Wednesday night, DH and I go through all the paperwork. Where's the will, where are the life insurance policies etc. DH knows none of this as his idea of filing is a large pile of paper whereas mine involves files, labels and order (control freak, moi?). I certainly don't waste the opportunity to point out that he is at a disadvantage here, although he has managed to regain access to the joint account all by himself, which dismays me a bit. Anyway, we find everything and, as a kind of National Lottery bonus ball, find a critical illness policy we took out ten years ago tucked away as well. It doesn't cover cancer in situ, which is what we think this is, but it's an unexpected find, like a fiver in your clean jeans.
That finished, DH stands up, stretches and announces, "Now we've sorted out the life insurance policies, I'm off to clean my gun."
Well, it made me laugh.
Friday, 21 September 2012
Wednesday, 19 September 2012
The big metal doughnut
And it's Wednesday, so it's CT scan day. This is provided by the NHS, so DH and I are in the sprawling outpatients' department of the large NHS hospital on the same site as my private one. My pre-op fast, of clear liquids only (no jelly this time), started on Monday night and I've been instructed not to drink anything before the scan. Consequently, despite the warm September sunshine, I am freezing cold and wearing a huge jumper.
We have an early appointment so the Radiology department is largely deserted when we arrive. The radiologist gives me a large measuring jug with a litre of water in it and tells me to drink all of that over the next 15 minutes; I'm so thirsty that I have to stop myself gulping it down.
The scanner room is icy cold - to keep the equipment at the right temperature - and I have to take off my jumper because it has metal eyes for the drawstrings. The scanner itself is a doughnut, not a tube, so no issues for the claustrophobic, and the radiologist explains that she will put something into my veins that gives a better picture. This apparently has side effects that can include feeling very warm (I'd be grateful for that at this point), a metallic taste in my mouth and making me feel like I've wet myself! When she asks about my allergies I give the medicine ones and am slightly surprised to learn that she isn't interested in these but in the common or garden atopic ones of hay fever, horses, dogs - apparently if you have these allergies it is more likely that you will react to the stuff.
So I lie down on the bed and she goes to put the cannula in. Now I am very proud of my veins. At blood donations I am complimented on them and how easy they are to find and cannulate. Always an odd thing to say, I thought. But right now, with no food in me, no water and in the freezing cold room, they give up and the cannulation hurts. Really hurts. Finally she finds the vein, rigs me up and leaves me lying on the bed with my arms above my head.
The machine starts with a mechanised voice asking me to hold my breath. The doughnut moves over me and I'm instructed to breathe out again. A couple more sweeps and the radiologist then announces that she's putting the stuff in my veins. Thank goodness she warned me because all of the effects she warned me about actually happened - very very weird! A few more sweeps and it's all done. The actual scan has taken about 5 minutes but the prep about 40 minutes. I'm so grateful to be able to put a jumper on. The radiologist assures me the report will be with my consultant this afternoon, in time for the op tomorrow.
DH and I go to the hospital cafe for something normal to do, as at least I can have a hot, sweet black coffee. He is concerned that I am being confronted with breakfast service of sausages, bacon, eggs etc, but I insist (and it doesn't seem to bother me). Whilst there we bump into one of our old neighbours who has arrived for some physio and we manage to talk for 7 minutes or so before I tell him why we are there. He is clearly upset and we part with the longest of hugs, and I feel guilty for not being upset. Because it's still not happening to me.
We have an early appointment so the Radiology department is largely deserted when we arrive. The radiologist gives me a large measuring jug with a litre of water in it and tells me to drink all of that over the next 15 minutes; I'm so thirsty that I have to stop myself gulping it down.
The scanner room is icy cold - to keep the equipment at the right temperature - and I have to take off my jumper because it has metal eyes for the drawstrings. The scanner itself is a doughnut, not a tube, so no issues for the claustrophobic, and the radiologist explains that she will put something into my veins that gives a better picture. This apparently has side effects that can include feeling very warm (I'd be grateful for that at this point), a metallic taste in my mouth and making me feel like I've wet myself! When she asks about my allergies I give the medicine ones and am slightly surprised to learn that she isn't interested in these but in the common or garden atopic ones of hay fever, horses, dogs - apparently if you have these allergies it is more likely that you will react to the stuff.
So I lie down on the bed and she goes to put the cannula in. Now I am very proud of my veins. At blood donations I am complimented on them and how easy they are to find and cannulate. Always an odd thing to say, I thought. But right now, with no food in me, no water and in the freezing cold room, they give up and the cannulation hurts. Really hurts. Finally she finds the vein, rigs me up and leaves me lying on the bed with my arms above my head.
The machine starts with a mechanised voice asking me to hold my breath. The doughnut moves over me and I'm instructed to breathe out again. A couple more sweeps and the radiologist then announces that she's putting the stuff in my veins. Thank goodness she warned me because all of the effects she warned me about actually happened - very very weird! A few more sweeps and it's all done. The actual scan has taken about 5 minutes but the prep about 40 minutes. I'm so grateful to be able to put a jumper on. The radiologist assures me the report will be with my consultant this afternoon, in time for the op tomorrow.
DH and I go to the hospital cafe for something normal to do, as at least I can have a hot, sweet black coffee. He is concerned that I am being confronted with breakfast service of sausages, bacon, eggs etc, but I insist (and it doesn't seem to bother me). Whilst there we bump into one of our old neighbours who has arrived for some physio and we manage to talk for 7 minutes or so before I tell him why we are there. He is clearly upset and we part with the longest of hugs, and I feel guilty for not being upset. Because it's still not happening to me.
Monday, 17 September 2012
Denial
Looking back over the past few posts, I sound completely emotionally uninvolved. And I was (still am, a bit). This just wasn't happening. I didn't have cancer and this was all some huge fuss about nothing. I felt fit and well.
This is apparently completely normal. Perhaps it's a coping mechanism. From diagnosis on, I focused on the next step, the next thing to do.
This is apparently completely normal. Perhaps it's a coping mechanism. From diagnosis on, I focused on the next step, the next thing to do.
Two sides of the story
I have a friend whose husband went through this last year; DD has a playdate with her eldest on my only appointment free day before the op, so I invite myself along to get the inside track.
Very rudely, I am late as I am trying to finish a piece of work that I don't have to finish, but I want to finish, as some kind of normality and also to avoid dumping it on colleagues and/or someone not doing it the way I want it done. TN is looking after the children in the garden whilst my friend - let's call her Q - and I talk. It's the first time I've really spoken to her about it and it all comes pouring out: how little support she got, how horrendous the stoma and the bags were, how they nearly got landed with an enormous bill for her DH's chemo because the insurance company wouldn't pay out. And she picked all of this up, dealt with it all, ran around after her DH and two children, to the extent that she made herself seriously ill. There is one comedy point: apparently if you drink Bovril, it makes what comes out of the stoma turn blood red - there was an urgent call to the hospital that night before they worked out what was going on. Bless her, she is clearly concerned that she is scaring me, but I still haven't connected this with me and am more distressed at how horrendous it has been for her. She does give me the confidence that we're doing the right thing in being open with the children, as they were with theirs and our DDs are very similar in age and personality, so that's reassuring.
We finish the conversation sat on the sofas in her sitting room, watching the girls and a friend perform Cinderella. We keep getting told off for talking during the performance. Nothing like children for keeping you grounded!
Very rudely, I am late as I am trying to finish a piece of work that I don't have to finish, but I want to finish, as some kind of normality and also to avoid dumping it on colleagues and/or someone not doing it the way I want it done. TN is looking after the children in the garden whilst my friend - let's call her Q - and I talk. It's the first time I've really spoken to her about it and it all comes pouring out: how little support she got, how horrendous the stoma and the bags were, how they nearly got landed with an enormous bill for her DH's chemo because the insurance company wouldn't pay out. And she picked all of this up, dealt with it all, ran around after her DH and two children, to the extent that she made herself seriously ill. There is one comedy point: apparently if you drink Bovril, it makes what comes out of the stoma turn blood red - there was an urgent call to the hospital that night before they worked out what was going on. Bless her, she is clearly concerned that she is scaring me, but I still haven't connected this with me and am more distressed at how horrendous it has been for her. She does give me the confidence that we're doing the right thing in being open with the children, as they were with theirs and our DDs are very similar in age and personality, so that's reassuring.
We finish the conversation sat on the sofas in her sitting room, watching the girls and a friend perform Cinderella. We keep getting told off for talking during the performance. Nothing like children for keeping you grounded!
Pre-op mayhem
First appointment on Monday is the pre-admission nurse, for bloods, urine, blood pressure, body mass index and collecting all the thousands of pieces of data the hospital needs. They have all this from the colonoscopy, but they need it again and more for in patient procedures. The nurse is marvellous and answers all our questions about what will happen at the hospital pre and post-op. it's a surprise to me to learn that post-op I will have a High Depency bed because my nursing needs will be high. That hadn't occurred to me. There will be saline drips, IV pain relief, a catheter and compression boots to prevent DVT. All I'm focused on is what we tell DD and where the balance is going to be struck by letting her visit and yet not have to deal with all the kit. Despite this, both DH and I leave feeling that we are better prepared and that we have been given lots of time.
Stoma nurse next, when we can track her down in the maze of the adjacent NHS hospital. It does surprise me that anyone chooses to specialise in this area, but I'm grateful that they do although in this case I'm hoping to avoid their services. An ileostomy might be needed to allow the anastomosis (bowel join) to heal, so she's prepping me for the worst case scenario. She is relentlessly positive that it is all very straightforward, simply a matter of popping bags on and off this tiny protrusion of bowel, or easy emptying of bag contents. Intellectually I get that this is nonsense, of course it's not going to be simple, but I'm not really listening because I don't believe it's going to happen. Nor does she, given what the consultant has said to her, so her heart's not in it either and she spares me the practice pack. She does give me a desperately over-optimistic magazine sized publication showing lots of happy smiling people with ileostomies. All the people pictured are grey haired, which doesn't help me connect with the idea at all. The most useful thing from the appointment is that I see her copies of the consultant's letters to my GP so learn exactly where the polyps are and what he's done (small one in the transverse colon, removed; large one in the sigmoid bowel, hot biopsied, containing moderately differentiated adenocarcinoma cells). Interestingly he also comments that my thyroid count is low - maybe my eternal exhaustion isn't just down to two children and a full time job. GP hasn't picked this up yet, so I add it to the list. Probably not no. 1 priority right now...
Stoma nurse next, when we can track her down in the maze of the adjacent NHS hospital. It does surprise me that anyone chooses to specialise in this area, but I'm grateful that they do although in this case I'm hoping to avoid their services. An ileostomy might be needed to allow the anastomosis (bowel join) to heal, so she's prepping me for the worst case scenario. She is relentlessly positive that it is all very straightforward, simply a matter of popping bags on and off this tiny protrusion of bowel, or easy emptying of bag contents. Intellectually I get that this is nonsense, of course it's not going to be simple, but I'm not really listening because I don't believe it's going to happen. Nor does she, given what the consultant has said to her, so her heart's not in it either and she spares me the practice pack. She does give me a desperately over-optimistic magazine sized publication showing lots of happy smiling people with ileostomies. All the people pictured are grey haired, which doesn't help me connect with the idea at all. The most useful thing from the appointment is that I see her copies of the consultant's letters to my GP so learn exactly where the polyps are and what he's done (small one in the transverse colon, removed; large one in the sigmoid bowel, hot biopsied, containing moderately differentiated adenocarcinoma cells). Interestingly he also comments that my thyroid count is low - maybe my eternal exhaustion isn't just down to two children and a full time job. GP hasn't picked this up yet, so I add it to the list. Probably not no. 1 priority right now...
Sunday, 16 September 2012
Things you should never have to deal with with your children: 1) bury them; 2) tell them you have cancer
Saturday is also the day I have to tell my children. DS won't really get it, although he will understand that Mummy's not around for a bit, and I don't see any point in not explaining why. I don't know how much DD will understand - she's bright, but hasn't been close to anyone whilst they've been in hospital before.
We all sit in bed having pre-breakfast drinks, as is normal if we have a weekend day that allows a late start, and use the family cuddle time to explain what's happening. No tears, no drama, just very simply that Mummy has something growing in the tube that makes your poo that shouldn't be there, that she needs to go to the hospital to have it cut out and that the doctor will make it better, but that Mummy will be in hospital for a few days. Daddy and TN (The Nanny) will be around just as usual, and when TN goes on holiday, grandparents will be around.
DS asks, "Is Mummy going to hospital?", and goes back to playing with his cars when he gets an affirmative answer. DD goes quiet - not a good sign (she thinks that if she stops responding to people when there's trouble, it will go away). DH pushes the point, asking if she understands, and gets stonewalled. Eventually I intervene - she is clearly affected by the news and I don't see any point in pushing it further. We give her lots of reassurance about who will be around and making Mummy better, but it's Octonauts (UK children's TV programme) on the iPad that finally changes her mood.
She doesn't mention it again until she and I are walking back from the supermarket the following day. Outside the supermarket are some people collecting for the local hospice and DD asks what a hospice is. I explain that it's where people who need lots of medical help go so that they and their families can have a rest. I don't mention the dying bit, despite normally having a policy of being open and honest with her (thankfully we haven't had any, "Where do babies come from?" questions. Yet.), because I don't want to go down that thought trail and anyway I don't have cancer really. And I'm certainly not going to die from it. She follows up with a host of questions about what's happening to me: will it hurt? (yes, but the doctors will give me medicine to help), what's it called? (cancer), can I come and see you in hospital? (yes). I tell her that it's nothing she's done and she can't catch it because it's not germs that make this happen - that these are things that worry children is something I have picked up from the Macmillan website during my wee small hours web crawling. She puts her small hand in mine and we walk home together, talking about the new school term that's about to start.
We all sit in bed having pre-breakfast drinks, as is normal if we have a weekend day that allows a late start, and use the family cuddle time to explain what's happening. No tears, no drama, just very simply that Mummy has something growing in the tube that makes your poo that shouldn't be there, that she needs to go to the hospital to have it cut out and that the doctor will make it better, but that Mummy will be in hospital for a few days. Daddy and TN (The Nanny) will be around just as usual, and when TN goes on holiday, grandparents will be around.
DS asks, "Is Mummy going to hospital?", and goes back to playing with his cars when he gets an affirmative answer. DD goes quiet - not a good sign (she thinks that if she stops responding to people when there's trouble, it will go away). DH pushes the point, asking if she understands, and gets stonewalled. Eventually I intervene - she is clearly affected by the news and I don't see any point in pushing it further. We give her lots of reassurance about who will be around and making Mummy better, but it's Octonauts (UK children's TV programme) on the iPad that finally changes her mood.
She doesn't mention it again until she and I are walking back from the supermarket the following day. Outside the supermarket are some people collecting for the local hospice and DD asks what a hospice is. I explain that it's where people who need lots of medical help go so that they and their families can have a rest. I don't mention the dying bit, despite normally having a policy of being open and honest with her (thankfully we haven't had any, "Where do babies come from?" questions. Yet.), because I don't want to go down that thought trail and anyway I don't have cancer really. And I'm certainly not going to die from it. She follows up with a host of questions about what's happening to me: will it hurt? (yes, but the doctors will give me medicine to help), what's it called? (cancer), can I come and see you in hospital? (yes). I tell her that it's nothing she's done and she can't catch it because it's not germs that make this happen - that these are things that worry children is something I have picked up from the Macmillan website during my wee small hours web crawling. She puts her small hand in mine and we walk home together, talking about the new school term that's about to start.
Saturday, 15 September 2012
The whirlwind begins
To put this in the correct place in the narrative, we are at Friday 31 August and this comes directly after "Telling People".
Friday is a work day and I attempt to conduct it normally. Normal apart from the conversations about me having cancer and needing at least 6 weeks off work, that is. I admit the actual condition to some people and not to others, for no reason other than I find it hard to deal with the reaction I get: pity, tears, shock. And as I'm in denial anyway, it feels like a colossal fuss about nothing. It's just a few cells, surely this is OTT? The veneer cracks only when I speak to my consultant's secretary to book the procedure and she indicates that next Thursday might not be possible. I'd pinned my hopes on that and the possibility of a change in plans is more than I can cope with today. But she (God bless her, from the position of being on a day off and out and about in a nearby cathedral city) shifts things around so next Thursday is once again possible AND she has all the extra pre-op appointments organised. There need to be pre-op assessments, a chat with the stoma nurse in case I need an ileostomy bag and a CT scan to look for secondary tumours. The calls to fix the first two come in whilst I'm having my legs and bikini line waxed - seems like ridiculous vanity but who knows when the chance will come again?
My boss's boss is hugely sympathetic and says all the right things about taking time and not worrying about the job, but it doesn't assuage my guilt that their expensive and relatively recent hire is deserting them at a rather important time. I know no-one else thinks like that, but I do. So I stay late and put together a hand over note detailing everything I'm working on, who could take over and what needs doing. I cycle to and from my mainline train station, just as usual. This may be going to be a reason for things, but it is not going to be an excuse and besides, I don't know when I'm going to get on my bike again.
For the same reason I go running on Saturday, before my Mum comes round for lunch. We have asked her over, conscious that she would never insist on coming round but probably needs a hug as much as I do.
Friday is a work day and I attempt to conduct it normally. Normal apart from the conversations about me having cancer and needing at least 6 weeks off work, that is. I admit the actual condition to some people and not to others, for no reason other than I find it hard to deal with the reaction I get: pity, tears, shock. And as I'm in denial anyway, it feels like a colossal fuss about nothing. It's just a few cells, surely this is OTT? The veneer cracks only when I speak to my consultant's secretary to book the procedure and she indicates that next Thursday might not be possible. I'd pinned my hopes on that and the possibility of a change in plans is more than I can cope with today. But she (God bless her, from the position of being on a day off and out and about in a nearby cathedral city) shifts things around so next Thursday is once again possible AND she has all the extra pre-op appointments organised. There need to be pre-op assessments, a chat with the stoma nurse in case I need an ileostomy bag and a CT scan to look for secondary tumours. The calls to fix the first two come in whilst I'm having my legs and bikini line waxed - seems like ridiculous vanity but who knows when the chance will come again?
My boss's boss is hugely sympathetic and says all the right things about taking time and not worrying about the job, but it doesn't assuage my guilt that their expensive and relatively recent hire is deserting them at a rather important time. I know no-one else thinks like that, but I do. So I stay late and put together a hand over note detailing everything I'm working on, who could take over and what needs doing. I cycle to and from my mainline train station, just as usual. This may be going to be a reason for things, but it is not going to be an excuse and besides, I don't know when I'm going to get on my bike again.
For the same reason I go running on Saturday, before my Mum comes round for lunch. We have asked her over, conscious that she would never insist on coming round but probably needs a hug as much as I do.
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