Saturday, 15 September 2012
Thought: 1 (Bad language alert)
Have you ever noticed how many insults/exclamations are associated with poo and bottoms? There are quite a few: shit, shitty, bummer, crap, arse (ass), bugger, just for starters. I wonder what the obsession is with connecting basic bodily functions with bad things? Poo isn't pleasant, and as a human product it's never going to get the media's applause like, say, breast milk, but it's not a bad thing, surely.
One step at a time
Another out of sequence one, but it can't really wait (in my mind) for me to catch up.
So I mentioned that my follow up appointment had been brought forward. DH and I had spent a nervy 24 hours trying to convince ourselves there was nothing in it and that it could as easily be because he wanted to let us off the hook quickly as be bad news. So, surprisingly, I slept quite well on Thursday night, only waking up at 5.30 am. Then I couldn't get back to sleep.
No amount of talking will change nine "involved" lymph nodes though. The consultant seems as upset as we are, he having been 90% sure that this was in situ only. His positive, and mine, is that he did a proper "cancer" op, removing the lymph nodes behind the polyp, and not just the polyp removal he could have done. I didn't know the two options existed, but I'd have chosen the more radical anyway. He gives us lots of time, carefully explaining the functioning of the lymphatic system and the fact that cancer cells use it as a transport network so we can't be sure where else the cancer cells might be, hence the broad spectrum sledgehammer approach of chemo. But this consultation is the first time anyone has used the word "terminal" in front of me and that's what makes me cry, properly cry, in the car on the way home. To be fair, it was used in the context of improvements in chemo, better survival rates, this isn't terminal. Until now, though, I've just stuck my head in the sand and refused to acknowledge that I have cancer at all. I don't want to think about leaving my husband, leaving my beautiful children, I don't want to think that this could lead there.
DH and I manage to pull ourselves together for when we get home. No-one cries until the children are in bed, and then everybody cries. Grown men shouldn't be crying, this is all wrong. We solve the problem in a temporary way by getting Chinese takeaway and drinking a lot of wine, which maybe not the right thing to do but at least we can all relax for a while.
So I mentioned that my follow up appointment had been brought forward. DH and I had spent a nervy 24 hours trying to convince ourselves there was nothing in it and that it could as easily be because he wanted to let us off the hook quickly as be bad news. So, surprisingly, I slept quite well on Thursday night, only waking up at 5.30 am. Then I couldn't get back to sleep.
No amount of talking will change nine "involved" lymph nodes though. The consultant seems as upset as we are, he having been 90% sure that this was in situ only. His positive, and mine, is that he did a proper "cancer" op, removing the lymph nodes behind the polyp, and not just the polyp removal he could have done. I didn't know the two options existed, but I'd have chosen the more radical anyway. He gives us lots of time, carefully explaining the functioning of the lymphatic system and the fact that cancer cells use it as a transport network so we can't be sure where else the cancer cells might be, hence the broad spectrum sledgehammer approach of chemo. But this consultation is the first time anyone has used the word "terminal" in front of me and that's what makes me cry, properly cry, in the car on the way home. To be fair, it was used in the context of improvements in chemo, better survival rates, this isn't terminal. Until now, though, I've just stuck my head in the sand and refused to acknowledge that I have cancer at all. I don't want to think about leaving my husband, leaving my beautiful children, I don't want to think that this could lead there.
DH and I manage to pull ourselves together for when we get home. No-one cries until the children are in bed, and then everybody cries. Grown men shouldn't be crying, this is all wrong. We solve the problem in a temporary way by getting Chinese takeaway and drinking a lot of wine, which maybe not the right thing to do but at least we can all relax for a while.
Friday, 14 September 2012
Telling people
My text hugging mate hears first and her instant recommendation is Valium, or vodka if no Valium. This seems sensible, but I need my wits about me for a little longer. The list of people I need to talk to seems huge, so I start at the top: my Mum and Dad.
To put this conversation in context, we have had a number of family friends die of cancer over the years including someone who didn't even reach 30 and one of my father's best friends who died of stomach cancer. Also my Dad is ex-Navy, so all family disaster anecdotes are accompanied by my Dad asking why he doesn't know about this particular happening and getting a chorus of "You were at sea!". On this occasion, Dad is in Pakistan with his post-retirement job. So Mum is at home on her own when her daughter calls to tell her she has cancer. I reckon it took no more than the time it takes to pour a stiff whisky before she got on the phone to her sister, to whom she is very close. (Mum tells me later this is not true!)
My in-laws and sister-in-law are staying, en route to a week's holiday. They cry. Our nanny cries. The elder of my two brothers cries. I'm dry eyed throughout as the task of getting people told gives me something to focus on and repetitive emphasis of the positives - it's very early, consultant thinks op only no chemo - sort of helps. I call my boss, who is on a rare and much needed holiday, and get strangely comforted by having almost a stand up row with her about whether or not I am coming to work on Friday (I win, but it's a close call - she's from New York).
Then, somehow, I eat. I drink - too much. I don't sleep.
To put this conversation in context, we have had a number of family friends die of cancer over the years including someone who didn't even reach 30 and one of my father's best friends who died of stomach cancer. Also my Dad is ex-Navy, so all family disaster anecdotes are accompanied by my Dad asking why he doesn't know about this particular happening and getting a chorus of "You were at sea!". On this occasion, Dad is in Pakistan with his post-retirement job. So Mum is at home on her own when her daughter calls to tell her she has cancer. I reckon it took no more than the time it takes to pour a stiff whisky before she got on the phone to her sister, to whom she is very close. (Mum tells me later this is not true!)
My in-laws and sister-in-law are staying, en route to a week's holiday. They cry. Our nanny cries. The elder of my two brothers cries. I'm dry eyed throughout as the task of getting people told gives me something to focus on and repetitive emphasis of the positives - it's very early, consultant thinks op only no chemo - sort of helps. I call my boss, who is on a rare and much needed holiday, and get strangely comforted by having almost a stand up row with her about whether or not I am coming to work on Friday (I win, but it's a close call - she's from New York).
Then, somehow, I eat. I drink - too much. I don't sleep.
Reading between the lines
The colonoscopy takes place on a Thursday. I have Friday off and the Monday is the August Bank Holiday so Tuesday is back to work. My inbox is full and I'm head down trying to get to grips with what's going on. Then my mobile rings and it's the consultant's secretary: he would like to see me earlier than the original appointment - could I make Thursday? She is at pains to point out that he doesn't have the biopsy results yet but expects to have them Thursday morning; when I ask her if I should bring someone with me she simply says, "For biopsy results I would always suggest you bring someone with you." Strangely I'm not comforted and I spend much of the rest of the day being hugged by text by a wonderful friend who is just recovering from chemo (breast cancer) and so has been through all this testing and results nonsense. Her theory is that the consultant has to go to his kids' swimming gala next Thursday (the original appointment) and he is rearranging his diary.
So Thursday is another hastily arranged day working from home. My boss is being marvellous which is amazing considering all that we've got going on in the office, although I think she also realises that I work hard when I'm working at home. I'm still foot to the floor (deliberately) when DH drags me away for the appointment.
We are the only people in the waiting room as it's the end of the day - the hospital is eerily deserted. "OK" magazine is not enough of a distraction, particularly as the appointed time comes and goes. After what feels like an age, but is in reality only ten minutes, the consultant appears. And I know. I know before he even says a word. There's just something about his manner that is too solemn for anything else. And so the clocks stop.
He will remove the polyp in a laparoscopic procedure. This involves resecting the bowel completely, because of the cancerous cells in the top of the polyp. Bizarrely, the laparoscopic version of the procedure requires an incision almost as large as the non-keyhole version because, of course, you still have to get the bits out. Further treatment depends on what 's found in the section that's removed. He can fit me in next Thursday. I need a CT scan, a pre-admission appointment and an appointment with the stoma nurse. My children might be at greater risk so I should also see a geneticist. I will be off work for at least 6 weeks.
Neither of us cry until we're back in the car. Then we both do.
So Thursday is another hastily arranged day working from home. My boss is being marvellous which is amazing considering all that we've got going on in the office, although I think she also realises that I work hard when I'm working at home. I'm still foot to the floor (deliberately) when DH drags me away for the appointment.
We are the only people in the waiting room as it's the end of the day - the hospital is eerily deserted. "OK" magazine is not enough of a distraction, particularly as the appointed time comes and goes. After what feels like an age, but is in reality only ten minutes, the consultant appears. And I know. I know before he even says a word. There's just something about his manner that is too solemn for anything else. And so the clocks stop.
He will remove the polyp in a laparoscopic procedure. This involves resecting the bowel completely, because of the cancerous cells in the top of the polyp. Bizarrely, the laparoscopic version of the procedure requires an incision almost as large as the non-keyhole version because, of course, you still have to get the bits out. Further treatment depends on what 's found in the section that's removed. He can fit me in next Thursday. I need a CT scan, a pre-admission appointment and an appointment with the stoma nurse. My children might be at greater risk so I should also see a geneticist. I will be off work for at least 6 weeks.
Neither of us cry until we're back in the car. Then we both do.
Getting a tattoo
My husband takes me to the hospital, where check in is a bit like an hotel. They ask you what newspaper you want, which seems a bit superfluous as this is a day case, then someone comes to show you to your room and guide you round the facilities. I'm only really interested in what time the procedure will take place as I am starving and thirsty. I'm also slightly concerned about the fact that my relationship with the loo does not seem to be abating and the whole procedure will not take place because the bowel isn't clear. The assurance of the nurse that the consultant will in fact be pleased with this news isn't actually comforting.
The consultant appears to say hello, explain the procedure again and get consent. The biggest risk is that he removes tissue and this causes a split in the bowel which instantly creates an emergency case. I sign; I figure he's been doing this for a few years so I should be ok. An hour or so later I am taken down the corridor to theatre, well, what seems to be a side room as it certainly isn't the wide open space you see on the TV and asked to lie down. The nurse offers, jokingly, to do the cannula as the consultant is having a little trouble, but he gets there and the sedative goes in. This, I have been informed, is like Rohypnol or Zopiclone, the date rape drugs, so I will remember some of what follows but not all, and I won't care.
I remember four things: the camera coming out, some discomfort during the procedure, a large amount of black substance on the screen and a slightly tense conversation about a large polyp. The rest is gone.
Back in the room I'm still groggy when the consultant comes back to see me. Why do they come and talk to you when you're still in a state of chemical befuddlement? My husband isn't there, so I'm the only party to this conversation. Anyway, he (consultant, not husband) found two polyps - a small one that he has removed, and a large one that he couldn't get the snare round and in any case had such a thick stalk that he was concerned that there might be blood vessels inside and therefore removal requires a different operation. In case he can't find it again (it's about 4 cm long, apparently, how is he going to miss it?) he's tattooed it - that was the black on the screen. He'll see me in two weeks' time to talk about the results of the biopsies he's taken.
I come round properly, my husband collects me and we go home. All done.
I round properly, get lunch and my husband takes me
The consultant appears to say hello, explain the procedure again and get consent. The biggest risk is that he removes tissue and this causes a split in the bowel which instantly creates an emergency case. I sign; I figure he's been doing this for a few years so I should be ok. An hour or so later I am taken down the corridor to theatre, well, what seems to be a side room as it certainly isn't the wide open space you see on the TV and asked to lie down. The nurse offers, jokingly, to do the cannula as the consultant is having a little trouble, but he gets there and the sedative goes in. This, I have been informed, is like Rohypnol or Zopiclone, the date rape drugs, so I will remember some of what follows but not all, and I won't care.
I remember four things: the camera coming out, some discomfort during the procedure, a large amount of black substance on the screen and a slightly tense conversation about a large polyp. The rest is gone.
Back in the room I'm still groggy when the consultant comes back to see me. Why do they come and talk to you when you're still in a state of chemical befuddlement? My husband isn't there, so I'm the only party to this conversation. Anyway, he (consultant, not husband) found two polyps - a small one that he has removed, and a large one that he couldn't get the snare round and in any case had such a thick stalk that he was concerned that there might be blood vessels inside and therefore removal requires a different operation. In case he can't find it again (it's about 4 cm long, apparently, how is he going to miss it?) he's tattooed it - that was the black on the screen. He'll see me in two weeks' time to talk about the results of the biopsies he's taken.
I come round properly, my husband collects me and we go home. All done.
I round properly, get lunch and my husband takes me
Thursday, 13 September 2012
Out of sequence
This isn't at the right place in the narrative, but it's hot off the press and sometimes telling no-one, an anonymous audience, is better than telling the people around you. Everyone is trying so hard to be strong about it all that I feel I have to be strong too and I'm not, I am scared.
This morning I'd happily fixed up the next appointment to see the consultant. He'd been confident the histology results wouldn't be back for weeks, so I made an appointment for next week and his secretary promised to phone me if that changed and we needed to put it back.
She just phoned and brought it forward to tomorrow because the results are back. My mind's in overdrive analysing what this might mean. Have the results come back more quickly because they've already found enough? Surely giving the all clear would take longer because they're checking much more? I got a decent night's sleep last night. Don't think this one will be so good...
This morning I'd happily fixed up the next appointment to see the consultant. He'd been confident the histology results wouldn't be back for weeks, so I made an appointment for next week and his secretary promised to phone me if that changed and we needed to put it back.
She just phoned and brought it forward to tomorrow because the results are back. My mind's in overdrive analysing what this might mean. Have the results come back more quickly because they've already found enough? Surely giving the all clear would take longer because they're checking much more? I got a decent night's sleep last night. Don't think this one will be so good...
A close look at the plumbing (WARNING: TMI)
As the party piece didn't show anything, the consultant's secretary calls to confirm that the colonoscopy will be needed after all. I was hoping to avoid this, as apparently it involves fasting, liquid diets and laxatives. But, hey ho, I do believe that no medical professional really wants to do unnecessary procedures on their patients and we seem to have exhausted the non-invasive tests so let's get on with it.
The hospital calls and leaves a message on my voicemail. Can I please come to the hospital outpatients' department to collect a bowel pack? Apparently I need to do this at least a week pre procedure and between the hours of 9 and 5, Monday to Friday. Now whatever people think about the UK benefits system, it does not pay enough for people who don't work to have private medical insurance. There is therefore a pretty good chance that I HAVE A JOB. No, I cannot do this in the 2 day time frame (work is manic, lots of people on holiday and I already have to take two full days off plus one day working from home next week). And I cannot get through to Outpatients to explain this. Fortunately the consultant's secretary, who I call in a flap, comes to my rescue and sorts it out.
Bowel pack collected (NB: if you ever need this done you can't, whatever they say, just walk in and pick the pack up. It's like a medical appointment), the serious prep starts Tuesday. I eat nothing but jelly, yoghurt and cup a soup all day, nothing solid or with any bits in. Surprisingly I don't get hungry, although my colleagues think I'm very odd. I decide that beer is a liquid, so I don't cancel drinks with my friends from my old workplace but get through 2 lager shandies, to no ill effect. Wednesday is clear fluids only, meaning that I drink beef consommé and Marmite for the first time in years. Again, surprisingly not hungry. At noon I'm supposed to take the first laxative, which comes with the warning that after taking it I should stay close to the toilet. However, I have a conference call and decide that an hour won't make any difference, so at 1 pm I neck the powdery solution and wait. And wait. And wait. Nothing happens.
So at 5 pm I neck the second dose. And stay glued to the loo for the rest of the night. There is brown, foul-smelling water running out of my bottom. I had thought there would be stomach cramps, but that doesn't happen, just liquid, so much liquid (the laxative stops the colon absorbing water and shifts the whole system into overdrive, so it's flushing out as well as simply clearing the bowel). The action slows down a little overnight but I'm still up a couple of times. Lovely.
The hospital calls and leaves a message on my voicemail. Can I please come to the hospital outpatients' department to collect a bowel pack? Apparently I need to do this at least a week pre procedure and between the hours of 9 and 5, Monday to Friday. Now whatever people think about the UK benefits system, it does not pay enough for people who don't work to have private medical insurance. There is therefore a pretty good chance that I HAVE A JOB. No, I cannot do this in the 2 day time frame (work is manic, lots of people on holiday and I already have to take two full days off plus one day working from home next week). And I cannot get through to Outpatients to explain this. Fortunately the consultant's secretary, who I call in a flap, comes to my rescue and sorts it out.
Bowel pack collected (NB: if you ever need this done you can't, whatever they say, just walk in and pick the pack up. It's like a medical appointment), the serious prep starts Tuesday. I eat nothing but jelly, yoghurt and cup a soup all day, nothing solid or with any bits in. Surprisingly I don't get hungry, although my colleagues think I'm very odd. I decide that beer is a liquid, so I don't cancel drinks with my friends from my old workplace but get through 2 lager shandies, to no ill effect. Wednesday is clear fluids only, meaning that I drink beef consommé and Marmite for the first time in years. Again, surprisingly not hungry. At noon I'm supposed to take the first laxative, which comes with the warning that after taking it I should stay close to the toilet. However, I have a conference call and decide that an hour won't make any difference, so at 1 pm I neck the powdery solution and wait. And wait. And wait. Nothing happens.
So at 5 pm I neck the second dose. And stay glued to the loo for the rest of the night. There is brown, foul-smelling water running out of my bottom. I had thought there would be stomach cramps, but that doesn't happen, just liquid, so much liquid (the laxative stops the colon absorbing water and shifts the whole system into overdrive, so it's flushing out as well as simply clearing the bowel). The action slows down a little overnight but I'm still up a couple of times. Lovely.
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