Sunday, 30 September 2012

And finally some good news

Chemical consultant's secretary calls on Friday. She has faxed the details of the ovary jab to the surgery - thankfully, because I had forgotten what it was called, making life really difficult for the receptionist as she had no idea what she was trying to help me with (I should say at this point that doctors' receptionists, at least at this practice, are marvellous when you need them to be. Like when you are trying to arrange an appointment to get a drug you can't remember the name of that has to be done in a two day window so you can start chemo, and they have to try and help). She (chemical consultant's secretary) also has my cancer marker blood test results. They are normal so chemo can start. This is the best set of test results we have had from a consultant for a while. DH and I were starting to think that they could only ever be bad news.

Slowing down

The old saying that work expands to fill the time available is completely true for me. It's just that normally, with a minimum of an 11 hour working day (including commute), my time available is minimal so I live in perpetual fear that if I stop for a moment, the whole pack of cards will come down. But now I have nothing to do except focus on getting better, so a) this should be a relief and b) the things I do have to do should all be getting done, right?

What do I have to do? No work emails, but lots of messages from friends and people I haven't seen for ages, particularly thanks to Facebook where I am being very open about my condition and consequently getting lots of contact from old school/university friends, work colleagues, sports club friends and ante natal club (real and virtual) friends. Lots of texts. Bunches of the most glorious flowers. Cupcakes in abundance (my children are ecstatic, my dentist less so). A fabulous recovery pack from a bunch of friends I see all too rarely but which includes biscuits, nail varnish, word puzzles and some lovely bath products. I almost don't know where to start with getting back to everyone and thanking them. Then there's the diary management: lots of people want to come and see me, which is fab. But the uncertainty about the chemo is making this bit difficult as I have no idea what state I'll be in at any given point. The only practical way to deal with this one is to carry on as normal and hope that people don't mind if I flake out. Medical appointments also complicate this one, as for a change I don't think I can be choosy about times and so many appointments seem to be needed. I'm gutted to have to turn down lunch next week with an old, close friend who is having a similar period of down time for medical reasons and who is clearly finding it hard, because I've got lengthy medical appointments every day except Monday. There's all the admin that goes with being ill, of chasing down appointments (the ovary stopper jab took half a day and 5 phone calls to organise), getting authorisation from the insurance company, keeping work up to date on progress. Finally there is organising the support network and finding them all something to do - recovery is so good that there isn't much I can't do but I do still need people to help when I get tired.

Clearly I need a secretary. How lucky am I to have this problem though - finding myself busy because so many people want to help? How people get through this without this kind of support network I don't know and I'm pleased I don't have to find out.

Friday, 28 September 2012

Step 2: chemo

First meeting with the oncologist yesterday. What a job that must be - all day every day dealing with the fall out from cancer diagnoses. I wonder if it makes you hard, just to cope with it all?

Despite warnings, my oncologist is not the stern, hard dragon I was expecting. She fires a huge amount of information at us very quickly, in a matter-of-fact fashion, but her opening line is "You must feel like you're on a roller coaster". She clearly understands.

The business end: staging wise, this is Dukes C. Not the worst, but not the best either. It is entirely possible that the cancer cells that are still in my body will not cause any further problems but medicine at the moment can't tell you which will and which won't, hence the chemo as a belt and braces exercise. She, too, wants me to see a geneticist to look at the family risk, but that's for later. Right now the regime will be a three week cycle of a two hour drip of Oxaliplatin then two weeks' of Capecitabine tablets, with the third week off. Repeat seven times. Side effects wise, I shouldn't lose my hair but it might thin. They will give me lots of anti-emetics for the nausea. Bowel function will be affected but which way is impossible to say. I may lose my appetite. I may be very tired. I may get pins and needles in my hands and feet. I may feel woozy, particularly on drip day. But otherwise life carries on as normal - I can drink, work, drive (except when feeling woozy), have sex and eat what I want.

A couple of things did surprise me. Sex requires condoms as bodily fluids can carry traces of the chemo drugs and so I could pass them to DH. Also she didn't mention compromised immunity, I did. Apparently, I just have to be sensible. In fairness, she is very sensible, pointing out that I have two small children and therefore can't live in a clean bubble; but if I suddenly feel unwell or get a temperature I should call the hospital immediately. Food wise, the things that could cause a problem for anyone who's immuno-compromised should be avoided.

The final surprise related to fertility. I'd assumed that it wasn't an issue as we always intended to stop at two children, so we gigglingly answered, "No!" when asked if we were planning more. But what I hadn't known is that chemo can trigger premature menopause and the likelihood of this is reduced if my ovaries are shut down for the duration of the chemo. So early next week I need a particular jab to start this process. I'm not clear what the side effects of this might be but it rather sounds like I'll be joining the hot flush set for a bit.

We are only with her for 15 minutes or so, then the specialist nurse takes over. More blood is taken, and I'm booked in for the pre-admission appointment on Wednesday as well as the first chemo session on Thursday.

My primary sensation is one of relief as we wander the shops afterward, looking for outfits for a friend's wedding next Saturday. I'm tempted to ask if we can delay for a week so I can go to the wedding unchemicalled, but DH quickly squashes that one. It's my text hugging friend anyway, so she will definitely understand if I'm flakey on the day. I'm not missing it though, not for the world!

Once home I try and take in the Macmillan leaflets on the side effects, but I can't. Physically and emotionally I am done in. It seems I wasn't as on top of the emotional turmoil caused by the wait as I thought I was.

Wednesday, 26 September 2012

The Waiting Game

Now I've caught up with myself, really. "Out of Sequence" and "One Step at a Time" take us to where I am now. There has been an awful lot of sitting around, sometimes accompanied by tea drinking and sometimes not, sometimes accompanied by cake and sometimes not. More people have been told. The house is full of the most beautiful flowers, from my closest friends, my oldest friends, family and my work. DH's work phone him often, and send a gift basket containing, amongst other things, emergency chocolate. Lots of people come to see me: one brother travels hundreds of miles to be with us for four hours, a glorious four hours where my parents, both brothers, my husband and my children are all together in our garden, racing around playing football and on the trampoline. And as the days go on, I'm less tired and able to do more. By the end of week two at home, I can do the school run, much to DD's delight. My in-laws leave after the end of week one, to be replaced by my parents, then in week three DH goes back to work, TN is back and parental support is down to visits to help with bath time and meals on wheels.

Everyone is waiting, waiting for the oncologist appointment which is this Thursday (27 September). When I spoke to her (very efficient, slightly scary) secretary, there was nothing earlier. And until then I can do nothing but sit and wait. There is nothing to tell anyone, no action to take, no steps forward.

Thankfully parental support also includes the increasingly vital exercise of Getting Me Out of the House. I am getting more and more narky at my invalid state, mostly because I have nothing to do but wait. Given my life usually moves at 100 mph and I would usually give my eye teeth for a sit down, with a cup of tea and a good book, you'd think I would be enjoying the time off but no, there's no pleasing me. The day I realise how serious this is is the day I'm pottering about being annoyed that I can't go to the wool shop for wool for my next project (I've taken up knitting to keep me occupied). I have officially gotten old and need to get out.

Mum offers me a day out. It is to the Early Early Christmas Fair at Tidworth House, in aid of ABF - the Soldiers' Charity. I'm not sure this is an improvement in my aged state, but I've jumped at the chance!

Back to the NHS

Up until I got home, I've been Outside the NHS. Now I'm back, my care reverts back too. As an aside, I have no issue with using the bits of both systems I need. Using the private scheme my employer gives me means one less person using NHS resources. Yes I'm paying to get seen quicker, but that makes the queue shorter for others who can't pay. But I also pay a large amount of tax every year and as far as I'm concerned that means I can use the NHS too. I'm entitled to stuff all else out of the State and I do try and cause the NHS as little trouble as I can.

The interface between NHS and private blows my mind though. I have no idea how it works and as my previous experience of asking the NHS to cope was of exercising my right to choose a birth hospital and even that, within the NHS, was a nightmare of multiple forms, transfers between teams and, most irritatingly, denial of responsibility for care (not my problem, you want [insert non-available team here] or, I don't know what you need to do now), I figure I had better work out how two parallel, supposedly symbiotic systems work together.

That's a bit of a rant, apologies. Whilst I do think the NHS is an overly bureaucratic system that is not always designed in the best interests of its patients or its staff, I do nonetheless think it is a wonderful thing that the UK has a healthcare system free at the point of use and we are very privileged to have it.

Anyway, Wednesday's task is a quick trip to the GP who referred me to say hello, I'm back and now what? She's been on holiday and is catching up with my case when she calls me in, and she's surprised by the turn of events. She's surprised because, after the diahorrea episode that triggered this all off, my bowel habits were returning to normal, leaving the only obvious symptom as blood in my stools. Once she's got over that bit, she deals with all our questions: who changes the dressing if it's needed (the practice nurse), who provides new dressings (the NHS - here, have a chit that exempts you from prescription charges for 5 years), will anyone come to see me at home?

DH asks the last question. Her answer is, "If you are physically unable get to the surgery, call an ambulance. You have just been through a massive insult to your body and you will need urgent medical attention."

I leave with a mental picture of the plumbing consultant shouting, "Fuck off!" at my insides.

Tuesday, 25 September 2012

Bowel surgery vs pregnancy

1) For the former you get a spinal block without asking; for the latter people try everything to discourage it (1 point to bowel surgery - controversial, and I don't really wish I'd had epidurals during labour, but not being able to feel anything would have been marvellous at times).

2) After the former you can't drive for 6 weeks; same after the latter if you have a C-section (no score draw - this is a rubbish result either way).

3) After the former, you can't sleep on your side; same during the latter (score draw; using a pillow to prop up the stitches/bump works well).

4) For the former you get encouraged to stay in hospital; for the latter they kick you out ASAP (1 point to bowel surgery - I understand why they kick you out, but really everyone could do with a few days lying in).

5) During the latter, you get repeatedly kicked in various places around your abdomen and get vicious  heartburn. After the former, the air they pump in feels like both of these (1 point for pregnancy here, having these inflicted by a baby is preferable to being inflated like a balloon).

6) After the former, your first poo is very scary. Same after the latter. No comment.

So 3:2 to bowel surgery, it seems. Surely some mistake?

Home

Having achieved the qualification standard for hospital release, I can go home. This does take until late afternoon - no issues with beds and turfing out patients here and Monday seems to be a busy day for admissions. The weekend was very quiet and only half a dozen of the rooms were occupied, mostly by very elderly patients which increased my feeling that I didn't belong here any more. Keeping DH calm whilst we wait for the discharge nurse is tricky as he just wants to go. But eventually we are released into the outside world and the longest walk I've taken for nearly a week.

Despite DH's best efforts, every braking or cornering manoeuvre  pulls the seatbelt into my stomach and I jump about 3 feet in the air. Then he apologises. The route home takes in three large roundabouts and some winding back road. There is a great deal of jumping and apologising.

By 8 pm I am shattered. Everyone - my parents, my in-laws, my children - are at home and pleased to see me. It quickly becomes too much and I slink off to bed. Tuesday I am still wiped out and spend most of the day in bed and furious with myself because I haven't done anything and yet I'm exhausted. I might be home but there's clearly a long way to go.

Sunday, 23 September 2012

Success!

To: DH
Time: 06:43
Text: I have done a poo!

Morning dear!

Progress

To my amazement, by Sunday I'm getting ready to go home. Most machines were unplugged on Saturday, just in time for the children coming in to visit (not that they cared by the time I played my trump card and showed them I could get Cbeebies on the tv in my room - anything to stop a highly inquisitive two year old with a talent for pushing buttons (literally and figuratively) from playing with the remote control on the bed, and also to distract DD who is getting distressed by the cannula in my left hand). Getting Out of Bed, Going For A Walk and even Climbing Stairs were achieved without incident. I even take a shower for the first time, and it is the best shower ever.

The plumbing consultant came in on Saturday morning and his colleague comes on Sunday. He was in theatre for part of my operation and it strikes me as strange to meet someone who is better acquainted with my bowels than he is with me. Both have one achievement in mind: before I can go home, I have to have a poo.

Food is now going in, in small amounts. Air is growling around my belly and I am, ahem, passing wind, which is apparently a sign that the join is working properly and the bowel is moving in the right direction. Apparently when it's touched the bowel can stop moving completely which is, according to a nurse, not a good thing. But, apart from wind and some large lumps of blood that stink to high heaven, nothing else is forthcoming.

This is worse than having toddlers around. Now everyone feels entitled to ask about my bowel habits, particularly DH who is now texting for updates. I promise to tell him the moment anything happens, if he will just stop asking!

Hospital

Most of Thursday and Friday are a blur. My parents visit on the Thursday; my poor Dad, fresh off a plane from Pakistan, makes a beeline for my bedside as soon as I am round. DH comes back Friday morning but I inadvertently give myself two shots of morphine and stop making any sense at all for a while. I can understand how people get addicted to this stuff - it makes you float away, although I don't get any of the nice dreams that others I know have had.

Friday's big events are Getting Out of Bed and Eating Food. A small army comes to execute the first: the physio and two nurses. It takes an age to unplug me from the various devices. We are talking about a distance of less than a metre from the bed to the chair, something that 48 hours ago did not present a significant challenge. Well now it might as well be Mount Everest, and I even have the oxygen supply. Sit up - ok. Stand up - yup. And sit down again quick before I fall down. The picture in my eyes is breaking up like a satellite signal in a thunderstorm and it takes 5 minutes before normal service is resumed. Back to bed then.

A nurse persuades me that the second is a good idea although the idea of putting anything in a digestive system that's just been redesigned is a bit scary. Leek and potato soup - that should be ok; there doesn't seem to be curry on the menu so no need to rise to any serious challenge. I can barely eat half of it before my stomach is full. No solid food in four days seems to mean my stomach has shrunk to the size of a walnut, but it's a start.

I Skype home. DS is not bothered, but I have to remove the oxygen tube before DD is comfortable speaking to me.

Sleeping is difficult and seems to be the result of morphine/exhaustion rather than in accordance with any pattern. This is not helped by the pain in my shoulders which is, I'm told, the reflection of trapped wind in the bowel cavity as the surgeon pumps air in to get a better look during the procedure. Nor can I lie on my side which is my usual sleeping position, as it feels alarmingly like the wound will split. And there's still the regular obs to be done; Saturday night sees a lovely nurse who seems to get that I need cleaning up without asking so when she comes to check on me she makes sure to clean me up too, which makes me feel more human. For some reason I don't want to read books and watch tv so I go for my iPod. Sometimes having a preference for rock and metal is not a good thing, but I do have a small stash of folk music and the soothing tones of The Unthanks seem to help me drift off.

Friday, 21 September 2012

In recovery

Stop shouting! Can't you see I'm trying to sleep here? The nurse running the recovery room is working at full volume. It's bad enough that the automatic blood pressure cuff keeps doing its thing, but I really wish she'd stop shouting. Enough of my brain works to register that the recovery room is filling up very quickly, so she's probably a bit stressed, but also enough of my brain works to register that all discussions are being carried out as if the patients are wholly unconscious which, of course, in a recovery room we're not.

I'm aware of being back in my room, of DH being there, of the plumbing consultant being there. "How much did you take out?", I ask. "A foot", comes the reply. "I thought this was a bowel operation", I retort, before losing consciousness again.

A nurse tells me what's going on. There's a catheter, which doesn't really bother me at all, and a saline drip into my left hand to get my fluid levels back up. There's a morphine PCA machine into the same cannula - opiates on tap, I bet there's a few people who would wish for those; and Paracetamol infusion too. My calves are sporting the latest in compression boots, deflating and inflating alternately to prevent DVT, and there's a tube feeding oxygen into both nostrils as well as the automatic blood pressure cuff on my right arm. In short, I am tethered to all four corners of the bed. I am also desperately thirsty but have to ask someone for even a sip of water. This is ok when DH is there, but when he goes I have to ring for a nurse and surely they have better things to do than give me water?

It takes until 6 pm until I'm fully conscious. The operation has taken 4 hours and is a great success: a good anastemosis (join) between the two pieces of bowel and, mercifully, no stoma.

But the after effects are horrible. The laxative is still working, so there is still brown water moving out of my bowel but now it's mixed with post op blood and I can neither stop it nor do anything about it. There's nothing to soak it up but my gown and my bed; I try and explain but no-one seems to understand that I'm not bothered that it's happening but I am bothered that I'm lying in it. I'm also aware that my period is due any minute and I can't feel anything properly so I don't know for sure what's going on. By 9 pm I am sweating and hot and feel horribly sick, but there's no vomit bowl in reach and I can't move. I ring for a nurse - the only action I can take - but no- one comes quickly enough to spare me vomiting all over myself. By the time someone comes, which feels like ages but is probably only a couple of minutes, I have given in to the embarrassment and disgust of lying in a tethered heap of my own shit and blood and vomit and cry and cry and cry. Properly feeling sorry for myself crying. Finally, gentle nurses come and clean me up, change my gown and my bed  as dignified a manner as possible, give me anti-emetics and calm me down.

The night passes in a whirl of activity: more vomit, more cleaning up, more observations. It's a wonder anyone gets any sleep at all in hospital, it's not the most restful place. By the early hours I'm still vomiting and the possibility of a naso-gastric tube is being discussed (apparently this helps, not sure how). Thankfully 6 am is the final hurrah, and I can get some sleep at last.

Call the plumber!

Thursday 6 September. Surgery day has arrived and I don't mind admitting I feel wretched. Sheer terror of the surgery is compounded by a) not having eaten anything since Monday night, b) not having drunk anything since midnight last night, c) having to take the laxative again yesterday so I'm leaking brown water again, and d) not having slept. I'm curled in on myself, physically and mentally, because I am desperate not to cry. 

TN is in early so DH and I can leave on time at 6.30 am. Just before we go we wake the children so I can say goodbye. We did think about not waking them (at the moment, mostly, they sleep until about 7) but I can't bear not to.

The hospital is quiet, the car park empty, and we are led up to the ward almost instantly. My room is right outside the nurses' station as it is a high dependency bed, but is otherwise unexceptional. The nurse admits me and remembers me from the colonoscopy. The anaesthetist appears, looking remarkably like he has only just got out of bed, with his jacket collar up - I'm aching to turn it down for him but remind myself that he is about to be in charge not only of my consciousness but also of my pain relief, so I behave. His bedside manner needs work though as he rattles off what will be done at top speed, as if he's learnt it for a poetry test at school. There's nothing poetic about what he's going to do: spinal block plus GA. I pushed out two babies without an epidural and NOW they want me to have one? The consultant is next, and it's not until he asks me how I'm feeling that I admit how scared I am. But his visit is a brief courtesy one and I shan't see him again until it's over.

8 am and DH walks down the corridor to theatre with me. This time (unlike the colonoscopy) I have brought a dressing gown so my backside isn't showing to the world and I'm not scampering to theatre, crablike, trying to hold the back of my gown closed. The theatre team are lovely - an Eastern European nurse who gives me her tips on childrearing, though she has no children herself, and an agency nurse who clearly has the most amazing set of dreadlocks underneath his cap. The anaesthetist is much better here in his own domain, sympathetic to my fears about getting the cannula in after Wednesday's experience. He does it easily and painlessly and I want to hug him. Anti-biotics go in, then I'm sat upright and curled up over a pillow for the spinal block. First a local, to stop me jumping away when the main event occurs, then the block itself, and within minutes I can't lift my legs. The worst bit actually is the cold spray used to clean the site, which really does make me jump and he uses it again to prove that all feeling is gone below the block site.

All the while we're chatting, the four of us, and the inevitable question comes up, "What do you do?". Now I try not to admit this at the moment, as I work for a bank and they're not exactly top of the popularity stakes just now. But I cough up the information anyway, to groans from the theatre team. So when they ask who I work for I refuse to say - I want to wake up from this operation!

Then I know nothing more.

Life insurance

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.

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.

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.

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!

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...

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.

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.

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.

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.

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.

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

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...

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 consomm√© 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.

Wednesday, 12 September 2012

Maybe not at family parties

I have private medical insurance. In the UK, this is a licence to queue jump and see the same consultant that you probably would have seen on the NHS, but quicker and possibly for a slightly longer appointment time. So within a very short space of time I am in front of a man whose daily life involves looking at people's bowels.

The same stomach palpation. The same result. This time not only does he want to look at my bottom, he wants to put a camera up it as well. This is a test called sigmoidoscopy, which looks at the lowest bowel section. It involves blowing air in, for a clearer view. So, at the end of the consultation, when you are supposed to be concentrating on next steps, you are desperately trying not to fart long and loud in front of pinstriped professional to whom you are talking.

As the sigmoidoscopy shows nothing, there are two further tests. One is a colonoscopy, which is a a camera all the way round the colon. I am thankful to hear that I will be sedated for this. But first there's a trans-vaginal ultrasound to rule out any obvious gynae and pelvic tissue issues, such as ovarian cysts. Only if that shows nothing is the colonoscopy necessary.

The TVU takes place about a week later. The Olympics have kicked off by this point and the doctor doing the procedure and I are swapping our Olympic experiences as he does his stuff (he has been to the tennis and was disappointed by how disinterested some of the professionals were in being there; I have been working as a GamesMaker and am having a great time - this procedure is taking place on one of the only two days I am doing my real job during the Olympic period and so I am working from home).  The procedure takes a surprisingly long time as he looks at my liver, kidneys, uterus, ovaries and general stomach area; it's also surprisingly invasive - I should have paid more attention to the name of the procedure really, rather than harking back to the stomach surface gliding scans of pregnancy. One thing is the same - the full bladder and the great joy of having someone press down on your stomach when you really need a wee. Right. Now.

I'm directed to change back into my clothes and wait in an adjacent room. The nurse comes back and offers her apologies, but the DVD burner in the computer is not working so unfortunately she will not be able to give me a copy of today's results to take home, although the consultant will be able to access them.

Honestly, what would I have done with them? Shown them at parties? "Look, Granny, that's my left ovary."

Testing, testing

As I mentioned above, I'm a doctor dodger most of the time. The NHS is an amazing beast and as far as I'm concerned my part of the contract with it is not to clog up the system with minor complaints I can deal with myself. What I need the NHS for mostly is my children and the system works very well for them. However, I am also an asthmatic and have, over the years, spent more time with doctors and healthcare professionals than I would like. Based on this extensive research I have come to the conclusion that some doctors just don't like patients, who get in the way of them actually doing their job.  Which is, erm, making people better? I may be being grossly unfair and just caught a number of them on a bad day (and/or they've been trying to get me to attend an asthma clinic - don't get me started on the ridiculous waste of time that is sending a fit and otherwise healthy person with well managed asthma to a 5 minute session where I will be told how to take an inhaler and use a peak flow meter (things I've been doing for 30 years). I understand GPs get paid extra for referring patients to these clinics so I don't play ball.). I also know that only ten minutes are allowed for each appointment  including admin, so it doesn't take many people with problems that actually require some time for a backlog to build up and then you want to get the easy cases (me) out the door quickly.

However, the GP this time is not trying to push me out the door. I've seen her before and she's lovely. Quiet, thoughtful and generally gives the impression that no matter how trivial the problem she is there to help you out. This time she helps me out by giving me a sample bottle with a spoon attached to the lid and by having a good feel of my stomach. Which, to my surprise, rather hurts in one particular point around where I imagine my appendix is. This time she does ask to see me again, in a week.

The work diary doesn't permit this for a couple of weeks. It took a couple of weeks to arrange the first appointment - I wasn't worried, based on the previous assessment in 2011 - so now we're into July. I have duly scooped my poo sample (which wasn't the comic turd chasing exercise I had imagined, by the way, it was quite easy and nowhere near as messy as it could have been) and dispatched it to the lab. But, says the GP, nothing showing there by way of bacterial infection. Could still be a virus. She palpates my stomach again and gets the same pain response. I have completed the magic sequence that opens the gateway to a consultant referral.


In the beginning

Not the beginning of me, that's no different to the rest of the human race and if you don't know about the birds and the bees rights now then I'm not about to teach you.  I mean the beginning of finding out about the cancer.  I can't mean the beginning of the cancer because I don't know that yet and may never know. That's going to be a whole different quest, if you like.

It's unavoidable that there is going to be a lot of discussion of poo in this blog. Firstly I have a toddler who isn't potty trained, so there is a general need to address poo as a matter of family concern on a daily basis. Secondly, in my case, this is a bowel disease and bowels make poo.  And poo was where it started. Blood in my poo.

Sometime after DS was born, I started to find blood on the loo paper when I'd wiped after a poo. I assumed, as you would do, that one of the many permanent changes my son had wrought on me physically whilst I was pregnant with him was a good case of piles and this was nothing more than that. But it started to happen more and more frequently. I was vaguely aware - the bowel cancer awareness in the UK isn't great - that blood in your poo persistently for a period isn't a good thing, so I went to see my GP. Who was about as sympathetic as a Vogon. I don't remember which GP it was - to me, a doctor dodger in most circumstances, the timing of the appointment tends to be more important than who I see so it doesn't interfere with a working day. So it could have been a locum. Anyway, all he did was look at my bottom, have a quick feel internally and then said nothing. Not even, "If it doesn't improve, come back."  My overall impression was that I had wasted his time. So I assumed it was nothing and carried on.

2011 turned into 2012. January turned into June. Thanks to 6 months in India before university and a proper student lifestyle of questionable food hygiene, there isn't much that upsets my stomach, so a week long bout of diahorrea preceded by sharp stomach pains was definitely out of the norm. And so was the blood. Blood in normal poo was par for the course by this point - you could see it streaking the outside - but this was new. So back to the GP it was.

Tuesday, 11 September 2012

The background

It's not on my profile, so here's a little bit of background to give you some context for what follows.

I'm female, in my late 30s, married with two children (DD (5) and DS (2)) and live on the outskirts of a large town in Surrey. Normal life involves commuting to London 5 days a week to a desk based job and generally trying not to have carefully balanced family arrangements (DH also works full time) come apart at the seams. So it's busy, stressful, relentless but also rewarding both in the financial sense and the achievement one. I am lucky and I know it and I thank God for it on a frequent basis.

When I get the time I go running, cycle, drink wine, ride motorbikes and ski. So far, so not really anything exceptional!

The ground rules

Just in case anyone other than me ever does read this, I thought a few ground rules might be in order:

1) I have never blogged before. I haven't written a diary since I was in my teens. Please be tolerant of my writing style and my technological ineptitude. Constructive suggestions/tips welcome though.
2) I'm not responsible for other people's comments but I reserve the right to remove any I choose to remove for whatever reason. I'm not into censorship usually, but if you can't enter into a spirit of being supportive to me or others then this probably isn't your best forum. And it's my blog.
3) If you happen to work out/know who I am in RL, please keep it to yourself. I'd just prefer it that way.
4) There may be too much information in here; you may not want to read this whilst eating.

The first post

"Stop all the clocks..." Anyone else remember that scene from Four Weddings and a Funeral where John Hannah reads WH Auden's powerful expression of grief, perfectly describing that moment when you feel that your life has changed irrevocably and that nothing will ever be the same again?

My current "Stop" moment came around 5.45 pm on 30 August 2012. That was when the consultant finished drawing his diagram of what he'd found in my large bowel the previous Thursday and, with a circular flourish of his pen around the top of the mushroom shape he'd drawn, said, "And the biopsy showed some cancerous cells in the top here."

When I told people about the diagnosis, a couple suggested that I blog about it. Initially I thought not: privacy, it's a bit of a grim subject, not sure what others will think, blah blah. But then I thought that this would be a good way to capture some of what's happening, maybe make some sense of it and maybe other people would like to read it too.  Or maybe not... So, this is my diary of what happened/is happening to me, my experience of bowel cancer and quite possibly some other ramblings along the way.