Tuesday, 30 October 2012

Mending bridges

Before all the cancer stuff became the apparent, I was struggling with the concept of "stepmothering". When OD and I had the chat about moving in, we'd decided that I would not play a parenting role. It wasn't something I was keen on, and D3( aged 13 going on 35) had been particularly vicious to her mother's partner. OD was keen to try and prevent a second victim.

Unfortunately, that ploy didn't work. Lots of reasons why
1. I (used to ) spend more time in the family home than he does.
2. Our tidiness thresholds are VERY different. Yes- I have OCD.
3. He got cancer.

We have had numerous discussions about the kids pulling their weight with household responsibilities and keeping communal spaces tidy. I'm not going to go into huge details about that just now, but his relaxed ( read: so laidback, the man is horizontal!) approach lent to arguments.

D3 is a messy critter. It's like Hurricane Sandy- except that the chaos and destruction is in the manner of dirty cups, make up, crumbs, sweet wrappers, apple cores, tea bags. To give her credit, she has been trying harder, but inconsistently. She also has a nasty habit of being verbally abusive- more so to her father than me, but two minutes later, in her head, all is forgotten. Unfortunately, I'm not able to let go of the hurt and upset so quickly.

I'd been a little cool towards her after a particularly unpleasant outburst, but in an attempt at extending an olive branch, we engaged in some holiday fun. She's having a Halloween party, and the conservatory is a covered with bats, ghosts and pumpkins.

And the piece de resistance...

The worst thing about all the stepmothering is the realisation that I have become my mother! Ugh

Monday, 29 October 2012

The uphill challenge

There is a plan in place. The oncologist Dr P has strongly recommended chemotherapy-oxaliplatin and capecitabine. One infusion, followed by 2 weeks of oral tablets, one rest week= 1 cycle. And OD has signed up for eight cycles. He's decided to try and have treatment in B'rum so that he can continue working. The next 6 months is going to be what is going to seem like an endless cycle of chemo.

The side effects include the usual nausea, fatigue, but can also cause fairly dreadful diarrhoea, peripheral nerve changes and chest pain. The chance of hair loss and loss of fertility are not high, but still a possibility. We've had lots of supportive messages from friends and family, and the general message is usually, "Stay positive".

It's incredibly difficult to feel positive about the situation. OD has probably not had a good night's sleep since the diagnosis. It's a shame that no one has figured out how to bottle optimism up. Because I could use two of those right now.

Thursday, 25 October 2012

Glass half full.

We got the phonecall today. Ironically, I was at work, trying to recruit someone for my cancer trial. It's not the best news. We're looking at Stage IIIb colon cancer- with 5 lymph nodes involved. No lymph nodes is best, < than 3 lymph nodes is better, and."patients with one to three involved nodes have a significantly better survival than those with four or more involved nodes".

Donal is on the train to B'rum to see the oncologist. I wanted to go with him, but as it's half term, the kids are at home, and more pertinently, he wanted some time to process things.

It's ironic, because he was doing so well after his laparoscopic surgery, I was feeling optimistic. Perhaps it was an attempt to be "glass half full". Last night, I even asked him if he would consider flying to Malaysia in a couple of weeks time if he didn't need chemotherapy. Which makes it even more of a slap in the face.

The numbers are not great, five year survival rates seem to be hovering around the 40-50% mark.

Sometimes, life is a real bitch.

Monday, 22 October 2012

Attack of the killer hand mixer...

Normality is a difficult thing to achieve these days. OD and I have both been sleeping badly. He's having recurring nightmares about calamities. The worst is being told that the cancer has spread and that he needs an exenteration. Which is a horrible procedure that clears the pelvis of all organs and disease, but means a "poo and pee bag". The chances of him needing that are fairly minimal- but it's still something he's understandably freaked out about. So the weekend has been a blur of 4 am pacing and midmorning rescue sleeps.

In an attempt to function on Sunday morning, I was up at 8 am. And I decided to soothe the soul with baking. The Hummingbird Bakery Book had a delightful carrotcake recipe. I assembled the ingredients, and went to get the hand mixer.

About three weeks ago, my trusty handmixer which I had inherited from Pris had died. And I tossed it out, comfortable in the knowledge that in the big move, I had brought a new looking box containing a hand mixer that my flatmate had abandoned. It was flash looking Gino D'Campo mixer. I opened it up.  But...there were no beaters. Just these things.

 
(Dough hooks- not very good for whipping icing- note bent because of later events. Keep reading.)


The penny dropped- I'd thrown away the beaters with the old mixer. Crap!

I tried with the dough hooks- not very efficient. OD had an old fashioned manual mixer. So I gave that a shot.


 ( Hand mixer- also not great for making icing)

 It was rubbish and all the butter and cream got stuck in it. Then smarty pants decided to try and use the manically whirling electric dough hooks to remove the butter and cream.

It was disaster. I'm still not sure how this happened, but the electric mixer in my hand jumped out of the mixing bowl and got entangled in my jumper. And as it turned and whirred, it twisted my jumper creating a very effective choke-hold. For about two seconds, I thought I was going to suffer GBH in the hands of a couple of dough hooks!. Luckily the brain kicked in, and I managed to switch off the electric beast at the mains.

The kitchen was covered in butter and icing sugar.

 And I had to make cream cheese frosting by hand!

Anyway, the end result was satisfactory- but I did have OD and his sister in tears when I told them the story later. All I can say, is he's lucky I didn't die. It would have been an awkward one to explain to the police!





(The final result- I can recommend the recipe).

Saturday, 20 October 2012

Mental hygiene

OD and I both like ambling. That's the only similarity.
I like ambling around a National Trust property, looking at gardens, craft fairs, overpriced artisan foods...
He likes ambling around the Trafford Centre ( a big shopping mall).

I'm the Malaysian- ambling around malls is meant to be MY national past-time. We even came up for a word for it.."lepak".

Extract from urban dictionary.com
lepak  

1) To hang out with friends, loiter about and do absolutely nothing. Commonly used in Malaysia.
2) Chill
3) Lepaking - the act of lepak
1) "Hey Johny, do you want to lepak this weekend?"
2) "Hey Mark, lepak okay? I don't need you on my case as well!"
3) Those youngsters lepaking in the park are not from this neighbourhood.
Yes- I know it doesn't always have to be in a mall...but..details..!
Anyway, he'd voiced an interest of getting out of the house today. Brilliant. The Trafford Centre..ugh! The sun was shining, everything is crisp and autumnal. I floated some ideas...Lyme Park, Quarry Bank Mill...anything OUTSIDE.
Distinct lack of enthusiasm. Oh, well- I suppose when you have gone to the effort of getting cancer, it's only fair that you get your way occasionally. We're off to the TC.
I settled with the autumn taster of the back garden.

Friday, 19 October 2012

The death of romance

Every relationship hits a point when you're so comfortable with each other, you suddenly realise the romance is dead. Occasionally, there are extenuating circumstances that hasten this event.
Our relationship has never been particularly romantic. OD admits to not being the best at choosing clothes or jewellery. Both my birthday presents have been expensive electronics-I just have to accept that the man doesn't do sparkly things.

And then I had my little skiing escapade and ended up like this.
When OD first had to help me into the shower, I remember wailing.."Oh no, the romance is dead.."
Then there was my six weeks of non-weight bearing and having to slide up and down the stairs on my arse. Truly, I was no glamourpuss.

I visited him on Day 1 at the hospital after his operation with his sister, R. Who is not medical, and absolutely hates hospitals. So being in the colorectal cancer ward, with that faint whiff of poo was REALLY not good for her. She was rather aghast when after the first few pleasantries the conversation turned to talk of farts and bowels.

Me: So did you manage the almighty fart then?
OD: No, but I did manage a small, perfectly formed one...

This morning he very proudly announced that he had a couple of farts in bed. Nice! It seems that things on the colon and anastamosis front are working as they should. But I'll tell you now, there will be celebration when the first poo emerges!

Maybe that's what REAL romance is about?!

PS: Told you it was going to get graphic.


Thursday, 18 October 2012

Home!

OD came home today- he says that Mr C was happy for him to go, but I think there may have been an element of bullying! Pretty amazing isn't it- home on day 2 after major surgery. I don't blame him for wanting to get out of the hospital. The ward he was in was a little like God's waiting room. Imagine a cancer ward, with five other men, average age of about 100, all with the same disease- but looking like they were very much at the end of their cancer journey. Definitely not good for keeping a positive frame of mind.

We got the train back, as the traffic in and out of Birmingham is pretty awful. He'd optimistically taken a heap of work with him, and every electronic under the sun..."2 ipads, 2 iphones and a laptop". We had a slight disagreement about his ability to carry the stuff back-he of course felt he was perfectly capable, while I was worried he was going to develop a hernia. I did get my way, and felt a little bit like a pack mule. We got a taxi back from the station, and the taxi driver was a little curt. Until OD said, "I'm just back after an operation". And the man replied..."Ah, I thought you were being a bit of shit making HER carry the bags!" It was a useful discussion because he then made the effort to drive slowly over the bumps.

It's going to be an interesting few days. I remember feeling absolutely crap after my relatively minor knee surgery. Getting up, having a shower and coming down the stairs had been a major achievement. So I can imagine he feels awful- but the control freak in him is going to insist on putting on a brave face. Doctors make both terrible patients and nurses.

Oh well- I'll have to try and remove the worried look from my face and try to use the smile muscles!

Wednesday, 17 October 2012

The waiting game

Written on 16/10/2012- but unable to publish because of O2's crappy 3G coverage!

OD had surgery today. It was planned for the afternoon- so I thought " Great, a lie-in!". But who was I kidding, no one's going to get a good night's sleep before a cancer operation. He was on the production line thirty minutes before schedule- ID bracelet and bar code, then seen by ward sister, research nurse, staff nurse, student nurse, stoma nurse, anaesthetist, surgeon and finally the theatre porters. Probably the only patient bossy enough to tell the theatre porters that he'd rather walk up the stairs then wait for the lift to theatre. The tubby one did not look happy! Impressively, he managed to look boss- like, despite the stripey dressing gown, TED stockings and ridiculous bum flashing hospital gown.

We started our journey this morning with a lesson in Latin -Morituri te salutant...we who are about to die, salute you. The traditional tribute of the Roman Gladiators to Caesar. Yes- a little morbid! He's been subdued today- and finally voiced some of his fears. When we saw Mr C, we were told the risks, which included a 1-2 percent risk of death, pelvic nerve damage, incontinence and need for a colostomy bag. Pretty big things for a guy in the prime of his life to take in.

Last Sunday dinner with the kids, OD told them that there was a 1 in 100 chance that he might not survive the surgery. Sure, he'd been positive about outcomes, and blase- and the justification was " I didn't want them to say that nobody warned them". Which I think is a good thing. He has a "no secrets" policy. It did mean that he had tearful phone calls from daughter 1 and daughter 3 just before surgery- which made him a little teary. There was also an outpouring of affection and good wishes from all his friends, colleagues and family.

Anyway- off he went. And I had to occupy myself. Waiting is my LEAST favourite thing. One of the reasons I find a labour ward shift stressful. I find it difficult not to obsess about the worse case scenario. Bit hard not too, after having the risks explained again. I'd brought some work with me- but it was a really long 3 hours. I did have a pleasant, distracting 40 minutes catching up with an old friend discussing our garden plans, and the best vegetable crops for the wet weather of the UK!

OD was back by 1650, a little zonked on the morphine PCA but in reasonable spirits, apart from announcing to everyone who would listen, that he needed a REALLY big fart, but it wouldn't come out. Disinhibition by morphine! The initial outcome has been has good as can be expected. Surgery was quick, apparently, only about three red cells were spilled! All done key -hole, and Mr C seemed happy that the disease was confined to the bowel. 

The surgery waiting game is over. Now there's just the wait for the pathology and the recovery. Fingers, toes and everything else crossed. 

Counting Down

Written on 13/10/2012

One of the many reasons that Cancer sucks is that a lot of the treatments make you feel dreadful. I only have a theoretical knowledge, but chemo and radiation conjure up ideas of horrific side effects.

And while surgery is necessary and can be curative, some of the healthy tissue nearby needs to be removed, or is damaged. And with pelvic surgery, there are lots of important structures including nerves that control the boy bits. I heaved a big sigh of relief, when Mr C said that he was hopeful about being able to avoid the pelvic nodes. We talked about risks of sexual dysfunction (ugh!), and were quoted 30 percent chance. With the caveat that about 30 percent of men have issues in that area anyway..so ! OD was very quick to pipe up during the consultation that " I've never had problems in that department apart from in the last week...". Whoops, obviously missed my cue there to wax lyrical about his prowess at bedroom acrobatics!

Something else that freaks me out about the prospect of chemo/rad is the effect on his little swimmers. When we planned a long term future, I had always made it clear that I might want children. I freak out about the impact it will have on my career and lifestyle, but there are certain other appeals. One of the best and worst things about OD is the relationship he has with his kids. I very often feel a little left out or even jealous when they are reminiscing about their childhoods and family" in jokes". He's one of those approachable dads, who is sometimes so laid-back, he's horizontal. Very unlike my "tiger-mother"!

Anyway- this is obviously something that I don't have control over- all the cancer advice is to "Not sweat the small stuff...". Fretting about it probably doesn't help..but I am, just a little!

Friday, 12 October 2012

Priorities

OD and I went to meet the colorectal surgeon, Mr C yesterday. We had to make the journey that is his daily commute. Frankly, I don't know how he can face the journey EVERY day (two trains and a bus). We were frightfully early, and went to the canteen to have lunch. OD used to be a senior manager in this hospital, and it was entertaining watching him "holding court" with a variety of consultants. He'd left the job 6 months ago, but they were still moaning about this , that and the other- NHS reforms, waiting times, unsafe understaffed departments etc. I kept wanting to say..."Err...he doesn't work here anymore, and he has cancer...go away".

We then saw the surgeon and the cancer nurse specialist. The news was reasonable, rectosigmoid tumour, early T3, no nodes or metastases. The surgeon seemed positive, and the aim is for a laparoscopic primary resection. He seemed almost blase about chemotherapy postoperatively. There was some debate about the date for surgery, Mr C was keen for Tuesday- there was a good anaesthetist on.."I'd want her to gas me..". OD has "a really important work meeting" on Wednesday. I think I was remarkably restrained- I didn't voice my opinion about priorities, but I did give him a very firm nudge. The decision has been made for Tuesday, but OD is in totally overdrive trying to organise stuff at work- we were barely out of pre-admission before he was on the phone scheduling additional meetings.

You always hear about how a life-changing event like cancer makes you re-evaluate your priorities. OD and I have had the argument before about priorities. I always thought I was dedicated to my job, but hell...if I was having a cancer op, I don't think I'd be worrying about work! Perhaps it's different when you're a leader of an organisation, particularly in a fairly new role. I guess he needs to lay foundations, to make sure that the "peasants" don't revolt when he's away. It'd be pretty rubbish to survive a war, to arrive back at the castle, and find someone else on your throne!

There's likely  a psychological need to keep control, and normality, and make long term plans. And being at work keeps him focused. I received some good advice to let "OD set the pace to allow him the best frame of mind for recovery". So I guess I'll just have to back off right now, and let him do things his own way. The control freak in me is NOT happy.


PS: Maybe he does have his priorities right- I wasn't expecting him home until 10pm because he had an all day event with the high and mighties of the organisation. But actually, it's 1930 and he's home. Full of beans, because it seems like all the loose ends are being tied at work and he got two rounds of applause! Frankly, if it means he's going to be focused and bring his A-game to the cancer playing field, I'll be happy.

PS2: Thanks for all the support guys.

Tuesday, 9 October 2012

Brothers and Sisters

I recently discovered a drama series called "Brothers and Sisters". It's essentially about a big dysfunctional family of grown up children and their mother. Weirdly enough, I could see a few similarities in the story lines and my life. A situation, where one brother was infertile, and used his brothers as sperm donors, the difficulty of being the outsider when faced with a very large, affectionate bunch of siblings ( OD has four brothers and five sisters) etc.

The last episodes I watched featured Kitty, the lead character finding out she has lymphoma. Poignantly, OD was in the room when this emerged, and he said, "If I have cancer, I'd like lymphoma!". Then he walked out. Lymphoma has a high cure rate. He's never really watched the drama with me. I think the similarities of the dysfunctional family freaked him out too much.

The news from the colonoscopy was not good. OD has rectal cancer. We have no idea how advanced it is and what the treatment options are yet. He has an MRI and then a discussion with a MDT. On Thursday, we find out whether we're dealing with pre-op chemotherapy and radiation ( chemo/rad) , followed by surgery, or surgery and post-op chemo/rad.

The last 72 hours have been a blur. By happy coincidence, my Dad had come to visit. And he was here when I got the phonecall from OD. There's no hiding from the fact that I was a complete mess. OD was holding things together- and I do feel selfish, because my lack of composure is probably contributing to his stiff upper lip approach.

He did however speak to his sister, and that was an opportunity for him to emote, and grieve as he needed to. I'm not going to say he's lucky- because frankly, cancer doesn't make the "lucky" list. But he is fortunate, to have the large, supportive family around him. He's been inundated with phone calls, and we're going over to Ireland at the weekend for a fĂ©asta. It will be a chance for him and the kids to bond with siblings and cousins.  There has already been talk of various visits from his brothers and sisters.

This blog was started very recently, as a means of dealing with my issues of blended families, inherited teenagers and laboratory stresses. It's still going to feature those things, but there's going to be a definite undertone of cancer.

I certainly didn't get a choice in this personal drama. But I'm going to have to hang on to the belief that "Everything is going to be alright in the end, and if it's not alright, it's not the end".



Friday, 5 October 2012

The Big C..

This blog was meant to be written in chronological order. But life has a habit of whacking your plans and ideas right out of sync. So back to real time.

I was at work yesterday- and I had a missed call from OD. My spider senses were a-tingle immediately. He NEVER calls me at work. There was a cryptic message on my voice mail..."...any chance you could give me a ring when you pick up this message, I just need to have a quick chat about something".

There was a little bit of awkward preamble- but I knew something was up. And then it came out in a bit of a rush."...met my surgeon today....been having altered bowel habit for a while....he wants to perform a colonoscopy tomorrow.....didn't want to worry you....."

The problem with medical school is that it gives you a very warped view of the world. That's what happens when you surround yourself with sick people. I KNOW that altered bowel habit does not mean bowel cancer. There are loads of other things it could be. OD's been stressed at work. The kids have been having teenage dramas..things with us have been rocky. It could be irritable bowel syndrome. Simple, bog-standard ( pun intended) IBS. His diet isn't great- it could be diverticular disease. Both benign. Very treatable.

But both he and I were thinking of the big C.

He's been sensible. He listened to the health promotion advice on Classic FM. He's lucky. Once he'd had the chat with the friendly surgeon, the definitive investigation was organized for less that 24 hours. He's obviously been concerned about this for a while, but didn't want to tell me. I have a tendency to fret.  In about four hours, we'll know what we're dealing with. But the last 24 hours have been dreadful.

And while I wallow in my own anxieties- I can't help thinking about all the other patients who don't have access to a friendly surgeon. Who have to wait for a tertiary referral. Who have to wait for imaging. Who have to wait for results. And it makes me mad- that even when we have results in front of us, we ( the NHS) are so inefficient at informing patients about their results. It makes me even more annoyed when I think of the results that get lost on someone's desk under a pile of paperwork. We sometimes forget that the result that needs to be "actioned" amongst the million other things that we need to do, is the result that someone is spending their every waking moment thinking about.

The next time I do a test on someone, I'll think twice before being blase and saying, " It'll take a couple of weeks..". Because a couple of weeks can be a very long time.

Wednesday, 3 October 2012

Stranger Things Have Happened...

OD and I have been "in a relationship" for more than 18 months now. It even says so on Facebook- so it must be real. A couple of days before I agreed to meet him in Edinburgh, I began to panic. We hadn't discussed overnight arrangements. He was getting the train up, arriving at 6 pm. Obviously he was staying overnight. But where?

I certainly didn't want him staying over. Surely he wouldn't expect to. But being totally neurotic, I didn't feel I could just ask him. And if he didn't have anywhere else to go, I couldn't very well leave him on the streets. Could I ? It was Edinburgh in winter. There was snow on the ground. So- I geared up to tell him to find his own bed for the night. But I also changed the sheets in the spare room. Just in case.

And then, I realized that I hadn't booked somewhere for dinner. It's surprisingly difficult to get a reservation in Edinburgh on a Saturday night. After some frantic texting, he ended up booking a table. Now, a man managing to book a table in a restaurant should not be a huge achievement- but my last significant relationship had been with a pathologically shy guy. So, someone taking charge, was really attractive. Amidst the texts was one that alleviated the anxiety levels.

OD: Will check into my hotel and meet you at 1830.

He'd booked a hotel! Hurrah!

I put on my glad rags. I'd never met a strange man in a hotel lobby before so I was a teensy bit anxious. But he was sitting there, waiting. And he was wearing a pale green jacket. Yikes!

After a brief hello,  I suggested we walk out and grab a taxi to our next destination.I sauntered out, making awkward chit chat, trying to come across as worldly and nonchalant. I promptly slipped and landed on my arse.

The hotel was on Carlton Hill, so there was a fairly steep descent to Leith Walk. Despite wearing sensible flat boots, the slimy slushy snow and my natural clumsiness had collectively sabotaged me. Luckily nothing but my pride was hurt.

To cut a long story short, we carried on to the restaurant. The conversation was occasionally stilted. At a much later date, when we discussed it, he'd felt like he was lecturing a junior trainee ( which is what I am), and I thought I was being interviewed. The folded arms, defensive body language. It wasn't good. I managed to order a truly disgusting meal- but forced it down. After all, falling on your arse is a major strike.

It should have ended with an awkward good night, and never seeing each other again.

Instead, we ended up in a bar. With a giant statue of an angel. Yes- an angel, God's messenger with outstretched arms and an admirable wing span. We had a couple of drinks.  I flirted a little. And then he said..."God, you're so young..but stranger things have happened..".

And there, in the Cameo Bar, under the shadow of a very large celestial being, we kissed.

New Beginnings..

 In 2010, I decided to try the online dating thing. Again. But this time, I was really going to make an effort. And so I did. I went on dates- with frogs. Well, maybe they weren't all frogs. And I didn't go on THAT many dates. In in the first week  of 2011, I went on a date with AW. He was a recently divorced architect- we'd been emailing for a while, and we met for a first date. It was a good choice- a posh pub in Edinburgh's New Town. The food was good, and the conversation flowed. It was a good 'un, as first dates go.

A couple of days later, AW called and invited me on a second date-the National Gallery of Modern Art, and then dinner at his. I was impressed- it was a great second date- he could talk about modern art and popular culture. He baked chocolate brownies ( dusted with icing sugar, and garnished with mint!) and there was a physical attraction.

I thought it was going well. I'd lent him one of my favourite books! And then we had the unpleasant phone call. The one that I should really have been prepared for...but wasn't. He had been seeing two people, and he'd decided to pursue things with the other girl. I'd lost. I could say, I was devastated. I wasn't, really. Yes, my pride was injured and I'm sure I ranted about him and all men for a little while. I thought I was DONE with online dating. ( I am fully aware that "two-timing" is not solely restricted to the internet acquired male).

And then, up popped a message. Yes- I'd been guilty of it too ( to a lesser extent). I'd exchanged emails with someone else. Something I hadn't planned on pursuing too enthusiastically. He was much older, separated and had baggage. Teenagers. Lots of them. And he lived in the soggy North West. Couldn't be more unsuitable.

I had been intrigued-he worked in hospital management. Why would any surgeon want to work as a...MANAGER! Bearing in mind, most of my encounters with lower level management had been frustrating discussions about bed blocking and discharges!

He was also pro-active.

My online dating experiences had usually been precluded by multiple emails before "real-life" contact. I wasn't very good at "following through". But before I knew it, I'd agreed to dinner on a Saturday night...

PS: AW sent me my book back in the post.


.

Cathartic or self-indulgent?

Or merely another means of procrastination?

When starting any new job, you're bombarded with information leaflets and helpful suggestions. During my "Speed PhD" session, one of the leaflets was about the "connected researcher". All about the importance of disseminating your findings and communicating with other members of the research community. It seemed like a very good idea. However, I'm now in month 4 of a three year PhD- and I don't have squat!

Not even one measly result. I have managed to infect the first batch of cancer cells that I am supposed to growing as part of an experiment. Yup- the first thing I saw this morning down a microscope, instead of happy healthy cancer cells ( yes..that's a total misnomer) were millions of teeming bacteria! You can almost hear all the post docs say...here comes Typhoid Mary.

So...this isn't going to be about the dissemination of results. It's probably not going to be coherent. But, at least I'm writing. Putting one word..after the other and occasionally getting the punctuation correct.