strength or movement in my right chest/shoulder, and I’m hoping that it is just a normal part of healing from the procedure, as opposed to something more permanent resulting from the cronie playing ‘hide the surgical instrument’ in my chest/shoulder.

There is a huge amount of scar tissue which can be felt at the site of the wound, hopefully, with time, it will settle and soften, just as the scars on my stomach have. The worst thing about having it removed is being unable to swim until it heals, and I can’t tell you how pumped I am to get back out in the surf with the GoPro.

I have another scan coming up in a few weeks, the day after my birthday actually, and a colonoscopy scheduled the week after. Talk about a shit-tonne of fun. The scanxiety has already started to set in, I think because the timing of it is such a big milestone. It will be almost 2 years since I had the bowel resection which technically put me into remission, based on (a) having a complete pathological response to neo-adjuvant treatment (no cancer in what was removed) and (b) scans taken shortly after surgery revealing no spread anywhere else.

Statistically speaking, the majority of recurrences occur within the first 2 years, and almost all of them within 5 years, which is why, after half a decade, you’re declared cured.

For me, that date is 18 March 2021, and every quarterly blood test and 6 monthly scan which comes back clear makes my odds of hearing those words that much greater.

Until next time folks, be kind to your colons, and each other.

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6 thoughts on “Deportation

  1. Hi,

    Sounds like although you’ve been thru hell, you’re coming out pretty well. In Dec I had a LAR (Stage 3b, rectum removed) and ilestomy. Now I’m going thru post-surgery chemo (Xelora pills and Oxy….. intravenous). Oncologist wants me to do 6 months, but I saw medical studies on the net which showed no difference on cancer reoccurance when people do either 3 or 6 months. So, I’m thinking just 3 months. In Holland, they don’t do post-surgery chemo if the pathology report was clear and the doctors were good. My pathology report downgraded the cancer to stage 0 and I had great doctors.

    After chemo, I’m slated to do an ilestomy reversal in May. Your reversal sounded great, but I read others who have had a hellish time for years. I’m 60 and feel great. The ilestomy is a pain, but I can manage it. I was wondering if it’s worth the risk to do a reversal? Any ideas are appreciated. It sounds scary trusting your ‘new’ rectum. It’s like not having a parachute. Now I can rest assured if something doesn’t agree with me it will at least be caught by the bag.

    thx

    Steve

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    1. Hi Steve,

      I’m taking a punt that you found me through Colon Club, given there is a post about reversal by someone named ‘Steve’.

      You have already got some good responses, particularly Re enemas etc.

      I don’t do enemas and as you’ve pointed out, I’ve been VERY lucky post-reversal.

      I too read absolute horror stories about life post-reversal and for the first week after having mine done I missed my stoma terribly. As you say, it’s not ideal, but it is manageable.

      I suspect that I have LARS, but fairly mildly. My worst symptom is clustering but really I only have a bad bout once or twice a month, and it’s generally at night so while it’s draining and painful, it doesn’t affect my personal or professional life.

      In terms of whether you should have it done, it’s obviously a personal decision. Are you able to do thing now with your paying that you did before it? In particular, exercise etc?

      For me, it was more of a mental thing. I hated looking down and seeing it, and was very self-conscious about it when I was out and if people could see the bulge etc. in hindsight I should be thankful that I was alive to be able to experience those feelings but at the time, your mind is focused on other things.

      The thing about a reversal is that if it doesn’t work out, then there is nothing stopping the ostomy being recreated.

      Mine was an ultra-low LAR which historically has worse incidents for LARS so the fact that you ‘only’ had a LAR stands you in better stead, at least statistically.

      My advice is if you decide that you want to go through with it, then practice practice practice clenching your sphincter. Do it religiously because it makes all the difference post reversal.

      It sounds like you had a complete pathological response, or very close to, which is excellent news prognostically!

      I have read similar articles re the time frame/dosage post surgery. The attitude of my specialists, notwithstanding my stellar response to bro-adjuvant therapy was full-frontal blitzkrieg. I don’t regret that but accept that even if only based on age, that it may be a different thing for you.

      Thanks for reaching out and I hope that I’ve been able to help, even a little. Feel free to get in touch with any other questions!

      Geoff

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      1. Thanks Geoff. Yes, same Steve from colon club. May I ask your age? Also, was your back passage ‘fried’ from the radiotherapy?

        I’m an American self-employed corporate trainer based in Malaysia. I haven’t trained since the op, but I’d like to restart. I feel really good right now and think I could train. But I’m a bit worried carrying my suitcase filled with manuals, etc. Don’t want a hernia or whatever. I stand most of the day, but we do have breaks. If I had the reversal and then had a bad LARS experience in class, it would be tough to take an unscheduled break with 20 pax watching. I’m thinking I can manage the bag a bit better. I guess if my LARS is really bad, I’d have to possibly retire as I don’t know how long I can retain my clients if it takes me years to get over LARS. They may just hire another trainer. But I am a good trainer and quite specialized.

        My doctors called my op a ‘LAR’ but they said it was very low. Although they had to push their fingers quite far up my butt, they could feel it. They said was about 10″ up. My oncologist called it ULAR.

        Still, ideally I’d like to get rid of the bag. It’s a tough decision coz you read the horror stories and then you read the nice stories like yours. I’m fairly fit for my age and thin.

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      2. Sorry for the delayed response.

        I’m 37 now and was 33 when I was diagnosed.

        I’m not sure it was ‘fried’ but I know that whatever they irradiated was essentially take out during surgery anyways and my surgeon designed me a new back passage.

        There is definitely a period after the reversal which is the hardest but things like Imodium definitely help.

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